Cerebellar Ataxia of my 3 Year old son

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

4 Replies

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

    Good luck 🤗

  • 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

  • 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!

  • 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.

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