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Thankful Thursday – Terence from NY ~ Battling Stiff Person Syndrome
(pictured above: Terence (left) with AFNE Volunteer Pilots Richard J. & Ed T.)
At Angel Flight NE, we are committed to ensuring that rare disease patients can access the life-saving medical care they need—no matter how far they must travel. Today, we are honored to share the inspiring story of Terence from Massena, NY.
Bridging the Gap Between Distance and Medical Care
When Terence was diagnosed with Stiff Person Syndrome and was told he needed to seek specialized care that was not available in his area, he immediate thought to himself – “How am I going to get there?” He learned about Angel Flight NE’s free air transportation services for patients who must travel for critical care. He called our Mission/Flight Coordination team and they told him “Don’t worry, we are here for you!”
Since his first phone call, our Mission/Flight Coordination Team has scheduled over 60 flights of healing and hope for Terence. He travels to both Cleveland Clinic in Ohio and Yale New Haven Hospital in Connecticut to meet with specialist who are working with other patients afflicted with this same rare condition.
“When I was diagnosed with a rare form of Stiff Person Syndrome, I began seeking local doctors who could help me. It quickly became apparent that we could not find the right medical treatment even the largest regional tertiary care centers , which is when I began my national search for medical teams and care centers who understood my illness and could help.
Without Angel Flight NE, I would be unable to have a key lifeline to physicians and even medicine for my condition. Truly, the volunteer pilots, flight coordinators and supporters are real life “angels” to me and I’m grateful to all beyond words for all of their compassionate care.
I can never put into words how much Angel Flight NE has helped not only me but also my mother, who helps care for me, and I get to my visits with the help of Angel Flight NE’ wonderful volunteer pilots! You all are truly angels!
After meeting with a team in Cleveland, I was told my disease needs even more evaluation at Mass General in Boston, MA. After mentioning this to the Mission/Flight Coordinators, they said “Don’t worry – we’re here for you!
Hence why Mass General has an amazing immunology department that can work to get my immune system functioning again, and their neurology team specializes in rare autoimmune conditions. If we had never gone to Cleveland, we would never had known had truly sick I am.
I just want to thank everyone at Angel Flight NE for giving me a chance to keep living. I’m truly grateful beyond words.”
Flights of Hope & Healing – Thanks to Our Supporters
Angel Flight NE’s mission is able to provide vital services to patients like Terence who desperately need to access specialized medical care and treatment.
Our mission is made possible with the help of supporters such as the Alexion Charitable Foundation and Hasbro’s Brian Goldner Center for Transforming Futures Foundation.
Join Us in Helping More Patients Like Terence
As we continue to support rare disease patients, we invite you to be part of our mission. Whether you donate, volunteer, or spread the word, you can make a difference for the patients facing unimaginable medical obstacles.
Because of your generosity, we can continue providing flights of hope and healing to patients across the country. Every donation, every volunteer pilot, and every partnership helps bridge the gap between medical challenges and life-saving treatment.
💙 Together, we are ensuring that distance is never a barrier to care.