Living on the frontlines

The HPS Network will be partnering with the Jewish Guild for the Blind to offer a conference call support group for Spanish speaking parents of kids with Hermansky-Pudlak Syndrome. Here's the info: Estimados Padres de Ninos con HPS, Nos gustaria informale de un estupendo servicio que sera ofrecido por la Red de personas con Hermansky-Pudlak Syndrome (HPS) en cooperacion con La Red Nacional de Apoyo Telefonico del Jewish Guild for the Blind para Padres de Ninos con Impedimentos Visuales con esta condicion. El Guild conduce grupos de apoyo telefonico, de forma gratuita, para padres de ninos con problemas visuales a escala nacional. El Guild esta de acuerdo en patrocinar un grupo para padres de ninos con Hermansky-Pudlak Syndrome en espanol. El grupo sera facilitado por una trabajadora social del Guild que habla espanol, Awilda Jackanin, tambien vamos a tener disponible un miembro del consejo de la Red HPS. Al principio, el grupo se unira mensual (por telefono) llamando a un nume...

This weekend Mervin is graduating from college. His girl Ashley plans to be there. Congrads Mervin!

Many of you have also asked about Fran. Fran's dad recently passed away. She is doing okay - just going through the grieving process which is never easy. I was pleased to hear that she's been able to take some time for herself.

Pretty much every day I have someone calling wanting to know how Julie is doing. We all love her so much. I spoke with her this evening and she was in good spirits, even though the doctors told her she's going to be stuck in the hospital another two weeks. Julie, of course, says she plans to wow them and beat that goal and get out sooner. That's our Julie!

It's that time of year again. Budget battles for the next year are underway, and those of us who believe in the mission of the NIH and who benefit from its work need to speak up and let Congress know this is a good way to spend precious government resources. The thing is a lot of the research that happens at NIH couldn't happen anywhere else. It would be too expensive, and too risky, for a traditional setting. The NIH has lead the way in HPS research and we must continue to speak up and be heard to keep that moving. They are also investigators for Chediak-Higashi Syndrome, another closely related syndrome to HPS. And, now, they also have other albinism protocols underway. Below is a tidbit from the American Thoracic Society's e-newsletter I'm posting just as a general update. I'll keep my eye on how the debate is going and post further updates here. ATS Joins Letter in Support of Increased NIH Funding This week, the ATS joined an ad-hoc Group for Medical Research le...

The NIH is interested in conducting a study of the medical records of HPS'ers with a history of GI complications. This is a medical records study only and would not involve going to the NIH. You would, however, have to aid in the gathering of medical records which can be time consuming. If you meet the search criteria, we will likely be able to help with the costs. If you are interested, please contact Donna at the HPS Network (click on the banner above) to see if you meet the criteria and could help.

This week we added two new HPS'ers to the HPS Network patient registry. That leaves 97 more to go on this year's Hundred People Search! Keep up the outreach!