irs program accomplishments · form 990 part iii · fy2023
What they reported doing
- #1 primary $413KEDUCATION - RAISE AWARENESS OF AND PROVIDE INFORMATION ABOUT AMYOTROPHIC LATERAL SCLEROSIS (ALS) THROUGH SPEAKING ENGAGEMENTS, NEWSLETTER AND WEBSITE.
named programs · 4 · from sources
What they call their work
ALS in a Dish
Cellular drug screening model developed by Dr. Hynek Wichterle that uses reprogrammed stem cells to study ALS and test potential therapies.
Jenifer Estess Laboratory for Stem Cell Research
Supports the development of patient-derived cellular models of ALS to improve understanding of disease mechanisms and drug screening.
NextGen ALS
A Weber family initiative in collaboration with Project ALS focused on funding targeted research for genetic forms of ALS, starting with CHCHD10 mutations.
Project ALS Therapeutics Core at Columbia
A research initiative advancing drug discovery for ALS, including the development of prosetin, a potential treatment now in Phase I clinical trials.
activities · 5 groups
What they do
-
Neurological Disorder Research & Rehabilitation 1 activity
- Funding and conducting ALS research across academic institutionsIdentifies, funds, and conducts scientific research to develop treatments and a cure for ALS by supporting collaborative studies in stem cell biology, genetics, drug screening, and clinical trials across more than 30 academic institutions since 1998. Directs between 80-93% of annual funds to ALS research programs.
-
-
Genetic and Neurological Disease Research Funding 1 activity
- Funding research on genetic forms of ALS through targeted initiativesFunds and supports research on genetic forms of ALS, including the NextGen ALS initiative in collaboration with the Weber family and specific funding campaigns targeting the CHCHD10 mutation, raising $250,000 for this purpose.
-
-
Charity Event Organization 1 activity
- Hosting fundraising events for ALS therapeutics researchHosts an annual gala and online auctions to raise funds for ALS research, including raising nearly $1 million at its 24th annual gala.
-
-
Public Awareness and Educational Outreach 1 activity
- Raising awareness about ALS through public engagement and mediaRaises awareness and provides information about ALS through speaking engagements, newsletters, a website, and distribution of video messages during ALS Awareness Month featuring public figures.
-
-
Uncategorized 1 activity
- Accepting diverse forms of donations to support ALS researchAccepts one-time, recurring, and legacy gifts via multiple channels including checks, wire transfers, stock donations, PayPal, Venmo, Qualified Charitable Distributions from IRAs, eBay charity auctions, employer matching gifts, and workplace giving programs.
-
financials · form 990 · fy2023
revenue
Total revenue$2.98M
Contributions & grants$3.12M105%
Program service revenue$00%
Investment income$31K1%
Other revenue$-170K
expenses
Total expenses$3.41M
Program expenses88%
Admin / overhead9%
Fundraising4%
Salaries & benefits$1.10M
Grants paid out$1.84M
Largest expense lineCompensation
balance sheet
Total assets$1.75M
Cash$1.51M
Investments$200
Liabilities$2.81M
Net assets$-1.06M
Liquid reserves5.3 mo
5 years on record · 2019–2023 · YoY revenue -21.1%
leadership · form 990 part vii · fy2023
Who runs it
paid leadership · 4
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| VALERIE ESTESS | VICE PRESIDENT | 50 | $256K |
| MEREDITH ESTESS HULBERT | PRESIDENT | 50 | $245K |
| GAIL CARSON | CONTROLLER (CFO) | 40 | $112K |
| MARGARET SHANAHAN | EXECUTIVE DIRECTOR | 40 | $85K |
board members · 21
- ARTHUR FRASIER — DIRECTOR
- BONNIE VERBITSKY — DIRECTOR
- BRUCE SPOHLER — DIRECTOR
- CHAD CASCARILLA — DIRECTOR
- CHRISTINE TAYLOR — DIRECTOR
- DANIEL KELLISON — DIRECTOR
- DARCI CARLTON — DIRECTOR
- DAVID L JAFFE — DIRECTOR
- DEBBIE WILPON — CHAIR
- DEBRA WASSERMAN — DIRECTOR
- F JONATHAN DRACOS — DIRECTOR
- JACK MERRILL — DIRECTOR
- LAWRENCE TARICA — DIRECTOR
- LORI HIRSHLIEFER SILLS — DIRECTOR
- MARCIE FLECK — DIRECTOR
- MARTHA MCCULLY — DIRECTOR
- MICHAEL BERMAN — DIRECTOR
- NANCY JARECKI — DIRECTOR
- PETER J HULBERT — DIRECTOR
- ROB BURNETT — DIRECTOR
- ROB MORROW — DIRECTOR
relationships · 32
Who they work with
- 30 leading academic institutions Partner — Collaborates with over 30 academic institutions to advance ALS research in stem cell biology, genetics, drug screening, and clinical trials.
- ALS Awareness Month Coalition — Participates in ALS Awareness Month initiatives to promote advocacy and research funding.
- Ben Stiller Partner — Longtime supporter and advocate who helped raise visibility for Project ALS since its founding; honored with the Project ALS Families Research Award in 2022.
- Boston Children’s Hospital Partner — Hosts Elizabeth Engle, MD, a member of the Project ALS Research Advisory Board.
- Christine Taylor Partner — Board member and leader at Project ALS; honored with the Project ALS Families Research Award in 2022.
- Columbia University Partner — Hosts Project ALS Therapeutics Core and is home to multiple Project ALS-funded researchers, including Principal Investigator Tom Maniatis and Associate Professor Ai Yamamoto.
- Columbia University Partner — Partners with Columbia University through the Project ALS Therapeutics Core at Columbia to advance ALS drug discovery and preclinical development.
- Columbia University Partner — Research collaborator in the NextGen ALS initiative to study and treat genetic ALS.
- Dr. Giovanni Manfredi Partner — Lead researcher at Weill Cornell Medicine studying mitochondrial dynamics in neuromuscular disease and leading CHCHD10 ALS research.
- Dr. Jeffrey Rothstein Partner — Collaborating neurologist and neuroscientist who diagnosed founder Jenifer Estess and became a founding figure in Project ALS research.
- Harvard Medical School Partner — Hosts Elizabeth Engle, MD, a member of the Project ALS Research Advisory Board.
- Her ALS Story Partner — Collaborated with Her ALS Story, a group of women living with ALS, to promote participation in the online auction.
- Howard Hughes Medical Institute Partner — Employer of Elizabeth Engle, MD, and H. Robert Horvitz, PhD, members of the Project ALS Research Advisory Board.
- I AM ALS Partner — Collaborates with I AM ALS, including on initiatives such as ALS Signal, to empower patients with information about global ALS research.
- Ionis Pharmaceuticals Partner — Engages with Ionis Pharmaceuticals through collaboration with Dr. Becky Crean on clinical development and advocacy in ALS drug development.
- Massachusetts Institute of Technology Partner — Hosts H. Robert Horvitz, PhD, a member of the Project ALS Research Advisory Board.
- NIH Government — Monitors and responds to proposed funding changes affecting ALS research, as reflected in Project ALS's public statements on NIH budget proposals.
- National Institutes of Health Government — Primary funder of ALS research initiatives at Project ALS, including the Therapeutics Core.
- Packard Center for ALS Research Partner — Collaborates with the Project ALS Core in a community-wide effort to improve drug screening through better laboratory disease models.
- Pfizer Government — Draws on regulatory expertise from Kevin Phelan, PhD, who had a 20+ year career at Pfizer, to inform prosetin development strategy.
- ProtejinX Partner — Industry partner advancing prosetin into clinical trial for ALS treatment.
- Regeneron Pharmaceuticals, Inc. Partner — Employer of David Glass, MD, a member of the Project ALS Research Advisory Board.
- Robert H. Brown Jr., DPhil, MD Partner — Founding member of the Project ALS Research Advisory Board and pre-eminent ALS geneticist collaborating with Project ALS.
- Robert Packard Center for ALS Research Partner — Co-hosted a workshop on ALS modeling and collaborates on research initiatives including Answer ALS.
- Simons Foundation Partner — Employer of Gerald D. Fischbach, MD, a member of the Project ALS Research Advisory Board.
- The Giving Block Partner — Partnered to enable online donations of cryptocurrency, stock, and Donor Advised Fund gifts.
- The Salk Institute for Biological Studies Partner — Hosts Eiman Azim, PhD, a member of the Project ALS Research Advisory Board.
- University of Massachusetts Medical School Partner — Home to Robert H. Brown, Jr., MD, PhD, a member of the Project ALS Research Advisory Board and funded researcher.
- University of Pennsylvania Partner — Home to James M. Wilson, MD, PhD, a member of the Project ALS Research Advisory Board and advisor to Project ALS-funded initiatives.
- Weber family Partner — Collaborates with Project ALS on the NextGen ALS initiative to fund research for genetic forms of ALS.
+ 2 more
strategies · 3
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Research Acceleration Modelmethodology: collaborative_research_modelBy requiring open data sharing, regular collaboration, and milestone tracking among funded researchers, Project ALS accelerates the pace of discovery and therapeutic development because coordinated science reduces duplication and fosters rapid iteration.
- Family-Partnered Genetic Therapy Developmentmethodology: family_partnered_researchBy partnering directly with families affected by specific genetic forms of ALS, Project ALS prioritizes and accelerates targeted therapy development (e.g., ASOs) because lived urgency and shared goals align research incentives with patient needs.
- Predictive Disease Modeling for Drug Discoverymethodology: predictive_disease_modelingBy developing more accurate, patient-derived cellular and AI-enhanced models of ALS, Project ALS increases the likelihood that therapies effective in the lab will work in patients, because better models reduce translational failure in drug development.