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Family story

Debbie Castro

My sister Alex was diagnosed in 1998 and told she wouldn't have more than 2 years to live and would have to be put on Flolan (a thing I feared so much in the beginning because of risk of infection and because of her 3 young children being curious and wild).

I told her that I would quit my job and move to Texas to be with her so that she wouldn't be alone and so that I could help her live the happiest life possible in the time she had left.

She told me that she was able to take care of herself and that she didn't want me to put my life on hold for her, that she would do fine with her family. Thankfully, she has survived PH for over 6 years and transitioned well from Flolan to Tracleer.

Years later, I would discover the Pulmonary Hypertension Association through a job hunt. The best position opened up and it was perfect for my job experience in grassroots activism and chapter building.

I started working at PHA a year and a half ago and met great patients and supporters in my work. One very passionate and organized volunteer, Lisa Young, approached me with an idea to organize a marathon team to fundraise for PHA.

Little did I know that I would be inspired to race along with others for the cause. I had been on a weight loss kick for a while and thought that training for a half-marathon would REALLY take it up a notch.

Although I ended up overestimating my running abilities, I still decided to race along with Lisa and another PH supporter and marathoner, Heather Koczur, in the Disney World races in January 2006!

My sister is my inspiration for everything--from moving from Los Angeles to Silver Spring, Maryland to work at PHA's headquarters, to doing something I think is impossible for me--training for Disney's 5k.

 

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NORD

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.