FALS Registry

[Bhappy]

Hello All,

I am personally fairly new to this forum, however I am using my Mom's log in who passed away in 2013 from ALS at 52. She was the 9th person in our family to lose the battle to ALS, we are connected by C9ORF72. I stay very active in research and came across a FALS Registry today, my apologies if this link has already been spread around before. I feel it's a useful tool to bring the at-risk population (like myself) in better connection with the research community looking to study people like us in hopes of understanding the disease, trying to treat it at a MUCH earlier stage.

https://fals.patientcrossroads.org/

I hope this is of help to anyone cursed with a familial connection to this awful disease. I encourage you to see whether there is any research you're able to contribute to if you're able, as more research lately seems to mean more progress.

Thanks!

S

 

[Nikki J]

I have been registered there since 2012 and updated it in 2013 after my gene test but have never heard a word from them.
There is a lot of work going on in c9 and FALS in general. I think there is a study in Pennsylvania where you do not need to be gene positive. There is of course the preFALS in Miami and they will test you. If anyone in the family is c9 positive with or without symptoms or diagnosis NIH is doing a study of c9 and needs subjects. If you need info on either Miami or NIH pm me