Vision, fortitude, resolve, a guarded dream, and a child with the will to live is where our story began.  After 24 days in the NICU, we were told to take our child home and enjoy the remainder of the little time we had left. That was February of 1995.

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Transfer of the MTM1 gene into the weakened muscle tissue of dogs affected by myotubular myopathy restores muscle strength. The disease arises from a genetic mutation that disrupts the production of a protein needed for muscle function, Replacing the gene appears to be corrective. Click here to read the press release. 

One little boy, who was granted just 15 years on this earth, touched a lot of people for the good.

Joshua Frase was born with myotubular myopathy (MTM), a rare genetic mutation of the MTM1 gene that makes it difficult for, primarily males, to crawl, walk and breathe on their own. His parents, Paul Frase, a former NFL defensive lineman for the Jacksonville Jaguars, and wife, Alison Rockett Frase, founded the Joshua Frase Foundation when Joshua was born with the disease.

Typically 70 percent of children born with MTM never celebrate their second birthday.

“My son Joshua’s Journey was a struggle between life and death,” said Rockett Frase. “His perseverance and character gave us guarded hope that he would live and not die. He inspired us to raise awareness and forge a path to find a cure for him and his peers.”