Living on the frontlines

I've been doing some research and ran across this organization that gives a LOT of scholarships to Latinos going to college or community colleges. The application period opened Sept. 1st and I can't find the actual deadline - but if it's past for this year you can always stick it away for next year. Although these scholarships aren't for the blind or visually impaired, I thought that since about 80 percent of HPS'ers are of Puerto Rican background, many of you would know someone who could use this info. http://www.hsf. net/Scholarships .aspx?id= 1328

The HPS Network recently joined with several hundred other patient support and advocacy groups to urge the Obama administration to continue to make funding for the National Institutes of Health a high priority as the administration begins work on a new national budget for 2011. The NIH received an influx of billions of dollars from the American Recovery and Reinvestment Act of 2009. The joint letter to the administration urges the President to continue to fund job-creating projects that come out of the many two-year grants recently established. The National Institutes of Health remains the hub of clinical research for Hermansky-Pudlak Syndrome as well as Chediak-Higashi Syndrome, among many other ultra rare orphan diseases. Recently, the NIH has opened a protocol for other types of albinism as well. Without the unique research opportunities made possible by a federally-funded institution like the NIH, many orphan diseases would go without research as well as potential treatments and cu

Once again, this is something I'm just passing along. I know the dates are from last year, but if you're interested, I'd contact them. Perhaps they just haven't updated their Web site yet. Association of Blind Citizens Scholarship Program The Association of Blind Citizens will offer ten thousand dollars in college scholarships to legally blind individuals seeking a college degree. The Reggie Johnson Memorial Scholarship will be valued at $2000 and eight $1000 scholarships will be available. The scholarships will be offered for the 2009/2010 school year. The scholarship may be applied to tuition, living expenses or related expenses resulting from blindness You may fill out the application below by pasting it in to your word processor and emailing it to: scholarship@blindcitizens.org . Association of Blind Citizens 2008/09 Scholarship Application Name: First Line Of Address: Second Line Of ADdress: City: State: Zip: Telephone Number with area code: Provide a 300 to 500 wo

Below is just a peice of information I happened to run across. Honestly, I haven't heard of this group before. However, I know several readers are in need of programs such as these, so thought I'd pass it along. The Association of Blind Citizens operates the Assistive Technology Fund The Assistive Technology Fund (ATF) will provide funds to cover 50% of the retail price of adaptive devices or software. The ABC board of directors believes that this program will allow blind and visually impaired individuals access to technology products that will have a significant impact on improving employment opportunities, increase the level of independence and enhance their overall quality of life. The products covered by this program must retail for a minimum of $200 with a maximum retail price of $6,000. Persons eligible to apply for assistance must have a family income of less than $50,000 and cash assets of less than $20,000. Applications will be reviewed by the Assistive Technology Comm

I'm passing along the following press release for those interested - but there's more to GINA going on and I'll update that shortly. PRESS RELEASE11/20/09 Historic Genetic Information Nondiscrimination Act Takes Effect EEOC Assumes New Area of Jurisdiction to Protect Confidentiality of Genetic Information WASHINGTON -- In the first legislative expansion of its jurisdiction since passage of the Americans with Disabilities Act (ADA) in 1990, the U.S. Equal Employment Opportunity Commission (EEOC) on Saturday will assume responsibility for enforcing Title II of the Genetic Information Nondiscrimination Act (GINA). GINA, signed into law in May 2008, prohibits discrimination by health insurers and employers based on individuals’ genetic information. Genetic information includes the results of genetic tests to determine whether someone is at increased risk of acquiring a condition (such as some forms of breast cancer) in the future, as well as an individual’s family medical histo

I'm glad I'm going to see Dr. Seward next week. I'm in one of those fatigue phases. I've spent most of the last two days asleep, even though I've gotten up and tried to be active. I've had the runs - actually five times in the last hour so I don't think I'm going to bed anytime soon. I'm alwasy afraid to go to sleep when I'm having this problem because I'm afraid the faucet, sort of speak, will keep flowing and I'll have a rather regretable explosion. Trust me - it isn't pretty. I've also been coughing more than usual. I know it isn't just me as several friends have mentioned it. When I try to exercise I really start coughing, so I have a feeling my asthma meds need to be adjusted. I need to blog about my insurance saga - I just haven't had the energy to be honest. More later.

Dear Friends and Colleagues, CCVIP invites you to a celebration of Braille and its inventor, Louis Braille! On Thursday, December 3, at 6:00 p.m., CCVIP will host a presentation by Michael Mellor, author of "A Touch of "Genius," his definitive biography of Louis Braille, as a kick off to the traveling exhibit on Braille, his life and work that will be on view at Baruch's William and Anita Newman Library from November 23 through December 23. We will hear author Mellor read from his book and talk about the process of researching it. Reception, book signing (and sale) and a tour of the exhibit will follow the presentation. Please RSVP at (646) 312-1420. Attached is an invitation that you can print and share with friends or simply e-mail. Please feel free to share this message with others who might be interested. Thanks, and we look forward to greeting you on December 3rd at, 151 East 25th street, between Lexington and 3rd Avenues, in room 750. Sincerely, Karen Gourge

I'm posting this message from Karen T. If anyone's in the Greensboro area and can help, I know she'd really appreciate it. You don't have to be an HPS'er to help - just willing to pitch in. Hey gang, If you live close to Greensboro, NC and would like to help the HPS Network earn some cash please let me know by Wednesday 10AM. This is the challenge: Belk's Dept store at Four Seasons Town Center in Greensboro, NC is allowing nonprofits to earn extra Christmas money for wrapping people's gifts. We will be getting donations from Belk customers, and hopefully Belk will kick in a little extra. Not sure about Belk's kicking in, but I do know they are really nice to nonprofits. You will be wrapping for, of course The HPS Network. If you can work any day or time between now and Dec. 24th PLEASE contact me like yesterday. However by 10am Wednesday will be fine. 336 954 3604. I have already scheduled myself for Fri. Nov 27 noon to 4pm, Sun. Nov. 29 noon-7pm,

As always, this falls under the heading, just passing along...... 2010 NFB LAW Program The National Federation of the Blind Announces the NFB Leadership and Advocacy in WashingtonProgram for Students Engaging the Voice of America’s Blind Youth Applications are due by February 1, 2010: APPLY ONLINE! Program Details: Who: Youth who are in Grades 6-9 or Ages 12-16 during the time of the programWhen: April 16-20, 2010Where: Washington, D.C., and Baltimore, MarylandCost: There will be a $250 fee per student/chaperone pair. All other expenses including transportation, room, and board will be provided for each student and their chaperone. All accepted students must be accompanied by a parent/guardian, teacher, or blind/low vision mentor from their home state, a total of twenty-five participants from across the country will be accepted. About the Program: The NFB Leadership and Advocacy in Washington, D.C., (LAW) Program will be a four-day experience that will provide blind and low vision st

It's early, early in the morning and I just talked to mom. She sounded GREAT!!!!! Ryan had talked to her yesterday before I had, and reported the same thing. Mom says the eye looks much better now that it's stitched up. It's not bleeding and draining anymore, although it's still swollen. Her vision is improving and is expected to keep getting better as the swelling goes down. There is a chance that they'll have to go back after everything is healed for a little more plastic surgery, but otherwise, everything is going very well. Thank you so much for all your prayers. I'm so grateful to her team of doctors. If they hadn't caught that blood clot, I wonder what would have happened to her vision, or if the clot had gotten loose so close to her brain - it makes me shutter! Mom says she's been very happy with the care she's had in this hospital. She says they've watched her so carefully and called in any specialist she needed without hesitation. She sa

Maria G. was unable to make it to the HPS Network get together in New England because she was in the hospital. This weekend, however, Carmen and Frankie the Cat got together with Maria and her family. Our reliable Cat got some photos of the event. Please say some prayers for Maria G. Her paperwork is being reviewed this week by a transplant center. I also think a fundraiser is in the works for her, so when I know details I'll pass those along too.

Mom had her third surgery of the week. I don't have a lot of details. I talked to her right before they took her off and she got emotional for the first time. She said it wasn't that she was scared, it was more that she was just so sick of the whole thing. I think those of us who have spent time in hospitals understand that. At a certian point, even if you're feeling badly, you've just had enough of the place and you want to be home. I spoke to her again in the evening her time. She was sleeping so all she said was that everything was fine and not to worry. I hope that's true. I suspect she needs the sleep as they've been checking that eye every hour since it was so fragile. I'm sure she hasn't slept well as a result. I just told her sweet dreams and let her go back to sleeping.

Thank you so much to everyone who has been praying for my mom. To recount, briefly, for those who do not know, here’s what’s happened. Last April mom noticed a small bump under her eye. It was tiny, like a little sty, but it bothered her to feel a bump and not know what it was. She saw a doctor, who thought it was nothing. Mom felt the bump was growing, so when she was home this summer, she saw several specialists here in the United States. They scanned and probed, but couldn’t determine what it was, so they decided it was nothing. I felt it when she was here this summer, and it felt like a hard cyst about the size of my thumb nail on the bone right under her eye. It was strange, but it caused her no pain. When mom returned to Germany, she felt the bump was still growing. It worried us both. After all, bumps aren’t supposed to grow. Mom also started having episodes of vertigo, which oddly seemed to alarm me more than her. She was probably putting an act though. She returned to her Germ

I'm just posting this for anyone interested. The U.S. Department of State through the National Security Language Initiative for Youth (NSLI-Y) provides merit-based scholarships for eligible American high school students to learn less commonly taught languages in summer, semester, and academic year overseas immersion programs. NSLI-Y encourages all American citizen 15-18 year-olds with any level of language experience who have a passion for communicating across cultures, learning languages, and living abroad to apply. What Languages are Offered? In 2010/11, there are seven languages: Arabic, Chinese (Mandarin), Hindi, Korean, Persian (Farsi), Russian, and Turkish. How do I Apply? For more information and to apply online, please visit nsliforyouth.org. Application deadline is December 4, 2009. Address your questions to: nsliy@americancouncils.org or call 866.790.2086. Who is Eligible? - U.S. Citizen - Currently enrolled high school, or just graduated, 15-18 at the start of the progra

National Federation of the Blind Partners with Santa to Promote Braille Literacy 11/16/2009 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 16, 2009): 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 toda

National Federation of the Blind Commends Parties to Google Settlement 11/17/2009 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 Commends Parties to Google Settlement Terms of Amended Settlement Agreement Will Revolutionize Blind People’s Access to Books Baltimore, Maryland (November 17, 2009): The National Federation of the Blind today commended Google, the Association of American Publishers, and the Authors Guild for retaining important provisions in the amended settlement relating to the Google Books project that will allow people who are blind or have other print disabilities to access the books that Google makes available to the public. The amended settlement between Google and authors and publishers regarding the Google Books project, if approved by the courts, will have a profound and positive impact on the abilit

Gear Up for Greatness! National Federation of the Blind 2010 Junior Science Academy A STEM Program for Blind Children Ages 8-12 Baltimore, Maryland, at the NFB Jernigan Institute In 2008, the National Center for Blind Youth in Science (NCBYS), a program of the National Federation of the Blind Jernigan Institute, offered its first Science Academy program for elementary students. Once again, we are making this program possible for children in grades three through six. The NCBYS developed its Junior Science Academy (JSA) in 2004 in order to spark and enhance blind students’ interest in scientific study, an academic area that many falsely believe is too difficult for the blind. This year, with hands-on experiences, tactile materials, and innovative nonvisual teaching methods, the JSA will open its doors again to young explorers with two sessions of the program. Applicants can apply for one of the following dates: Session 1: July 28-August 1, 2010 Session 2: August 4-August 8, 2010 The Juni

I thought this would be of interest to some of you. National Federation of the Blind Braille Readers Are Leaders Contest The Braille Readers Are Leaders Contest is a national contest for students who read Braille, kindergarten through twelfth grades, and all adult Braille readers. The purpose of the program is to promote the joy of reading for pleasure, to promote a pride in Braille as a viable literacy medium equal to print, and to demonstrate the importance of independent reading in the development of Braille literacy skills. What's New? We have added a number of new elements to the competition this year. Along with a contest for children grades K-12 there is a contest for adults this year. Adults with various levels of experience reading Braille have the chance to join in the fun! The adult competition will very closely parallel the traditional student competition with all of this year’s additions (for more information see below). Participants now have the opportunity to form te

Last night I had a wonderful dream. I dreamed I was a ballerina in a wonderful stage production – Swan Lake I think. I was dressed in a beautiful white flowing costume and white leotard and as the music played I leaped and jumped and twirled effortlessly, as if floating on air. I was a lot thinner in my dream, and my joints definitely felt no pain. That is until I fell. I dreamed I fell and twisted my ankle and it really hurt. I woke up and the covers were almost completely off the bed and my ankle was throbbing. I must have been dancing in my sleep. No wonder I’m always so tired. I’m too busy in my sleep. I can’t even avoid injury there! I wonder what a dream analyst would say about this?

Today I was having another one of my low-energy days. I was resting and listening to a radio program documentary about the disappearance of small town America. That might be a news story to people living on the coasts, but it’s old news here in the heartland where nearly everyone can remember a town that now either no longer exists, or is barely hanging on for dear life. It’s a brain drain. Corporate farming now means the family farm is either a place where people work to exist, often working outside the farm to preserve their way of life – or it’s a feeling of nostalgia – a memory from our Normal Rockwellian past that makes us feel all wholesome inside. Today kids that grow up in small town America more often than not go away to college and don’t return. They go in search of jobs and spouses – neither one of which is available in so many dying communities. It’s a strange feeling to remember places that no longer exist. After all, in your memory, they seem so alive and present. The hou

A big kudos to Karen T for managing the first two of our craft sales. We have two more in December at the Christmas concert. We made just under $300 so far - not bad considering most of our items were small items. Way to go Karen and way to go crafters!

The HPS Network is planning to hold a drive at its annual conference, March 19-21, 2009 in Uniondale, NY to help the Canadian non-profit, Under the Same Sun gather items for people with albinism in Tanzania. People with albinism in Tanzania have lived under threat for several years now, thanks to witch doctors who claim they can create powerful potions to create wealth from the body parts of people with albinism. For decades the graves of people with albinism were robbed to make these potions; however, now the witch doctors have claimed that parts from live human beings are more effective. They even claim that body parts from babies or small children hold the most power. More than 50 people with albinism have been murdered in Tanzania in recent years, and more have sustained horrific injuries. Many people with albinism in Tanzania are staying in safe zones at area schools so that they can be better protected. People with albinism in Tanzania have little if any access to sunscreen, sun

It's been a busy week with new families. This week we added four new people to the patient registry at the HPS Network. That means we have 29 to go to meet our Hundred People Search goal for the year. I really think we can make it this year, if not blow our goal right out of the water. I sometimes worry that strangers might not understand our Hundred People Search. They might think we're actually happy to have people diagnosed, and that might seem grusome to them. I'm never happy that anyone has HPS. I am happy, however, when they are diagnosed because it means they've got a better shot at a happy and healthy life. It means they know what to do and can take control of their care. It's hard sometimes because I know that there are others out there living with HPS, but they don't know it yet. Maybe they've been lucky to have great health so far, but if that ever changes, they'll be at a horrible disadvantage for the best outcome. It's also important, fr

As the holiday season approaches, don’t forget about the HPS store on the HPS Network Web site – www.hpsnetwork.org . Yes, our own store is up and running with HPS gear for that HPS’er in your life – grin. For sale you’ll find the Christmas CD by “J” called Another Christmas. You can listen to clips on the Web site. It makes a great holiday gift. Is your red “fighting for the cure” t-shirt getting a little faded? Pick up a new one online! Or, maybe you’d prefer one of the newer polo shirts in pink or blue. Lastly, there’s the red HPS umbrellas, perfect for rainy days or for providing a little instant shade on a sunny day. You no longer have to wait for conference to stock up on your HPS favorites!

Lately I feel as though I’m probably getting on everyone’s nerves. I feel like all I ever post about, either here or Facebook or on the listservs, is fundraising. If I’m sounding like a broken record, I’m sorry. I can’t help it. This year is a special kind of year in HPSland. Sometimes I look around at the needs in our community – the needs of our families, of those with HPS and of the Network – and it all seems overwhelming. How on Earth are we going to get it all done? I sometimes feel as though we’re barely scratching the surface and there’s so much more to do. I feel like conference for many is going to be especially important this year. We’re all a little tender in the spirit from the closing of the drug trial. We need to be with our “family” to console one another in person as well as to motivate everyone to soldier on to the next phase of our journey. None of us can do it alone. We need each other. We also need to have a strong turn out for conference to send the message to our

As the holidays get closer - trust me, they're coming - don't forget that you can holiday shop and benefit the HPS Network all at the same time. If you shop through the www.igive.com Web site, a percentage of your purchases will go to the HPS Network. The site has more than 700 stores such as Eddie Bauer, Expedia.com, JCPenny etc. You can pretty much find anything on your shopping list.

It’s been a few weeks since this happened. I wasn’t as worried as I usually am about recording it “in the moment” because the film crew came to visit and filmed the entire thing. Our trial of Pirfenidone came to an end and so after three years, I had the option of learning whether I was on active drug or placebo. My curiosity, of course, would have gotten the better of me – I had to know. By the time the NIH was ready to tell me, however, I was somewhat resigned to being indifferent about the answer. Perhaps a coping strategy my subconscious had created – perhaps it really isn’t that big a deal after all – either way I was ready. I had been worried that if I was on placebo, and had improved so much on my own, that the NIH would decide I was prone to the power of suggestion and decide I wasn’t a good research subject for future studies. The research is so important. I would never want to throw things off because of my own psychological baggage. The thing is I know in my heart I tried my

There’s nothing like the anniversary of a major historical event to make one feel old – not that I’m complaining mind you. Still, it’s hard for me to imagine that it’s been 20 years since the fall of the Berlin Wall. It’s even harder for me to listen to today’s news reports and realize there’s an entire generation of Germans who don’t even remember a divided Germany, or all that the Berlin Wall really meant to people on both sides. The night the Wall fell my family was eating dinner at the Officers and Enlisted Combined Club at Garlstadt. The 8 o’clock news came over the Armed Forces Radio Network and announced the borders between East and West Germany were open. Not one of us said a word. I think each of us probably thought we’d heard the news wrong. The truth is the Wall had been on its way down for months, but to us at the time, it was such an icon of the age, it was hard to imagine it would come tumbling down just like that. Only a few weeks before we’d been in East Berlin shopping

Because I've been so tired, I haven't really felt up to playing with my new toys. One of my new toys is a scanner. It's just your typical scanner, but I was a bit hopeful I could use it to scan in artwork and then apply the artwork to other things. This is a watercolor I did that I wasn't very pleased with to be honest. I thought maybe I'd crop out the background I don't like and put it on a notecard as an experiment. Here's the scan though. It's okay, but the colors aren't as bright as they are in the actual peice of artwork. I thought for the card I'd put on the inside, "Even when life brings rain, don't forget to stop and smell the flowers."

This is just a brief update for record keeping. I think I need to go get some blood work done. My sleep patterns are all out of wack, but even when I'm awake, I seem to only be productive about five hours a day. I get up at a normal time and fall asleep at the table, or at my desk. I don't feel sick, although my asthma and joints seem flared up. I just feel overwhelmingly tired. That's partly why I'm so behind on blogging!

A big kudos to Karen T and Tommy for manning the season's first craft sale. This particular sale was held for non-profits only and was a first-time event, so hopefully it will grow next year and we'll be on the ground floor. Here are some pics Karen and Tommy sent.....way to go!

I'm just posting this as a service to pass along. SAVE THE DATE Thursday, November 19, 2009 The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a Technology Demonstration on Accessible Book Readers Time: 7:00-9:00pm Where: Baruch College , 17 Lexington Avenue (between 22nd and 23rd Streets, on the east side of Lexington Avenue ), Room 1220 What: Join us as we look at the options currently available for reading electronic books. We will be demonstrating devices such as the Victor Reader Stream, the BookSense and the new digital National Library Service reader. How do these devices work? What can they do? How much do they cost? Admission: Free Reservations: Call 646-312-1420 Thanks to everyone who joined us for the last demonstration in October. We look forward to having you with us again and to have many new faces in November. If you are unable to join us in person, watch it on the web at the address below: http://media.baruch.cuny.e

Below is a press release from Intermune, the company that produces Pirfenidone, the drug the NIH was studying to treat the pulmonary fibrosis of HPS. I thought HPS'ers might like to know that even though our study didn't reach a conclusion, Intermune is going ahead with the results from the IPF trial and seeking FDA approval. That means that if the FDA finds the drug is safe, and if they are convinced the drug has beneficial effect after they review the data, the drug may be on the market in several years. HPS'ers may have some difficulty accessing the drug if it hits the market for a variety of reasons, but you can be sure that the HPS Network will work on that issue if the drug is approved. In the meantime, I think it's hopeful that the drug has been submitted to the FDA. Here's the press release: InterMune Announces Submission of NDA for Pirfenidone for the Treatment of Patients with IPF BRISBANE, Calif., Nov. 4 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq:

Here are some photos from a gathering of HPS'ers and their families in New England. Thanks, once again, to our favorite photog, Frankie the Cat! There is a lot of interest in organizing future events in the New England area. I think I've heard rumors about a possible Christmas party. If you have interest in these events, let me know and I'll put you in touch with Carmen.