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Alpha-1 Foundation
Alpha-1 Foundation funds research for Alpha-1 Antitrypsin Deficiency with $100M invested across 130 institutions worldwide.
Alpha-1 Foundation
The Alpha-1 Foundation is a not-for-profit organization based in Coral Gables, Florida, founded in 1995 by three individuals diagnosed with Alpha-1 Antitrypsin Deficiency: John Walsh, Sandy Lindsey, and Susan Stanley. All three founders have since passed away, with Susan Stanley dying in 2000, Sandy Lindsey in 2002, and John Walsh in 2017. A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with it. The foundation invests in research to understand, detect, treat, and cure Alpha-1, having allocated $100 million to date across 130 institutions in North America, Europe, the Middle East, and Australia (per the firm's website). Its programs include genetic counseling, peer guides, and a support line. The foundation collaborates with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), and the pharmaceutical industry to develop new therapies. No separate investment arm or deployment beyond research grants is publicly disclosed. The foundation does not publish AUM, professional headcount, or additional office locations beyond its Coral Gables headquarters. Its website lists no current named officers or staff beyond the founders. The foundation maintains an advocacy role in industry and government liaison groups, building alliances to accelerate therapy development. Its governance structure — dominated by patients or their families — distinguishes it from disease foundations run by medical professionals or executives.
General information
Firm type
Foundation
Year founded
1995
AUM
Undisclosed
Location
Region
North America
Country
United States
City
Coral Gables
Corporate office
Coral Gables, FL, United States
Principals
John Walsh
Co-Founder
Sandy Lindsey
Co-Founder
Susan Stanley
Co-Founder
Sector focus
Frequently asked questions
Who controls the investment decisions at Alpha-1 Foundation?
The foundation does not publicly disclose a named investment committee or CIO. Its research funding is overseen by the Board of Directors, a majority of whom are diagnosed with Alpha-1 or have an affected family member (per the firm's website). No separate investment office or external manager is identified.
How does Alpha-1 Foundation allocate its capital?
The foundation exclusively allocates capital to research grants and programs, with $100 million invested across 130 institutions in North America, Europe, the Middle East, and Australia (per the firm's website). It does not maintain separate endowment-like investment assets or direct private equity positions.
What is the relationship between Alpha-1 Foundation and pharmaceutical companies?
The foundation collaborates with the pharmaceutical industry to develop new therapies, working alongside the NIH and FDA (per the firm's website). It also participates in industry liaison groups to advance clinical development. The foundation does not disclose specific licensing or royalty arrangements.
Does Alpha-1 Foundation operate as a family office?
No. The Alpha-1 Foundation is a not-for-profit disease foundation, not a family office. It supports research and advocacy for Alpha-1 Antitrypsin Deficiency, and it is governed by a patient-majority board.
Which institutions does Alpha-1 Foundation fund?
The foundation supports research at 130 institutions across North America, Europe, the Middle East, and Australia (per the firm's website). Specific grantees are not listed on the public site, but the foundation states it works closely with the NIH, FDA, and pharmaceutical partners.
Are there any known recent changes in foundation leadership?
The last publicly noted death of a founder was John Walsh in 2017 (per the firm's website). Current leadership is not disclosed on the foundation's website beyond the board structure.
What geographic regions does Alpha-1 Foundation focus on?
The foundation funds research in North America, Europe, the Middle East, and Australia (per the firm's website). Its advocacy and program reach are global, but most grants appear concentrated in the United States and Europe.
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