Living on the frontlines

I'm passing on this info as it might be of interest to those with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome. The below Foundation offers a scholarship program for undergraduates with bleeding disorders. While the Foundation is active in the Hemophilia community, they seem to also be tuned into general issues surrounding bleeding disorders. From this basic info, I see no reason why HPS'ers or CHS'ers wouldn't qualify, but you'll have to check out the details for yourself. I'm simply passing on the info. Good luck! Beth Carew Memorial Scholarship Program WE WILL BE ACCEPTING APPLICATIONS FOR 2011-2012 BEGINNING FEBRUARY 1, 2011 THROUGH APRIL 15, 2011 The Beth Carew Memorial Scholarship Program is an annual competitive educational scholarship sponsored by the Foundation. This scholarship was created in honor of Beth Carew. Beth was an energetic, bright, loving, and caring woman. She was a person with determination and spun...

November is National Caregivers Awareness Month. Caregivers who help people living with illness, acute or chronic, are very special people. Read below from the National Caregivers Association. In 1994, NFCA launched the first ever celebration of family caregiving declaring National Family Caregivers Week. Recognized by President Clinton when he signed the first proclamation in 1997, NFC Month has been proclaimed by an American President annually ever since. Many states, and dozens of local municipalities have proclaimed November, NFC Month. Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen. NFCA coordinates National Family Caregivers Month as a time to ...

The following is a link to a video clip I found very interesting. There are so many challenges to finding better treatments/cures for rare diseases besides just the fact that they are rare. This interview touches on many of them. We have a lot of advocacy work to do on these issues. (This was also in the NORD - National Organization for Rare Disorders) e-newsletter. http://www.wusa9.com/video/default.aspx?bctid=646414294001

The following item was in the National Organization for Rare Disorders e-newsletter. I wanted to draw the Hermansky-Pudlak Syndrome and Chediak-Higashi Syndrome world's attention to this. It takes place exactly a month before the New York Conference. It might be a way to get some media coverage for HPS, CHS and the issues of living with a rare disorder. Coming Soon: Ways to Get Involved in Rare Disease Day 2011 As the national sponsor for World Rare Disease Day, NORD is preparing to launch a redesigned Rare Disease Day US website, with suggested ways for individuals, patient organizations, professional societies, and companies to get involved in Rare Disease Day 2011. Those who were signed on as Rare Disease Day Partners for 2010 will receive email blasts about plans for 2011. Plans will also be shared in the November e-News. We hope all e-News readers will support Rare Disease Day on Feb. 28, 2011. Forty-six nations around the globe participated last year, and even more will...

 Dr. William Gahl presents at 2010 HPS Family Conference  Dr. Gahl explains eye condition of HPS.  One of the great things about the conference is it gives patients a chance to interact with doctors and researchers. Here Dr. Carmelo Rivera is speaking with an HPS member. Here in the foreground Dr. Gahl speaks with HPS patient and in the background Dr. Markello speaks with the father of an HPS'er.

Yeida Soto has launched a fundraiser with www.thinkrecycle.com to benefit the Hermansky-Pudlak Syndrome Network. Yeida is asking HPS’ers to bring any old digital cameras, cell phones or printer cartridges to the HPS Conference in New York. We must have a minimum of 10 items to submit. Hold onto any old MP3 players, IPods or laptops as these soon may be added to the list of items that can be recycled through the program. If you won’t be at conference, you can send items to the HPS Network office at: One South Road, Oyster Bay NY, 11771. Please label them recycling fundraiser.

The Patient Advocacy Foundation (PAF) has published a directory of resources for Americans who have insurance, yet are still struggling to pay uncovered medical expenses. The directory can be accessed or downloaded from the PAF Web site at: http://www.patientadvocate.org/help4u.php.