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More Positive Results on Stem Cell Treatments in Costa Rica

I would like to start by introducing myself. My name is Curt Renard and I am the stepfather of Ryan Benton. Ryan, as most of you may recall, is the person that started a great deal of discussion in November, when our local TV station aired his story regarding stem cell treatments in Costa Rica.

Ryan has received a total of three stem cell treatments over a 13 month period and is doing great. A couple of months after his second treatment, we had a biopsy done by a surgeon in Wichita, KS, who has no affiliation with the clinic in CR. The biopsy was sent to Athena Diagnostics in Boston, the same lab that tested Ryan’s biopsy in 1994. The results stated: “This individual possesses normal muscle dystrophin and therefore is unlikely to be affected with Duchenne or Becker muscular dystrophy”.

I have remained silent on the PPMD blogs regarding this topic. However, I have read most everything that was posted, nearly all of which has been positive. I have decided to lift my silence, because we can no longer ignore the positive results that stem cell treatments are providing DMD afflicted people.

I have spoke individually with several PPMD parents over the past six months. Through these conversations I have surmised that the vast majority of you would volunteer for a stem cell trial. I believe its time to put some resources towards a trial that includes all different age groups and regression states.

Ryan is 24 years old and has been in a wheelchair for over 12 years. He would never have been selected for a trial, since the results are now based on a 6-minute walk. We are very fortunate that we have a personal relationship with Dr. Riordan and that his desire to help Ryan as a friend was the reason he was selected as the first DMD patient to receive these treatments.

Last night a local TV station that hosts the MDA telethon aired a second stem cell story about another boy here in Wichita who last summer, received similar stem cell treatments to Ryan's. Ian Conner has only received the one treatment and has had similar success to Ryan.

Please follow the below link to the KAKE website. Then click on the corresponding video on the right side of the page.

Muscular Dystrophy Sufferers Hope New Treatment Can Answer Prayers

This is REAL HOPE.

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Permalink Reply by curtis renard on May 7, 2010 at 3:31pm

All,

Thanks for all your comments and questions. I will respond this weekend to your questions. My mom is having surgery today and I'm very busy.

Thanks...Curt

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Permalink Reply by Wyatt's Mommy, Melissa on May 7, 2010 at 5:56pm

I hope your Mom's surgery goes well. Take care.

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Permalink Reply by Steve Dreher on May 9, 2010 at 9:24pm

Hi Emily - Check out the paper here: http://community.parentprojectmd.org/forum/topics/more-details-in-t...

Steve

J's mom said:

Your news is very encouraging. Thank you for sharing.
Is this success being documented in any medical journals where we can read about this treatment in more detail? If not, why not?

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Permalink Reply by J's mom on May 9, 2010 at 9:43pm

Thanks so much for the link!

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Permalink Reply by curtis renard on May 10, 2010 at 8:00am

A couple of you have asked about the documentation of Ryan and Ian's procedure and yes they are documented. Steve, thanks for posting the link to the publication. The title of the publication is: "Mesenchymal stem cells as anti-inflammatories: Implications for treatment of Duchenne muscular dystrophy".

We waited until the results of Ryan's treatments were published in a medical journal before we agreed to do his interview last November.

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Permalink Reply by Lisa R Kelly on May 19, 2010 at 5:18pm

Hi my name is Lisa Kelly and I am also greatful for you breaking your silence. I would love also to get more info. on this stem cell therapy. If you wouldn't mind could please email me directly @ lisa.kelly7@yahoo.com.

Michelle Gonzales said:

I've traveled to Costa Rico for pleasure and not anything like this. I am so very interested to hear more. thank you for breaking your silence. Can you give me some more information? How much was the cost? Were the stem cells from your step son, a family member, or from the hospital where this was done. I would definitely be willing to travel back to CR and would definitely be willing to spend any amount to cure my son... please let us know more and if you are okay with it, can you please email me directly at garnet028@yahoo.com?

Thank you so much!!

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Permalink Reply by Janine on May 23, 2010 at 10:28pm

Curtis,

Besides the weight gain, which is a good thing what other improvements have you noticed? You said the biopsy showed normal amounts of dystrophin but does this translate to any clinical improvement?

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Permalink Reply by curtis renard on May 24, 2010 at 9:08am

As with most DMD boys, Ryan sees the cardioligist and pulmanologist every 6 months. His lung capacity is now 25-30 percent greater than the vist prior to his first treatment.

His last visit to the cardiologist was a few weeks ago. The doctor told him that since his heart is in good condition and has been for the past 3 visits, he scheduled his next appointment 12 months out, vice the normal 6 months.

Ryan has an increase in size in every major muscle group. This was evident three months after his first treatment.

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Permalink Reply by Tulika on May 25, 2010 at 11:23am

Curtis,
This is remarcable. Hope all the best for Ryan.

Pushing the cardio appointments out by 6 months must be based on dramatic improvements. Can you share some data like reduction in cardiomyopathy or EF percentages.

Tulika

curtis renard said:

As with most DMD boys, Ryan sees the cardioligist and pulmanologist every 6 months. His lung capacity is now 25-30 percent greater than the vist prior to his first treatment.

His last visit to the cardiologist was a few weeks ago. The doctor told him that since his heart is in good condition and has been for the past 3 visits, he scheduled his next appointment 12 months out, vice the normal 6 months.

Ryan has an increase in size in every major muscle group. This was evident three months after his first treatment.

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Permalink Reply by Ofelia Marin on May 25, 2010 at 5:04pm

Thanks for posting! Have you noticed other functional improvements besides pulmonary and cardio?

curtis renard said:

As with most DMD boys, Ryan sees the cardioligist and pulmanologist every 6 months. His lung capacity is now 25-30 percent greater than the vist prior to his first treatment.

His last visit to the cardiologist was a few weeks ago. The doctor told him that since his heart is in good condition and has been for the past 3 visits, he scheduled his next appointment 12 months out, vice the normal 6 months.

Ryan has an increase in size in every major muscle group. This was evident three months after his first treatment.