Question: if a loved one were diagnosed with a terminal or rare disease and there was a safe drug that could help them but was going through additional testing would you want access to it?
If yes, please read and sign this letter.
Now let me back up.
iamalsorg.typeform.com/to/n5XxZ2
If yes, please read and sign this letter.
Now let me back up.
iamalsorg.typeform.com/to/n5XxZ2
For those that follow me you see me tweet alot about hope in the fight against ALS. There are many reasons for this, but among the most important is the explosion of promising treatments. Stem cells, gene therapies, and on and on.
In a few years our capacity to combat ALS will be astounding if we keep up this pace of discovery. It is critical that as we shoot for the future we do not forget about the present and the hundreds of thousands living with ALS today.
It is on their—on our—backs that this future will be made real, yet in a cruel irony there is no real, reliable way to provide access to these promising therapies to all those alive today. This is unacceptable and the reason for this letter.
You see we know how to change this reality to provide a real pathway for access today. Indeed the pathway exists it just needs to be updated but we have lacked the strength and focus to make it real. That changes now.
We’ve spent the last year building, learning and coordinating. This is our time to change this broken system, to make hope and treatments real now. And when we do this won’t just help those living with ALS. It will help millions living with rare or terminal diseases.
This fight is for all those left being or marginalized by the system. Alone we are fragile. Together we can do amazing things. Join us:
iamalsorg.typeform.com/to/n5XxZ2
iamalsorg.typeform.com/to/n5XxZ2
