Ryan’s Story

November 2018 – How stem cell therapy has reversed the progression of Duchenne

Testimonials from Ryan’s doctor who administered his therapy under the FDA exemption and his physical therapists

Ryan Benton was diagnosed with Duchenne Muscular Dystrophy, (DMD) at the age of three. DMD is a terminal muscle wasting disease, Doctors told his parents there was no cure and he would be lucky to live past his teenage years. When he was 23 years old he was offered a chance to be involved in a research study using adult stem cells. This was an unproven method of treatment but Ryan was at a very critical stage in fighting his disease. So it is safe to say that Ryan had nothing to lose as his time was dwindling. Because Ryan’s parents were childhood friends with Dr. Neil Riordan, who is a world renounced stem cell researcher they put their faith in Neil that this was an opportunity we could not pass up.

Following Ryan’s first round of treatments, he realized he was able to grow muscle for the first time ever, proving to reverse the progression of his otherwise fatal disease. Ryan and his family quickly realized this was a real medical miracle people with his disease could finally believe in, so they unanimously decided to help find a way to help bring attention to this form of medical therapy so that more people like Ryan could receive treatment for their disease.

In 2009 just weeks following his first treatment, Ryan, and his siblings threw a fundraiser to raise awareness and support for adult stem cell research and therapy. Hundreds of people joined in support and raised a few thousand dollars to give back to Dr. Riordan so he could continue bringing treatments to Ryan and others with Duchenne Muscular Dystrophy. Fittingly they called their first fundraiser, Coming Together for a Cure, or CTFAC for short.

Ryan has received the majority of his treatments at the Stem Cell Institute in Panama City Panama, due to FDA regulations which previously did not permit the use of this form of therapy in the U.S. After five years of traveling out of the country multiple times a year, each time sustaining significant improvements to his overall health, the FDA granted a compassionate care exemption for him to receive therapy in the U.S as an investigational new drug. This meant Ryan would be able to receive his treatments in his hometown of Wichita KS, making him not only the first person in the world but also the first person in the United States with DMD to be successfully treated with adult stem cell therapy.

It is a very challenging process to gain this special exemption and unfortunately, it is unlikely this same situation will be duplicated with ease, especially without prior experience in receiving therapy. Our goal now is to use Ryan’s success to help bolster the possibility for other patients with DMD to gain access to therapy in the U.S. This process will take a couple more years but we are actively taking the steps to advance this likelihood.

Today, after over 16 treatments Ryan is 33 and in much better health than he would be if not for the adult stem cell therapy.

Ryan is not defined by his disease. Those close to him, which is a large and ever-growing number know him best as; a musician, college graduate, aspiring video producer, loving son, older brother, proud uncle, caring friend, Christian and most often an inspiration, fighting for others in need.

Full length mini-documentary of Ryan’s story from 2011

More than a Stem Cell patient with Duchenne, Ryan is a musician.

Ryan has always had a love for making music with his friends. Thanks to stem cell therapy he has been able to continue his passion. In 2018 Ryan and his band, The Sunshine Dreamers completed their 8th album.

Ryan has broadened his talents as an artist by also creating and producing music videos and short films to compliment his bands songs.

Learn about Ryan’s passion for making music and how it drives him to make the most of each day.

What is Duchenne Muscular Dystrophy (DMD)?

Duchenne Muscular Dystrophy is a rapidly progressing neuromuscular disease. On average it affects 1 in 3,500 people worldwide, mostly found in boys. The effects of the disease typically lead to death by late teens to early twenties.  We have found that the adult stem cell therapy Ryan receives is the first method proving to provide a cure. Click here to learn more about DMD