Cerebellar Ataxia of my 3 Year old son

[Rosenfeld]

Hello. My son was diagnosed with genetic cerebellar ataxia. I want to create a community for people who suffer from ataxia and their families, like this one, only in my country- Israel. Does anyone know accidentally of a body that exists already in Israel that gives that option to families or does anyone know people from Israel that would like to hear of a community like that?

Best Regards and good Luck to all of you,

Rosenfeld

[Ginger1]

Try Ataxia UK. They may be able to help you?

Good luck 🤗

[Rosenfeld in reply to Ginger1]

Sorry for being so late in my reply, had a problem in connecting back to the site. Thank you for your proposal. I'll try.

[wobblybee]

It's worth searching on Facebook🙂 Someone from an Ataxia Support Group may be able to help with connections🤔

Parents of Children with Friedreichs Ataxia

Caregivers Support Community

Spinocerebellar Ataxia Awareness and Research Support Group

Try these to start off with😊xB

[Rosenfeld in reply to wobblybee]

Sorry for being so late in my reply, had a problem in connecting back to the site. Thank you for your Different ideas. Will do so. Thank you

[Cuds]

Hi Rosenfeld,

I have tried to search the international sites for you but can't find anything for Israel. I did find that the prevalence of ataxia in Israel was 154 in an estimated population of 6,199,0082 - which suggests that not a lot of medical time is being spent on this! As people have said in other replies, try an organised charity from another country and see if they can get closer international links for you - good luck!

[Rosenfeld in reply to Cuds]

Sorry for being so late in my reply, had a problem in connecting back to the site. Thank you for the time spent in effort to help me. It is so nice and kind of you. I appreciate this very much, didn't know the statistics. Thanks again

[SueMillman Partner Ataxia UK]

We aren't aware of any ataxia support groups in Israel apart from The Israeli Machado Joseph Association. (Machado Joseph Disease is spinocerebellar ataxia Type 3 - SCA 3- which affects mainly people of Yemenite origin. You can find them at facebook.com/MJD-The-Israel.... They belong to Euroataxia which is the federation of 19 ataxia patient groups, for which Ataxia UK provides the administration. This article suggests that probably there are only 154 people with ataxia in Israel omicsonline.org/israel/atax..., but I don't know how accurate it's likely to be as another paper suggests there are 77 families affected by just SCA3, and we know there are cases of Ataxia Talengectasia and Friedreichs ataxia! Please let us know if you find any other association or if you set up a group. Good luck and best wishes, Sue.

[Rosenfeld in reply to SueMillman]

Sue, I'm very sorry for being so late in my reply, had a problem in connecting back to the site. Thank you for the links and data you supplied. I wonder how can I contact Jose families. I think we all have lot in common and can help each other a lot. I will keep you updated about how things will evolve.

[SueMillman Partner Ataxia UK in reply to Rosenfeld]

I think if you message them on Facebook you will be able to establish contact.

[Rosenfeld in reply to SueMillman]

You are probably right. thaks again Sue.

[Nimrodrod]

Hi Rosenfeld,

I am from Israel and my wife 30 Years old have cerebellar ataxia,

Did you find any group?

Thx

[Rosenfeld in reply to Nimrodrod]

Hi nimrod, I started up a group but didn't have the time to expand it's use. Didn't find any group besides mine. Would love to contact you personally if possible, think it can be interesting and maybe even useful for both of us. Will send you a message on private. Best greetings, Max