Comments on: The Potential for Treating Cerebral Palsy with Stem Cells http://www.cpirf.org/stories/1117 Cerebral Palsy International Research Foundation Thu, 02 Feb 2012 12:40:20 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: cpirfadmin http://www.cpirf.org/stories/1117/comment-page-1#comment-2326 cpirfadmin Mon, 31 Oct 2011 16:34:39 +0000 http://cpirf.picrow.com/?p=1117#comment-2326 Thank you for your inquiry. The article by Dr. Aisen, our former Medical Director, provides sound advice and summarizes well the state of stem cell therapy for cerebral palsy. It is frustrating for families to be cautious and patient by one's doctors here in the US on the one hand but be offered the prospect of cure by facilities outside the United States. It is the consensus among cerebral care physicians in the US that this therapy is not ready for general availability and should be restricted to carefully designed research studies. An additional more recent source of information about stem cell therapy in cerebral palsy can be found on the following website by our colleagues in Canada. http://www.neurodevnet.ca/kt/stem-cells James A. Blackman, MD, MPH Medical Director Cerebral Palsy International Research Foundation 186 Princeton Hightstown Road; Building 4; 2nd Floor Princeton Junction, NJ 08550 Thank you for your inquiry. The article by Dr. Aisen, our former Medical Director, provides sound advice and summarizes well the state of stem cell therapy for cerebral palsy. It is frustrating for families to be cautious and patient by one’s doctors here in the US on the one hand but be offered the prospect of cure by facilities outside the United States. It is the consensus among cerebral care physicians in the US that this therapy is not ready for general availability and should be restricted to carefully designed research studies.

An additional more recent source of information about stem cell therapy in cerebral palsy can be found on the following website by our colleagues in Canada.

http://www.neurodevnet.ca/kt/stem-cells

James A. Blackman, MD, MPH

Medical Director

Cerebral Palsy International Research Foundation

186 Princeton Hightstown Road; Building 4; 2nd Floor

Princeton Junction, NJ 08550

]]> By: shelly ratner http://www.cpirf.org/stories/1117/comment-page-1#comment-2306 shelly ratner Mon, 24 Oct 2011 17:17:07 +0000 http://cpirf.picrow.com/?p=1117#comment-2306 Artical was very clear. I have a 8 yr. old granddaughter with cp. We are also waiting, and waiting for stem cell treatments to come to USA. I have emailed about 15 stem cell treatment places off shore. Each one states that their treatment is the best, even though they also advise that there are no garanties, each patient will get different degrees of improvement. That seems to me that they have such a gimick going. If my granddaughter doesn't improve the stem cell place can say, well each patient is different. So there's no proof of what stem cells they used and where it should be injected. I have spoken to Dr. Evan Snyder and he does agree that stem cell treatments for cp is very difficult. He also states that the brain has so many types of brain cells, each doing their own special job, that first they have to find this out before any transfusions can go on. Then there is Dr. Kurtberg who uses autologous cord blood stem cells for cp. I have only heard of one patient, Dallas Hextell who was on TV stating how much better he got. Then I have not heard any other results. I don't think she is finished with the investigation, but this would be so helpful to know. Then there's the great possibiity that we didn't save the cord blood. It can only be saved at birth and who knew to save the cord blood 8 yrs. ago. I am killing myself over that. And she is not infusing the cord blood right near the damaged cells in the brain. There are so many, many opinions out there. So, I chose to wait for fear of spending great deals of money for a treatment that's not going to work. I contacted a famous doctor in Israel and he wanted $1250 dollars for reviewing the history alone and then another $32,000 for treatment. That does not include the plane fare. After I requested a little discount and for him to research our doctors here in the USA he refused to treat my granddaughter. The best of the scientists and researchers here in the US advise not to go off shore. That what they are doing off shore will not work for cp. Oh, these off shore places will take any age patients. Here we are waiting. It's certainly not the researchers in US fault. It's just that the brain is the hardest organ because it has many types of neurons with specific jobs and they all interact with one another. You can reply to my email. Thanks, Shelly Artical was very clear. I have a 8 yr. old granddaughter with cp. We are also waiting, and waiting for stem cell treatments to come to USA. I have emailed about 15 stem cell treatment places off shore. Each one states that their treatment is the best, even though they also advise that there are no garanties, each patient will get different degrees of improvement. That seems to me that they have such a gimick going. If my granddaughter doesn’t improve the stem cell place can say, well each patient is different. So there’s no proof of what stem cells they used and where it should be injected. I have spoken to Dr. Evan Snyder and he does agree that stem cell treatments for cp is very difficult. He also states that the brain has so many types of brain cells, each doing their own special job, that first they have to find this out before any transfusions can go on. Then there is Dr. Kurtberg who uses autologous cord blood stem cells for cp. I have only heard of one patient, Dallas Hextell who was on TV stating how much better he got. Then I have not heard any other results. I don’t think she is finished with the investigation, but this would be so helpful to know. Then there’s the great possibiity that we didn’t save the cord blood. It can only be saved at birth and who knew to save the cord blood 8 yrs. ago. I am killing myself over that. And she is not infusing the cord blood right near the damaged cells in the brain. There are so many, many opinions out there. So, I chose to wait for fear of spending great deals of money for a treatment that’s not going to work. I contacted a famous doctor in Israel and he wanted $1250 dollars for reviewing the history alone and then another $32,000 for treatment. That does not include the plane fare. After I requested a little discount and for him to research our doctors here in the USA he refused to treat my granddaughter. The best of the scientists and researchers here in the US advise not to go off shore. That what they are doing off shore will not work for cp. Oh, these off shore places will take any age patients. Here we are waiting. It’s certainly not the researchers in US fault. It’s just that the brain is the hardest organ because it has many types of neurons with specific jobs and they all interact with one another. You can reply to my email. Thanks, Shelly

]]> By: Christine http://www.cpirf.org/stories/1117/comment-page-1#comment-539 Christine Tue, 18 May 2010 20:25:38 +0000 http://cpirf.picrow.com/?p=1117#comment-539 Is there any treatment programs for adults with CP? It seems like all the research is on children. I am 33-years old and I would go anywhere to attempt a better quality of life. Is there any treatment programs for adults with CP? It seems like all the research is on children. I am 33-years old and I would go anywhere to attempt a better quality of life.

]]> By: Fact Sheet Catalog | CPI Research Foundation http://www.cpirf.org/stories/1117/comment-page-1#comment-440 Fact Sheet Catalog | CPI Research Foundation Mon, 12 Apr 2010 18:31:28 +0000 http://cpirf.picrow.com/?p=1117#comment-440 [...] The Potential for Treating Cerebral Palsy with Stem Cells [...] [...] The Potential for Treating Cerebral Palsy with Stem Cells [...]

]]> By: June Stubbs http://www.cpirf.org/stories/1117/comment-page-1#comment-195 June Stubbs Fri, 08 Jan 2010 02:39:26 +0000 http://cpirf.picrow.com/?p=1117#comment-195 I don't understand the hesitation to use stem cells as a treatment for people with cp. These individuals, and their families suffer enormously, and not enough is being done to improve quality of life. It seems you have to meet a certain criteria in the US to even be considered for an exam, yet countries around the world are moving beyond the mental block that seems to prevent progress in America, and success is being reported in every case. I have 3 grandchildren with different levels of cp. The 9 year old is the most severe, not sitting, non-verbal, etc. However, very aware of his surroundings, and what is happening. I am preparing to get stem cell treatment this summer for all 3 of the children. We are not necessarily looking for a cure, but quality of life. I don't see any reason not to go forward. I wonder if some of this uncertainty being spread is to keep things as they have been. Comfortable. You go to therapy, physical,speech, occupational. Wheelchairs, standers, braces, etc. are continued purchases. No one gets better, and everyone keeps their income. The thing that saddens me the most is the fact that I am going to have to travel outside the US to get the treatment that my grandchildren deserve. The money that I could be spending here, is going to be spent in another country. Time is not on our side. I can't wait on the US to get through 30 more years of testing. Every day I wait is another day they are denied. Thank God, and the websites this treatment is available to those who don't meet the guidelines in the US. I don’t understand the hesitation to use stem cells as a treatment for people with cp. These individuals, and their families suffer enormously, and not enough is being done to improve quality of life. It seems you have to meet a certain criteria in the US to even be considered for an exam, yet countries around the world are moving beyond the mental block that seems to prevent progress in America, and success is being reported in every case. I have 3 grandchildren with different levels of cp. The 9 year old is the most severe, not sitting, non-verbal, etc. However, very aware of his surroundings, and what is happening. I am preparing to get stem cell treatment this summer for all 3 of the children. We are not necessarily looking for a cure, but quality of life. I don’t see any reason not to go forward. I wonder if some of this uncertainty being spread is to keep things as they have been. Comfortable. You go to therapy, physical,speech, occupational. Wheelchairs, standers, braces, etc. are continued purchases. No one gets better, and everyone keeps their income. The thing that saddens me the most is the fact that I am going to have to travel outside the US to get the treatment that my grandchildren deserve. The money that I could be spending here, is going to be spent in another country. Time is not on our side. I can’t wait on the US to get through 30 more years of testing. Every day I wait is another day they are denied. Thank God, and the websites this treatment is available to those who don’t meet the guidelines in the US.

]]> By: Eugenio Ramirez http://www.cpirf.org/stories/1117/comment-page-1#comment-120 Eugenio Ramirez Thu, 22 Oct 2009 11:57:51 +0000 http://cpirf.picrow.com/?p=1117#comment-120 Hello Dr. Aisen Given encouraging results being conducted at Duke University (Dr. Kurtzberg) and numerous other published (granted, non scientific journal) results of individuals with CP and brain trauma having received autologous (one's own) stem cell transplants, have you considered clarifying your position on stem cell transplants? Your write-up of December 2008 seems to specifically address allogenic (foreign cell) transplants but not autologous (one's own cell) transplants. Your position discusses allogenic transplants where of course there may be rejection risks. However, what are the risks of an autologous transplant? There is strong evidence that autologous transplants seem to have been beneficial for some patients. What is not known, is whether this is a statistical minority or majority of patients being treated. But, so what? If the risks of autologous transplant are negligible, even if a minority of transplants were an evident success, wouldn't it be valuable for parents to consider this? I'd be grateful for your thoughts. Kind regards, Eugenio Ramirez Hello Dr. Aisen

Given encouraging results being conducted at Duke University (Dr. Kurtzberg) and numerous other published (granted, non scientific journal) results of individuals with CP and brain trauma having received autologous (one’s own) stem cell transplants, have you considered clarifying your position on stem cell transplants? Your write-up of December 2008 seems to specifically address allogenic (foreign cell) transplants but not autologous (one’s own cell) transplants.

Your position discusses allogenic transplants where of course there may be rejection risks. However, what are the risks of an autologous transplant? There is strong evidence that autologous transplants seem to have been beneficial for some patients. What is not known, is whether this is a statistical minority or majority of patients being treated. But, so what? If the risks of autologous transplant are negligible, even if a minority of transplants were an evident success, wouldn’t it be valuable for parents to consider this?

I’d be grateful for your thoughts.

Kind regards,
Eugenio Ramirez

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