The ALS Therapy Development Institute (ALS.net) received $3.5 million from the #IceBucketChallenge. This money is being used to accelerate our mission to actively discover and develop treatments for ALS. We are 100% focused on ALS research, and since ALS.net is led by people with ALS (PALS) and their families, we understand the urgent need to accelerate ALS drug development. It is important that each of us, whether we are a donor or an organization, demonstrate how we are applying funds and the impact those allocations have on PALS. Transparency is important.When the windfall of money came in this summer, we organized quickly and made specific allocations for it into areas of our program the funds could directly advance. This included making a major investment in the Institute’s Precision Medicine Program, enabling us to enroll hundreds of people rather than the 25 patients we originally had funding for. It also enabled us to ramp-up a much-needed clinical trial on a treatment targeting misfolded SOD1 protein, which has been globally accepted as an important target for drug development. We also made an investment in a second lead candidate for clinical trial: an immune modulator we believe could modify the body’s innate immune system in a way that could potentially influence disease progression. We felt empowered to make these investments because the message from the public was clear—spend the #IceBucketChallenge donations on ALS research.
We are sharing our philosophy and decision-making process with other ALS-focused organizations that received funds as a result of the Ice Bucket Challenge. You are likely asking what our philosophy is. My predecessor as president of the Institute, Sean Forrester Scott, used to sum it up this way, which I think is spot on: “It’s not about how much money we can raise, it’s about how much money we can spend.” We plan efficiently for what can be done with today’s donations and think strategically about where unexpected resources could be most significantly invested. This philosophy puts ALS.net in a position to make decisions rapidly and invest wisely and urgently. This is the message we are sharing with other ALS/MND organizations in the U.S. and abroad as they make their own decisions about where and how to allocate funds received during this epic summer.
We encourage you to stay involved and keep us and other ALS organizations accountable for all funding received. At ALS.net, your donations are being put into action. You are making a difference, you do have impact. As Anthony Carbajal said, each video he watched gave him more hope and the strength to share his own family’s story. He no longer felt alone. And recently, I have been fortunate to meet many people that have been directly affected by the funds ALS.net received from the #IceBucketChallenge. While I can’t list them all, here are a few blog and video posts that have inspired me: José Cofiño, Sarah Coglianese and Stephen Finger.