Last weekend was another milestone in the battle to cure the Hermansky-Pudlak Syndrome type of albinism. For many years we’ve had outreach efforts in Puerto Rico. I’ve routinely written to news outlets on the island trying to generate some media interest, and never had so much as an e-mail back telling me to bug off.
But, last weekend we had the most successful outreach effort, probably in our history. The newly formed Puerto Rico branch of the HPS Network held the first annual HPS Family Conference. Many thanks to Ivette and all the people who worked so hard to make this event a success.
Approximately 250 people with HPS and their families turned out for the event. They attended seminars about HPS, got the chance to meet other people with albinism from all over the island, and many had their blood drawn to screen them for HPS and eligibility for the drug trial. Hilda and Donna drew blood, while Kevin took medical histories. We think we’ve identified a possible 20 plus new people for the protocol (although they still need to be screened at NIH). And we’re just getting started.
The HPS Puerto Rico folks did an amazing job getting press coverage. Hermansky-Pudlak Syndrome was featured in several major newspapers on the island, on TV and radio (one station even adding the tagline after their call sign leading up the conference “the station that supports HPS”) and now several radio stations are running a public service announcement about HPS. Some of the news outlets have even called back wanting to be kept informed about recruitment for the drug trial so they can do follow up stories.
I couldn’t be more thrilled. As someone in this drug trial who very much needs this drug, for me we can’t fill this protocol fast enough. I want my brother to have a chance at this treatment if he needs it, and my many HPS friends who, for various reasons, don’t qualify for the trial. The faster we get it filled the faster we’ll get results and hopefully, be able to move on with FDA approval.
I can’t thank the Puerto Rican HPS coordinators enough for doing such a great job!
Hey, and someone send me some pics I can post! Grin!
But, last weekend we had the most successful outreach effort, probably in our history. The newly formed Puerto Rico branch of the HPS Network held the first annual HPS Family Conference. Many thanks to Ivette and all the people who worked so hard to make this event a success.
Approximately 250 people with HPS and their families turned out for the event. They attended seminars about HPS, got the chance to meet other people with albinism from all over the island, and many had their blood drawn to screen them for HPS and eligibility for the drug trial. Hilda and Donna drew blood, while Kevin took medical histories. We think we’ve identified a possible 20 plus new people for the protocol (although they still need to be screened at NIH). And we’re just getting started.
The HPS Puerto Rico folks did an amazing job getting press coverage. Hermansky-Pudlak Syndrome was featured in several major newspapers on the island, on TV and radio (one station even adding the tagline after their call sign leading up the conference “the station that supports HPS”) and now several radio stations are running a public service announcement about HPS. Some of the news outlets have even called back wanting to be kept informed about recruitment for the drug trial so they can do follow up stories.
I couldn’t be more thrilled. As someone in this drug trial who very much needs this drug, for me we can’t fill this protocol fast enough. I want my brother to have a chance at this treatment if he needs it, and my many HPS friends who, for various reasons, don’t qualify for the trial. The faster we get it filled the faster we’ll get results and hopefully, be able to move on with FDA approval.
I can’t thank the Puerto Rican HPS coordinators enough for doing such a great job!
Hey, and someone send me some pics I can post! Grin!
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