First Duchenne MD Patient to Be Approved for Adult Stem Cell Treatments in US Turns 30

First Duchenne MD Patient to Be Approved for Adult Stem Cell Treatments in US Turns 30

Ryan Benton, the first patient to be approved in the United States for allogenic adult stem cell transplantation as a Duchenne muscular dystrophy (DMD) treatment, turned 30 this year — largely exceeding his original life expectancy.

DMD is a genetic disease that affects 1 out of every 3,600 male infants, leading to progressive muscle degradation. The average life expectancy for people with this disease is about 25 years. Benton, of Wichita, Kansas, was diagnosed with DMD at age 3, and doctors predicted he would live only into his late teens to early 20s.

Ryan Benton
Ryan Benton (Courtesy of Stem Cell Institute)

At age 22, his health began to seriously deteriorate. At the time, research indicated that adult stem cell therapy might reverse DMD progression, so Benton met with Neil H. Riordan, PhD, the founder of the Stem Cell Institute in Panama City, Panama, and Medistem Panama.

Although he knew that there was no guarantee, Benton decided in 2009 to receive the stem cell treatment provided by Dr. Riordan’s team of physicians at the Stem Cell Institute. However, due to the laws that restricted adult stem cell therapy in the U.S., he had to travel to Panama. Shortly after the first treatment, he started feeling stronger and experienced no adverse side effects. He ended up making a total of seven trips to Panama for treatments, and after five years was granted approval by the Food and Drug Administration (FDA) for stem cell therapy inside the United States.

But the FDA’s approval was limited to his treatment exclusively, and only allowed for twice yearly treatment for a maximum of three years. Although the treatments improved lung capacity and muscle mass, increasing the ability to breathe and physical strength, the cells started to lose their effectiveness three to four months after each treatment.

In January 2016, the FDA granted approval for Benton to undergo an additional treatment per year, allowing for a more effective reversion of the disease’s progression. Additionally, the regulatory agency approved the therapy for another patient, a 6-year-old boy also showing benefits from previous treatments in Panama. The boy has already received his first treatment in the U.S., potentially paving the way for future patients.

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14 comments

  1. Nicola says:

    I represent a child of 8 who’s affected bu the Duchenne and I am very interested in this experimentation. I see that the treatment was undergoing when this news was made live. That’s less than a year ago. Any update? Thanks for whoever wishes to respond to me.

      • Kelly says:

        My son received Stem Cell therapy outside the US. Insurance doesn’t cover because of FDA and all. I’m confused why we can’t use the right to try law? Anyway. When he received the stem cells he was out of the wheelchair he had been using for 9 months and walking. He also stopped throwing up his food doe to spine and neck pain the minute he received the transfusion. His heart was at only 20% function and 6 months later it was at 39-42%. He walked and improved on walking until a cop dragged him and threw him on a curb. Because he needed to use his hands to exit his car due to his muscular dystrophy, rather than putting his hands up as the cops wanted. This was over a general traffic stop. I believe he would still be walking if not for this. We wanted to go back for treatments but it cost 30,000 per infusion and is not covered by insurance.

    • Greg says:

      I would do the genetic testing like 23&me and pair the raw data with an app like DNA Doctor. That will tell you if the child has the longevity trait. People (like me) with the trait use cells more efficiently. I have a different form if MD and was close to a wheelchair at mid-40s. I got 2 rounds 6 weeks apart in April and June 2019. Just a few months later I’m doing things I thought were gone forever, like getting off the floor under my own power.

  2. Ria says:

    Hi, I’m also interested in the progress of Ryan Benton and his stem cell therapy. I have a son(6) with Duchenne. I tried to contact Ryan and searched on the Stem Cell Institute website on this. But no article about the progress now on Ryan. Only an article is to be found about stem cell treatments on GRMD dogs.
    The Stem Cell Institute website claims they do not treat DMD patience.

  3. Herb Blake says:

    I would also like some updated information on this case study. If his condition continues to improve, I am curious as to why this treatment is not heavily pursued in all countries.
    I believe stories like this should be kept up-to-date.

    • Colleen Brandow says:

      Yes, I have a feeling it is political. I’m watching my son die while companies and fda take years to grant acess to treatments that may help.

  4. Herb Blake says:

    Furthermore, we have a son who is now 14 1/2 years old. I would like to see a more positive approach toward combating this disease than what is currently available.

  5. Alejandro Echevarria Gil says:

    Its been 2 years since this article, how come theres not follow up? One of my sons suffers from DMD (he’s 14).
    If FDA approved his treatment there should be a whole lot of documentation regarding his progress or lack of it.

  6. dhairya says:

    hello sir,
    my son 7 yrs with dmd has lost his 10-44 exons bcoz of nonsense mutation,still moving , shows +ve grower sign, high cpk, high cpk-mb but normal echo, how this therapy will help him ?

  7. Greg says:

    I have a different form of MD and seeing Ryan’s story made me try stem cells as I felt I was soon destined for a wheelchair at mid-40s.

    23&me paired with an app called DNA Doctor told me that I have a longevity gene. A study out of U of Rochester found that people with this trait use cells better. I received stem cells 6 weeks apart in April and June of 2019. My results have been mind-blowing just a few months later. I feel “normal” for the first time in 15 years.

    What’s more is that echocardiograms from last year and this year show that scarring on my heart has been healed. Find out if you or loved ones have this trait and you can make a much more informed decision. This will be an amazing bandaid for me until genetic editing is ready for prime time. All hail science!!!

  8. Derek says:

    If this disease was affecting 1 out of ever 3,500 girls instead of 1 out of every 3,500 boys – these treatments would be funded, standard, accessible, available, and the government would be pouring BILLIONS into advancement and saving girls lives. Boys… nope. You know it’s true.

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