This is going to be a big week for Hermansky-Pudlak Syndrome. As many of you already know, HPS is most common in people of Puerto Rican background – 1 in 1,800 births actually. It’s one of the most common genetic disorders on the island of Puerto Rico.
The HPS Network is undertaking some saturation outreach efforts, one community at a time, in areas with a large number of people of Puerto Rican background. The greater area around Orlando has the third largest Puerto Rican population outside of the island its self.
We all owe Hilda, Elsie and Debbie a huge debt of gratitude. This team has undertaken an outreach effort that’s been amazing. Hilda and Elsie have been working the field while Debbie organizes support from home. Hilda and Elsie have visited every hospital in the region, set up a number of educational events for medical staff etc. They’ve passed out hundreds of HPS brochures. They even started leaving the brochures in hair salons. After all, stylists usually know as much about their regular clients as a therapist might.
Hilda has been living with a friend and working on this day in and day out. She’s a retired nurse from the NIH. Now, that’s dedication for you. I’m sure that Hilda could have dreamed up much more exciting ways to spend her time, but she’s dedicated to the cause and we have to love her for that.
I so wish that I could be in Florida this week. I wish I could meet everyone there. I wish I could see all the events for myself. I wish I could help more. And, I can hardly wait to see what unfolds this next week!
The HPS Network is undertaking some saturation outreach efforts, one community at a time, in areas with a large number of people of Puerto Rican background. The greater area around Orlando has the third largest Puerto Rican population outside of the island its self.
We all owe Hilda, Elsie and Debbie a huge debt of gratitude. This team has undertaken an outreach effort that’s been amazing. Hilda and Elsie have been working the field while Debbie organizes support from home. Hilda and Elsie have visited every hospital in the region, set up a number of educational events for medical staff etc. They’ve passed out hundreds of HPS brochures. They even started leaving the brochures in hair salons. After all, stylists usually know as much about their regular clients as a therapist might.
Hilda has been living with a friend and working on this day in and day out. She’s a retired nurse from the NIH. Now, that’s dedication for you. I’m sure that Hilda could have dreamed up much more exciting ways to spend her time, but she’s dedicated to the cause and we have to love her for that.
I so wish that I could be in Florida this week. I wish I could meet everyone there. I wish I could see all the events for myself. I wish I could help more. And, I can hardly wait to see what unfolds this next week!
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