GOLD2023

Friends of FSH Research

In Pursuit of a Cure

aka Friends of FSH Research   |   Kirkland, WA   |  www.fshfriends.org

Mission

FSH or FSHD, (Facioscapulohumeral Dystrophy) is a degenerative muscular disease for which there is no treatment or cure. With increased public awareness \u0026 research funding, a cure is possible. The specific objectives and purposes of the corporation shall be: 1. To encourage, promote and fund increased scientific and clinical research for FSH with the goal of identifying treatment and a cure for the disease. 2. To conduct fundraising efforts and solicit grants and contributions from individuals, private foundations and others, in order to sponsor research to advance the study and understanding of FSH muscular dystrophy. 3. To disseminate information about FSH and encourage additional public support for FSH research by raising public awareness of the need for research funding.

Notes from the nonprofit

Founded in 2004 following a family\u0027s diagnosis of FSH muscular dystrophy, Friends of FSH Research has impacted research. Totally dependent upon public donations, we have supported research projects and researchers which have helped push this research field forward. \r\nToday we are looking at beginning clinical trails! For all those that live with the limitations imposed by FSH, we give a warm thank-you to all those that have helped support this work. \r\nSoon, a doctor will be able to say \u0022we have a cure,\u0022 to the next child diagnosed with FSH. \r\nAmazing is possible!!

Ruling year info

2004

President

Ms. Teresa Colella

Vice President

Bradley Bagshaw

Main address

217 19th Place

Kirkland, WA 98033 USA

Show more contact info

Formerly known as

Pacific NW Friends of F SH Research

EIN

86-1108537

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Health - General and Rehabilitative N.E.C. (E99)

Nerve, Muscle, Bone Research (H50)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Children and youth
Adults

Grants are solicited from scientific researchers and experts in the field of FSH muscular dystrophy.

Population(s) Served
Adults
Adolescents

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

Collaboration and transparency in working with researchers and donors. \r\nProviding leadership for moving research forward and pushing forward clinical readiness and registry issues.

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\u0027s expert to other organizations which request it.

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

Friends of FSH Research
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Operations

The people, governance practices, and partners that make the organization tick.

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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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Friends of FSH Research

Board of directors
as of 01/21/2023
SOURCE: Self-reported by organization
Board co-chair

Terry Colella

No Affiliation

Term: 2004 -


Board co-chair

Bradley Bagshaw

unaffiliated

Term: 2016 - 2019

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

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 1/21/2023

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability