Hometown: Streator, Illinois
Involvement with BDFF: 10-plus years
Brett Palaschak realized at an early age that playing contact sports with his friends was not in the cards. So he decided to take the high road, hit the books and learn all he could about hemophilia in order to educate those same friends about what he was going through. Pretty impressive for a kid.
“I became very interested in science,” says Brett, an only child whose bleeding disorder was passed on from his mother, who is believed to have contracted hemophilia spontaneously.
Diagnosed with Severe Hemophilia A when he was three days old while living in Streator, Illinois, the 27-year-old Gainesville resident took his love for science and the acceptance of his disorder all the way through college and onto a career path. Since his graduation from the University of Florida, he has dedicated his 20s to gene therapy. At UF, he worked in labs conducting research with mouse models, and today he is employed by a gene therapy drug manufacturer.
Based on his work, Brett believes gene therapy treatments will be widely available to the bleeding disorders community in the next five years, if not sooner, pending FDA approval. Other diseases are already FDA-approved for gene therapy; the procedure is only being tested on diseases with no cure.
“It is really, really promising,” he says of the advancements being made. “The science is there, it just takes time. The trouble will be how to pay for it.”
Brett is just not sure it’s right for him.
“I would be interested in gene therapy, but I know that for some trials, you have to be off factor for about six months. I don’t think I could do that.” Since his port was removed at age 7, Brett infuses Factor 8 three times a week. “Plus, having worked with gene therapy for a long time, I may have developed anti-bodies to it.”
While a youngster in Illinois, he attended a camp much like Camp Boggy Creek where he met kids just like him and learned to self-infuse.
“What a great group of people,” he says. “It is very important for kids with hemophilia to be around kids like them.”
After moving to Florida, Brett immediately became involved with the Bleeding Disorders Foundation of Florida and attended a family weekend at Camp Boggy Creek’s Camp Spirit as a teenager. Since high school, Brett has been involved with Foundation walks and other fundraisers. Presently, he is working with BDFF Executive Director Fran Haynes as part of the Bleeding Disorders Coalition of Florida and will be traveling to Tallahassee this month as part of World Hemophilia Day.
“I have always wanted to give back to the community,” he says.
All told, Brett has had few issues with his disorder through the years, except for a bad bleed as a kid, which he thought was appendicitis. Painful, but there were no repercussions.
Brett has always been up front about having hemophilia and appreciates his role as an advocate and educator.
“I am pretty open with my friends about what I take, what they need to do in an emergency and what to tell paramedics,” he says. “Being open has helped me cope with it.”
Brett is very involved with the Bleeding Disorders Coalition of Florida (BDCF) and has attended several BDCF Legislative Days in the past, advocating for the bleeding disorders community with our state legislators. Click here to learn more about BDCF advocacy efforts. You can make a difference!