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.
This is REAL HOPE.
You bring up an interesting point: that being Ryan and his family SHOULD attend the Denver conf. Everyone is invited, no formal invites go out, but ALL are welcome. Those who can attend, do.
But I have to disagree with the line of thinking that PPMD is ignoring the subject of adult stem cells. We don't know why there hasn't been a connection between Pat & Dr Riordian yet. Therefore it isn't right to assume it is the fault of one vs the other. There have been many discussions and blogs about the subject and I expect much more to come. I would like to see Pat and perhaps Sharon meet with Dr Riordian to assist in sorting through this issue. As with all aspects of Duchenne life, which you well know, nothing is, or is going to be, simple.
As far as the use of adult stem cells vs religious or moral issues, I think most of us were already aware of that. That isn't the reason parents aren't lining up at the clinic in Costa Rica. We are extremely happy and relieved for Ryan, Curtis and the others involved with this approach. It won't matter to me where a fix comes from in this fight against Duchenne. What does matter is having proof behind that fix otherwise how do we know we aren't doing more harm than good for our children?
I encourage Curtis, Ryan and hopefully the other family to come forward and show us what is happening to them. I think Ryan is especially brave to just go for it and couldn't be happier for him and us because of him! Curtis is a wonderful dad to share this exceptional thing with the hope of saving lives. None of what they've done is bad. Actually, it is quite promising, but I still need more data before I pack for Costa Rica. I don't want to harm my son.