Friends of FSH Research
In Pursuit of a Cure
Programs and results
What we aim to solve
There is currently no treatment or cure for FSH muscular dystrophy (FSHD). We also found very little funding of FSHD research by existing national organizations. We fund innovative, cutting edge research aimed at finding a treatment or cure, and stimulating scientists to advance our understanding of the disease to bring a treatment or cure to patients as quickly as possible.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
In Pursuit of a Cure
Annual charity fundraising event.
Through this event we raise the funds to support our research grants and auxiliary programs.
Research Grant Program
Grants are solicited from scientific researchers and experts in the field of FSH muscular dystrophy.
Where we work
Photos
Videos
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?
Our goal is to continue to impact FSH research, promote research collaborations and collaborations in funding.\r\nTo work together with other FSH research funding agencies internationally to collectively move this research forward toward a treatment or cure.\r\nWe are working with others to develop an effective/efficient patient registry and working internationally to establish a consistent data collection method protocols.
What are the organization's key strategies for making this happen?
Collaboration and transparency in working with researchers and donors. \r\nProviding leadership for moving research forward and pushing forward clinical readiness and registry issues.
What are the organization's capabilities for doing this?
We have lead the way by conducting an FSHD Research Summit in late February 2016, as well as . We organized a meeting of researchers, academic leaders and industry partners to evaluate the current status of FSHD research and set priorities for clinical readiness. \nWe participate in monthly meetings with other FSH international funding organizations.\nWe offer our Scientific Advisory Board's expert to other organizations which request it.
What have they accomplished so far and what's next?
We still have not helped to find a therapy for FSHD muscular dystrophy but the first-ever drug trial began in October 2019. Other drug trials are on the near horizon. The potential for a treatment is closer than ever before and we keep working with scientists, pharmaceutical companies and other patient advocacy groups to push forward toward possible treatments.
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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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.
Friends of FSH Research
Board of directorsas of 09/29/2024
Terry Colella
No Affiliation
Term: 2004 - 2025
Bradley Bagshaw
unaffiliated
Term: 2016 - 2025
Richard Colella
No Affiliation
Lynn Fischer
No Affiliation
George Shaw
No Affiliation
Chris Haven
No Affiliation
Premi Hynes
Briistol Meyers Squibb
Elisabeth Jas
No Affiliation
Erik Svenson
No Affiliation
Karl Voss
No Affiliation
Michelle Kind
No Affiliation
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? No -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
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: