There has been a tremendous amount of attention paid to ALS/MND thanks to the global social media phenomenon the #icebucketchallenge. Millions of people have by now accepted the ice bucket challenge for ALS, which called for people to have some fun and donate to ALS research. Most importantly, it has taken ALS from a little known orphan disease to something being spoken about in nearly every home across the globe. People are now learning about ALS and better understanding people diagnosed with ALS such as Pete Frates, Pat Quinn, Beth Hebron and Anthony Carbajal.
However, with this attention and momentous unexpected increase in funding, ALS organizations like ours have a responsibility to speak directly to donors and the ALS community about how these funds will be utilized now. From the top down at ALS TDI, we feel a sense of responsibility and urgency in finding ways to accelerate our mission: to discover and develop effective treatments for ALS. As we work toward that mission as the world’s first nonprofit biotech, we have a long-held commitment to transparency.
To date, the ALS Therapy Development Institute has been the grateful beneficiary of more than $3 million (as of this morning at 9AM ET) resulting from individuals accepting and passing forward the #icebucketchallenge. Because of our unique model, we are well positioned to direct these funds to specific efforts which will accelerate our mission.
We will invest $1 million of the currently received funds in our recently launched precision medicine program. These funds will allow us to expand and include more collection sites and to enroll and bank induced pluripotent stem cell lines from hundreds of patients versus the original 25 PALS which were possible in our current budget. This will help accelerate the identification of subgroups of ALS patients, and potential treatments which can be screened in them.
We will also invest $1.5 million in the advancement of a promising treatment into clinical trial. Previously, we had been waiting to move forward due to the lack of neccesary funds availabe. I thought it would take 2 more years before we could invest this much into this exciting program. The #icebucketchallenge changed that reality in a big way. We will present this data to the global scientific and patient communities a couple of times this year, including at our 10th annual Leadership Summit in November.
As a nonprofit we believe it is crucial that we tell donors that we aren’t going to sit on this money. I am going to write more about these strategic investments that the #icebucketchallenge has made possible. I will also be holding a webinar soon to have an open discussion about these strategic investments.
I am writing today to describe how we will invest the $3 million we have received to date. Is this all the funding needed to end ALS? No. Additional funds will be needed so that we can take additional risks and make bigger and bigger investments.
In short, what do you do when you have a windfall of cash and a sense of urgency? Spend it.
Sincerely,
Steve
PS: If you would like to view me and some of YOUR team at ALS TDI accepting the ice bucket challenge, click here.
