I have Ataxia type 6. On my way today to see a neurologist in Chicago who specializes in it. I have no idea what the treatments are now. I’m hoping to discuss Gene editing or stem cell therapy. Has anyone had any experience on that?
I have SCA 6 . As far as I know there is no cure and no medicine to slow it down. Lot of research is going on in this area and I had been involved in one of them without success. Exercise and physical therapy are the only one that has some positive effect on it’s progression. Let me know if there are any questions or you have any new information.
Exercise is very important for all Ataxia. If you don’t use it you lose it!
Exercise seems to make it better but there is no cure at this time. Doesn’t matter what type of exercise, whatever works for you. I did go to PT for a while and they did teach me how to walk better.
Hi Karla welcome Gene editing, or gene repurposing seems to be the way forward for all SCAs. Stem Cell Therapy is controversial when it comes to ataxia. There have been reports from people who have tried it (often without their Neurologist’s advice) only to find the exercise was costly, and basically futile. Currently, there is no evidence that Stem Cell Therapy will slow down, reduce, or cure any of the SCAs. We’re all, no matter what type, anxious for research to come up with an answer. Best wishes for your appointment xB
My appointment went well. Dr Chris Gomez at University of Chicago is doing studies for a cure in a med that he has hope for. He needs more Ataxia patients for his study to get finalized. He is passionate about an ataxia cure. He didn’t seem keen on Stem cell as he is working on a drug.
It’s good to hear your appointment went well. And, especially interesting to hear about a study. You could post a link on here xB
I agree. Please post a link for registration or contact.
His contact is 773-■■■■. University of Medicine & Biological Sciences. Clinic appt: 773-■■■■. I don’t have link yet.
He gave me so much info verbally that I need a link to pass on. I did understand the med would not be available for a few years.
Phone numbers are blanked out. Please see if you can get an internet link to contact instead.
New medication would be wonderful!
I am looking for a PT who can help me walk better/learn how to fall but cant find it. I am so frustrated!!! Where do you live that you found this?
Here is the link I found for Professor Gomez. Click on it. His contacts are on that page.
Sorry, looks like I forgot to give you the link!
So, here it is.
I went thru PT. I think any can help as long as deal with neurological conditions not orthopedic, There is a difference. They also helped me with walking on uneven ground, ramps. If I would fall they would try to recreate it so I would know what not to do next time.
Was in touch with Dr. Gomez. It appears that he wants to see folks there at his Chicago address. I was hoping that he could do something via an email questionnaire or something like that. If he had a definite cure, I would be on the next plane out.