ROCHESTER NY SUPPORT GROUP
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.
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.
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.
Our Facebook Group
Leader Contact Information
Feel free to contact our group's leaders to share your story, ask questions and get connected with our group.
Upcoming Meetings and Events
Come meet with other patients and caregivers at our next support group meeting.
PH Group at Conference