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C9 research

Posted by Lonny Strum on October 20, 2021 at 8:29 am

Is anyone aware of the status of Biogen’s C9 gene clinical trial? It was in phase 2 in 2020 but have heard nothing about its progress.

Joan replied 3 years, 5 months ago 2 Members · 2 Replies
- #C9 #FamilialALS
2 Replies

Lisa Bonahoom

Member
October 24, 2021 at 7:55 pm

Hi Lonny! It is still going. I am in it. They are still trying to find the optimal dosage. It is very tightly controlled. Do you have C9? Lisa
- Lonny Strum
  
  Member
  January 8, 2022 at 7:36 am
  
  No my late wife had the C9 gene. I am very interested in understanding where the research is. How are you doing on the meds?
- Joan
  
  Member
  January 11, 2022 at 2:43 pm
  
  I have the C9 defect. what study are you in and through whom or where?
Laurel Linton

Member
January 11, 2022 at 3:00 pm

Lisa,

Good morning, I just saw your link about the C9 Gene and I was diagnosed November 2021 with ALS and also with the C9 gene. Is there a way to join the study now or is it to late.

Thanks for any help you can share with any of us.

Take Care,

Laurel Linton

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