Spread the Cure raises awareness and money for the blood disease.
Two friends of 30 years have teamed up to spread awareness for — and one day end — hemophilia, a rare disorder in which the blood does not clot normally. The disease affects about 20,000 individuals in the U.S., according to https://www.hemophilia.org.
Dan O’Fallon, a Flagler Beach resident, is the director for the nonprofit Spread the Cure, which was founded by his close friend in St. Louis named Ryan Miano, whose two sons have this disease.
The nonprofit aims to solve two problems:
- Cure people with hemophilia
- Prevent the suffering of kids born with genetic diseases and disorders now and in the future, thanks to developments in CRISPR and gene therapy technologies
“Watching his son, who’s now 16 years old, coming out of his second ankle surgery due to bleeding in the joints — it’s just becoming real and we’re starting to see some of the pain and frustration he’s experiencing,” O’Fallon said about Miano’s son Sam.
Before the nonprofit was officially launched on Nov. 3, O’Fallon recruited the assistance of Flagler Palm Coast High School graduate Chenzo Desroches to create the website https://spreadthecure.org.
“We just wanted to make it our mission to go out there and create enough capital to where we could ultimately pay for the 20,000 hemophiliacs here in the United States of America to receive the one shot that would ultimately give them a lifetime of relief from the disease,” O’Fallon said.
O’Fallon hopes to find Floridians who are suffering from hemophilia to provide testimonials for their nonprofit and stay connected with them as they begin raising funds.
“We’re trying to break down some of those clinical barriers, some of the financial barriers,” he said. “It’s going to cost each person with hemophilia $1.5 million to get their shot.”
To provide a shot for every hemophiliac in the U.S. is a $30 billion goal, O’Fallon said.
Spread the Cure hopes to collaborate with Vaughn Ripley, one of the longest living people with HIV, as he was born with hemophilia and then got HIV through a bad blood transfusion when he was a teenager.
O’Fallon said Ripley commended their efforts to found this nonprofit and that he’d like to work with them as they progress.