Hyper-Genetics

About Hyper-Genetics

Hyper-Genetics is an organization researching fatal neuromuscular diseases affecting children. The need to fund therapies for DMD is why Hyper-Genetics was created. Founder, Jim Raffone, started Hyper-Genetics after his son, James Anthony Raffone, was diagnosed with Duchenne in 2013. Jim decided to begin his own research into therapies that could help the Duchenne community. Most recent, a Food and Drug Administration approved an IND (“Investigational New Drug”) application to begin clinical trials of our compound JAR914.

Statistics of Duchenne muscular dystrophy

Duchenne muscular dystrophy is a very rare, muscle-wasting disease with which children are born…only 1 in every 3,500 live births. By the age of 11 or 12, these kids – generally boys – can start losing the ability to walk. By the early teens, they’re in wheelchairs. By the late teens, on ventilators. And by the early twenties, in graves. From suffocation.

Only 20,000 children in the U.S. have Duchenne. Statistically, that means perhaps 500-600 live in New Jersey. And perhaps twice that number in New York State.

“We’re fighting to save the lives of children with a disease for which there’s currently no cure,” says Jim Raffone, CEO/Founder of Hyper-Genetics. “This FDA approval will allow us to continue our efforts to find a cure with our ‘Operation: LifeLine initiative.”

How JAR914 Can Help Kids with Duchenne

Some members of the scientific community believe JAR914 can possibly extend the lives of children with Duchenne. Hyper-Genetics has permission to involve up to 12 children in these clinical studies, which will focus on the safety of the children and the efficacy of the compound.

We believe JAR914 can possibly be the new standard of care for children with Duchenne instead of giving them corticosteroids. We also believe it can improve the quality of their lives.

The clinical trial to see JAR914 to the end is estimated to cost $2 million. This is a fight Hyper-Genetics intends to see to the end.