Living on the frontlines

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 and 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. 

The Richie’s Spirit Foundation offers an annual scholarship to a graduating high school senior in good academic standing who plans to attend college or vocational school.  The Richie’s Spirit Foundation honors the memory of Richie Herskowitz, a boy with Cystic Fibrosis who received a double lung transplant. Sadly, he passed away at 17 years old.  His family honors his memory by promoting organ donation and offering an annual scholarship through the foundation.  To learn more, go to: http://richiesspirit.org/

Sometimes blessings come from unexpected places. This year we had the opportunity to have not one, but three, booths at the Oyster Festival. The crew in New York sold the usual ribs and chicken etc. We also got to have a smoothie booth, and a booth to sell Dare to be Rare t-shirts! I've done the Oyster Festival, and I can personally tell you it's not an easy gig. It can be windy and cold and its lots and lots of hard work! Hats off to the troopers who helped us out!!!!! 

This week the HPS community lost another friend and advocate. Maria Gonzalez passed away in Puerto Rico. Maria was not awaiting a lung transplant. She passed away at home with her family. She was 51 years old.  Maria did all that she could to help her HPS family. Even on hospice and pretty much restricted to bed, she was calling her HPS friends in Puerto Rico and encouraging them to come to the Puerto Rico conference. She was asking the HPS Network office for brochures so she could give them to the nurses that came to care for her.  She was a dear friend to many.  The one memory that will forever be in my mind about Maria was seeing her at the 2011 conference in New York. The theme was "The Academy Awards." Maria planned for the event. She had a special dress and made a grand entrance, oxygen and all, just like a movie star. This is a photo of that moment. It's the way I will remember her. She's beaming ear to ear!  I am so glad that we got a chance to visit

I've had a little trouble with my blog lately, so even though I've tried to be better about posting, it hasn't been working. I think I've fixed it! This week (and since I last updated) we've added two new HPS'ers to the global Hermansky-Pudlak Syndrome registry. This puts us at 80 more to go on thee Hundred People Search. The data does not include the registration information from the Puerto Rico conference. The office hasn't received that yet. Also, we have several people in testing. We hope they test negative! But, as the new lab is getting up and going, they are only running a few tests a week. As a result, there's a bit of a waiting list. 

This year we had not one, but three, booths at the Oyster Festival. This one was selling Dare to be Rare t-shirts. Jasmine and her family did an awesome job with this!!!!!!! 

The American Association on Health and Disability (AAHD) will award several college scholarships to undergraduates (but not incoming freshman) studying public health or interested in careers focusing on disability research. Completed scholarship applications must be submitted by Nov. 15 th . For more information, e-mail: : scholarship@aahd.us . 

The U.S. District Court of Southern New York has ruled that providing access to digital format books is a “transformative use” under the fair use provision of the Copyright Act and the Americans with Disabilities Act.  The ruling will allow university libraries digitizing their collections to make digital books available to the blind or visually impaired. The University of Michigan, for example, is planning to digitize 10 million volumes.  Dr. Marc Maurer, President of the National Federation of the Blind, (which joined the lawsuit to represent the interests of legally blind Americans) says, ““Access to the printed word has historically been one of the greatest challenges faced by the blind.  The landmark decision by the United States District Court for the Southern District of New York will revolutionize access to books for the blind.  For the first time ever, blind students and scholars will have the opportunity to participate equally in library research.  The blind, just like t

The Just Breathe Brunch, held Oct. 7th at Sazon, a Puerto Rican restaurant in Tribeca, New York, raised approximately $1,400 for the HPS Network. Brenda Lopez and Fran Gomez Moore co-chaired the planning committee for the fundraiser.  HPS supporters paid $60 for several hours of sangria, wine, appetizers and brunch. A raffle was also held at the event. Attendees won prizes such as: a Dare to be Rare t-shirt signed by Magic Johnson, quilts, hand-made scarves, designer sunglasses, Avon gift sets, gift cards and gift baskets with wine.  A big thank you to everyone who attended and helped with the event. 

Win your own copy of the documentary RARE (about Hermansky-Pudlak Syndrome) and help the HPS Network raise funds at the same time. Send the HPS Network five names and addresses for the Capital Campaign, and you’ll be entered in a drawing to win a copy of RARE and a Dare to be Rare t-shirt.  Send your names and addresses in batches of five to: info@hpsnetwork.org. Get them in by Nov. 1st.  The annual Capital Campaign invites people to make any size donation to the HPS Network. Funds go to support the work of the HPS Network including: patient education, medical outreach, conferences and research to help us one day find the cure.