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stem cell treatments help ryan benton

Maintained stem cell treatments for Duchenne Muscular Dystrophy help Ryan Benton continue to fight back

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stem cell treatments help ryan bentonThere is a big difference in a “treatment” and a “cure”. This is something we learned early on as Ryan began receiving adult stem cell treatments. Many people assumed that when we said we had found a therapy that worked that meant that we had found a cure.

We realized the impact from the new mesenchymal stem cell injections lasts for about 3-4 months. At the 3-month period the improvements begin to taper off and plateau for a couple weeks until we see the traditional effects of Duchenne appear once again.

We have identified that as long as Ryan is able to maintain treatments on the proper regimen of 3-4 months, he is able to prevent the disease from advancing further at an increasing and aggressive rate. We wanted to highlight the importance of the continued therapy because many people simply assume that the treatments can be a one time “cure-all”. Unfortunately as of right now, that is simply not the case.

Making Life Easier

Simple tasks, (everyone without DMD might take for granted) become much easier for the first 3 months after each round of therapy. From holding his phone, toothbrush, to picking up his utensils while eating, even when he is at his desk working on his music, simple tasks from controlling the mouse to working his computer keyboard become much easier. These small improvements are leaps and bounds for Ryan as it provides him an independence that without the treatments, he would never have again.

How it works

Ryan’s disease, Duchenne, is caused by the absence of a functional protein on the mutated gene, called Dystrophin.

Dystrophin is necessary to break down and repair muscle tissue – without it the cells are unable to hold their shape causing fibrous tissue to form in the muscle and increased inflammation throughout the body and immune system.

For Ryan, these newly injected mesenchymal stem cells home in on areas of inflammation and identify the cells in his body which lack the Dystrophin protein. At this point the new mesenchymal stem cells repair the cells negatively impacted by his disease and allow them to produce Dystrophin which allows his body to fight back against the disease for roughly 3-4 months.

After 3 months, the newly injected stem cells are essentially “used up” which means at this point the improvements plateau for a couple weeks and then eventually are all overtaken by the disease once again.

Improvements

On average the treatments first begin making a difference within two weeks following each round of therapy.

During the next few weeks we see a significant improvement in Ryan’s respiratory and muscular strength. We notice he finds it easier to breath and has less shortness of breath. We validate this and many other improvements in his pulmonary function by measuring through a weekly inspiratory and expiratory lung function test.

We notice continual improvements in his muscular strength related to his core, trunk strength, balance. As well as improved ability to utilize his upper extremities, (his arm, and grip strength)

Promise Ahead

It is frustrating this not a “one-time fix” and some people see this situation as inadequate and not worth believing in. Our only response is, why not accept a continual and proven therapy vs. having no improvement at all?

We are thrilled to maintain Ryan’s treatments on a continuous basis as we know that the researchers are steadfast working to improve this therapy and eventually make this therapy a one-time fix.

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.

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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 Ryan’s 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 Ryan’s 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 Ryan’s 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 Ryan’s treatment’s 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.

Ryan’s 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 Isaac’s family over the years, keeping up to date with each other’s 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.