The first patient with Duchenne Muscular Dystrophy to be granted FDA approval for allogeneic adult stem cell therapy in the United States turned 30 this year, well surpassing his original life expectancy and paving the way for future patients, according to non-profit organization Coming Together For A Cure.
In 2009, at the age of 22, Benton’s condition was critical. He met with the founder of the Stem Cell Institute in Panama City, Panama and Medistem Panama, Neil H. Riordan, PhD. Research had shown that adult stem cell therapy might have the potential to reverse the progression of DMD.
Because of the laws restricting adult stem cell therapy in the United States, Benton was forced to travel to Panama to receive his first life-saving treatment. Ryan made seven trips to Panama to receive treatments from Dr. Riordan’s team of physicians at the Stem Cell Institute.
“Ryan has seen vast improvements in muscle mass and lung capacity as a result of his treatments…”
Ryan was assured at the start that there was no guarantee that we would find success but we knew it was his only hope in fighting the disease, especially since his health was at a critical point. Ryan could tell shortly after the first treatment that something was working. He found a renewed strength that he had never felt before and not once did he see any adverse side effects. He trusted Dr. Riordan and felt safe and eager to undergo additional treatments.
It took five years of hard work and successful treatments, but Benton became the first (and only) DMD patient granted FDA approval for this form of medical therapy inside the United States. An investigational new drug (IND) for compassionate use application was approved, allowing Benton to receive treatment in his hometown, Wichita, KS.
Approval from the FDA came with many stipulations, however. This form of treatment was to be used for only a single patient, twice a year for 3 years.
By all accounts, January 2016 was a major milestone. The FDA has recently granted an additional treatment per year, now allowing Ryan three total treatments per year, as well as approval for a second compassionate use IND for another patient. This second patient, a six-year-old boy, has also shown success from previous treatments in Panama. He received his first treatment in the United States this year .
Ryan and his family have been actively involved in the local muscular dystrophy community, and have personally known dozens of others with DMD who have passed away at far too young of an age. That number continues to grow each day, which only continues to frustrate Ryan and his family as they fight for this treatment to be more readily available for others suffering from the same disease. Ryan believes that if treated early enough, patients could have a strong chance to live a “normal” life. Ryan believes if he had been treated when he was six years old, it could be very likely that he would never have faced any of the diseases debilitating effects.
Ryan has seen vast improvements in muscle mass and lung capacity as a result of his treatments, but we believe additional treatments on a more frequent basis would help ensure maximum potential when it comes to reversing the progression of his disease. Immediately following each round of treatment, we see dramatic increases in his overall health, stamina, physical strength, and ease in ability to breathe. Unfortunately, we have found that on average, three to four months after each treatment, the effectiveness of the cells begins to decrease. We believe the FDA’s permission to increase the number of treatments per year will help safeguard Ryan’s ability to preserve his improvements and more effectively control his Duchenne’s Muscular Dystrophy. Video: Ryan Benton discusses stem cell therapy for DMD
For many families that have lived alongside, or suffered from this disease, this is very exciting news. Ryan and his family are continually heart stricken as they hear of another member of their md community has died far too young due to the disease. It’s their hope they can help provide other families the same opportunities that they were so fortunate to receive.
Coming Together for a Cure, (CTFAC) is a non-profit organization founded by Benton’s siblings, Lauren and Blake after Ryan’s first round of treatments in 2009. In the 7 years since the Bentons were given new hope, they’ve been hard at work raising awareness and support for adult stem cell research and therapy.
To find more information about their organization, their family, or to find out how you can help, please visit http://www.comingtogetherforacure.org
For all other inquiries, please email comingtogetherforacure(at)gmail(dot)com
