Hermansky-Pudlak Syndrome Network Inc

The following is a summary of HPS outreach activities in Puerto Rico the week of August 17 – 22nd. Thank you so much to all of those who participated and worked so hard to make the week a success!!!!

By Yeidyly Vergne Martinez, MPH

This year, let me put it this way, the media exposure was AWESOME! We started the week at 7:30 am with a TV news interview at local channel WAPA TV. It was about seven minutes, and believe it or not, we weren’t even out of the studio when the mobiles started ringing. At the interview we shared a brief explanation of HPS (Dr. Enid Rivera), the mission, vision and motives of the HPS Network (Mr. Ricardo Rangel, President of HPS Network PR) and promoted our 4th Annual HPS PR Conference.

On Tuesday, August 18th, we got together with Senator Lucy Arce Ferrer, who invited us on Wednesday to the Capitol to be part of a press conference. She also talked with us about the 317 Resolution, which is a motion presented in order to promote a study of the services provided to the HPS population in Puerto Rico. It was really encouraging to have a member of the government so interested in the Cause.

Wednesday was full of surprises!!!! In the morning we went to the press conference at the Capitol, run to Dr. Natalio Izquierdo’s TV Show called “En Cuerpo y Alma”. The “En Cuerpo y Alma” TV Show was so good. We had Dr. Enid Rivera (pediatric hematologist) and Dr. Natalio Izquierdo (ophthalmologist) talking about albinism and Hermansky-Pudlak Syndrome. Mrs. Donna Appell, Founder and President of HPS Network, and Mr. Ricardo Rangel, President of HPS Network Puerto Rico, spoke about the Network and the characteristics they have seen in the patients. They also spoke about how to cope when your child has HPS. Some HPS’ers participated at the recording (Germán Acevedo, Adam Díaz, Ricardo Rangel Jr. and Yeidyly Vergne) so the audience could see the variation in pigmentation and the eye movement (nystagmus). Then we were LIVE at a TV Show called “Ellas y…” where we spent seven minutes on air. We gave a brief summary of HPS (Dr. Enid Rivera), what the HPS Network is about (Ms. Hilda Cardona, RN) and promoted the HPS PR Conference (Yeidyly Vergne). At 8:00 pm we were LIVE, yeah again!, on a Radio Show called “Fidelity Nocturno” with the lovely Mrs. Laura Rosado who interviewed the HPS Network PR President, “Richi”, and Yeidyly. Again, we explained HPS and how to identify a person with HPS, the lack of knowledge about the syndrome in Puerto Rico, the Network and the HPS PR Conference. The producer gave us two segments of the radio show, about 15 minutes.

Thursday was hospital visitation day! Our Donna and Hilda visited Parea Hospital at Mayagüez in the morning and the CDT Lares Hospital in the afternoon. They gave an HPS 101 Conference to the nurses and doctors that worked there to help them identify a patient with HPS as well as the right way to treat them.

Friday was spent getting everything ready for the Big Day. That evening we had the pleasure to meet Dereck, on of our newest members of the Network who is about one year and eight months old.

Saturday was the Big Day! The Conference was awesome! We got so many new members and health professionals interested that I think we can say that no matter the obstacles that we have encountered on the road, for us this year has been “THE HPS YEAR”.