GOLD2023

Friends of FSH Research

In Pursuit of a Cure

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

Friends of FSH Research

EIN: 86-1108537


Mission

FSH or FSHD, (Facioscapulohumeral Dystrophy) is a degenerative muscular disease for which there is no treatment or cure. With increased public awareness & 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's 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 "we have a cure," 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

Subject area info

Health

Musculoskeletal diseases

Population served info

Children and youth

Adolescents

Adults

NTEE code info

Fund Raising and/or Fund Distribution (H12)

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

Nerve, Muscle, Bone Research (H50)

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's 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
Fiscal year: Jun 01 - May 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2023 info

SOURCE: IRS Form 990

8137.47

Average of 1860.63 over 10 years

Months of cash in 2023 info

SOURCE: IRS Form 990

9.5

Average of 23.5 over 10 years

Fringe rate in 2023 info

SOURCE: IRS Form 990

0%

Average of 14% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Friends of FSH Research

Revenue & expenses

Fiscal Year: Jun 01 - May 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Friends of FSH Research

Balance sheet

Fiscal Year: Jun 01 - May 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Friends of FSH Research

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jun 01 - May 31

SOURCE: IRS Form 990 info

This snapshot of Friends of FSH Research’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

* This organization changed its fiscal year accounting period in 2020. Please refer to its 2020 990s for more information.

Business model indicators

Profitability info 2018 2019 2020 * 2022 2023
Unrestricted surplus (deficit) before depreciation $135,501 $14,315 $197,316 $66,981 -$43,295
As % of expenses 33.3% 2.7% 30.9% 16.2% -5.5%
Unrestricted surplus (deficit) after depreciation $135,501 $14,315 $197,316 $66,981 -$43,295
As % of expenses 33.3% 2.7% 30.9% 16.2% -5.5%
Revenue composition info
Total revenue (unrestricted & restricted) $542,000 $550,662 $835,871 $480,838 $745,462
Total revenue, % change over prior year 30.1% 1.6% 51.8% 0.0% 55.0%
Program services revenue 0.0% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.2% 0.3% 0.4% 0.4% 2.0%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 99.8% 99.9% 99.6% 99.6% 98.0%
Other revenue 0.0% -0.1% 0.0% 0.0% 0.0%
Expense composition info
Total expenses before depreciation $406,500 $536,347 $638,555 $413,857 $788,757
Total expenses, % change over prior year 7.1% 31.9% 19.1% 0.0% 90.6%
Personnel 7.4% 0.0% 0.0% 0.0% 0.0%
Professional fees 0.3% 0.2% 0.0% 0.3% 0.2%
Occupancy 0.0% 0.0% 0.0% 0.0% 0.0%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 88.4% 97.9% 97.5% 98.7% 97.8%
All other expenses 3.9% 1.9% 2.5% 1.1% 2.0%
Full cost components (estimated) info 2018 2019 2020 2022 2023
Total expenses (after depreciation) $406,500 $536,347 $638,555 $413,857 $788,757
One month of savings $33,875 $44,696 $53,213 $34,488 $65,730
Debt principal payment $0 $41,042 $0 $669 $0
Fixed asset additions $0 $0 $0 $0 $0
Total full costs (estimated) $440,375 $622,085 $691,768 $449,014 $854,487

Capital structure indicators

Liquidity info 2018 2019 2020 2022 2023
Months of cash 22.0 16.2 17.3 19.2 9.5
Months of cash and investments 22.0 16.2 17.3 19.2 9.5
Months of estimated liquid unrestricted net assets 21.3 16.5 17.5 20.0 9.8
Balance sheet composition info 2018 2019 2020 2022 2023
Cash $746,155 $722,526 $919,462 $662,533 $626,585
Investments $0 $0 $0 $0 $0
Receivables $0 $0 $0 $0 $0
Gross land, buildings, equipment (LBE) $0 $0 $0 $0 $0
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 0.0% 0.0%
Liabilities (as a % of assets) 5.5% 0.1% 0.1% 0.0% 0.0%
Unrestricted net assets $0 $0 $0 $0 $0
Temporarily restricted net assets $0 $0 N/A N/A N/A
Permanently restricted net assets $0 $0 N/A N/A N/A
Total restricted net assets $0 $0 $0 $0 $0
Total net assets $720,993 $735,308 $932,624 $688,663 $645,368

Key data checks

Key data checks info 2018 2019 2020 2022 2023
Material data errors No No No No No

Operations

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

President

Ms. Teresa Colella

Registered Nurse; University of Wisconsin; Masters in Nursing - Parent-Child Division earned at University of Washington, Seattle. Parent of 4 children; one child has FSH Muscular Dystrophy. Currently works on a non-paid basis for the organization & a nurse part-time.

Vice President

Bradley Bagshaw

Brad is a trial lawyer, recently retired from the law and am now pursuing a life-long interest in writing. I have served on other not-for-profit boards, most recently as chair of the board of Crosscut Public Media up until its merger with KCTS Channel 9. \n\nMy interest in FSH research is personal — I have the disease

Number of employees

Source: IRS Form 990

Friends of FSH Research

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Friends of FSH Research

Board of directors
as of 01/21/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this 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? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

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

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

Disability