[Susan Baker]

We have a wonderful group for those caring for loved ones who are living with ALS & FTD and welcome anyone who needs some support: https://www.facebook.com/groups/906923272655643

[Susan Baker]

Great! Once you are logged into your Facebook account, click on this link. Please answer the questions that we pose to prospective members and you should be admitted soon. We have many members in the group that can answer any questions you have and offer support. For those with the C9 mutation, there are a few other FB groups that focus on that gene.

Here are 2 other resources that may be helpful to your son as well: Synapticure and I AM ALS. We also have groups that are only open to caregivers and to those living with ALS. I’m always happy to connect any members of your family with groups that may be helpful to you. Many hugs!

[Susan Baker]

I am so sorry to hear that. It depends in what gene they found(there are many!) and the penetrance of that mutation. We have a Familial ALS group on FB if you would like to join us there and learn more. My family has lost 5 to FTD FALS, so understand.