October 20, 2020 at 1:13 pm #16600Dagmar MunnKeymaster
More (and very positive!) news is coming out about AMX0035. From press releases, to webinars, to reports from clinical trial participants.
Here is a listing of current news this week:
- “Long-Term Survival of Participants in the CENTAUR Trial” Oct. 21, 2020. Sabrina Paganoni, MD, PhD and Merit Cudkowicz, MD, MSc from the Sean M. Healey & AMG Center for ALS at Mass General Hospital. More at: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/
- “Open Label Extension Study Results of AMX0035: Implications for People with ALS” Oct. 21, 2020. In this session, Dr. Neil Thakur and Dr. Kuldip Dave from The ALS Association will talk about the implications of additional results from the Open Label Study of the CENTAUR trial for the ALS community. They will discuss The ALS Association’s plans for helping the ALS community influence when AMX0035 might be approved for clinical use. Dr. Jinsy Andrews, NEALS co-Chair and Association Trustee, will moderate audience questions. More at: https://register.gotowebinar.com/register/3880047202378628109?utm_source=102120+Thakur+Dave+Webinar+&utm_campaign=102120+ALSA+Webinar+&utm_medium=email
- ALS News Today article: https://alsnewstoday.com/news-posts/2020/10/19/amylyxs-amx0035-significantly-extends-als-patients-lives-long-term-trial-data-show-also-slows-functional-decline/
If you know of other news or updates about AMX0035, please add it in the comment section below.
October 20, 2020 at 4:06 pm #16608CindyParticipant
All of this is exciting and hopeful. But will it be in time to help us? That is the question.
October 20, 2020 at 5:06 pm #16610Marianne OpillaParticipant
I am so grateful for the scientists, researcher, financial supporters for this treatment. WE NEED IT NOW!
October 21, 2020 at 3:06 pm #16618DanDParticipant
Since diagnosed with ALS I’ve been living with this shadow overhead and it feels like I’ve been sleeping with a cloud above my bed. I’ve been suffering for so long, trapped and I just can’t seem to move on. I’ve been hiding all my hopes and dreams away just in case a cure is found someday. I’ve been setting aside time, to clear a little space in the corners of my mind. All I want to do is find a way back to the life I once had. I can’t make it through another day without some hope for a way back….
I’ve been watching but the stars refuse to shine. I’ve been searching but I just don’t see the signs. I know that it’s out there. There’s got to be something for my soul somewhere. I’ve been looking for someone to shed some light. Not somebody just to get me through the night. I could use some direction and I’m open to any and all suggestions. All I want to do is find a way back to the life I once had. I can’t make it through another day without a way back. And if I open my heart again, I guess I’m hoping maybe AMX0035 will be there for me in the end….
There are moments when I don’t know if it’s real or if anybody feels the way I feel. I need inspiration not just another medical negotiation. All I want to do is find a way back to the life I once had. I can’t make it through without a way back. And if I open my heart to you, I’m hoping AMX0035 will shed some light. And if you help me to start again, you know that I’ll be there for you in the end…….I Promise
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