Young & c9 positive persuing PGT-m

[Sandy00]

Hello,
I'm new here. I have a loved one dx with c9 ALS. I have also lost a loved one due to ALS (who wasn't gene tested).
Since I was at risk I decided to test & tested positive. I'm 23 years old and married.
We decided to go down the long route of preimplantation genetic testing so our children aren't at risk of familial ALS.
My doctors all said it's the first time they are performing PGT for c9orf72.
I feels kind of lonely, since I don't know anyone else who is presymptomatic for FALS.
I'd love to know if there's anyone who also did PGT for FALS.

 

[Nikki J]

Hi
Suggest you join the fb FALS group and ask there. I know there are people in that group who have done this for c9 and other mutations

There are also lots of people who are gene positive.

Finally there are support groups that meet online for carriers. This is a new one from the ftd side

 

[Sandy00]

Thank you for the reply.
Outside of fb there's no FALS support group?

 

[Nikki J]

I mentioned the fb group because that is the place that has the most established and largest online community. If you want to find people like you that is where they are in a drop in whenever and ask your question venue. It is also a private group unlike here