This has been a difficult year.
At last year’s Target ALS Annual Meeting, I fell ill and what began as a cold developed into pneumonia. While I was in the hospital, my pulmonologist recommended that I have a tracheostomy, which my wife, Alisa, and I decided to proceed with immediately. I spent 16 days in the hospital and since then, I have required 24/7 care. My privacy was lost and I began relying on a 430 pound wheelchair. Over the course of the year, I’ve experienced progressive weakening of my voice, legs, arms and hands.
To continue communicating, including during this year’s Annual Meeting, I’ve been using an AI application called ElevenLabs. While these physical challenges are the nature of ALS, I remain an optimist and there is nothing that I’m more optimistic about than ALS research and Target ALS.
Over the past three years at Target ALS, we’ve increased our research budget by four times and significantly expanded our impact. Our guiding values are impatient optimism, deliberate disruption, and radical collaboration and they shape everything we do. We bring together academics, companies, other ALS organizations, other neurological disease organizations, and the NIH to fuel innovation and accelerate discoveries.
Target ALS supports research through three key strategies: we fund, enable, and conduct.
- As the largest private funder of ALS research in the world, our consortia grants are fueling the future of ALS treatment.
- We provide a suite of critical tools and resources that empower scientific innovation, enabling more than 1650 projects to-date to explore the unknowns of ALS.
- We are conducting studies that explore the disease in diverse populations across the globe, including a Global Natural History Study. We will soon have 18 sites across the world.
In the past year, our Independent Review Committee (IRC) has selected 21 projects out of 177 applications submitted by 470 principal investigators from 254 institutions located in 26 countries. In early 2024, we launched our Data Engine, which has already been accessed by over 300 users.
I’m especially proud that this year, Target ALS is funding three new research consortia focused on developing novel modalities, approaches that target ALS at the genetic level. These projects explore advanced tools like Crispr gene editing and antisense oligonucleotides (ASOs), technologies designed to precisely turn off or correct the harmful genetic instructions that may drive the disease.
Each consortium brings together top academic researchers and biotech partners working side by side to move these complex therapies from the lab bench toward real world clinical use. We are making progress on basic biology, genetics, biomarkers, AI, and novel therapeutics.
On a personal note, I continue to find joy and strength in my relationships and having a purpose, two things I believe matter most in life. In the past year, my wife and I have had three granddaughters born, bringing our total to five granddaughters born since I was diagnosed. They all live close by and I see them often. My family and friends have been a constant source of support and my purpose remains unwavering: to ensure everyone lives with ALS. That is my mission and my purpose.
Every single person present at the Annual Meeting is contributing to the rapid advancement of ALS research. Your support made their attendance possible. Because of you, I am confident we are going to solve this disease for every ALS patient.
Thank you for helping to build a world where everyone lives. I will continue to be involved in Target ALS until I can’t do it anymore, which I hope will be for a very long time. I hope you’ll continue to join us.
Thank you,
Dan Doctoroff
Founder and Chairman,
Target ALS
