A note from I AM ALS CEO on a policy change
To our advocates-
When I AM ALS launched in early 2019, we committed that all donations made through our website would go directly toward research that could make a difference in speeding progress against this disease. Since then, every dollar that has come into the organization through grassroots measures — by selecting give on the website or those donations from the community reaching us by check, including those made in memory of a loved one or through a local fundraiser — has gone to research grants to drive treatments and cures. Your generosity has enabled I AM ALS to put $500,000 toward research in 2020 — we are excited to share more with the community over the next week about the grants supported with these funds.
As I AM ALS has grown, we have created new ways to serve the ALS community; one of the most direct being the services and support provided through our navigation program. As such, we are making a change to our donation policy. Grassroots donations through our main website donation page will go to support the programs we have that most directly deliver for the ALS community — namely they will continue to go to research grants and now to improve access to care and services and the everyday lives of those impacted by ALS, through I AM ALS Navigation.
Note this is completely separate from all other program and operating costs, the resources for which are raised through our leadership and board. None of the research or navigation funds will be used on salaries, these donations will still directly support research and on reaching as broad a community of people impacted by ALS as possible with the information, resources and support they need. We will maintain transparency with the community to share publicly at the end of each calendar year how the research and navigation funds are being utilized. As always, please let us know if you have questions.
We hope this note reaches you enjoying a happy start to the holiday season!
We will find cures for ALS. The only question is when. That answer depends on you.
Stay informed on I AM ALS’ progress and what you can do to help us make hope real.
Where the Money Goes
One of the most important roles we have as an organization is to be a good steward of the donations you provide to focus on accelerating promising research and getting treatments in the hands of patients — not in 20 years, but as soon as possible. In 2020, I AM ALS funded $500,000 in ALS research grants.
Brainstorm’s NurOwn Updates
In a first-of-its-kind meeting, I AM ALS brought together senior leadership from the Food and Drug Administration (FDA) and Brainstorm Cell Therapeutics, a U.S. biotechnology company that is developing a potential breakthrough ALS treatment, NurOwn.
ALS Signal and PaCTD
I AM ALS debuted the launch of ALS Signal: Clinical Research Dashboard. ALS Signal is a new global resource created by dedicated patients, caregivers and advocates to offer a user-friendly way to discover current ALS-related clinical research, allowing for efficient access to information that is vital to the ongoing efforts to end ALS.