Expanded Access Legislation - thank you!!

[BlsdMama]

To all of you who called or wrote - a big thank you.

I'm shocked to report that I became eligible for a major trial (phase III) for AMX0035 when the company announced they were utilizing the new expanded access legislation to add an arm to the third trial.  They'll be accepting 250 patients who were not previously eligible under earlier guidelines.  

Specifically I was never eligible because after a delayed diagnosis and some bunny trails, I wasn't under 24 months since symptom onset.  The new arm of the trial are patients greater than 36 months since symptom onset.  Quadruple blind and I couldn't find what percentage will be placebo, but I really didn't see this coming.

In large part it's because they attached funding to provide grants to companies, increase access, create platform trials, as well making ongoing expanded research feasible and more attractive.  I Am ALS is doing what the ALS Association should have been doing all along and maybe ALS would be a treatable disease by now.  However, regardless, what started as a grassroots movement to change ALS advocacy, I Am ALS has changed ALS research forever and so has every person who made the call, wrote the letter, shared the post, moved the ball.

Thank you.  What you did mattered.

[Faith-manor]

Kelly, that is wonderful! Thank your to being willing to be a lab "rat". I hope this drug is wildly successful.

[Tanaqui]

Oh, how amazing! I'm so happy for you.

[freesia]

Excellent! I am so happy for you!

[MercyA]

Wonderful!!! Praying for you. ❤️

[melmichigan]

For those interested this was the company statement today. 

I'm very happy for you Kelly.

Edited March 18, 2022 by melmichigan

[Catwoman]

I'm so happy you have gotten this opportunity, and I'll be praying for you!!!

[popmom]

Much respect and admiration for all the ways you advocate for yourself and all others walking this road. Praying for you. Praying for a cure. 

[Melissa in Australia]

that is exciting news

congratulations 

[Guest]

Kelly, this is terrific news! Thank you for being willing to be vulnerable. May you be richly rewarded. 

[wintermom]

That's exciting news! I hope that the trial process goes really well for you. Some people notice benefits simply from the fact of receiving regular, close contact with health care professionals looking and listening really attentively to their health concerns. 

[Granny_Weatherwax]

Oh my goodness, what a wonderful thing to have happened. I hope you benefit greatly from your advocacy and participation. Think of how many lives you've changed with your efforts. This is good indeed.