The Rochester, NY support group meets every other month. The group has two leaders, Norine Crull and Jennifer Garigen. We also hold a fundraising walk every fall and hope to add another fundraiser in the spring at some point soon.

Norine and Jenn at PHA Conference, 2016

Norine Crull
I was diagnosed with IPAH 10 years ago and at that time I wasn't given a good prognosis. Being stubborn, I wouldn't accept that. Luckily, I am treated by Dr. R. James White and with his and his staff's help I have been able to keep fighting this horrific disease. I have taken part in any and all research studies that he has asked me to do be cause I think it is important so that researchers can learn as much as possible about this disease. I'm hopeful that we can find a cure. I was the first person ever to transition from Sub Q Remodulin to Orenitram and am thankful every day for being able to do so.

Jennifer Garigen
My husband and I were introduced to the PH community when our son was diagnosed with IPAH at age 4. We felt completely isolated in his diagnosis until we found the Rochester support group. Speaking with other patients, parents and caregivers has given us hope, encouragement, knowledge and an avenue to voice our concerns. I'm so grateful for the opportunity to help lead this group and connect patients, caregivers and medical professionals.

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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.