To See Them Run
Donation protected
Eighteen years ago, our son Joshua, was born with a very rare neuromuscular disorder called Myotubular Myopathy {MTM}. At the time of his birth there were only 50 known cases worldwide. We were told that he wouldn't survive to see his second birthday. He would never walk, and he would certainly never run.
We started a foundation years ago to raise money to fund cutting edge medical research, with guarded hope to find a treatment or a cure that would save our son's life.
In hopes of finding other families like ours, we pulled together a community of hundreds of families affected by MTM {or it's parent disorder: Centronuclear Myopathy}. What started as a story about our son turned into a story about all the Joshua's of the world.
Joshua passed away on Christmas Eve, just shy of his 16th birthday, and, ironically, just after we found the science that has the potential to cure this disorder. Scientists, using gene therapy, have had tremendous success with the dog colony, in treating dogs who are naturally afflicted with the same disorder. We are saving the lives of these dogs with one dose of this gene therapy... and we NEED to get this serum to children fighting for their lives. Today, we are on the cusp of medical breakthrough! {You can view the video from the university below... it's mind-blowing to see a dog treated and living a healthy normal life!}
In order to get this science to our children who are desperately fighting for their life, our next step is to get to clinical trials. We are asking that you partner with us and invest in the lives of these families. It is our dream to see a child, once bound to a wheelchair, run through a park with sheer abandon.
Join us as we save lives, one child at a time. Do it not just for our Joshua, but for the parent's of children who's feet have yet to touch the ground.
With all the hope in the world,
Paul and Alison Frase
to read more about our story go to www.joshuafrase.org
We started a foundation years ago to raise money to fund cutting edge medical research, with guarded hope to find a treatment or a cure that would save our son's life.
In hopes of finding other families like ours, we pulled together a community of hundreds of families affected by MTM {or it's parent disorder: Centronuclear Myopathy}. What started as a story about our son turned into a story about all the Joshua's of the world.
Joshua passed away on Christmas Eve, just shy of his 16th birthday, and, ironically, just after we found the science that has the potential to cure this disorder. Scientists, using gene therapy, have had tremendous success with the dog colony, in treating dogs who are naturally afflicted with the same disorder. We are saving the lives of these dogs with one dose of this gene therapy... and we NEED to get this serum to children fighting for their lives. Today, we are on the cusp of medical breakthrough! {You can view the video from the university below... it's mind-blowing to see a dog treated and living a healthy normal life!}
In order to get this science to our children who are desperately fighting for their life, our next step is to get to clinical trials. We are asking that you partner with us and invest in the lives of these families. It is our dream to see a child, once bound to a wheelchair, run through a park with sheer abandon.
Join us as we save lives, one child at a time. Do it not just for our Joshua, but for the parent's of children who's feet have yet to touch the ground.
With all the hope in the world,
Paul and Alison Frase
to read more about our story go to www.joshuafrase.org
Organizer
Alison Rockett Frase
Organizer
Ponte Vedra Beach, FL
