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Parents of Pediatric Patients Advisory Board

PHA Advisory Boards

The Parents Advisory Board serves the pediatric PH community, which includes kids or teens with pulmonary hypertension and their families and friends. Advisory Board members offer feedback on PHA’s programs and resources for the pediatric community and suggest new directions for support. Members are asked to stay up-to-date with PHA’s operations to ensure inclusivity with regard to their community’s needs and experiences.

Submit a question or comment to the Parents of Pediatric Patients Advisory Board

Parents of Pediatric Patients Advisory Board Job Description (PDF)

Kim and her daughter

Kim C

My daughter was diagnosed with IPAH at age 12 in May 2013 after passing out at our dinner table right after coming up the basement stairs. (Definitely in the running for the worst sleepover party ever!) She was immediately started on IV Remodulin. I love sharing our experiences with other parents and learning from theirs.

Mitzi

Mitzi M-L

I have been phighting back against PH since January 2007! I am a parent to a young child with PH and love to offer support to fellow parents. It feels great to be involved with PHA knowing I am helping to spread awareness and to be active in the PHA community.

Bill

Bill O

I am the father of Shannon who was diagnosed with idiopathic PH in June of 2001 when she was six years old. Immediately she was put on Flolan the only approved medicine for PH at the time. Today she is on IV Remodulin, Nifedipine, Waferin and Revatio. She goes to college part time and is a second degree black belt in Karate.

Genie and her daughter

Genie P

I am a physician and mom with an amazing 12-year-old Pher diagnosed in November 2014. Getting involved with the PHA and getting to know other families caring for children with PH has inspired us to have hope and find joy along the way. I am interested in increasing early diagnosis of Pulmonary Hypertension, especially in children, and advocating for legislation to help researchers find a cure.

Kelly and Riley

Kelly W

I live in Lexington, KY. I have a 6 yr old daughter, Riley who has PH. Riley was diagnosed in December 2014 with PH after showing signs of being out of breath with activity. The diagnosis absolutely devastated us as we had never heard of PH before and were told of the possible outcome of the disease. Riley has been through many heart catheterizations as well as subq and IV remodulin which she is currently on.

I would like to serve on the parent advisory board in order to help other parents with more information as well as giving them hope. I also want to be a part of maybe someday helping to find a cure for PH.

 

Fill out my online form.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.