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Caregiver Advisory Board

PHA Advisory Boards

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The Caregiver Advisory Board strives to represent the many different varieties of caregiving that exist in the PH community. Our Advisory Board members share their experiences and offer their insights in evaluating PHA’s programs and resources for caregivers, as well as 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 Caregiver Advisory Board

Caregiver Advisory Board Job Description (PDF)

Joseph Haan

Joseph Haan

Caregiver (spouse)

We have never felt like we are in this alone.

Family, friends, and the PHA have always supported us on this journey.

 

Stephanie Cluck

Chelsey Walquist

Chelsey Walquist

My mom was diagnosed with IPAH in February of 2010 and she's been on quite the journey since. It has been a joy and a struggle to care for her during this time and I am excited to share my experiences with other caregivers. I am continuously finding ways to balance my mother's needs along with my own. I am 25 years old, a newlywed and in my second year of medical school. I look forward to interacting with the fabulous PH community.

Jahmai Sharp

Jahmai Sharp

My sister's misdiagnosis and struggle with dermatomyositis later led to her PH diagnosis in 2011. Our mother was the primary caregiver but taking turns to give her a slight break with hospital stays or small chores invigorated me to join PHA. I hope to give support through our family experience and shed light on this disease and its effects on families/caregivers.

Jane Northrop

Jane Northrop

My daughter was diagnosed in 2010 when she was 15 years after being misdiagnosed most of her life. She has been on triple therapy since her diagnosis and has been on subcutaneous Remodulin, Letairis and Adcirca for the majority of her diagnosis. I want to be on the board so I can make a difference for other caregivers especially those who are caring for an adult child.

 

Jonathan Broome

Sylvia Bandyke

Sylvia Bandyke

The day my sister finally got a definitive diagnosis in the Fall of 2015, I googled and found the PHA and was able to learn about the condition and discover good resources.  Being on this board will provide me with a chance to give back a little.

Sue Collin

Sue Collin

My name is Sue Collin and I have been 'involved' with PH since 2015 as a caregiver to my husband. PHA is a vital resource for my journey in being a supportive caregiver. It reinforces that connecting with other caregivers is so helpful for gaining PH knowledge, as well as advice on where to find other resources. Making new friends has also been wonderful for sharing our stories and questions, and having our own space. I am happy to be part of the CG Advisory Board and hope to make a difference in other people's lives!

 

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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.