C9orf72/ALS and metformin

[Community Member]

Hi, my family has C9. I think there have been discussions about that study in our genetic groups on Facebook and could connect you if you would like.

[Community Member]

Hello Susan.

Can you, please, point me in the right direction for C9 Fb group?

[Community Member]

Search C9ORF72 support group, also the website Ending the Legacy is for C9 also.

I was in the Metformin trial. It ended in spring of 2024, we are still waiting on results.

[Community Member]

thanks Beenie.

I start metformin when the clinical trial begun .

I don’t understand the delay to publish the study results…

[Community Member]

Sorry for the delay in responding! I appreciate Beenie in helping you. Please register with End the Legacy via our website and you’ll then receive notices of our virtual meetings, meeting notes, webinar notifications and other news. https://www.endthelegacy.org/

We also have a couple of general Familial and Genetic support groups, as well as my ALS FTD Caregivers group. (20+) Familial ( hereditary, genetic) ALS / MND Support Group | Facebook

(20+) Familial / Genetic / Inherited FTD/FTLD Frontal Temporal Dementia Support | Facebook

endthelegacy.org

Home | End the Legacy

Patient led organization for those impacted by genetic ALS and FTD.

[Community Member]

Susna-Baker, thanks.