This is so senseless that the FDA is not allowing them to continue to be treated in the U.S.

http://www.ctfac.net/fda-exemptions-...et-first-time/

After their FDA exemptions expired, the first two Duchenne Muscular Dystrophy patients to be successfully treated with adult stem cell therapy meet for the first time.

Ryan Benton received the first FDA exemption to be treated in the United States using mesenchymal adult stem cells derived from umbilical cord tissue, paving the way for others to follow.

After first receiving six treatments outside of the United States at the Stem Cell Institute in Panama City, Panama, Ryan was granted an FDA Compassionate Care exemption making him the first person with his disease to be treated in the United States.

The exemption was granted under the provisions as an Investigational New Drug, allowing him to receive two treatments per year over a three-year period. After the first year of treatments yielded the anticipated results, the treatment protocol was extended to three treatments per year. It has been determined that the treatments prove most effective when re-administered every four months, this allows the therapy to maintain effective results.

Today, Ryan Benton is 32 years old and has been receiving adult stem cell therapy under the protocols presented by Dr. Riordan of the Stem Cell Institute since 2009. It is an extremely cumbersome ordeal for Ryan to travel such lengths due to his physical limitations and the hassle brought upon by traveling with a power wheelchair and other medical devices he relies on. This a key reason it was such an accomplishment to be able to receive treatments at medical facilities closer to his hometown. Ryan is one of 35,000 people in the U.S. and over 300,000 worldwide affected by Duchenne Muscular Dystrophy.

After the success of Ryanís first treatment, three other DMD patients traveled to receive the same therapy at the Stem Cell Institute. All the other DMD patients experienced the same successful results from the stem cell therapy, although due to the travel difficulties only Ryan and one other DMD patient has been able to maintain treatments on a necessary regular basis.

The other DMD patient Isaac, an 8-year-old boy from Indiana. Isaac was provided the opportunity for treatments after his parents learned of Ryanís story and contacted Coming Together for a Cure, who helped provide insight on the treatment process, the science involved and helped connect them to the necessary resources to gain access to the treatments.

Isaac has been receiving therapy at the recommended frequency as Ryan since the age of three and now is in far better physical shape compared to other boys his same age with DMD. Isaac has received 13 total treatments, beginning in October 2012 at the age of three. Isaacs first 6 treatments all took place at the Stem Cell Institute in Panama.

After the first year of Ryanís FDA exemption, Dr. Riordan petitioned the FDA to allow for Isaac to be granted the same exemption. Once again, thanks to the proven success of Ryanís treatmentís and Isaacs sustained success from his treatments, the FDA granted Isaac the green light allowing him to receive six treatments over the course of the three years at Riley Hospital for Children in Indianapolis. This was an enormous blessing as by having the treatments available in their own backyard, the would not have to deal with the numerous complications of traveling out of the United States.

Ryanís FDA exemption expired in fall of 2017 and Isaacs shortly after. This left both families no other choice than to make the long arduous trip to Panama for each of their next necessary rounds of adult stem cell treatments.

By a complete coincidence of timing, Ryan and his brother Blake happened to be in Panama at the Stem Cell Institute at the same time as Isaac and his parents. As Blake was preparing to carry Ryan down the jet bridge into his seat on their connecting flight in Atlanta to Panama, Isaacs parents realized that right in front of them was a man who had given them such inspiration and helped connect them to the life-changing treatments they were continuing to embark on

Ryan and Blake have communicated regularly with Isaacís family over the years, keeping up to date with each otherís treatments, but until now had never met in person. The rest of the week, the families spent time together, building genuine friendships built upon their unique shared experiences of being the first two people in the world with their devasting disease to be successfully treated. Young and old, trailblazers together for the first time, a glimpse of what is possible for many other boys and families waiting for their opportunity to receive life-changing adult stem cell therapy.