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suPer Heroes (Long-Term Survivor) Advisory Board

PHA Advisory Boards

The suPer Heroes Advisory Board helps PHA to strategize, plan and gather feedback on issues related to adults who have been living with PH for more than 8 years. The Advisory Board makes recommendations to PHA about new and existing education, services and programming to meet the needs of long-term survivors and their families. The Advisory Board meets quarterly. The Advisory Board facilitates a welcome wagon for the suPer Heroes social media presence and hosts quarterly virtual meet-ups for other long-term survivors.

Submit a question or comment to the suPer Heroes Advisory Board

Long-Term Survivor Advisory Board Job Description (PDF)

Alex F.

Alex F

Patient

I found PHA as soon as I got home and did an "Alta Vista" look up (before google). PHA helped me so much! I went two or three times a day to PHA message boards and read everything I could. I hungered for info, like I still do today. Now, after 16 yrs, I'd like to help others who also thirst for knowledge!

Susie A.

Susie A

Patient

Susie Alvarez is 52 years old and was born and raised in Pomona, California. She is the oldest of three sisters and the aunt to two nephews. On July 4, 1992 Susie was diagnosed with Idiopathic Pulmonary Hypertension. In March 1996, she was placed on Flolan for 11 1/2 years. With continued improvement, she transitioned to oral therapies in 2007, and is currently on Letaris, Adcirca and Coumadin. In 2011 she discovered a female first cousin was diagnosed with PH. Susie has been the co-leader for the PH Support Group of Greater Los Angeles since 2011.

 

Karen O

Patient

I am the miracle. After addressing all of the secondary issues the pulmonary issues went from 64 to 32. I took 11 years but I am doing well. My treatment now is staying at low altitude, c-pap and oxygen at night and good control of edema and blood pressure. NO expensive PH drugs, Thanks be to G-d.

 

Pat B

Patient

I will be celebrating 14 years of being a survivor in 2015. All I want is a cure for Pulmonary Arterial Hypertension, and to ease the suffering of infants, children, young adults, middle aged adults and the elderly that this disease has finally come to an end.

 

Debra W

Merle J

Merle J

As a Long Term Survivor and being on an IV medication for 16 years; being a Support Line Volunteer and a Support Group Leader of 3 groups, both categories for a number of years, I can share my roller-coaster life and understand what others have and are currently going through.  The knowledge I have learned and earned (sometimes the hard way) can benefit and be shared by being on the Advisory Board with others who I'm sure can pretty much say the same.

Tamara W

Tamara W

When I was first diagnosed with PH, I was working and living on the Island of Maui. I felt the isolation of "Living on a Rock" in the middle of the ocean with this rare medical condition. For over 19 years, PHA's inspiring members and staff has been the raft that has kept me afloat through all of my life's travels and the storms of living with PH! After attending a PHA Conference in Orlando 2012, with the assistance of my caregiver, we felt it was time to share my knowledge and resources by giving back to the PH community as co-leader of a Support Group. What I have lived and learned with PH as a long term survivor, is there are many "New and Unexpected Chapters in Life with PH" that had not been written. It now is my honor and privilege to be given this opportunity to contribute and advocate for these new resources by working in conjunction with this advisory board and PHA.

 

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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.