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 cheryl cliff on
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Hi Curtis,
I would love nothing more than to know Pat & Dr Riordian have met, travelled to Costa Rica to review what's going on and report back with observations, findings. I know Pat is spread pretty thin with all she's got going on and it's everywhere on the globe. I appreciate all she does for us, she really works hard. But in leaving no stone unturned, this would be time/expense well spent.
Just my 2 cents,
cheryl
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Permalink Reply by Tonya on
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Hi Curt,
When you say Ryan is doing great, what does that mean? Is he still in a wheelchair?
This is incredible news..........why isn't it exploding all over the media? Wouldn't many parents spend any amount of money to take their child to Costa Rica for this treatment?
Tonya
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Permalink Reply by Wyatt's Mommy, Melissa on
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I am interested to see and hear more about this. I feel that it will be an option in the future, maybe the very near future. Thank you for "lifting your silence" on this subject. We need to unite as a community to win the war on DMD, thank you, thank you, thank you!
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Permalink Reply by Traci Strafuss on
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This update is very timely. I, for one, have been thinking of you stepson alot lately. Very hopeful that his positive results have persisted. I'd thought of contacting the family but thought it would be intrusive. Thank you so much for any information you can share with us!
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Permalink Reply by RAKTIM SINGH on
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Hi Curtis,
Thanks for posting this. It is really very good. Just wanted to check
(1) Apart from biopsy by Wichita, KS, are there any other independent test done?
(2) Is Ryan planned to take more stem cell treatments? Has doctor told about any frequency in which Ryan is supposed to take these shots in future?
We all will love to see these stem cell to move to clinical trial.
On the one hand it is good to see so many thing happening on DMD treatment front, on the other hand it demands a right/balanced call so that we do not spread our resources too thin as well as potential cure get the right attention.
Glad to know that Pat/PPMD team had talked with doctor.I am sure they must be giving necessary attention/priority to these.
Raktim
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Permalink Reply by lisa burke on
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Totally different disease but interesting from a general 'stem cell therapy' point of view....
Controversial stem cell trial has helped stabilise MS
Breakthrough: Scientists hope a new stem cell therapy trial could help patients with MS
A controversial trial using bone marrow stem cell therapy for MS patients has helped stabilise the disease.
British researchers claim that, one year on, there are early signs that patients receiving the therapy may be improving, and that the treatment is safe.
The trial looked at six patients, aged 30 to 60, suffering from multiple sclerosis, a condition in which the body's immune system attacks itself.
Some people with multiple sclerosis have travelled to Rotterdam where a commercial service offers cells taken from umbilical cords.
However, because the cells have not come from the patient's own body there is a high risk they will be rejected.
There are around 85,000 MS sufferers in the UK - 50 young people are diagnosed each week - in which the body's own immune system attacks itself.
Symptoms range from mild, occasional illness involving numbness, muscle weakness and visual disability to rapid and severe deterioration which can leave sufferers in a wheelchair.
Neil Scolding, professor of clinical neurosciences for North Bristol NHS Trust, who is leading the trial of six patients, said he hoped the treatment would offer a major breakthrough in treating the illness.
During the trial, six patients had bone marrow cells removed under general anaesthetic.
Read more: http://www.dailymail.co.uk/health/article-1273194/Controversial-ste...
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Permalink Reply by Michelle Gonzales on
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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 Lisa Mancin on
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Dear Curtis,
Thank you so much for sharing Ryan's story. It is time for PPMD to seriously consider funding a medical clinical trial on the use of stem cells for Muscular Dystrophy. There is absolutely adequate evidence to justify this trial. As we can see, from the numerous replies to your post, there are many questions regarding stem cell therapy. The only way to answer the many questions is to begin a clinical trial. PPMD can continue to ignore the subject or it can begin to seriously research and fund the use of stem cells for the treatment of our boys. With the disappointing news of the Alturen trials, the timing is perfect. Parents, like me, are looking for answers and treatments that will work NOW...not ten years from now.
I think it would be great if PPMD would invite Ryan and his family to the annual meeting in Denver. I am sure that much can be learned from meeting them. They are a true inspiration for us all. They actually made their own decisions, and took it upon themselves to do something for Ryan, rather than waiting around for someone else to take care of the problem.
I also want to make the point that Ryan had ADULT stem cells. So this is NOT a religious or moral issue. Looking into stem cell treatment and funding a medical trial is the RIGHT thing to do. The treatments need to be available in this country so that all can benefit. If the theory of PPMD is to leave no rock unturned, then it is time to turn this one over!
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Hi Lisa,
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.
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Hello Cheryl,
I was suggesting that PPMD should invite Ryan and his family to possibly be part of the actual agenda, as a speaker, or part of a discussion group. I was aware that there are no formal invites and that anyone can attend.
I actually think that PPMD has been ignoring the subject of stem cells. Ryans initial story came out last November and there has still been no meeting between Pat and Dr. Riordan. I have not really noticed that there have been alot of blogs or discussions regarding stem cells. After the initial few skeptical comments regarding Ryan, the whole subject seemed to go away.
I mentioned the religious and moral issues, because many of the people I have talked with do NOT realize that there are many different types of stem cells. I wanted to be clear that Ryan received the "non-controversial" Adult type. Religion and morale issues have been one of the main reasons that stem cell research, for all types of diseases, has not progressed in this country.
Regarding the issue of doing harm, how will we know, if we don't proceed with some clinical trials? I am much more afraid of the negative side effects of Prednisone and Deflazacort than I am of stem cells. Thousands of people, with many types of diseases are leaving the country for stem cells treatments. Shouldn't we as parents, come together, and encourage stem cell research in our own country so that we can find out our own answers.
Hopefully, and I believe it will, have a positive outcome as in Ryan and Ians case so that we can all benefit from this treatment in our own country and we will not have to pack for Costa Rica.
cheryl cliff said:Hi Lisa,
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.
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Hi Lisa,
I see, your idea about asking PPMD to invite Ryan & Curt as part of the adjenda wasn't clear initially. Thanks for clairifying. I suppose there might still be some out there who aren't aware that stem cell science can avoid moral/religious issues but I have to add I suspect most DMD parents, religious or not, would be content if their son's condition was improved regardless of "where" stem cells are derived. And, stem cell research in California is alive and well (one of the few things left that is). Recently, BILLIONS of taxpayer dollars, and we are a broke state, was allotted and some distributed, to further research. It still has a ways to go before it becomes available, legally in the US, to patients. The side effects of the toxic levels of steroids, at which we must medicate our sons, are a known. Side effects of stem cell treatments aren't yet. Not sure how one could make an intelligent choice between the two, without further data. YES, we need a clinical trial for DMD and stem cell treatments.
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