Living on the frontlines

Curried Acorn Squash Soup 3 medium acorn squash, halved and seeded ½ cup chopped onion 3 to 4 teaspoons curry powder 2 tablespoons butter 3 cups chicken broth 1 cup half-in-half cream ½ teaspoon ground nutmeg Method: Place squash, cut side down, in a greased shallow baking pan. Bake at 350 degrees for 35-40 minutes or until the squash is almost tender. In a large saucepan, sauté onion and curry powder in butter until onion is tender. Remove from the heat; set aside. Carefully scoop out squash; add to saucepan. Gradually add chicken broth. Cook squash mixture over medium heat for 15-20 minutes or until squash is very tender. Cool slightly. In a food processor or blender, process the squash mixture until smooth; return to saucepan. Stir in the cream, nutmeg, salt and pepper. Cook over low heat until heated through (do not boil). Garnish soup with crumbled bacon if desired. Note: If you like curry, you’ll love this soup. Don’t worry th...

Those of us with Hermansky-Pudlak Syndrome, Chediak-Higashi Syndrome, or any of the more common types of albinism often have a lot of questions about genetics and how genes work. The American Society of Human Genetics has some educational materials on their Web site that are written in very basic, easy-to-understand language. It's not an explanation of albinism - but more an overview of genetics. If you keep in mind that most forms of albinism are autosomal recessive (a recessive gene carried by both parents), you can start to put it together. (Just for anyone happening on this from the general albinism community, there is a form of ocular albinism that is x-linked.) Check it out here: http://www.ashg.org/education/everyone_1.shtml

The U.S. Department of Health and Human Services has launched a new Web site to provide information about the Affordable Care Act in Spanish. The site includes information about Medicare, the new pre-existing condition insurance plans, and more than 1,000 private insurance plans. Consumers are able to use the site to compare plans in terms of their life situation and location. Visit the site at: http://www.cuidadodesalud.gov/enes/

Regular blog readers have often heard me talk about the joys of traveling with a suitcase full of medical devices, medical supplies and lots and lots of medicines. I'm the businessman's nightmare in the security line at the airport. One of the reasons I now use airport assistance (I didn't used to do it)  is because it's a way to avoid holding up the entire security line while TSA inspects all the unusual items in my suitcase. Today I saw this item in the National Organization for Rare Disorders (NORD) newsletter. I thought perhaps others with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome could use this. Transportation Security Administration (TSA) Develops Disability Communication Card The TSA has recognized that some individuals need a discreet way to communicate with Transportation Security Officers (TSO) that they have a disability, medical condition or medical device that might affect their screening. In response, the TSA is offering a disability ...

HPS Fundraiser Dinner Nov. 11, 2010 – 6:30 pm Moran’s Restaurant 103 Washington Street New York, NY 10006 (Downtown Manhattan) Join the HPS Network for a fundraising dinner in downtown Manhattan, Nov. 11, 2010. The event begins at 6:30 with a social hour. Dinner will be served at 7:30 pm. Dinner will include: Penne pasta ala Vodka with chicken; salmon wellington with wild rice, mushrooms and tarragon in a pastry shell with a beurre blanc; roast potatoes; fresh vegetables; greens; Italian breads and unlimited sodas. Raffle items will also be available. Guests must register in advance. Seats are $50 each for dinner. To make a reservation, contact: Lisa Koss: Lisa.Koss@earthlink.net (718) 565-6970 or Brenda Lopez: brendapr77@hotmail.com (646) 342-2762. Registration and payment deadline is Nov. 1st.

OyterFest Oct. 16 – 17, 2010 On the waterfront at Theodore Roosevelt Park, Oyster Bay, NY The Hermansky-Pudlak Syndrome Network will once again sell delicious goodies in the food court at the OysterFest in Oyster Bay as a fundraiser. Come out and support those with the HPS type of albinism and enjoy all the OysterFest has to offer such as the tall ship parade, land and sea rescue demonstrations, oyster eating and shucking contest, pirate shows and multiple entertainment stages. To learn more about the festival, or to see a festival schedule, go to: www.theoysterfestival.org.

This is another item I'm passing along for those that might be interested. It's never too early to get started on these things. I am a former national scholarship winner. My advice is to keep trying if you haven't been successful in the past. The year I won my national scholarship was the second year I applied. Unfortunately, I didn't know I had HPS then and was horribly ill at the conference. I'm sure no one knew how ill I was as I was trying to cover it up and compete. I nearly passed out on several occassions and was so tired because I was GI bleeding and getting very anemic. Most state affiliates also have scholarship programs, and usually the application form is the same. Apply at both the state and the national level. Good luck!!!! For Blind High School Seniors through Grad School Students $12,000 Scholarship The Kenneth Jernigan $12,000 Scholarship and 1 Scholarship for $10,000 2 Scholarships for $7,000 each 4 Scholarships for $...

I"m posting this simply to share information with any readers who might benefit. Please note that in the past you had to be in New York to take advantage of these sessions - now they are being broadcast on the Web so you can attend from anywhere! SAVE THE DATE Monday, September 27, 2010 The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a Technology Demonstration featuring Make Life a Little Easier with Some Low Tech Solutions Time: 2:00-4:00pm and 7:00-9:00pm Where: Baruch College 55 Lexington Ave. Room 14-270 One entrance is on the south east side of 25th Street between 3rd and Lex Ave. in the middle of the block. It’s directly across the street from CCVIP's classroom building. The 2nd entrance is on the north east corner of 24th Street and Lexington Ave. This entrance has stairs. There is a ramp at the far end of the stairs on 24th street. What: Join us as we launch the second year of the Techno...

Do you use family photos on your Christmas cards? Do you plan to send out baby announcements soon? Or maybe you took a fantastic photo on your summer vacation that would be perfect for a greeting card? Now you can upload your own photos, design your own cards and 33 percent of the purchase price will go to the HPS Network. Go to www.hpsphotocards.com to order! (You have to go to the NanoSnap site through this url or we won’t get credit for the sale.) Would you like to help those with the Chediak-Higashi Syndrome type of albinism kick off their first ever CHS-branded fundraiser? They are raising money in hopes that one day they’ll be able to have their own conference. You can purchase cards that will benefit the CHS Association at: www.chsphotocards.com. So, that’s the sales pitch – now for the mushy bloggish stuff. I don’t know why, but I’m a sucker for stationary. I hardly ever write an old-fashioned letter using actual pen and paper, yet somehow I get drawn to pretty cards, pretty pa...

I found the following article on the Pulmonary Fibrosis Foundation's Website. They are doing a great job of pushing news to Facebook - and you all know I'm a little of a Facebook junkie. Before anyone asks - as I'm not exactly in the Howard Stern demographic - the answer is no, I'm not a big fan of the show. I am, however, from a journalissm background and thus tend to prefer to error on the side of the first amendment. I don't have to like what someone says, but they've got the right to say it, and I have the right to respond. When it comes to the cure, it's neither here nor there. The fact is whenever someone in a position to have great media access has an experience with pulmonary fibrosis, it increases public awareness, which in turn increases funding which in turn increases research. That helps all of us, and you've got to give thanks where thanks is due. Now, if only we could get more in the pulmonary fibrosis community to understand what the HPS c...

Congradulations to Shirley! She's the latest winner in the Names for the Cure challenge. She actually submitted more than 10 names for the capital campaign database. Way to go Shirley! Stay tuned for the next Names for the Cure challenge!

I'm passing along the following press release as I know it will be of some interest to some readers. I cut out the contact info because something was really wonky with the formating and I couldn't find the little peice of code that was messing things up. I know you'll find the release, with contact info. on the NFB's Web site at www.nfb.org . News Release eBay and National Federation of the Blind Partner to Increase Ecommerce Job Opportunities Innovative Partnership aims to empower blind Americans to gain employment, start businesses while buying and selling on eBay San Jose, Calif. – September 15, 2010 – eBay, the world’s largest online marketplace, and the National Federation of the Blind (NFB) today announced a partnership to create more opportunities for blind Americans to access eBay as buyers and sellers. eBay.com now includes enhanced features for users to buy, bid and sell using the keyboard alone, as well as improved ways to navigate content using assistive tec...

Some researchers at Northestern University are doing a study on parenting a child with special needs. They are funded by the National Institutes of Health. I couldn't see the questions they ask as I'm not a parent and didn't want to currupt their data. They say the survey will take about 45 minutes. If you're interested, check it out and see if you want to participate. I'm just passing the info along. https://www.surveymonkey.com/specialneedschild

Hermansky-Pudlak Syndrome is featured in a book about lung disease recently published by the American Thoracic Society. Titled, Breathing in America: Diseases, Progress and Hope , the book is being distributed to key members of the media as well as to all members of Congress. HPS is featured in chapter 18 on rare lung diseases. Donna Appell, President of the HPS Network, served as a contributing editor on the project. She not only helped to compile the chapter on rare lung diseases, but also served as an editor for the other sections of the book. Janet Perez’s story of diagnosis and lung transplant was featured as a case study in the book. Ashley Appell’s photo also appeared in the chapter on rare lung diseases. To download a free copy of the book go to: http://www.thoracic.org/education/breathing-in-america.pdf. The chapter featuring HPS is chapter 18.

HPS Network members in the New England area exhibited at the Back-to-School fair in Bridgeport, CT in August. Emilio Ortiz, Jenny Ortiz, Carmen Camacho, Frankie Feliciano and Gabe Feliciano were on hand to man the table and answer questions about Hermansky-Pudlak Syndrome. The fair was held in a heavily Puerto Rican area and several attendees picked up brochures to share with family and friends affected by albinism. Other exhibitors at the event included organizations offering behavioral and mental health services, after school programs, health and safety programs as well as many other community resources.

This month the Names for the Cure contest is a race! The first person to submit 10 names and addresses (either snail mail or e-mail) will receive a $10 iTunes gift card. Names for the Cure is a program to help the HPS Network create a mailing list for the annual fundraising appeal letter (the Capital Campaign). This database is maintained separately from the membership database. The annual appeal letter is the only letter sent to this group – thus they do not receive tons of junk mail from the HPS Network. Names and addresses can be submitted to the HPS Network at: info@hpsnetwork.org or via snail mail at: One South Road, Oyster Bay NY, 11771.

Double your donation dollars this Halloween season and help the HPS Network scare up some money for the cure! A generous challenge grant has been funded by Fran Gomez Moore whose mother, Aurora, passed away from the pulmonary fibrosis of HPS. The grant will match every donation, dollar for dollar, for the next $500 donated to the Network turning Fran’s donation of $500 into $1,000. To make a donation, go to: http://www.hpsnetwork.org/en/get-involved/donate Or, send your donation via snail mail to: HPS Network One South Road Oyster Bay, NY 11771

Here's a great idea for anyone interested in doing a fundraiser for the HPS Network. As I hope you all realize, we are in great need of funds for this year's conference. This would be an especially great fundraiser if you've got access to a high traffic area. We have a number of college students - a college campus would be ideal! 4 Ways To Raise Funds -------------------------------------------------------------------------------- Traditional Doughnut Sales Krispy Kreme offers our doughnuts to non-profit groups at a reduced price, which are then resold for full retail price, or slightly higher. Pre-selling doughnuts to family, friends and neighbors or selling doughnuts at high-traffic areas such as shopping centers or community festivals can generate significant funds. Check with your local Krispy Kreme store regarding ordering details. -------------------------------------------------------------------------------- Certificates Certificates are a great alternative to selli...

Below is another post from the HPS Adults Yahoo Group that I thought many of you might find useful. Scholarship Program for People with Disabilities The American Association on Health and Disability (AAHD) is accepting applications for its 2011 scholarship program. Applicants must have a documented disability, be majoring in a field related to disability and health, and be enrolled in undergraduate or graduate school. The deadline for applications is November 15, 2010. Click here to learn more about the AAHD scholarship program.

Below is an e-mail posted to the HPS Adults Yahoo! group today by Shirley. This is a great way to get a start working for the federal government. My brother Ryan is a former WRP intern. I thought I'd post not only for HPS'ers, but for everyone in the albinism community or low vision community that keeps up with the blog. Good luck! P.S. This post is from a specific college. You should check with your own college's career development, job placement or disability services office. The WRP is a recruitment and referral program that connects federal and private sector employers with highly motivated postsecondary students with disabilities who are eager to prove their abilities in the workplace through summer or permanent jobs. In COSA we are coordinating CUNY's participation in this federal collaboration of the Office of Disability Employment Policy (ODEP), the U.S. Department of Defense (DOD) and the Department of Labor (DOL). Applicants for the program must: - have a disa...

Here's a Hundred People Search update - HPS! We added a new person to the database this week putting us at 78 to go on the Hundred People Search. We still have a number of people in testing etc. Still, we all need to keep up the outreach efforts. It's important that anyone with HPS get a diagnosis - it could save lives. Keep up the great work!