Hereditary Disease Foundation
Innovating research, discovering cures
Programs and results
What we aim to solve
Huntington's disease (HD) is a dominantly inherited, neurodegenerative disease causing irreversible decline in mood, memory, and movement. There is currently no cure. Each child of an affected parent has a 50% risk of inheriting the same lethal affliction. HD usually strikes between the ages of 30 to 40, in an individual's prime productive years, though children as young as two years old and adults in their eighties may also develop symptoms. Most individuals in the late stages of illness require enormous assistance. They lose the ability to walk, talk, and feed themselves, but are still conscious, aware and know themselves and their families.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Research Grants
HDF provides Postdoctoral Fellowships and Grants to researchers to advance the discovery and development of treatments for HD and other brain disorders. We are passionate about finding and funding the most promising, creative and paradigm-changing research.
HDF Postdoctoral Fellowships fund the work of young, promising scientists. These fellowships are intended to cultivate interest in Huntington’s disease research by encouraging scientists early in their careers. The Hereditary Disease Foundation awards two-year fellowships of up to $75,000 per year.
HDF Grants provide more experienced researchers with the seed funding to enable them to collect preliminary data. This data generated has allowed many researchers to receive major long-term funding from other sources, including the National Institutes of Health. The Hereditary Disease Foundation awards one-year grants of $75,000.
HDF Workshops and Meetings
Our programs have critically changed the paths of many scientific careers, capturing imaginations to study genes and the brain. Extraordinary partnerships in the quest to find treatments and cures for Huntington’s disease are often forged at HDF meetings.
Our Young Investigators Forum brings together HDF-funded researchers monthly to discuss new pathways to discovery. Each session creates opportunities to share novel techniques and form collaborations, opening doors to future funding and more rapid advancements in research.
HDF Workshops bring together small groups of scientists from different disciplines to brainstorm and explore new directions for research. Participants are urged to collaborate and share unpublished data and often come away from Workshops with new ideas and the impetus to apply for HDF funding.
Milton Wexler Symposium
Every two years, the Hereditary Disease Foundation’s Milton Wexler Symposium brings together some 300 of the world’s foremost experts in HD and other neurological diseases. For three days, scientists share their latest discoveries and explore cutting-edge approaches to research, sparking discussions of new ways to design and create therapies.
The Symposia are designed to:
Address the most recent developments in drug research
Spark discussions of new ways to design and create therapies for HD
Forge collaborations to quickly translate lab findings into clinical results
The key strength of each symposium is its focus on the lab research that is needed to find treatments,
design those treatments, and focus on the best treatments and cures.
Where we work
External reviews
Photos
Our results
How does this organization measure their results? It's a hard question but an important one.
Evaluation documents
Download evaluation reportsNumber of attendees present at rallies/events
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Milton Wexler Symposium
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
The Hereditary Disease Foundation’s first biennial meeting in 1998 had 75 participants. In 2018, approximately 250 international scientific pioneers will attend to collaborate and share.
Number of organizational partners
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We received corporate sponsorship in 2018 and 2019 from 13 pharmaceutical, biotech and financial companies. We appreciate this vote of confidence in our effort to achieve our mission.
Number of list subscribers
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We have a total of 10,978 subscribers to our mailing list, of which 946 are international. Of this 10,978, we have email address for 5,299 members.
Number of overall donors
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Context Notes
We accomplish a tremendous amount through the incredible generosity of a small number of donors who give multiple times per year. We are very appreciative for all they do to help us with our mission!
Number of research studies funded
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Research Grants
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The Hereditary Disease Foundation focuses on curing Huntington's disease, not only because of its devastating consequences to individuals and families with the disease, but because it is a model for curing other brain disorders like Parkinson's, Alzheimer's and Lou Gehrig's (ALS) diseases.
Today the Foundation continues to fund innovative research toward curing Huntington's disease and other brain disorders.
What are the organization's key strategies for making this happen?
The Hereditary Disease Foundation aims to make an impact to develop novel therapeutics and cures. We are putting in place strategies and new grant funding programs to maximize our effectiveness. We have been funding catalytic and paradigm-changing research since our birth – including identifying the Huntington's disease marker in 1983 and the HD gene in 1993, and supporting gene silencing approaches since 2002. We want to continue to make an impact by funding research that pushes the envelope.
What are the organization's capabilities for doing this?
The Hereditary Disease Foundation provides funding for research that advances the discovery and development of treatments for Huntington's disease and other brain disorders. We are passionate about finding and funding the most innovative, creative and paradigm-changing research possible. The data generated with HDF funding often allows researchers to get initial findings that help them apply successfully for larger, long-term funding from other funding agencies, including the National Institutes of Health.
What have they accomplished so far and what's next?
The best way to see our progress is to look at the timeline on our website: http://www.hdfoundation.org/road-to-the-cure/
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Hereditary Disease Foundation
Board of directorsas of 04/25/2022
Mrs. Karen Newman
Robi Blumenstein
CHDI Foundation
Bruce Donaldson
Simplicity Financial
Meghan Donaldson
Hereditary Disease Foundation
Sandy Fox
Berta Gehry
Gehry Partners, LLP
Frank O. Gehry
Gehry Partners, LLP
Kelly Posner Gerstenhaber
Columbia University
David Housman
MIT
Joan Leiman
Karen Newman
Herbert Pardes
New York Presbyterian Hospital
Alice Wexler
Nancy Wexler
Hereditary Disease Foundation; Columbia University
Anne B. Young
Harvard University; MassGeneral Hospital
Lauren Pinkus
Tacie Fox
Leslie M. Thompson
University of California, Irvine
C. Frank Bennett
Ionis Pharmaceuticals
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
The organization's co-leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
Disability
No data
Equity strategies
Last updated: 04/25/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
- We have community representation at the board level, either on the board itself or through a community advisory board.