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crow330

Member
Joined
Jan 19, 2013
Messages
12
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
NY
City
New York City
My grandfather died of ALS and my mother has ALS and has had genetic testing and found a gene....

I've read that there is a Familial ALS group on this website, but I can't seem to find it.

Can anyone point me in the right direction?
 
I am sorry to hear that. We are FALS too. Our gene is C 9 orf72. There is ho pe for treatment in antisense technology for sod1 and c9. Trials coming up in less than a year.
 
Hi post went to mod it had link to fb FALS group. What is your gene? We are c9
Nikki
 
We do not know what our gene is its none that are known so far my dad and at least 4 of his 8 siblings also my grandfather we suspect... I've just had my 50th and feel I've got to live it....
 
Hi Dee
So sorry about your family. Were any of your family able to be tested for c9? The test has only been available since last year. If so were they tested in the UK? I ask because we are c9 family confirmed by testing on my sister and me done in the US. My cousins in the UK have been trying to get tested and so far no luck. They are now contacting MNDA and also the research people at Sheffield

Take care
Nikki
 
Thanks I may look into that its very helpfulx
 
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