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ALS Association
The ALS Association is a non-profit organization that seeks a cure for ALS and works to improve daily life for those living with the disease.
ALS Association
The ALS Association is a non-profit organization that seeks a cure for ALS and works to improve daily life for those living with the disease. It supplies support services to patients and their families, funds research, and directs advocacy programs. The organization maintains operations in all 50 states.
General information
Firm type
Foundation
Year founded
1985
Location
Region
North America
Country
United States
City
Sterling, IL
Corporate office
Washington, DC, United States
Principals
Calaneet Balas
President and CEO
Sector focus
Frequently asked questions
Who runs the ALS Association's operations and grantmaking decisions?
Calaneet Balas serves as President and CEO, leading a team that includes a Chief Scientific Officer and a Chief of Care Services. Research grants are awarded through a peer-reviewed process advised by external scientific experts, not by a single investment committee or family principal. The organization is governed by an independent board of trustees.
How does the ALS Association fund its research and care programs?
The association is a public charity funded primarily by individual donations, corporate partnerships, and fundraising events such as Walk to Defeat ALS. The 2014 Ice Bucket Challenge alone raised $115 million. Unlike an endowment-funded foundation, it must continually raise new funds each year to sustain its grant cycles and care services.
Does the ALS Association maintain an endowment or investment portfolio that institutions can co-invest alongside?
No. The ALS Association is a grantmaking public charity, not an investment firm or endowed foundation. It does not operate a return-seeking portfolio, nor does it take equity positions in biotech companies. Institutional allocators looking for exposure to ALS therapeutic development should evaluate the venture-backed biotech companies that receive its research grants, not the association itself.
What is the ALS Association's known posture on co-investments or partnerships with venture capital firms?
The association does not co-invest alongside external GPs or make for-profit investments. Its relationship with industry is through research partnerships and clinical trial support, not through equity ownership. It has partnered with pharmaceutical companies and biotech firms to accelerate therapy development, but these are grant-based or collaborative research arrangements.
How is the ALS Association related to the ALS Therapy Development Institute or other ALS-focused research entities?
The ALS Association is a separate nonprofit from the ALS Therapy Development Institute, which operates a research lab in Cambridge, Massachusetts. The association has funded ALS TDI through grants and maintains a complementary mission — but they are independent organizations with different operating models. The association is a grantmaker; ALS TDI is a research institute that also raises public donations.
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