Living on the frontlines

The Wrath of Dr. Khan: ER vs Medicine

2012-01-26T15:37:00.001-06:00

Just in case you need a little smile today.

Study Abroad opportunity for blind/low vision youth 18 to 24

2012-01-26T14:58:00.000-06:00

This is another peice of information I'm just posting in case anyone is interested:

Dear Colleagues & Friends,

Please RSVP to Dawn Suvino at 646.486.4444, extension 14 or dsuvino@visionsvcb.org for reservations not CCVIP.

Enjoy!
Thank you,
Lisa Saunders

Attention NYC Young Adults with Disabilities
VISIONS and Mobility International USA
Invite you to kick-off Summer 2012 in Madrid, Spain!

INFORMATIONAL SESSION
Monday, January 30th
6:00 – 8:00 PM
At VISIONS at Selis Manor (135 W. 23rd Street)
Find out how you can be part of a 10-day leadership program with Mobility International USA (MIUSA) this summer.

Hear from blind participants who have traveled the globe with MIUSA from Costa Rica to Bahrain and beyond!

Applications will be available & representatives from MIUSA will be on-hand to answer your questions.

Program is open to NYC residents with disabilities ages 18 – 24

Generous scholarships available
Please RSVP to Dawn Suvino at 646.486.4444, extension 14 or dsuvino@visionsvcb.org.

Parents and other family members, teachers, rehab counselors are welcome to attend.
Light Refreshments will be served.

Opportunity for blind/low vision youth 12 to 16 years old

2012-01-26T13:20:00.000-06:00

This is information I am just passing along for anyone who might be interested:

The National Federation of the Blind Announces the 2012 NFB Leadership and Advocacy in Washington, D.C., (LAW) Program

Engaging the Voice of America’s Blind Youth

April 13-18, 2012

The NFB LAW program provides blind students with a unique opportunity to explore the inner workings of our country’s government, its history, and its culture. In addition to learning about the history of the organized blindness civil rights movement, how resolutions are passed, and how blindness legislation is created, participants will become familiar with advocacy work for blind individuals and available resources for blind students and adults. Highlights of the program include: visits to historical sites in Washington, D.C., meetings with influential government leaders, and presentations by prominent leaders in the National Federation of the Blind. Read more about this chance of a lifetime in the Summer 2011 issue of Future Reflections.

Twenty-four students (grades six to nine, or ages twelve to sixteen) will be accepted for the LAW program. All accepted students must be accompanied by a parent/guardian, teacher, or blind/low-vision mentor from their home state. There will be a $250 fee per student/chaperone pair. Transportation, room, and board will be provided for students and chaperones.

Apply now by going to www.nfb.org/LAWProgram. Applications are due by February 1, 2012. For more information, call (410) 659-9314, extension 2312, or e-mail Natalie Shaheen at nshaheen@nfb.org.

Tours for the blind/low vision at the New York Natural History Museum

2012-01-26T13:15:00.000-06:00

This is info that was sent to me - I'm just passing it along:

Science Sense Tours

Visitors who are blind or partially sighted are invited to attend this program, held monthly in the Museum galleries. Specially trained Museum tour guides highlight specific themes and exhibition halls, engaging participants through extensive verbal descriptions and touchable objects.

Science Sense is free with Museum admission.

Saturday, February 11th, 10:00 AM

Dinosaurs

Join our guides on a paleontological adventure through the Koch Dinosaur Wing.
Science Sense tours are available to individuals or groups.

Space is limited and advance registration is required.

Programs may be subject to change.

For additional information or to register for a Science Sense tour, please call (212)313-7565 or email accessibility@amnh.org

Recent craft projects

2012-01-25T16:20:00.001-06:00

These are photos of some recent craft projects. The red frame is already spoken for - but I'm asking $12 (including shipping in the US) for the two eggs together, and $12 (including shipping in the US) for the picture frame. If you'd like more info, just get in touch.

The benefits of art therapy

2012-01-25T16:14:00.001-06:00

I have done artwork since before I could walk.

My mom was an art teacher in her first career. She wanted Ryan and I to be creative, so she started early. She would buy rolls of newsprint paper and spread them out on the floor. Then she'd put us on the paper with big jumbo crayons.

Ryan didn't take to art. I loved it.

These days I don't get to paint as much as I'd like. I'm always behind on things that just seem more important than my own personal entertainment.

But when I get to feeling too overwhelmed, somehow the painting helps. It's therapy.

When I was in the drug trial for Hermansky-Pudlak Syndrome at NIH, waiting for test results always made me anxious. I always packed watercolors and painting helped to pass the time. It helped me think about something besides how life would change if the results weren't good.

Today I saw this article through a newsfeed I get regarding bleeding disorders. I loved the article and thought it was great!

It's about how art therapy can benefit anyone dealing with acute or chronic illness.

http://www.hemaware.org/story/creative-treatment

Scholarship opportunity for an undergrad with albinism

2012-01-24T15:39:00.000-06:00

I just got this e-mail from NOAH - the National Organization for Albinism and Hypopigmentation. I'm am thrilled to pass it along!

NOAH's Michael J. McGowan Leadership Scholarship Award

2012 Application is now Available!

--------------------------------------------------------------------------------

The Michael J. McGowan Leadership Scholarship Award was established in 2008 on behalf of the National Organization for Albinism and Hypopigmentation (NOAH) to recognize leadership and empower young people with albinism. NOAH will award one scholarship annually to a NOAH member with albiism residing in the U.S. or Canada who is enrolled in an undergraduate program at an institution of higher education in the U.S. or Canada. The intent is to enhance educational opportunities for students with albinism while celebrating dedication and outstanding leadership qualities similar to those exhibited by NOAH's current and past leaders. The 2012 scholarship award will be $3,000.

--------------------------------------------------------------------------------

To apply, complete the online application then submit the following:

•Your personal statement (500 words or less)

•An eye report documenting a diagnosis of albinism

•At least two (2) letters of recommendation from non-family members

•Your academic transcript (including SAT/ACT scores, if applicable)

•A letter of acceptance to or proof of enrollment at an institution of higher learning

--------------------------------------------------------------------------------

Application materials for the 2012 McGowan Scholarship must be RECEIVED by May 1, 2012.

Send all application materials to:

NOAH McGowan Scholarship

PO Box 959

East Hampstead, NH 03826-0959

Fax: 800-648-2310

Email: scholarship@albinism.org

--------------------------------------------------------------------------------

Please contact NOAH's Scholarship Committee with any questions at scholarship@albinism.org or 800-473-2310 (U.S. and Canada).

Applicants will receive notification of the award committee's decision on or around June 1, 2012.

--------------------------------------------------------------------------------

PFTs

2012-01-22T21:53:00.002-06:00

I’m thrilled to report that my pulmonary function tests yesterday were largely unchanged! Yippee! I’m particularly thrilled because honestly, I felt terrible. I’ve been having a lot of GI problems the last two weeks. Thursday and Friday my body had finally had enough. If I did that well feeling so yucky and weak, then I’m in good shape.
When pulmonary function tests come back okay, it’s a great sense of relief. During the last year I’ve watched many of the people I was in the drug trial with decline. Nancy got her lung transplant, and Elsie needs one ASAP. Several others are being evaluated. I have to admit, it makes me nervous. We were all in the same boat not that long ago.
While I wasn’t expecting any bad news, there’s a part of me that fears the moment I let my guard down, the moment I’m not expecting the bad news, will be the time I learn the pulmonary fibrosis has been creeping up on me.

Registration forms are now available for the 19th Annual HPS Network Family Conference

2012-01-16T14:27:00.002-06:00

Registration forms are now available for the 19th Annual HPS Network Family Conference in Uniondale, New York (March 16 – 18, 2012). The forms are currently being mailed to members who have up-to-date contact information in the Hermansky-Pudlak Syndrome patient registry. If you’d prefer to download the form, you can find it at: http://www.hpsnetwork.org/en/events/2012-03-16/19th-annual-hps-conference.

You can also pay online at the HPS Network store at: http://www.hpsnetwork.org/en/store

Resource for those with bowel disease

2012-01-14T19:09:00.000-06:00

The Crohn’s and Colitis Foundation has set up an online archive of Webinars about living with bowel problems. Many of the Webinars are available in English and Spanish. While CCFA does not provide any information about Hermansky-Pudlak Syndrome (it would really be nice if they would as for us, it can literally be life and death), you may find a lot of useful information here. Please consult with your own physician who understands your HPS before making any changes to your care. Here’s the link: http://www.ccfa.org/info/webcasts

Redbox sued over access for visually impaired

2012-01-14T15:03:00.000-06:00

This article came to my attention and I thought some of you would like to read it. This is a growing problem for people with vision impairments. While, as a person with albinism, I can see some of the touch screen technology well enough to use it, there are some I find very difficult to use as well. My blind friends (and sometimes myself) find that as this technology increases in usage, it can be limiting to our independence.

Personally, when companies use this technology in this way, it's the same thing as setting up a brick and mortar building but making the doors so that a wheel chair can't get through - something that hasn't bee legal in this country since 1992.

It's never desirable to have to make a court case out of such things, but I fear it will take a number of cases like this to get corporate America's attention.

My biggest pet peeve are ATM machines. When I'm dealing with my money, I don't want to guess that I'm pushing the right buttons, and I don't want to have to ask anyone for help. It's private!

I can see most ATMsl, yet it irritates me that several ATMs in my neighborhood have been replaced recently with no attempt to make them more accessable to the blind.

Okay, stepping off the soap box now.....

Here's the article for those who are interested:

Redbox sued over access for visually impaired

A San Francisco group that advocates for the visually impaired on Thursday sued a company that makes DVD-rental kiosks and the grocery store chain that hosts them, alleging that they discriminate against blind customers.

The group Lighthouse for the Blind and Visually Impaired said the touch-screens on Redbox rental kiosks, which can be found on the premises of many Bay Area Save Mart and Lucky stores, make it impossible or difficult for visually impaired customers to use the kiosks.

Read the entire article at:
http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/01/12/BA0F1MOO29.DTL

Sprint Droid phone accessability for the blind/visually impaired

2012-01-12T12:50:00.000-06:00

This is a press release I'm passing along for anyone interested:

Sprint to Offer Mobile Accessibility Application, Developed by Code Factory, for Free to Customers Who are Blind or Have Low Vision

Mobile Accessibility application and new Accessibility Sprint ID packs make smartphone usage more accessible for Sprint customers

Sprint to Offer Mobile Accessibility Application, Developed by Code Factory, for Free to Customers Who are Blind or Have Low Vision

Mobile Accessibility application and new Accessibility Sprint ID packs make smartphone usage more accessible for Sprint customers

OVERLAND PARK, Kan., Jan 09, 2012 (BUSINESS WIRE) -- Sprint /quotes/zigman/240259/quotes/nls/s S +2.17% is offering customers who are blind or visually impaired, as well as elderly individuals or those who cannot read print on smartphones because of physical, perceptual, developmental, cognitive or learning disabilities, free solutions that will provide them easier access to their Android-powered smartphone's functionality. The solutions include five new Accessibility Sprint ID packs -- bundles of applications available on select Android-powered smartphones -- and the Mobile Accessibility suite of applications.

Mobile Accessibility, developed by Code Factory, is a suite of accessible applications that have been specifically designed for people who are blind or visually impaired. Mobile Accessibility, which features a simplified user interface and textual information that is spoken aloud using voice synthesis to aid navigation of the device, will be offered to Sprint postpaid and Boost Mobile prepaid customers through the Android Market for free starting this quarter.

The application is available for free for postpaid Sprint customers with Android-powered smartphones activated on a monthly service plan that includes data, such as the Everything Data plan starting at $79.99. The app is also free for no-contract customers with Android-powered smartphones on Boost Mobile's Monthly or Daily Unlimited plans.

The application, which typically costs $99, will be available in English and Spanish in the Android Market under the names Sprint Mobile Accessibility EN & ES and Boost Mobile Accessibility EN & ES.

"Sprint strives to satisfy all our customers' wireless needs, and with solutions such as these, we're helping our customers with disabilities realize the full potential of their smartphones," said Fared Adib, Sprint vice president-Product Development. "That is why we're offering the Mobile Accessibility app and Accessibility ID packs free of charge."

"Code Factory is delighted that one of the most important carriers in the world decided to subsidize Mobile Accessibility for their customers and is helping to assure that the product reaches as many people as possible at no cost for them," said Eduard Sanchez, Code Factory CEO. "We are proud to be a new partner with Sprint and hope this is the start of a longtime relationship for accessibility for blind and visually impaired Sprint customers."

The main features of Mobile Accessibility:

-- Touch navigation: Users can simply move their finger around the screen and the voice synthesis will read the text located under their finger. They can swipe up/down/right/left and tap on the screen to navigate through the interface, and they can enable sound and vibration feedback.

-- Easy to input text: In or outside the Mobile Accessibility suite users can use the touch QWERTY keyboard or speech recognition to write text quickly and easily -- making it possible to write an SMS or email using their voice only.

-- Voice synthesis: Provides customers natural sounding voice read back.

With Mobile Accessibility, users can do the following:

-- Phone: Make calls, answer calls, hear the caller ID and manage their call log.

-- Contacts: App tells user how many contacts they have and speaks the contact's name they selected.

-- SMS: Virtual keyboard is larger and fills the entire screen. When the user clicks a letter on the keyboard, the app reads the letter to them. This makes it easier for them to compose emails or SMS messages. It also reads SMS messages to the user.

-- Alarms: Set their alarms.

-- Web: Full Web browser experience; also reads text from Web page to the user.

-- Calendar: Create, edit and delete a calendar entry. View all events per day, week or month.

-- Email: Full access to Gmail accounts; reads emails to the user.

-- Where am I?: GPS application that gives the user an update about their current location.

-- Access to basic phone functions, such as date and time, missed calls, etc. User can click on the function and it speaks to them.

"Having the ability to gain greater access to information on smartphones through the use of a free suite of applications is a very positive development in the blind community's quest for more affordable choices," said Mitch Pomerantz, president of the American Council of the Blind (ACB). "The American Council of the Blind commends Sprint for its willingness to take another positive step toward full product accessibility."

Accessibility Sprint ID packs:

Today Sprint is launching five accessibility-themed Sprint ID packs, developed by Apps4Android, which are bundles of applications designed to accommodate the access needs of Sprint subscribers with print disabilities -- people who are unable to read standard printed material, including text on their smartphone, because of blindness, visual disability, physical limitations, organic dysfunction or dyslexia. For more information about the Accessibility ID packs, read today's press release.

About Sprint Nextel

Sprint Nextel offers a comprehensive range of wireless and wireline communications services bringing the freedom of mobility to consumers, businesses and government users. Sprint Nextel served more than 53 million customers at the end of 3Q 2011 and is widely recognized for developing, engineering and deploying innovative technologies, including the first wireless 4G service from a national carrier in the United States; offering industry-leading mobile data services, leading prepaid brands including Virgin Mobile USA, Boost Mobile, and Assurance Wireless; instant national and international push-to-talk capabilities; and a global Tier 1 Internet backbone. The 2011 American Customer Satisfaction Index showed Sprint is the #1 most improved company in customer satisfaction, across all industries, over the last three years. Newsweek ranked Sprint No. 3 in its 2011 Green Rankings, listing it as one of the nation's greenest companies, the highest of any telecommunications company. You can learn more and visit Sprint at www.sprint.com or www.facebook.com/sprint and www.twitter.com/sprint .

About Code Factory

Founded in 1998 with headquarters in Terrassa (Barcelona), Spain, Code Factory is the global leader committed to the development of products designed to eliminate barriers to the accessibility of mobile technology for the blind and visually impaired. Today, Code Factory is the leading provider of accessible mobile applications such as screen readers, screen magnifiers, and Braille interfaces. Code Factory's products are compatible with the widest range of mainstream mobile devices running on Symbian, Windows Mobile, BlackBerry Smartphones, and Android. Among Code Factory's customers are well-known organizations for the blind such as ONCE in Spain, and carriers Sprint, AT&T, Bouygues Telecom, SFR, TIM and Vodafone.

SOURCE: Sprint

Health update: CT scan

2012-01-11T22:18:00.000-06:00

This past Monday I went to have an annual CT scan of my lungs. At my age, it’s routine for Hermansky-Pudlak Syndrome. I’m almost afraid to say it where anyone can hear, but I really haven’t felt much trouble in the lung department. I even managed to avoid the usual respiratory infections I get like clockwork in November/December.

Maybe not being around as many people helps.

I don’t yet have the results from the CT scan. I probably won’t for a few weeks.

This time, however, they had me do something a bit different than other CT scans I’ve had before. They had me breathe in, then breathe out, and then hold my breath. In the past it’s been breath in, and hold it.

Well, when there isn’t any air in your lungs, it really is hard to hold your breath for very long! It seemed like forever until the voice from the other room commanded “breathe.” I was turning blue!

I’m not sure if this was how it was supposed to work, or if the tech was forgetting to tell me I could breathe again. I must confess I never got to “breathe” without already taking it upon myself to take a little air. I couldn’t help it.

The Help

2012-01-11T22:11:00.000-06:00

Mom and I watched this movie over the Christmas holidays. It’s one of the best movies I’ve seen in some time. The story is about a writer, a young white woman, who sets out to tell the stories of the African-American maids that inhabit her world. It’s no small task. She must gain their trust, and guard their stories.

While the film has very serious themes, it is also quite funny in places. It’s pretty family friendly. I don’t remember anything too much in the way of anything rude. If it’s there, it was so small it didn’t register in my memory. Small children would probably find it boring, but older kids would not only learn something from the story, but be entertained by the humor as well.

It isn’t yet available for instant play on Netflix, but you can order the DVD.

I give it five out of five spoons!

Pompeii: Back from the Dead

2012-01-11T22:06:00.000-06:00

Most of my friends and family know it. I’m a Netflix addict. They really ought to give me a commission because even through the recent turmoil, I’ve been a huge fan. When I lost my job in 2008, it was a cheap way to still have at least some entertainment. (I had to cut expenses and so got rid of the cable TV.) After two months at my mom’s with 100’s of channels, honestly with the exception of a handful of international news channels from abroad – I’m not missing much at all. In fact, I’ve developed a real hatred of commercials, once I’m past the first day and the novelty has worn off. Grin!
At any rate, I also love documentaries. Since I was a kid I’ve been fascinated by the story of Pompeii. It might seem a bit dark, but Pompeii provided such an amazing historical record – a flash in time. Living in Europe, we visited several Roman ruins, but none like this.

This particular documentary “Pompeii: Back from the Dead” tells the stories of 54 inhabitants that all found refuge in a cellar. The ashes did get to them, but they were preserved in a way others weren’t. It’s a very interesting documentary. I give it four out of five spoons!

Hotel room block is open for the 19th Annual HPS Network Family Conference

2012-01-11T18:07:00.002-06:00

The hotel room block is now open for the 19th Annual HPS Network Conference in New York. The hotel rate is $139.00 a night. The rate is available for Friday to Sunday night. Make your hotel reservations now to ensure you get the best rate possible. You may contact the hotel at:

Long Island Marriott Hotel & Conference Center

101 James Doolittle Boulevard

Uniondale, New York 11553 USA

Phone: 1-516-794-3800

Fax: 1-516-794-5936

Sales: 1-516-794-3800 ext. 6800

Toll-Free: 1-800-832-6255

NCATS included in NIH budget

2012-01-11T14:29:00.000-06:00

This is a news item from the Genetic Alliance policy bulletin. The NIH got a very modest funding increase, but this is good news in that so many other government agencies didn't get anything, or were cut. The increases will pretty much take care of inflation etc. But, half of the increase is going to fund NCATS, a program the HPS Network has joined with other groups to encourage. NCATS stands for National Center for Advancing Transitional Sciences. In other words, they're looking for ways to get research from it's early stages into clinical trials faster. It's unlikely HPS or CHS will be one of the first diseases they look at, but in the bigger, long-term picture, we'll benefit from some of the new ideas and methods that come out of this.

NIH Funding Includes Creation of NCATS

President Obama signed the 2012 omnibus spending bill into law on Friday, December 23, 2011. The $915 billion bill, which generated passionate debate in Congress, increased spending for several science agencies, including the NIH (National Institutes of Health). The 2012 budget for the NIH will increase by $299 million compared to last fiscal year – to $30.7 billion – with almost half the entire budget going towards the creation of the new National Center for Advancing Translational Sciences (NCATS). NIH Director Francis Collins recommended this center last year, with the increasing importance of promoting translational research – it will replace the National Center for Research Resources (NCRR).

Appell performs at Glenn Cove High School

2012-01-09T17:19:00.002-06:00

Ashley Appell was a guest soloist at the Winter Festival of the Performing Arts at Glen Cove High School on Long Island in December. Appell was asked to sing at the event after members of the Select Chorale participated in the 10th Annual HPS Network Christmas Concert fundraiser. The 50 member chorus provided back up for Ashley Appell and Mervin Hernandez (on the sax) at the event.

The HPS Network was also able to sell the newest Christmas CD “A Very Merry Christmastime” at the High School’s Winter Festival. Sales of the CD that night raised more than $800 for the HPS Network. The school also held a 50/50 raffle in honor of the HPS Network at the concert. The winner donated his winnings back to the HPS Network, an extra special holiday gift to those affected by HPS.

More Seattle pics - because I just can't help it!

2012-01-05T23:54:00.000-06:00

Members of NWBAR attend special screening of RARE

2012-01-05T20:31:00.002-06:00

Members of the Northwest Association for Biomedical Research (NWBAR) attended a special screening of the documentary RARE on Dec. 13, 2011 at Kakao Chocolates and Coffee in Seattle. A half-hour version of the hour-long documentary was shown, followed by audience discussion and a question and answer period. Heather Kirkwood, Vice President of the HPS Network, was on hand to speak about living with Hermansky-Pudlak Syndrome, experiences participating in a clinical trial and the film.

Attendees included research scientists, medical personnel of all sorts and members of other patient advocacy groups. After watching the film, the audience was encouraged to discuss the ethical implications of patient advocacy groups helping to promote awareness and participation in research studies. The audience asked lots of questions about HPS, Coffee, wine, cheese and cookies were served. About 40 people attended the event.

The HPS Network is working with the film’s producers to hopefully organize similar events in other cities in the future.

HPS’ers and CHS’ers urged to participate in Hands Across America

2012-01-05T20:29:00.002-06:00

February 29th is International Rare Disease Day, a special day set aside across the world to bring attention to the experiences and issues facing those with rare disorders (affecting 200,000 or fewer people.) As part of this initiative, the National Organization for Rare Disorders is organizing a national online photo gallery of those with rare disorders.

To participate, you need only take a photo of yourself (or your child) holding the Rare Disease Day logo (downloadable at the link below). Then, go to the link below and upload your photo. Fill out the form identifying you (or your child) as a person with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome.

http://rarediseaseday.us/meet-the-community/handprints-across-america-gallery/

Opportunity for teachers of the visually impaired

2012-01-02T18:29:00.002-06:00

Another item from my e-mail I'm passing along for anyone interested.....

The agenda is now available! www.nfb.org/tls

The National Federation of the Blind understands how important it is for teachers working in a low incidence field, like blindness, to find opportunities to collaborate and network. In an effort to foster learning, interaction, and community, the NFB is hosting the first-ever Teacher Leader Seminar! During this three-day conference, teachers will have the opportunity to learn, grow, and meet other professionals. This conference will include learning sessions and Make and Takes, networking with other teachers and professionals, and best practice and technology discussions. Teachers will have the chance to influence the content of sessions and lead discussions. Participants are strongly encouraged to take advantage of social media before, during, and after this seminar to stay in contact with each other and teachers in the field.

The National Federation of the Blind Jernigan Institute is collaborating with the National Organization of Professionals in Blindness Education to hold this Teacher Leader Seminar on January 27-29, 2012 in Baltimore, MD. This conference is open to teachers of blind students, orientation and mobility instructors, classroom teachers, students in graduate programs and all other blindness professionals. Registration cost is $100 dollars and includes meals during the program. The first fifty teachers to register will be offered on-site accommodations. Please register at www.nfb.org/tls. The agenda is now available! www.nfb.org/tls

If you have any questions please contact Emily Gibbs, Education Program Specialist at (410) 659-9314 ext. 2407 or e-mail egibbs@nfb.org.

Emily Gibbs M.Ed NCLB

Education Programs Specialist

Jernigan Institute

NATIONAL FEDERATION OF THE BLIND

200 East Wells Street

at Jernigan Place

Baltimore, MD 21230

Phone: (410) 659-9314 ext. 2407

Fax: (410) 659-5129

Email: EGibbs@nfb.org

Web: www.nfb.org/education

Visit Capitol Hill opportunity for blind/VI kids 12 - 16 years old

2012-01-02T18:25:00.002-06:00

Here's another item I'm passing along to anyone interested.

The National Federation of the Blind Announces the 2012 NFB Leadership and Advocacy in Washington, D.C., (LAW) Program

Engaging the Voice of America’s Blind Youth

April 13-18, 2012

The NFB LAW program provides blind students with a unique opportunity to explore the inner workings of our country’s government, its history, and its culture. In addition to learning about the history of the organized blindness civil rights movement, how resolutions are passed, and how blindness legislation is created, participants will become familiar with advocacy work for blind individuals and available resources for blind students and adults. Highlights of the program include: visits to historical sites in Washington, D.C., meetings with influential government leaders, and presentations by prominent leaders in the National Federation of the Blind. Read more about this chance of a lifetime in the Summer 2011 issue of Future Reflections.

Twenty-four students (grades six to nine, or ages twelve to sixteen) will be accepted for the LAW program. All accepted students must be accompanied by a parent/guardian, teacher, or blind/low-vision mentor from their home state. There will be a $250 fee per student/chaperone pair. Transportation, room, and board will be provided for students and chaperones.

Apply now by going to www.nfb.org/LAWProgram. Applications are due by February 1, 2012. For more information, call (410) 659-9314, extension 2312, or e-mail Natalie Shaheen at nshaheen@nfb.org.

Writing contest for kids and adults

2012-01-02T18:20:00.000-06:00

Just passing this along.....

2012 NFB Writing Contest

The annual youth and adult writing contests sponsored by the Writers’ Division of the NFB opened up for submissions on January 1st and will close April 1st.

Adult contests, poetry, fiction, non-fiction, and stories for youth are open to all entrants eighteen years and over.

The Youth Writing Contest, poetry and fiction, are to promote Braille literacy and excellence in creative writing. Entries will be judged on creativity and quality of Braille. The age groups for these authors is divided into grade levels: Elementary, Middle and High School.

Prizes for contest winners range up to $100 for adult categories and up to $30 for youth categories.

All contest winners will be announced at the Writers’ Division business meeting during the NFB national convention to be held in Dallas, Texas, the first week of July, 2012. In addition, shortly after convention, a list of winners will appear on the Writers’ Division Website, www.nfb-writers-division. net First, second, and third place winners in each category will be considered for publication in the Writers’ Division magazine, “Slate & Style.”

For additional contest details and submission guidelines, go to the Writers’ Division Website, www.nfb-writers-division.net

Getting together with some CHS friends

2012-01-02T17:14:00.000-06:00

While I was in Seattle, I was lucky to get together with some friends from the Chediak-Higashi Association. They came to New York last year for the first CHS conference, and they're doing an awesome job of trying to raise money to have another CHS conference. They are awesome! These pics are from our time at the Everett Children's Museum.

Gerda, eight weeks old

2012-01-02T17:00:00.003-06:00

And more photos from around Seattle

2012-01-02T16:54:00.000-06:00

More pics of the baby

2011-12-24T14:22:00.000-06:00

Gerda has arrived

2011-12-24T12:48:00.000-06:00

Yesterday mom and I finally got topick up Gerda. She's younger than we thought she was at only seven weeks old. Such a baby! She's so tiny. She can crawl inside my shoe and be quite content. She's so tiny that she gets cold, but none of the extra small doggie jackets we bought her fit. So, just like an infant, she spends much of her time wrapped up or playing in her blankets. Potty training is probably a few weeks off. Developmentally, she's just not ready. But, so far she's only had one accident. We seem to be getting her to the puppy pads in time. I'm so glad we bought some, even though we didn't plan to use them.

Gerda is a cuddle bug. She wants to be held constantly. Her favorite spot seems to be around our necks right under our chins.

More photos from around Seattle

2011-12-19T23:45:00.002-06:00

National Federation of the Blind scholarship opportunity

2011-12-19T23:41:00.002-06:00

I'm just passing this info along. I was a national NFB scholar back in the summer of 1992! Wow - I'm getting old!

National Federation of the Blind

2012 Scholarship Program

Due to unforseen technical difficulties, our new and improved online application form for our 2012 scholarship program is not fully functional. If you would like an e-mail notification when the application is posted, please send an e-mail now to scholarships@nfb.org. Our date for completion for the form and the updated information pages is December 1, 2011. We apologize for the inconvenience. The new application will be much improved and worth the wait. Thank you.

The 2012 Scholarship Program will end on the deadline of March 31, 2012.

30 SCHOLARSHIPS

To recognize achievement by blind scholars, the National Federation of the Blind annually offers blind college students in the United States the opportunity to win one of thirty national scholarships worth from $3,000 to $12,000.

ELIGIBILITY REQUIREMENTS

All applicants for these scholarships:

must be legally blind (PDF document) in both eyes, and

must be residing in the United States, the District of Columbia, or Puerto Rico, and

must be pursuing or planning to pursue a full-time, postsecondary course of study in a degree program at a United States institution in the 2012 scholastic year, except that one scholarship may be given to a person employed full-time while attending school part-time, and

must participate in the entire NFB national convention and in all of its scheduled scholarship program activities.

In addition to a scholarship, each winner will receive assistance to attend the 2012 National Federation of the Blind Annual Convention in July, providing an excellent opportunity for high-level networking with active blind persons in many different professions and occupations.

PROGRAM TIMING

November/December 2011: The program for 2012 commences. As soon as possible, applications will be available online and, upon request, in print.

March 31, 2012: Deadline for all documents from the applicants and applicants must have requested an interview.

April 2012: Interview reports are required by mid-April. In late April, the NFB Scholarship Committee chooses the 30 winners for 2012.

May 2012: After all 30 winners are personally notified that they are a scholarship winner this year, the complete list of winners for 2012 will be posted on www.nfb.org/scholarships. Applicants who are not listed here did not win an NFB scholarship.

With the financial assistance of the NFB, all 30 winners attend the 2012 Annual NFB Convention, to be held at the Hilton Anatole Hotel in Dallas, Texas, from June 30 to July 5, 2012, departing for home on July 6.

2012: After convention the scholarship checks are sent directly to the winners in time for their 2012 fall semester.

2012 Deadline: Scholarship applications and documents

must be e-mailed or postmarked no later than March 31, 2012.

What kind of student wins an NFB scholarship? You may read about past NFB National Scholarship recipients in August-September "convention issues" of the Braille Monitor.

Braille Monitor, August-September 2011

Braille Monitor August-September 2010

Braille Monitor August-September 2009

Each year, information on the NFB Scholarship Program is made available online, in print, and in a fall issue of the Braille Monitor (available in large print, in Braille, recorded, and online). Subscribe to a free e-mailed copy of the Braille Monitor (11 issues per year) to know when to apply for each year's contest and to read other news of interest to blind Americans.

TO APPLY FOR AN NFB SCHOLARSHIP:

Confirmation of Legal Blindness (PDF document). Are you eligible?

Submissions Checklist. A complete application consists of one Scholarship Application Form (either online or print), one essay, other documents as detailed in this checklist, and one interview. Complete applications tend to have an advantage in the competition. The NFB Scholarship Committee takes no responsibility for notifying you if required information is missing from your application.

Frequently Asked Questions (Scholarships FAQ). Answers include useful advice for any applicant.

"The Secret to Winning a National Federation of the Blind Scholarship” by Scholarship Chairperson Patti S. Gregory-Chang, Esq.

2012 Scholarship Application Form, online edition. The application period is open from November through the following March. (Complete either the online edition or the print edition) SEE NOTE AT THE TOP OF THIS PAGE.

2011 Scholarship Application Form, print edition. The application period is open from November through the following March. (Complete either the print edition or the online edition.) SEE NOTE AT THE TOP OF THIS PAGE.

2011 List of Scholarships, $12,000 to $3,000. Fill out only one application for the program to be in competition for all 30 scholarships.

All questions should be directed to the chairperson. E-mail is preferred.

Chairperson Patti Chang, Esq.

NFB Scholarship Program

NATIONAL FEDERATION OF THE BLIND

at Jernigan Place

200 East Wells Street

Baltimore, Maryland 21230

Office: (410) 659-9314, extension 2415

E-mail: scholarships@nfb.org

Photos from the roadside - around Seattle

2011-12-19T13:47:00.002-06:00

Making ATMs accessable to those who are blind or have low vision

2011-12-19T13:41:00.000-06:00

I'm posting this information that came to my e-mail. I am wondering what implications this has for those of us that live outside of Mass? I haven't exactly had the chance to check it out yet. But, I thought some of you might be interested.

FOR IMMEDIATE RELEASE

CONTACT:

Chris Danielsen

Director of Public Relations

National Federation of the Blind

(410) 659-9314, extension 2330

(410) 262-1281 (Cell)

cdanielsen@nfb.org

National Federation of the Blind Secures

Court Ruling Against Cardtronics

Company Must Make ATMs Accessible or Face Sanctions

Baltimore, Maryland (December 19, 2011): A federal court has found that Cardtronics, Inc., has failed to comply with the terms of a settlement and subsequent remediation plan reached with the National Federation of the Blind (NFB) and the Commonwealth of Massachusetts to make all of the automated teller machines owned by Cardtronics accessible to the blind. In an order dated December 15, 2011, the Honorable Nathaniel M. Gorton of the United States District Court for the District of Massachusetts found that Cardtronics had not complied with the terms of the settlement agreement or remediation plan and that civil contempt was therefore appropriate. Judge Gorton ordered Cardtronics to comply with the remaining terms by March 15, 2012, or face monetary sanctions of $50 per month for each ATM that remained inaccessible to blind users-giving the company the "Shakespearean warning" to "beware the ides of March."

"Instead of admitting their non-compliance and promising better effort, defendants disingenuously claim they have complied in spite of a plethora of evidence to the contrary," Judge Gorton wrote in his memorandum opinion. "The deadlines they have consistently missed were, ironically, the ones they proposed in the first place."

Dr. Marc Maurer, President of the National Federation of the Blind, said: "It is critical that blind Americans have access to all of the technologies that are now a part of everyday life in the twenty-first century if we are to achieve full and equal integration into society, and this includes the technology necessary to handle our finances. Toward that end, we reached an agreement with Cardtronics to make its ATMs accessible, and when problems arose and initial deadlines were missed, we worked in good faith with the company to come up with a workable remediation plan. Sadly, however, Cardtronics has not complied with the agreed terms of the remediation plan. We are therefore pleased with the court's decision requiring Cardtronics to meet its legal obligations."

###

About the National Federation of the Blind

With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people's lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind. Please visit our Web site: www.nfb.org.

Mukilteo Light Station

2011-12-11T16:02:00.000-06:00

Seafood lunch at the ferry

2011-12-11T15:53:00.000-06:00

My dad and his new wife took me to the most wonderful seafood restaurant near where you get the ferry to go to the San Juan islands (no folks, not in Puerto Rico!). It was right by the ferry dock, so we could watch the ferries coming and going.

Photos from Seattle

2011-12-11T15:47:00.001-06:00

I haven't been posting a lot because I've been visiting my parents in the Seattle area. My mom lives north of Seattle, and my dad south of Seattle. Of course, my favorite thing to do is to take photos. Grin. I hope to use them for references for future paintings. Here are some (with lots more to come) from Christmas time around Seattle. This batch were all taken on a drive my mom and I took near the Canadian border. Excuse some of the "stuff" in the photos. I took most of them from the car window, or out the front windshield. It wasn't always possible to stop.

National Council of the Blind offers scholarships to legally blind students

2011-12-11T15:41:00.002-06:00

This is just one of those things I'm passing along:

ACB SCHOLARSHIP ANNOUNCEMENT

ACB SCHOLARSHIP ANNOUNCEMENT

The American Council of the Blind (ACB) annually awards approximately 20 scholarships ranging in amounts from $1,000 to $2,500 to vocational, entering freshmen, undergraduate and graduate college students who are legally blind, maintain a 3.3 GPA and are involved in their school/local community. Applications may be submitted beginning Dec. 1; all materials must be received by 11:59 p.m. Eastern on March 1.

To read the scholarship guidelines and complete an on-line application, please visit www.acb.org/scholarship.

For more information, please contact the ACB national office at (202) 467-5081 or 1-800-424-8666. We look forward to receiving your application materials!

..

Hundred People Search (HPS) Update

2011-12-08T21:47:00.002-06:00

This week we've added one new person to the HPS Network's patient registry. This puts us at 79 people to find by March! It's time to outreach!

Meet Gerda - our new family member

2011-12-06T00:50:00.000-06:00

Meet Gerda!

Gerda is my mom's new puppy. She's actually coming home Dec. 24th as she's too tiny to be taken from her mother just now. I'm in such dog envy it isn't even funny! In the first pic, Gerda is three weeks old. (She's also three weeks where mom is holding her.) In the red pic she's four weeks old. She actually looks like a dog in that photo!

Hundred People Search update

2011-12-06T00:21:00.000-06:00

Last week I didn't post the update. I've been having some problems - more on that later.

Last week we added one new HPS'er to the patient registry. This puts us at 80 to go on this year's Hundred People Search.

Genetic testing for albinism in India

2011-11-26T01:45:00.000-06:00

The Indian Genetic Disease Database (IGDD), run by the Indian Institute of Chemical Biology, is willing to offer free genetic testing and accommodations to people with albinism in India, or those in the region able to travel to the Institute. The genetic testing will not only help those with albinism learn what type affects them, but it will also help to further research about albinism in India. Patients will also receive genetic counseling.

Those in India unable to travel to the Institute may still obtain genetic testing if they ban together. The Institute is willing to send a team to collect samples if five or more people with albinism in the same place wish to be tested.

The Institute is also able to test for known HPS genes. Electron Microscope screening for HPS may also be available. For more information, contact Siddharth Sawhney at:

USA: 1 302.781.1010 x 701266
UK: +44.870.850.3512 x 701266
ssawhney3@csc.com
India Cell: +91 9810076568.

December HPS Parent and Supporters call - Higher Bowel Awareness!

2011-11-18T15:40:00.000-06:00

Put it on your calendar now! Our HPS parent call the first week of December will be about "Higher Bowel Awareness: Coping with the Crohn's of Hermansky-Pudlak Syndrome." This will not be a session with medical professionals. Rather, we'll have a panel of HPS'ers living with bowel disease to answer questions from HPS parents, supporters, spouses, partners or friends. This is NOT a call for those with HPS. It's a chance for our supporters to ask questions they might not want to ask in front of us. What have you ever wanted to know about living with bowel disease or about living with an ostomy? All questions are fair game for our panel of poopologists. The English language call will be 8:30 eastern time on Tuesday Dec. 6th and the Spanish language call will be at 7:30 eastern time on Wednesday Dec. 7th. Information about how to call in will follow.

Hundred People Search Update

2011-11-18T15:25:00.000-06:00

This week we added two new HPS'ers to the HPS patient registry! This puts us at 81 more to find on this year's Hundred People Search.

An interesting reminder came up this week. If your the parent of a child with HPS, and you've registered with the Network, should you have a second child with HPS, please remember to register that child as well.

Keep up all the great work!

Thanksgiving is a family health opportunity!

2011-11-17T16:50:00.000-06:00

It’s just around the corner! Time to eat lots and lots of turkey and cranberry, stuffing and pie, and then sink into a nice big, comfy chair, unfasten your pants, and moan softly in total Thanksgiving bliss. It’s time to watch football and parades on TV, express our gratitude for the important things in our lives, and share those memorable family stories.

It can also be a time to capture valuable information about your family’s health history. Family lore isn’t just important to help us understand our families and where we’ve come from; it can also be a valuable preventative health tool. Don’t let such a golden opportunity slip away. While the family is recovering from that second piece of pumpkin pie, take a little time to ask relatives questions about what they remember about relatives that have gone before us. Record the information as clues that could help your doctor make a future diagnosis that could save you, your children, or future generations. Here’s a Website that offers some tools on just how to do this: www.familyhealthhistory.org

Info on the iPhone 4 and low vision

2011-11-15T15:15:00.000-06:00

This came into my e-mail today. I know many of you have questions about the iPhone. Note that if you don't live in New York City and can't attend in person, they are recording the event and you can see it online later.

SAVE THE DATE

Wednesday, November 30, 2011

The Computer Center for Visually Impaired People (CCVIP) at

Baruch College Invites You to an

Interactive Presentation Entitled

The Ins and Outs of the iPhone 4S

Times: 2:00-4:00pm or 6:00-8:00pm

**Please note that the times for the afternoon session have changed**

Where: Baruch College 55 Lexington Avenue, Room 14-270

Use the 25th St entrance between Lexington Ave. and 3rd Ave.

What: Have you been hearing all about the latest model of the iPhone? Are you wondering if this is the device for you? Join us as we look at all the features available in the new iPhone 4S. We will introduce you to Siri, the iPhone’s new digital personal assistant and show you all the things you can now do simply by telling your phone to do them. We will also be doing some in depth exploration of some of the newer features of the iPhone 4S including the camera feature which now has a level of accessibility that has never been seen before on this type of device. And, we will also answer any questions you might have.

Admission: Free

Reservations Required: Call 646-312-1420

If you are unable to join us in person, the presentation will be recorded and posted on our site for viewing at your convenience. Please visit us at: www.baruch.cuny.edu/ccvip

Also mark your calendars for Wednesday, January 25, 2012 when we will be offering our next Demo Center Presentation. We have lots of ideas for kicking off the new year but haven’t chosen the perfect one yet…

SAVE THE DATE

Wednesday, November 30, 2011

The Computer Center for Visually Impaired People (CCVIP) at

Baruch College Invites You to an

Interactive Presentation Entitled

The Ins and Outs of the iPhone 4S

Times: 2:00-4:00pm or 6:00-8:00pm

**Please note that the times for the afternoon session have changed**

Where: Baruch College 55 Lexington Avenue, Room 14-270

Use the 25th St entrance between Lexington Ave. and 3rd Ave.

What: Have you been hearing all about the latest model of the iPhone? Are you wondering if this is the device for you? Join us as we look at all the features available in the new iPhone 4S. We will introduce you to Siri, the iPhone’s new digital personal assistant and show you all the things you can now do simply by telling your phone to do them. We will also be doing some in depth exploration of some of the newer features of the iPhone 4S including the camera feature which now has a level of accessibility that has never been seen before on this type of device. And, we will also answer any questions you might have.

Admission: Free

Reservations Required: Call 646-312-1420

If you are unable to join us in person, the presentation will be recorded and posted on our site for viewing at your convenience. Please visit us at: www.baruch.cuny.edu/ccvip

Also mark your calendars for Wednesday, January 25, 2012 when we will be offering our next Demo Center Presentation. We have lots of ideas for kicking off the new year but haven’t chosen the perfect one yet…

SAVE THE DATE

Wednesday, November 30, 2011

The Computer Center for Visually Impaired People (CCVIP) at

Baruch College Invites You to an

Interactive Presentation Entitled
The Ins and Outs of the iPhone 4S
Times: 2:00-4:00pm or 6:00-8:00pm

**Please note that the times for the afternoon session have changed**

Where: Baruch College 55 Lexington Avenue, Room 14-270

Use the 25th St entrance between Lexington Ave. and 3rd Ave.

What: Have you been hearing all about the latest model of the iPhone? Are you wondering if this is the device for you? Join us as we look at all the features available in the new iPhone 4S. We will introduce you to Siri, the iPhone’s new digital personal assistant and show you all the things you can now do simply by telling your phone to do them. We will also be doing some in depth exploration of some of the newer features of the iPhone 4S including the camera feature which now has a level of accessibility that has never been seen before on this type of device. And, we will also answer any questions you might have.

Admission: Free

Reservations Required: Call 646-312-1420

If you are unable to join us in person, the presentation will be recorded and posted on our site for viewing at your convenience. Please visit us at: www.baruch.cuny.edu/ccvip

Also mark your calendars for Wednesday, January 25, 2012 when we will be offering our next Demo Center Presentation. We have lots of ideas for kicking off the new year but haven’t chosen the perfect one yet…

ReplyReply AllMove...2011 conferenceAAPAdventure FitnessATS 2011ATS Grantcarmenchristmas power poin...Donnae-mails i need to an...elsie fundraiserfamily historyfundraising leads - ...ginaJobsLettyLisamattnews you can useNHLBI PIO meetingNoelnotes 2011 summer ne...quotesReneeresearchsales leadstaste of home

Visit to the doctor

2011-11-14T15:15:00.003-06:00

Friday was doctor day. I am so blessed to have an awesome doctor! I needed to get in to see someone because I have an upcoming trip. I wanted to be sure all of my prescriptions were in order and current.

I’m not the only one who loves my doctor. His other patients must love him too as it can be rather hard to get an appointment. When I called, he didn’t have any openings until late December.

I took what I could get and honestly, cringed at the thought of starting from square zero with some poor new doctor. When this happens, I almost feel like I should apologize for landing in their unsuspecting lap. In a 15 minute appointment with a new doctor, the conversation usually starts out something like, “Hermansky what? How do you spell that?” I then produce an HPS brochure that is usually gratefully received. It makes me smile to myself as they eagerly read it over as Donna and I wrote that brochure. But, I never say anything about my HPS Network involvement, at least not usually from the get go, unless I’m having trouble establishing credibility.

Other times I’ve sat in the exam room waiting to be seen and heard scurrying in the hallway and discussions that I know very well are about me. A few years ago I went to an immunologist, and as I waited for him, I heard “Hey, Chris, do you know anything about this?” Chris responded, “No, never heard of it. I guess you’ll have to google it real quick.” Sure enough, the doctor appeared, internet print outs in his hand.

I’m not complaining. It isn’t their fault. There are more than 7,000 rare diseases, according to the Office of Rare Diseases at NIH. How could anyone possibly remember every single one, especially if you see it maybe once in your career? It’s an outreach opportunity. I really don’t mind explaining HPS. In fact, I’m honored to do it.

Still, it is nice to go to an appointment and not start from the very beginning.

As I sat in the waiting room, my doctor saw me and as he had a cancellation, switched me to his schedule. God was looking out for me!

I had been practicing this visit since the night before, expecting a newbie. I had a list and hadn’t planned to discuss just everything but rather put it off until I got back from the trip. Prescriptions – just the prescriptions. In all fairness to the other patients, by the time I got through what is HPS and went over all my meds, why I take them etc. that’s all we’d have time for.

So, I was so grateful when the nurse came to tell me my doctor would see me after all. We were able to get the ball rolling on some referrals I need and start working on scheduling some tests.

Now that the drug trial has ended, I need to be followed more closely at home. NIH isn’t, after all, like going to see your doctors at home. Their primary mission is research. Right now, I don’t fit into what they need currently for HPS research.

I understand this completely. As we learn more about HPS and pose new questions, it’s a good thing that research questions and goals get reviewed and redirected.

Still, I must confess, I miss going to NIH. When you go for years at a time every few months, you get to know all of the doctors, nurses and technicians. I miss seeing them all and hearing the latest updates from their lives. I remember the tech that always did my EKG used to give me updates on her three grandsons. One nurse I had quite often was originally from Iran. He always had interesting observations about life in the United States to share, even though he’s lived here since the 1970s. I could go on and on. Even though our relationships were professional, they were friendly and I miss them all.

Santa knows Braille!

2011-11-14T15:14:00.000-06:00

This is another press release I'm passing along to any readers who might be interested, or know kids who might be interested. Honestly, I haven't blogged about braille in some time. I should probably revisit that subject. Sadly, it seems to bring up so many emotions for everyone. It feels like their are two camps in the low vision world about braille - either everyone should learn it, or no one should unless their vision is super, super crappy. It's very sad that this is the current state of things. But, today is a very busy day. I'll have to revisit the politics of braille some other time.

For now, one way to encourage kids to learn braille is to make it "cool" and to provide them with materials they want to read. A letter from Santa is a great way to promote braille literacy among little kids.

Here's the info:

FOR IMMEDIATE RELEASE

CONTACT:

Chris Danielsen

Director of Public Relations

National Federation of the Blind

(410) 659-9314, extension 2330

(410) 262-1281 (Cell)

cdanielsen@nfb.org

National Federation of the Blind

Partners with Santa to Promote Braille Literacy

Baltimore, Maryland (November 14, 2011): Once again, Santa has enlisted the help of the elves at the National Federation of the Blind (NFB) Jernigan Institute to get Braille letters out to hundreds of blind boys and girls this Christmas season.

Dr. Marc Maurer, President of the National Federation of the Blind, said: "Santa approached the National Federation of the Blind a couple of years ago and asked us to be his helpers. I'm quite fond of the fellow and was delighted that we could assist him in his work. Braille literacy is the key to success and opportunity for the blind, but unfortunately too few blind children are learning it today. This program will not only spread holiday cheer but will also serve an important educational purpose, as blind children will be able to practice reading Braille as they enjoy their letter from merry Saint Nicholas."

Between November 15 and December 20, parents can go online at www.nfb.org and fill out a Santa Braille Letter request form. The form can also be printed and faxed to (410) 685-2340. Beginning December 1, the Braille letters from Santa will start going out to boys and girls around the country. The Braille letter will also be accompanied by a print copy (for mom and dad to read), and parents can choose the contracted or uncontracted form of Braille for the letter. Requests for letters must include the writer's name, the child's name, birthday, gender, mailing address, and a telephone number or e-mail address in case Santa's helpers at the National Federation of the Blind have questions.

The deadline for letter requests is December 20, to ensure that a return letter in Braille is received before Christmas. For more information about this and other programs of the National Federation of the Blind, please visit our Web site at www.nfb.org.

###

About the National Federation of the Blind

With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people's lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind. Please visit our Web site: www.nfb.org.

Unsubscribe.

Jack Kent Cooke Foundation scholarships

2011-11-12T00:15:00.002-06:00

I ran across this today and thought I'd pass it along.

This foundation has three different scholarship programs with different timelines.

They offer scholarships to students between seventh grade and juniors in high school. They offer a program for students transitioning from a two-year to a four-year school. They also have a graduate student program.

These scholarships are based on financial need. They take into account the cost of living where you live and any extra-ordinary family financial stress such as medical expenses.

Check it out at: http://www.jkcf.org/scholarships/undergraduate-transfer-scholarships/

New Yorkers host Fang-tastic Fundraiser

2011-11-10T18:26:00.002-06:00

Supporters of the Hermansky-Pudlak Syndrome Network braved a snow storm to attend the Fang-tastic Night fundraiser in Manhattan on Oct. 29th and raised more than $2,000.

The event, held at Fagolini’s Restaurant, featured a dinner, open bar and raffle prizes including items such as handmade quilts, quilts from Urban Outfiters, AMC movie tickets, and year-long theater passes to the Symphony Space.

Donna Appell gave a short presentation about Hermansky-Pudlak Syndrome and the work of the Network. Ashley Appell and Mervin Hernandez performed two songs for the assembled crowd.

A special thanks to the event’s organizing committee and volunteers including:

Fran Moore

Brenda Lopez

Lisa Koss

Diana Rodriguez

Tracy Zhen

Learn more about the HPS Network at: http://www.hpsnetwork.org/.

Strange dreams

2011-11-10T17:14:00.000-06:00

The good news is I’ve been sleeping better than usual. The weird news is I’ve had some pretty funky dreams lately. I wish I knew more about dream analysis. What is my sub conscious trying to tell me? Are my dreams always this strange, or is it just that I never remember them, so I’m not aware of how strange they are regularly?

The other night I dreamed I was staying at Donna’s to work in the HPS Network office. Her house became infected with these bugs, sort of like large ticks. They were biting us, and no matter what we did, there were these little blood sucking bugs pinching us and making Ashley and I bleed everywhere. Oh boy – what kind of symbolism is there????? I’m almost afraid to ask!

Many of my dreams have been more like memories from different points in my life. I recognize them as things that have happened. The thing is they aren’t memories of memorable things. Instead, they’re memories of the most mundane things.

For example, I dreamed I was out on a date with a guy I dated 15 or more years ago. I dreamed we went out to a bar, and I had on this dress I really liked. All through the date I didn’t hear anything he said because I was too busy thinking about how great I looked in this dress! I’m not normally so self involved. The thing is, I do remember that dress and I really liked it. I also didn’t date this guy very long because, honestly, we had no interests in common. His favorite topic of conversation was all the things he did in college that he probably shouldn’t have done. The stories of drunken frat boy antics were a huge turn off. So, what was that dream all about? I haven’t thought about the guy or the dress in ages!

Or, another night I dreamed I was back in the house we lived in when I was in high school (the house in Wallhofen, Germany.) It was in the country and surrounded by dairy farms. I used to make the local farmers so upset because I’d either ride my bike, or run, along the fence where the cows were gathering to be fed and milked in the evenings. Cows will follow almost anything, and if you run along the fence, they’ll start running with you. I remember how great it felt to run along that fence with 20 cows following me through the lush green and rolling Moore countryside. I used to joke I was making cottage cheese.

The farmers were not amused because after we’d all been for our run, the cows didn’t want to be milked. Still, although I’ve never been much of a runner, there was something liberating and freeing about getting the cows all stirred up. Why would I dream about that now? Again, I haven’t thought about it in years.

Hundred People Search update

2011-11-10T11:26:00.000-06:00

This week we've added one new person to the HPS patient registry. That puts us at 83 to go on the Hundred People Search. Keep up the good work!

Families USA offers tool to find answers about health insurance

2011-11-09T15:56:00.004-06:00

Washington DC-based Families USA is offering a “program locator” on their Website to help consumers find answers to their health insurance-related questions. The site offers referrals to information about Medicare, Medicaid and private health insurance programs by state. It also offers referrals to programs to help those experiencing difficulty obtaining adequate insurance coverage. Unfortunately, currently the locator does not include information for families living in Puerto Rico. To use the program locator, go to: http://www.familiesusa.org/resources/program-locator/

Note: Sorry for the smaller text size - Blogger is giving me trouble again! Grrrrrr.

HPS'ers know how to dance!

2011-11-07T23:47:00.000-06:00

It's time to start planning the next conference - get those dance shoes out and give them a little practice warm up!

A "J" Christmas

2011-11-06T21:58:00.000-06:00

The HPS Network is very, very lucky to have a musical group, "J," that has held benefit concerts for HPS for the past 10 years. They have hearts of gold. They have no family members with HPS or CHS, but they've adopted us as their cause. Every Christmas they hold a Christmas concert benefit. They've also produced two albums, the sales of which, benefit the HPS Network.

This year's concert is coming up the first weekend in December. Learn all about the band, the concert, or buy the albums (iTunes, Amazon or CDs at the HPS Store) on the group's concert Website - www.jchristmas.org.

Thank you "J"!!!!!!

Disability History Week

2011-11-05T15:30:00.000-05:00

As many of you know, I get all kinds of stuff in my e-mail. It’s one of the reasons I’m always so behind! This week I got an item that made me think back to my college days.

The e-mail was about Disability History Week. I think the official week was actually last week, but am not entirely sure since I couldn’t find a date on the movement’s Web site. Perhaps it is different in different states? For the purpose of this blog entry, the actual date is not important.

It’s the idea.

The idea of having a “week” or a “month” for various ethnic groups and their history has been a topic of controversy. After all, why should we only remember African-American history during African-American History Month. Shouldn’t we be pushing to have history, every day, more inclusive?

I think the answer to this has more to do with the times in which we live than it does with the pros and cons of the idea.

The reality is the civil rights of people with disabilities have always seemed to lag behind those of other groups. Perhaps I’m alone, but I feel like people with disabilities are the one group for which people feel it’s “okay” or “justified” to discriminate against.

A prime example is the work currently underway to make it illegal for businesses (mostly those that operate sheltered employment situations) to pay workers with disabilities less than minimum wage based on the rationale that they could never be as productive as non-disabled people. This is 2011 and we’re still talking about equal pay for equal work.

We are still at a point in history where the average person, whether they’re aware of it or not, makes all sorts of assumptions about what a person with any given disability can or cannot do. They make these assumptions based on what they believe they’d experience in the same position. For example, they imagine that closing their eyes is what it’s like to be blind. How would they cook? How would they get around? In reality, people who are blind (hopefully) have undergone special training and developed alternative techniques for doing every day things. They’ve had a chance to adjust to not seeing, unlike the person who just closes their eyes and tries to imagine.

Discrimination against people with disabilities often is the silent kind. It’s the job opportunity never mentioned because everyone assumes it wouldn’t be possible for such and such a person to do it. It’s the subtle difference between two job candidates of pretty much equal qualifications. It’s the questions everyone knows they aren’t supposed to ask in a job interview of a job candidate, yet still somehow hang in the air as unaddressed concerns.

Perhaps if people with disabilities were further ahead in our civil rights challenges, the idea of a special week to celebrate historical achievements wouldn’t appeal so much to me. I suppose it does because I suspect many would see the idea as political correctness to the max. I suspect the average person, disabled or not, would be hard pressed to come up with historical examples of people with disabilities – besides the most obvious ones.

When I was in college, I was much more involved in the National Federation of the Blind. I remember many talks about “blind history” and the “history of our movement.” It was empowering. It provided role models, but it also made me not take for granted the ground we have gained. Yes, we have a long way to go, but we’ve come a long way too.

If you want to check out the Website I received in my e-mail, it is: http://disabilityhistoryweek.org/

Learning Ally Scholarship program now open

2011-11-05T15:04:00.000-05:00

Learning Ally offers scholarships to those who are legally blind, or who have a learning disability that means they benefit from reading in an audio format. The scholarship program is now open. Check it out at: http://www.learningally.org/About-Us/National-and-Local-Award-Opportunities/108/

Health Update

2011-11-05T14:53:00.000-05:00

This past week, on the whole, has been a pretty good one. Last Sunday was somewhat problematic. I had some bleeding issues again on the skin around the stoma and spent most of the day trying to keep a pouch on. Yesterday, (Friday) I had an intense headache and hit the fatigue wall big time.

I don't know why, but three nights this week, even with the CPAP, I didn't sleep well. My tummy was fine. My joint pain wasn't non-existant, but it wasn't that bad. It just seemed as though I was restless somehow.

These headaches seem to be more frequent. They seem to be related to pressure in my sinuses. My ears and teeth will hurt, and my ears will pop. It feels like someone is squeezing my head. When I get them, even if I can manage to concentrate despite the headache, I find working on the computer more difficult. It makes me queasy and makes the pain worse.

Thank you to Congressman Denny Rehberg

2011-11-03T14:51:00.000-05:00

The HPS Network has joined with other patient advocacy groups and bio-research organizations to thank Congressman Denny Rehberg for his support of the National Institutes of Health (NIH) and for adding a $1 billion increase of NIH’s budget in the Labor Health and Human Services, Education and Related Agencies draft funding bill.

The bill also allows the Cures Acceleration Network (CAN) to start its work to find cures for disease faster.

Visit the HPS Network at: http://www.hpsnetwork.org/.

Braille Readers are Leaders

2011-11-03T13:29:00.000-05:00

It's time for the annual Braille Readers are Leaders contest. I'm just passing along for anyone who is interested.

Greetings Federationists,

It’s time to start reading! The reading period for the annual Braille Readers Are Leaders contest begins November 1. If you haven't had a chance to register for the contest, it’s not too late! You can register at www.nfb.org/BRAL now through the end of the contest, January 4, 2012.

The contest is for both adults and youth who are independent Braille readers. There are many levels of participation, from beginning Braille readers to the more advanced. Participants read for prizes, practice, and pleasure. Whether you love the competition, or are spurred on simply because it’s a great way to promote and refine your Braille skills, this contest is for you.

For more information, you can check the Web site, www.nfb.org/BRAL. There you will find all the forms and reading logs you will need to participate. You should also check out the Braille Readers Are Leaders blog www.nfb.org/nfb/BRAL_BLOG for answers to commonly asked questions about the contest and other interesting information about reading Braille! If you still have questions, please contact the Braille Readers Are Leaders team at (410) 659-9314, extension 2312, or BrailleReadersAreLeaders@nfb.org.

Put your fingers to the paper and start recording what you are reading today!

Braille Rocks,

The Braille Readers Are Leaders team

In memory of Carmen Munoz

2011-11-01T08:46:00.001-05:00

Last week the HPS community lost an icon. Carmen Munoz was one of the early members of the HPS Network. We owe her a lot. She was one of the early HPS’ers to go to the National Institutes of Health to participate in research on Hermansky-Pudlak Syndrome. She participated in the Phase II study of Pirfenidone, a drug we hope will help the pulmonary fibrosis of HPS someday.

Carmen was one of those people everyone knew. She’d tell you herself that she was “loud” and very, very proud of her Puerto Rican roots. If you ever found her annoying (and we all did at times which she’d tell you herself) you quickly got over it because Carmen had a heart of gold. She’d do anything for anyone. She wanted the best for her HPS brothers and sisters.

Carmen looked forward to the HPS Conference every year like a small child looks forward to Christmas morning. She attended every year, and every year was in tears when it was time to go home.

She always sat in the front and championed remembering our HPS brothers and sisters who had gone on to heaven. Carmen had watched several of her own siblings die of HPS.

She was the proud mother of a son. I’ll never forget when he was accepted to college how she beamed, even over the phone. Carmen didn’t get a chance to benefit from an education, but she was so pleased her son would.

Although she developed the pulmonary fibrosis of HPS in the 90s, in the end it wasn’t the lung disease she battled for years that got her.

We always knew Carmen was tough. We never really knew just how tough until the final two years of her life. She experienced complications from bowel surgery, made necessary by the Crohn’s disease of HPS. While in the hospital, she contracted a hospital-borne “monster bug.” For two years she was never able to heal completely from the surgery, or fight off the mounting complications of infection.

I can’t imagine being hospitalized for two years, but Carmen endured the experience with such a positive attitude and a closeness to God that amazed everyone who came into contact with her.

While I don’t think Carmen would want us to wallow in our sadness about losing her, I do think it would mean a lot to her to know she was remembered. She championed the idea that we’d never forget those lost along the path to the cure. Now, she is one of our HPS angels.

I think she’d love it if we raised a glass in her honor and enjoyed ourselves.

When I think of Carmen, I can’t help but have the image in my mind of her arriving in heaven to see all of the HPS friends she lost over the years. I can imagine her entering the gates of heaven and saying something along the lines, “Okay God, I’m here. Now, we’ve got to have a talk about HPS. What do you plan to do about the cure?” We couldn’t have a better angel advocate in heaven.

CTV British Columbia - Family fundraises for cure to boy's rare blood disorder - CTV News

2011-10-31T15:01:00.000-05:00

CTV British Columbia - Family fundraises for cure to boy's rare blood disorder - CTV News

Riley's family's efforts to raise money for Chediak-Higashi Syndrome made the TV news.

My Bro Santa (A Very Merry Christmastime)

2011-10-31T14:53:00.002-05:00

This video is from the album "A Very Merry Christmastime" by the band "J". All of the proceeds from the album go to benefit the Hermansky-Pudlak Syndrome Network. Please help us spread this video around the internet to increase awarenes of HPS. (Sorry for the small print. Blogger isn't cooperating.)

Celebrating Homes fundraiser continues

2011-10-31T12:57:00.000-05:00

We all have those people on our list who are hard to buy for - or those occassions where it's tough to know what sort of gift to give. Why not help out the Hermansky-Pudlak Syndrome Network and buy one of those gifts at the same time? Check out our Celebrating Homes Fundraiser - a perfect place to buy an office exchange gift or a gift for a child's teacher! http://www.celebratinghome.com/fundraiser/hpsnetwork2011/OnlineFundraiserHome.aspx#.TpO8v75vvxl.facebook

Useful Website for blind/visually impaired

2011-10-31T12:54:00.000-05:00

This was in my e-mail this morning and I'm just passing it along. This new Website offers videos explaining how to do various things for the blind/visually impaired. Currently they've got a video up I want to go back and see when I'm not in a rush by a blind physician.

Check it out if you think it might be useful to you.

www.blindhow.com.

Health update

2011-10-28T14:12:00.000-05:00

This has been a much better week health wise. I'm way overdo for my blood work and my flu shot. Naughty me!

It seems the trouble I was having last week and some of the week before was a tummy virus. It just took me longer to kick it than usual.

This week my energy levels have been better. I've slept better than usual too.

I haven't had any code browns until today (two so far). I hope that's it as finally the skin is looking really good! A few more, and I'll start having trouble again just from having to remove the pouch so often. I was, of course, not home this morning when I had the first code brown. I had liquid output, so it was a bad one, running down my leg and getting on my pants. Thankfully, I wasn't too far from home. It's cold today too, so I put my jacket around me and headed home as fast as I could walk. I don't think anyone noticed - fingers crossed.

Hundred People Search update

2011-10-28T13:46:00.000-05:00

Today we added two new HPS'ers to the patient registry. This puts us at 84 more HPS'ers to find in this year's Hundred People Search!

Family sells bracelets to benefit Chediak-Higashi Syndrome

2011-10-27T21:27:00.000-05:00

Last year we had the first-ever Chediak-Higashi Syndrome family conference. One of the families that came was Riley's family from Canada. Riley charmed everyone. You'd never guess watching him run around with so much energy just how much he'd already been through in his short life.

Riley's family is making bracelets out of pop tops to try to raise money. This article appeared in the local paper. How awesome!!!! And, the photo is great!!!!

Here's the article:

Handmade bracelets help Riley

Buying a bracelet in Fort Langley will help in the efforts to find a cure for an extremely rare blood disorder, that affects a young boy in Walnut Grove

By Troy Landreville, Langley AdvanceOctober 27, 2011

Riley Tenhoeve, five, and his mom Selena sported bracelets being sold to raise money to find a cure for Chediak-Higashi Syndrome, a rare blood disorder that Riley was born with.

Photograph by: Troy Landreville, Langley AdvanceFive-year-old Riley Tenhoeve is a pretty typical kindergartner.

The jovial Walnut Grove tyke is a ball of frenetic energy who never stops moving, keeping his parents Lance and Selena simultaneously entertained and busy.

His passion for dirt biking and quadding is so strong, most mornings he pulls the pillowcase off his pillow and plays what he calls, "pillow dirt bikes."

"He's crazy energetic," Selena said. "He never stops. He doesn't slow down unless he's asleep. He's very friendly and chatty. He charms everybody, everywhere he goes."

The happy-go-lucky tyke also happens to have an extremely rare blood disorder called Chediak-Higashi Syndrome.

To read the full article, go to: http://www.langleyadvance.com/Handmade+bracelets+help+Riley/5613466/story.html

Hundred People Search update

2011-10-24T16:37:00.000-05:00

I know it isn't Friday, but I've got so much on my mind right now that I'm afraid I'll forget. Today we added two new HPS'ers to the patient registry. That puts us at 86 HPS'ers to find on the Hundred People Search by March.

HPS Network UK exhibits at hematology conference

2011-10-20T17:18:00.000-05:00

Chris Fenlon and Paul O’Donovan, from the HPS Network UK, attended a joint conference of the UK Haemophilia Centre Doctors Organization and the British Society for Heamostatis and Thrombosis, held Oct. 3-5, 2011 in Brighton.

The HPS Network UK targeted this meeting, as the attendees were most likely to have patients with HPS. Fenlon and O’Donovan hoped that by exhibiting at the show, they’d create greater awareness of the HPS group based in the United Kingdom, as well as for HPS in general.

“The show went very well,” says Fenlon, “Sometimes it takes a while for your efforts to bear fruit, but at this show, we already heard about results from some of the previous events. It might take a while, but it’s good to know that what you’re doing does make a difference.”

HPS Network visits Huertas Junior College

2011-10-20T17:14:00.002-05:00

During HPS Outreach Week before the HPS Family Conference in Puerto Rico, the HPS outreach team visited Huertas Junior College and met with faculty.

The college not only has several programs to assist students with disabilities, but it also has a program for students wishing to become counselors, or work in the rehabilitation services area.

The team spoke not only about the basics of HPS, but also some of the social and economic challenges faced by those who have HPS that might be relevant to someone in a counseling role.

Health Update: The stomach bug

2011-10-20T15:02:00.002-05:00

It’s been more ups and downs in my medical life as of late. Currently, I think the culprit is a stomach bug – at least I hope it’s that simple.

I’ve had a few nights of throwing up, followed by days of extreme fatigue and joint pain, and an on-and-off fever of around 100. The strange thing is I have a day or two like this, then feel absolutely great for a day or two, and then it seems to come back.

Today I feel great, so I’m hoping we’re finally rid of this bug for good this time!

It’s also been a bad code brown stretch the last seven days. I’ve used a month’s worth of supplies and am worried Medicare will give me a hassle when I have to order more because I’ve gone through them so quickly. They are not likely to understand the implications of having a bleeding disorder coupled with an ostomy. Sometimes things just aren’t the same for me as they would be for another ostomy patient.

The ulcers are actually much improved. Instead, it’s the surgical type area that’s the problem right now. Taking off the pouches so often is like ripping off a band-aid over and over. It damages the skin.

Christian Record Service scholarship for legally blind, full-time undergrads

2011-10-14T14:23:00.000-05:00

Just passing along this info:
http://services.christianrecord.org/scholarships/index.php?fmt=GR&sid=nhf5ndqbqea4ocuskvugdcjor7

CRS - Scholarships

Partial scholarships are offered to legally blind young people striving to obtain a college education. Scholarships are given on a limited basis to those who qualify.

The amount Christian Record Services gives for scholarships varies from year to year. The actual amount given to each student is in proportion to the funds available.

An applicant must meet two requirements before the application will be considered:

•Applicant must be legally blind (20/200) with correction).

•Applicant must be planning to attend college as a full-time student on the undergraduate level to secure training that will enable independence and self-support.

If you or someone you know qualifies, please print, complete, and return the *application and *character reference forms. Applications for tuition scholarships are accepted between November 1 of the present year and April 1 of the following year for assistance the next fall term.

For example, if tuition assistance is desired for the school year 2012-2013, the application should be received in our office between November 1, 2011 and April 1, 2012.

The committee will meet soon after the application deadline of April 1 to determine which applicants qualify for a scholarship for the coming school year. You will receive a letter informing you of the committee's decision by June.

If you have any questions, please feel free to contact us.

The Gates Millennium Scholars Program

2011-10-14T13:39:00.000-05:00

When I reach out to other organizations for outreach programs, I often end up on their mailing lists. That means that this time of year I get a lot of information about scholarship opportunities. I pass on as much of it as I can. I know that families dealing with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome face not only the usual obstacles to paying for college, but the added financial burdon of having someone in the family in need of medical care in a chronic matter.

The Gates Millennium Scholars Program - taken from their materials:
For students entering college for the first time in the fall 2012, the GMS 2012 Scholarship Application online process is now open. The deadline for all submissions is Wednesday, January 11, 2012 at 11:59 p.m. EST.

GMS will select 1,000 talented students each year to receive a good-through-graduation scholarship to use at any college or university of their choice. We provide Gates Millennium Scholars with personal and professional development through our leadership programs along with academic support throughout their college career.

Our program is more than a scholarship—it’s an opportunity to change your life! Just ask Deonte Bridges how much the GMS scholarship means to him.

If you are willing to serve as a nominator or recommender for deserving students, you can make a difference in their lives.

The goal of GMS is to promote academic excellence and to provide an opportunity for outstanding minority students with significant financial need to reach their highest potential by:

•Reducing financial barriers for African American, American Indian/Alaska Native, Asian Pacific Islander American and Hispanic American students with high academic and leadership promise who have significant financial need;

•Increasing the representation of these target groups in the disciplines of computer science, education, engineering, library science, mathematics, public health and the sciences, where these groups are severely underrepresented;

•Developing a diversified cadre of future leaders for America by facilitating successful completion of bachelor's, master's and doctoral degrees; and

•Providing seamless support from undergraduate through doctoral programs, for students selected as Gates Millennium Scholars entering target disciplines.

The Gates Millennium Scholars (GMS) Program, established in 1999, was initially funded by a $1 billion grant from the Bill & Melinda Gates Foundation.

The GMS Scholarship Award Provides:

•Support for the cost of education by covering unmet need and self-help aid;

•Renewable awards for Gates Millennium Scholars maintaining satisfactory academic progress;

•Graduate school funding for continuing Gates Millennium Scholars in the areas of computer science, education, engineering, library science, mathematics, public health or science;

•Leadership development programs with distinctive personal, academic and professional growth opportunities.

Program Accomplishment:

•Funding more than 15,000 Gates Millennium Scholars since the inception of the program

•Obtained a 79.9% graduation rate in five years*

•Supported Gates Millennium Scholars enrolled in more than 1,500 colleges and universities

•Supported Gates Millennium Scholars representing 50 states and five outlying areas

•Graduated over 7,000 Gates Millennium Scholars since the program's inception

•Five year retention rate of 87.7%*

*Reflects cohorts 1 through 4

To apply, or learn more, go to: http://www.gmsp.org/publicweb/AboutUs.aspx

Big Weekend in HPSland

2011-10-14T03:24:00.001-05:00

This coming weekend is going to be a big one in HPSland. Everyone’s prayers and good thoughts would be much appreciated. We have a large fundraiser this weekend at the OysterFest in Oyster Bay. A team of volunteers will be serving up goodies in the food court for a crowd of more than 100,000. We’re hoping for beautiful weather and lots and lots of business.

Another HPS team will be joining with a team from NOAH at the American Academy of Pediatrics.

They will be making pediatricians aware of albinism, NOAH’s info for new parents, and the importance of awareness/screening for HPS. NOAH also has info on their handout about Chediak-Higashi Syndrome.

Good luck to both teams!!! I wish I could be with all of you!

Hispanic Scholarship Fund

2011-10-13T16:32:00.000-05:00

The Hispanic Scholarship Fund awards a number of scholarships every year! They are accepting scholarship applications Sept. 1 – Dec. 15^th. There are opportunities for everyone from high school seniors to graduate students. Check it out at: https://apply.hsf.net/applications/

(Sorry for the small print - something's wonky with the larger font again.)

Some news on pulmonary fibrosis research

2011-10-13T16:05:00.000-05:00

This is a press release from our friends at the Pulmonary Fibrosis Foundation. It's too early to say what impact this potential therapy might have for those with Hermansky-Pudlak Syndrome. Still, pulmonary fibrosis research in general is likely to yeild valuable clues, just as research on Hermansky-Pudlak Syndrome could yeild valuable clues for the general pulmonary fibrosis community. I still, however, cringe at the term "IPF" as though that's a uniform disease it's self, separate from those of us who left the "I" behind a long while ago. The "I" means "Idiopathic" - and all that means is "unknown." For all they know, there are more than likely multiple causes and disease pathways at work, but they are just as of yet not understood. Call it a pet peeve I guess.

Pulmonary Fibrosis Foundation to Fund Further Therapeutic Evaluation Studies for Compugen-Discovered Drug Candidate

Potential use of CGEN-25009 for treatment of idiopathic pulmonary fibrosis previously demonstrated in animal disease model

TEL AVIV, Israel & CHICAGO, Oct 12, 2011 (BUSINESS WIRE) -- --Studies to be undertaken at the University of Pittsburgh School of Medicine and the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease

Compugen Ltd. /quotes/zigman/84014/quotes/nls/cgen CGEN -1.17% and the Pulmonary Fibrosis Foundation announced today that the Pulmonary Fibrosis Foundation will provide a grant to scientists at the University of Pittsburgh Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease to independently evaluate the therapeutic potential of CGEN-25009 for the treatment of idiopathic pulmonary fibrosis (IPF), a devastating disease with no current effective treatment and which is estimated to affect more than five million people worldwide.

CGEN-25009, a novel peptide agonist of the relaxin receptor, was discovered during the validation stage of Compugen's GPCR Peptide Ligand Discovery Platform. As already announced by Compugen, studies conducted by Professor Daniele Bani, a world expert in the field of relaxin and fibrotic diseases from the University of Florence (Italy), previously demonstrated the therapeutic effect of CGEN-25009, leading to robust reduction of the fibrotic tissue in the lungs of mice induced with pulmonary fibrosis. The results of Professor Bani's studies conducted with CGEN-25009 were recently published in the Journal of Pharmacology and Experimental Therapeutics.

Substantial worldwide research efforts have recently demonstrated that the natural peptide hormone relaxin, in addition to its historical role as the "pregnancy hormone," is multi-functional and affects a range of tissues. Known to activate the LGR7(RXFP1) G protein-coupled receptor, the diverse and vital roles of relaxin include protective cardiovascular and anti-fibrotic activity, and roles in reproductive health, wound healing, fertility and ageing.

"Our experiments are designed to further establish the anti-fibrotic properties of CGEN-25009 in multiple animal models of fibrosis, to elucidate the mechanism of CGEN-25009's anti-fibrotic effects, and to prioritize potential biomarkers for the study of CGEN-25009 in patients with idiopathic pulmonary fibrosis," said study leader Dr. Daniel Kass, Assistant Director for Novel Therapeutics and Translational Research at the Simmons Center.

"It is exciting that patient advocacy groups such as the Pulmonary Fibrosis Foundation are spearheading the effort to enhance collaborations between industry and academia in finding the cure for IPF," said co-investigator and Simmons Center director Dr. Naftali Kaminski, Professor of Medicine, Pathology, Human Genetics and Computational Biology. "This effort could generate significant insights that will potentially change our understanding and management of lung fibrosis."

Dr. Dan Rose, President and Chief Executive Officer of the Pulmonary Fibrosis Foundation, added, "Our Foundation is very excited to be able to fund these important next steps in the therapeutic evaluation of this very promising discovery. We hope that these efforts will lead to a follow-up collaborative development program and ultimately to an effective treatment for this devastating disease."

"Compugen is very enthusiastic regarding this collaboration designed to further evaluate CGEN-25009, an attractive product candidate with potential use not only in fibrosis, a key unmet medical need, but also in other clinical indications, such as labor complications, infertility and heart failure," said Dr. Anat Cohen-Dayag, Compugen's president and CEO. "As previously disclosed, Compugen is focusing its discovery and development efforts towards addressing unmet medical needs in the fields of oncology and immunology through the use of novel protein and antibody therapeutics. However, our underlying predictive discovery capabilities are broadly applicable and as part of the development and validation activities associated with establishing these capabilities, a number of very promising discoveries were made in other areas of medical need, both therapeutic and diagnostic. Therefore, although our primary business development efforts are directed towards our oncology and immunology Pipeline Program and 'discovery on demand' activities, we are now in various discussions for arrangements with other organizations to advance certain of these earlier discoveries, including a number of promising novel peptides, largely without the need for further Compugen financial resources, such as the collaboration being announced today."

About Idiopathic Pulmonary Fibrosis

Idiopathic pulmonary fibrosis (IPF) is a progressive disease characterized by scarring of the lung parenchyma leading to severely compromised gas exchange and ultimately to respiratory failure. Despite a significantly improved understanding of the molecular and cellular mechanisms of this disease, the prognosis is still poor, with a median survival of 3 years from the onset of symptoms. There is no known effective treatment, other than, in certain cases, lung transplantation. IPF is estimated to affect more than five million people worldwide.

About the Pulmonary Fibrosis Foundation

The mission of the Pulmonary Fibrosis Foundation (PFF) is to help find a cure for idiopathic pulmonary fibrosis (IPF), advocate for the pulmonary fibrosis community both locally and in Washington, D.C., promote disease awareness, and provide a compassionate environment for patients and their families. Its agenda includes:

-- substantially increasing funding for IPF research and assisting in creating partnerships between the academic research community and the biotech industry to drive new treatments;

-- fostering collaboration in the clinical community to share information and ideas, starting with the creation of an annual "IPF Summit" beginning in 2011, to improve channels of communication between researchers;

-- sponsoring a series of web-based educational seminars ("webinars") to bring the latest information and research to patients and families more efficiently;

-- establishing a National Affiliate Program to allow the PFF to reach new communities, grow its patient outreach capabilities, and expand its fundraising, advocacy, and disease awareness efforts;

-- strongly advocating for the IPF community both locally and nationally;

-- aggressively pursuing an increase in public awareness through a series of public service announcements, social networking, and traditional media exposure.

About Compugen

Compugen is a leading therapeutic product candidate discovery company, currently focused on biologics-based therapy to address important unmet needs in the fields of immunology and oncology, either for Compugen or its partners. Unlike traditional high throughput trial and error experimental based drug candidate discovery, Compugen's discovery efforts are based on systematic and continuously improving in silico (by computer) product candidate prediction and selection followed by experimental validation, with selected product candidates being advanced in its Pipeline Program to the pre-IND stage. Compugen's in silico predictive models utilize a broad and continuously growing infrastructure of proprietary scientific understandings and predictive platforms, algorithms, machine learning systems and other computational biology capabilities. The Company's business model primarily involves collaborations covering the further development and commercialization of Compugen-discovered product candidates and various forms of "discovery on demand" arrangements, in both cases providing Compugen with potential milestone payments and royalties on product sales or other forms of revenue sharing. In 2002, Compugen established an affiliate, Evogene Ltd. ( www.evogene.com ) (tase:EVGN.TA), to utilize certain of the Company's in silico predictive discovery capabilities in agricultural biotechnology. For additional information, please visit Compugen's corporate website at www.cgen.com .

This press release may contain "forward-looking statements" within the meaning of the Private Securities Litigation Reform Act of 1995. These statements include words such as "may," "expects," "anticipates," "believes," and "intends," and describe opinions about future events. These forward-looking statements involve known and unknown risks and uncertainties that may cause the actual results, performance or achievements of Compugen to be materially different from any future results, performance or achievements expressed or implied by such forward-looking statements. Some of these risks are: changes in relationships with collaborators; the impact of competitive products and technological changes; risks relating to the development of new products; and the ability to implement technological improvements. These and other factors are identified and more fully explained under the heading "Risk Factors" in Compugen's annual reports filed with the Securities and Exchange Commission.

Tired, tired – go away!

2011-10-13T15:23:00.002-05:00

Today is Thursday and I feel the best I’ve felt all week. This week I’ve really battled the fatigue. I feel like I could sleep all the time and am fighting to stay awake. Tuesday night I went to bed early for me, around 10:00 pm, slept with the CPAP all night, and didn’t even stir until 11:00 am the next morning.

My arms and legs feel like someone has put weights on them, so every little thing feels as though it requires more effort.

I’ve been putting in long hours for the HPS Network. We have so many exciting things going on, so I thought maybe I just needed a day off. I planned not to work yesterday and instead focus on my laundry, housework etc. All I managed to do was sleep and watch a little TV. I don’t remember much of what I watched though because I kept falling asleep!