When Jeff Jin was diagnosed with cavernous angiomas in 1992 at age 18, there was little known about the disorder. Since that time, Jin has made it his priority raise awareness and funds to help those affected by the disease. On Aug. 14, Jin has put together a “Dine and Donate” at PJ Whelihan’s in Washington Township to raise funds for the disease.
“This disease has shaped most of my adult life,” Jin said. “There are a lot of people out there who are affected by it, and I just want to provide as much support as I can for those who can’t find any.”
Cavernous angiomas are abnormal blood vessels in the brain and spinal cord that can hemorrhage and cause seizure, disability and, on rare occasions, death. The disease affects one out of every 500 people in the United States, according to Angioma Alliance.
While Jin has been living with the disease for more than 20 years now, he has managed to live a fairly stable life. But, the disease has changed his life in ways he never thought.
“It’s been quite a long road, but I’m fortunate to be in a situation to recover from the deficits of the disease,” he said. “The disease changed everything; I even became a social worker because I wanted to help those in need after seeing what the support did for me when I was diagnosed.”
Jin got involved with the Anigoma Alliance in 2004. The organization is comprised of those affected by the disease, as well as health professionals and researchers who are looking to raise awareness.
“Initially, Angioma Alliance allowed me to just vent my frustrations,” he said. “They were the first people I talked to who had any first-hand knowledge of my situation and what I was going through. And then I began to get more involved with the events and the fundraising, and this April, I became a board member.”
The Aug. 14 event will be the first fundraising program Jin has organized on his own. He has high hopes for what can be accomplished by spreading the word about the disease.
“I don’t think many people know anything about cavernous angiomas,” he said. “The disease affects a large portion of the population and yet it’s almost invisible to the public. Our goal is to raise awareness, not just money.”
During the event, 15 percent of all purchases will be donated to Angioma Alliance. And while the money will go a long way, Jin is more hopeful of getting people to attend.
“The money is great and it will help us do more research, but what the Angioma Alliance really needs is more people,” Jin said. “That doesn’t mean people spending their weekends at fundraising events. It means people talking about the disease. That is what we’re looking for and that is what will get the ball rolling.”
For more information about cavernous angiomas, visit www.angiomalliance.org.