Has anyone investigated the efficacy of stem-cell research on ataxia? Neta

[neta]

[HarryB Administrator]

Hi neta

There is research happening into the use of stem cells as a treatment for ataxia. You may be interested to read the following link from the Ataxia UK website.

ataxia.org.uk/pages/stem-ce...

Harriet

[neta in reply to HarryB]

Dear Harriet,

Thanks very much for the article. I see that the (encouraging) research was done about 5 years ago. Any news since then?

At (themassive) Hadassah Hospital in Jerusalem, there is a professor of Greek origin who is also doing research on stemcells but refused to take me on his experimetal project because he said I was not sick enough. There is a dr. in Tel Aviv who used to be the head of his dept (bone marrow research) in Hadassah, who does stem cell therapy on patients now. The withdrawal of the person's own stem cells are done in Tel Aviv.. After a period of "culturation" the patient is flown to Switzerland where he/she is given the new stemcells. All drs. have told me not to do this. It is costly. But awoman told me that her husband, who has MS, was cured by this process for fur months.Neta

[HarryB Administrator in reply to neta]

Hi Neta

These are links to the most recent studies that I know about. Both are from links on the Ataxia UK website with the information on Stem Cells being updated in Jan 2012.

ataxia.org.uk/data/files/wi...

ataxia.org.uk/data/files/su...

My own personal view on Stem Cell Therapy mirrors that of Ataxia UK. I have included a link to Ataxia UK's position statement for your information.

ataxia.org.uk/data/files/re...

Best Wishes

Harriet

[neta in reply to HarryB]

Dear Harriet,

Thanks for the various links. I read them carefully. I do not understand why everything takes so long. The American FDA is said to be heavily politicized. I hope Ataxia UK is more aggressive. Thanks again. Neta

[silkwood]

One of our support group who has FA went to Italy to havee it done at great expense.

He doesn't seem much different.

I am going to watch this space and see but I am not going to listen to any false reports from China. I am hoping Ataxia UK will tell us if there is any significa nt news.

[neta in reply to silkwood]

Hi there Silkwood,

Thanks for answering. I just dont know why everything takes so long. I have a friend who has something else and says the USA FDA drags its feet unless they see big dollars in the offing. She recently bough medication for her affliction in the UK. I hope Atxaia UK is on the ball.

[madbpm]

I have Unknown Ataxia. I have had stem cell injections in China & Costa Rica. I personnally had no benefit but some did.

Steven Rh

[neta in reply to madbpm]

Dear Steven,

Thanks for getting back to me. What do you mean "some" did find the process beneficial? Where did you go in China?

[madbpm in reply to neta]

Hi

It was Hangzou in China & San Jose in Costa Rica.

In China an individual who was wheelchair bound,began to get some feeling back in his legs.

[neta in reply to madbpm]

I see. thanks for getting back to me. Very interesting. Neta

[FAITH_PRAYER in reply to madbpm]

I'm trying to help my mom and researched Beike Biotech. She has Ataxia. Do mind sharing the number of injections received. Did you observe anyone else with Ataxia. Willing to deplete savings just for mom to have a slightly better quality of life. Thanks

[neta in reply to FAITH_PRAYER]

Hi there, I have no idea why u reached out to me. I don't know Beike Biotech, have never been to China, and/or received any injections. But I admire your tenacity. Lucky Mom that she has you. N

[FAITH_PRAYER in reply to madbpm]

I'm trying to help my mom and researched Beike Biotech. She has Ataxia. Do mind sharing the number of injections received. Did you observe anyone else with Ataxia. Willing to deplete savings just for mom to have a slightly better quality of life. Thanks Madbpm

[neta in reply to FAITH_PRAYER]

Is this a "form" email because no answer is apparently received. IN case u can read this, I too have researched Beike Biotech. They too r a Chinese operation. I even emailed the prof from Sweden who is a believer in stem cell research but says its too soon to say if it works. Basically the same response I received 5 years ago.

[wobblybee]

If the Cerebellum is distorted and thought to be the cause of Ataxia, is it somehow

restored by Stem Cell Therapy?

[neta in reply to wobblybee]

This is a good question that I have also wondered about. My sense (from reading) is that it does restore the harmed cells,but I am not sure. Your quedtion relates to my original feeling: I do not know why more aggressive advances on this are not being made and why everyone is so lackadaisacal, as though it is our fate to suffer. Neta

[HarryB Administrator in reply to wobblybee]

Hi Beryl

The cerebellum is the control centre for balance and co-ordination and it sends messages to the nerves and muscles to perform the functions needed for these. If the cerebellum is damaged, as is the case in people with Ataxia, incorrect or no messages are sent leading to damage or death of the nerve and muscle cells. The idea of Stem Cell Therapy would be for the Stem Cells to differentiate into those nerve and muscle cells that are damaged or dead to replace them and hence restore function.

Stem cells would not actually be used to regenerate the cerebellum per se but rather the damaged nerve and muscle cells controlled by it. It is simply not known yet if this therapy would be an effective treatment in people with ataxia, how long the effects would last for and if the new cells would eventually succumb to the same disorder as the person's original cells.

I hope this answers your question.

Best Wishes

Harriet

[wobblybee in reply to HarryB]

Thank you Harriet,

Much as I thought really.

Best wishes

Beryl

[neta in reply to HarryB]

Any new info on this? Your answer is 5 years old and the links are gone, N

[grumpygranny]

It says on my screen that this message was 2 years agao! - Is that right? - (If so where has it been all that time??)

Please get in touch on this subject (stem cell therapy / research.)

[neta in reply to grumpygranny]

It says on my screen that you wrote this some 3 years ago and u talk about Harriet answer being (then) 2 years old. So it all makes sense. My screen says she answered me 5 years ago re stem cells. Its now July 2017 ad the efficacy of stem cell therapy is still unclear.