SCA29

[Lisabecca]

Hi, does anyone here have SCA29?

[SueMillman Partner Ataxia UK]

Hi Lisabecca, I've had a look at our membership database and we only have 2 cases of SCA29 registered - neither of which seem to be you (or your son). (I'm not sure from your profile if it's you or your son that has the diagnosis!!) One is in the UK and one in France (but English speaker) If you would like me to see if they would like to be in touch with you please let me know. Also, if you aren't a Friend of Ataxia UK please do join, it's free! Best wishes Sue [e-mail].

[wobblybee]

🙂 Another group I’m a member of has others diagnosed with SCA29.

[5383 in reply to wobblybee]

Can you share the other group please?

[wobblybee in reply to 5383]

🙂 On Facebook..Spinocerebellar Ataxia Awareness and Research Support Group. And, National Ataxia Foundation.

[npnicole79 in reply to 5383]

If you have type 29 there is a group in Facebook

[npnicole79]

Hi Lisabecca, mi son has SCA 29. There is also a group in Facebook SCA type 29 that has 111 members

[npnicole79]

There is a grup in Facebook : SCA type 29 with 111 members