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.
Replies to This Discussion
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Permalink Reply by Steve Dreher on
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Would you send a link...I haven't been able to locate it.
cheryl cliff said:Just have Mindy. Looks like they are out of business.
Mindy said:I just read an article on MSNBC today that Costa Rica has shut down Dr. Riordan's clinic. Has anyone else seen this?
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Permalink Reply by curtis renard on
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http://www.reuters.com/article/idUSTRE6516UR20100602
This is the link I received today and is all I know. I will forward any additional information as I receive it.
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Permalink Reply by cheryl cliff on
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Thanks Curtis! I hope & pray Ryan (& Ian) are going to be ok since this news came about. I am very concerned about what Ryan, you and your family must be going through right now. Paul and I wish only the very best for you guys!! Sending hugs from SoCal.
Plus, on the first page of the PPMD website there is a link to the recent article. You can get it that way, if you wish- it takes you directly to the story.
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Permalink Reply by Karen flor on
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I tried to contact Dr. Riordian's clinic in C.R......I got through no problem....they have a U.S. number I received an e-mail back informing me that in total 4 boys had been treated and all with sucess{ I imagine all at different levels} I expressed interest in treating my son, and was told that all 4 boys had been treated free of charge. The doctor is trying to gather scientific info,but the center was out of funds and trying to work with some agency or university here in the U.S. to get backing so they could continue....I appreciate Dr. Riordian's ethics {not trying to get rich off of desperate parents} and I appreciate his dedication to the scientific study....BUT I want as do all of you....SOMETHING/ANYTHING to help my son.
I'm tired of watching the FDA play around...if this helps, and Ryan seems to be LIVING proof it does, we have to get the doctor to open his clinic to us
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Permalink Reply by Wyatt's Mommy, Melissa on
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Karen, it is so frustrating, isn't it. I'm sure we will get more information about this as time goes on. It sounds like, from the article, that they were shut down by government officals. But from what you're saying sounds like they just ran out of money. It's sad, that the technology is at our fingertips, but feels like it's miles and miles away. I'm with you, we need something and we need it now. Our angels need someone besides us fighting for them.
Karen flor said:I tried to contact Dr. Riordian's clinic in C.R......I got through no problem....they have a U.S. number I received an e-mail back informing me that in total 4 boys had been treated and all with sucess{ I imagine all at different levels} I expressed interest in treating my son, and was told that all 4 boys had been treated free of charge. The doctor is trying to gather scientific info,but the center was out of funds and trying to work with some agency or university here in the U.S. to get backing so they could continue....I appreciate Dr. Riordian's ethics {not trying to get rich off of desperate parents} and I appreciate his dedication to the scientific study....BUT I want as do all of you....SOMETHING/ANYTHING to help my son.
I'm tired of watching the FDA play around...if this helps, and Ryan seems to be LIVING proof it does, we have to get the doctor to open his clinic to us
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Can I ask where PPMD stands on all of this? Has there been any official response or position taken? I haven't read all of the blogs so I may have missed something, but it seems this treatment is worth supporting to some degree at least.
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Permalink Reply by Lisa Mancin on
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Yesterday was a sad day when I heard that Dr. Riordan's clinic in Costa Rica was closing. It is sad because it is one more hurdle to overcome... for those of us who believe in the power of stem cells. I truly believe that stem cells are the answer we have all been looking for. Ryan and Ian are living proof. There is no other treatment available that has the ability to restore dystrophin back to normal levels, as well as provide the clinical improvements that Ryan and Ian have shown.
If PPMD is interested in pursuing stem cells as a possible treatment...what is taking so long? The medical publication on Ryan's case came out last November. Why wasn't everyone jumping for joy at the possibility of a breakthrough? Why was such an important newscast and publication treated with such negativity and skepticism?
It seems strange that the clinic is being closed at the same time that many of us are trying to push for something to be done. Why would the government of Costa Rica close the clinic NOW after so much money has been put into building such a beautiful facility. Why was the facility approved to be built in the first place? Did the government there just suddenly change how they feel about stem cell treatments? It almost seems as if someone had something to do with it. It just seems strange.
At any rate, stem cell research is just beginning to really take off in this country. It has been in the news many, many times over the last year and is currently being used to treat/cure many conditions. In my opinion, it is only a matter of time before someone will do the necessary clinical trials to make stem cell treatments available for MD in this country.
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Hi Lisa,
I think we all still believe in the power of stem cells. Actually, there currently is a DMD/stem cell trial, if I remember correctly, being held in Italy, right now. Stem cells are still on the way to us, with or without the Costa Rica clinic. PPMD is working very hard with NIH and FDA to overcome hurdles and create a smoother path for medications that are approved in other countries to reach those of us here in the US. I urge you to read Sharon Hesterlee's recent posts about this subject and contact PPMD, ask what you can do to help speed things up. Participating is extremely healthy.
You ask some important, albiet difficult questions. I always admire those who do and will try to answer to the best of my ability, without claiming to speak for PPMD or everyone. Regarding why is this taking so long - duchenne is a very complicated disease. Scientists internationally are just barely beginning to understand it fully, and may still not have all the answers. I did read a recent post on fb to Debra Miller, head of CureDuchenne, where she was asked if CureDuchenne has spoken to Dr Riordian - he has yet to respond to the calls she placed earlier this year. Maybe he is having difficulty responding to others as well.
One publication does not make a medication, it takes much more science than that. Some of us embrace skepticism, without negativity. Simply because, if a Dr, clinic, medical device, treatment or chemestry can't hold up to being questioned; then the only reason for giving it to our babies is we as parents are frantic to do something, sometimes anything. I understand the need to rush, I see my son deteriorate. I comprehend panic, taste it everyday. But I choose not to allow that emotional state make decisions in behalf of my child. As far as jumping for joy re:Ryan, of course I did that & still do! Would love nothing more than to see a miracle, pray for it daily. He and his beautiful family are extremely brave.
I don't know anything about why the facility (I presume you mean a building) was built, my understanding is there was already a faclilty there and they accomodated Dr Riordian's running a clinic inside it. How, why or who was part of ending it...don't have the slightest idea. Except, the recent news release, I think, had some info about that. You might find answers there.
Lisa Mancin said:Yesterday was a sad day when I heard that Dr. Riordan's clinic in Costa Rica was closing. It is sad because it is one more hurdle to overcome... for those of us who believe in the power of stem cells. I truly believe that stem cells are the answer we have all been looking for. Ryan and Ian are living proof. There is no other treatment available that has the ability to restore dystrophin back to normal levels, as well as provide the clinical improvements that Ryan and Ian have shown.
If PPMD is interested in pursuing stem cells as a possible treatment...what is taking so long? The medical publication on Ryan's case came out last November. Why wasn't everyone jumping for joy at the possibility of a breakthrough? Why was such an important newscast and publication treated with such negativity and skepticism?
It seems strange that the clinic is being closed at the same time that many of us are trying to push for something to be done. Why would the government of Costa Rica close the clinic NOW after so much money has been put into building such a beautiful facility. Why was the facility approved to be built in the first place? Did the government there just suddenly change how they feel about stem cell treatments? It almost seems as if someone had something to do with it. It just seems strange.
At any rate, stem cell research is just beginning to really take off in this country. It has been in the news many, many times over the last year and is currently being used to treat/cure many conditions. In my opinion, it is only a matter of time before someone will do the necessary clinical trials to make stem cell treatments available for MD in this country.
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So glad to hear that you all still believe in the power ofstem cells. I knew about the trial in Italy, but think it is important that we do our own trials. In fact, that is my whole point. If we are able to learn from Italy's trial and create a smoother path for their medications to reach us here in the U.S.....then, I guess that is fine. Whatever works.
Yes, Duchenne is a complicated disease, but so are many other diseases. I don't choose to look at it that way. My husband and I have both worked in healthcare for over 20 years. Miracles happen every day..even in the most complicated of diseases. The science is there. We are not just barely beginning to understand it.
One publication does not make a medication. But it sure does justify the need for clinical trials and more research to be done on what that original publication was about. I don't really think of stem cells as a "medication". They are a natural substance...cells. Which, as far as I know, can not be patented. Thus, Big Pharma can not makes billions of dollars off of them...just an idea..may be that has something to do with the hold up in this country.
I, of course, read the article about why the facility in Costa Rica was closing. My only point was, that the timing seemed strange and I felt like there could have been some pressure from our country for them to close their clinic. Just a thought.
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There is an issue with big pharma not wanting to spend any money on anything that does not have a $ billion return. Being a capitalist, I don't really blame them. However, organizations that rely heavily on their funding need to be willing to spend some $ on non-pharma related treatments.
Regarding the clinic in CR. Free enterprise as we know it in the US does not exist in CR. As long as a foreign owned business ensures the right members of the government are happy, the business can operate. That is why Dr. Riordan opened their second clinic in Panama over a year ago. Their stem cell treatments continue in Panama and will have a significant increase in patients when/if all the CR equipment is moved.
It is very unfortunate for the CR employees of the clinic. There are quite a number of highly skilled, highly educated employees that will loose their job and everyone that we met were great. Additionally, the private hospital where all the physical therapy and a large amount of the treatments take place will loose a significant amount of money.
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Hello Curt,
Thanks for the update. I totally agree with what you said about funding on non-pharma related treatments. It is very unfortuante for the CR employees and the hospital there. It is unbelievble that so many important decisions are based on financial greed.
It is good to know that the Panama clinic will continue to operate so that Dr. Riordan can continue to help people who are interested in and need his stem cell treatments.
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Permalink Reply by Janine on
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Over the last ten years since my son's diagnosis if I jumped for joy over every possible breakthrough that was talked about I would have lost the ability to jump long ago. I also think a healthy amount of skepticism is a good thing. So maybe Dr. Riordan did treat some boys for free but surely it is not the only expense incured going to CR for these treatments. Do I think stem cell treatments are a bust, no but I would need quite a bit more information before I'm doing any celebrating. Curtis you wrote at the end of your original post that "this is real hope" I always have hope, but I'm sorry but I personally need more proof.
Lisa Mancin said:Yesterday was a sad day when I heard that Dr. Riordan's clinic in Costa Rica was closing. It is sad because it is one more hurdle to overcome... for those of us who believe in the power of stem cells. I truly believe that stem cells are the answer we have all been looking for. Ryan and Ian are living proof. There is no other treatment available that has the ability to restore dystrophin back to normal levels, as well as provide the clinical improvements that Ryan and Ian have shown.
If PPMD is interested in pursuing stem cells as a possible treatment...what is taking so long? The medical publication on Ryan's case came out last November. Why wasn't everyone jumping for joy at the possibility of a breakthrough? Why was such an important newscast and publication treated with such negativity and skepticism?
It seems strange that the clinic is being closed at the same time that many of us are trying to push for something to be done. Why would the government of Costa Rica close the clinic NOW after so much money has been put into building such a beautiful facility. Why was the facility approved to be built in the first place? Did the government there just suddenly change how they feel about stem cell treatments? It almost seems as if someone had something to do with it. It just seems strange.
At any rate, stem cell research is just beginning to really take off in this country. It has been in the news many, many times over the last year and is currently being used to treat/cure many conditions. In my opinion, it is only a matter of time before someone will do the necessary clinical trials to make stem cell treatments available for MD in this country.
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