FSHD Society

Lighting the Way to a Cure

aka FSH Society   |   Randolph, MA   |  www.fshdsociety.org

Mission

The FSHD Society is the world’s largest patient-driven organization for facioscapulohumeral muscular dystrophy, or FSHD, one of the most prevalent forms of muscular dystrophy. We are laser-focused on speeding the development of treatments and a cure for the nearly one million people worldwide who are affected. We do so by investing in research initiatives that will move us further faster; by activating and empowering patients, families and their allies; and by mobilizing resources from industry, government, and other organizations around the most efficient and effective strategy to speed up therapy development.

Notes from the nonprofit

The FSHD Society has funded more than $10 million in research initiatives that have propelled us into the era of treatment discovery and development. Our work has contributed to identifying the genetic mechanism of FSHD, development of animal models, validation of clinical trial endpoints, and early-stage drug discovery research. Other signature achievements include co-authorship of the 2001 MD CARE Act that mandated federal attention to all of the muscular dystrophies and led to the NIH-funded Wellstone Cooperative Centers for Muscular Dystrophy Research, the 2015 publication by the National Academy of Neurology of the first evidence-based FSHD care guideline, and the nationwide FSHD Clinical Trial Research Network in 2016, which now comprises 12 U.S. sites and 7 EU collaborating sites. In 2018, the Society launched a volunteer-led national chapter program, which now comprises more than 30 chapters.

Ruling year info

1992

President & CEO

Mark Stone

Main address

FSHD Society 75 North Main Street Suite 1073

Randolph, MA 02368 USA

Show more contact info

EIN

52-1762747

NTEE code info

Nerve, Muscle, Bone Research (H50)

Nerve, Muscle and Bone Diseases (G50)

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
Register now

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

What is FSHD?

Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. Typically beginning in early teenage years with the loss of muscles in the face (facio), shoulders (scapula), upper arms (humerus), legs or core, FSHD can spread to any muscle. Around 20 percent will need a wheelchair by age 50. Over 70 percent experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope.
Who is affected?

An estimated 1 in 8,000 individuals, or 870,000 people worldwide. FSHD strikes men, women, and children of all races and ethnicities. Ten percent develop symptoms before age 10. The condition is inherited and can affect many family members across generations. Some 30 percent of cases arise in families with no prior history. No individual or family is immune.

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?

Patient education and outreach

Patient Support, includes
- Monthly FSHD University webinars
- Monthly FSHD Society Radio program
- Monthly Wellness Hour
- Monthly Caregiver Hour
- 32 local chapters
- Biennial FSHD Connect international patient conference
- 12 biennial FSHD 360 regional meetings
- FSHD Advocate magazine (3x per year)
- Blog posts (2x per month)
- E-newsletter (2x per month)
- Individual phone, email, and in-person support by staff
- Peer-to-peer support

Population(s) Served
Families
Adults

Scientific Grants Program: Have awarded over $10 Million in FSHD-focused postdoctoral fellowships

Population(s) Served
Adults

Annual International Research Congress Sponsored by the FSHD Society: For researchers and clinicians worldwide involved with FSHD, a platform to discuss new developments in FSHD research, reinforce collaborative efforts and facilitate new initiatives

Population(s) Served
Adults

The World FSHD Alliance brings together patient advocacy organizations from around the world to work on a global strategy to accelerate therapy development while serving and empowering patients. The Alliance, currently comprising 24 groups and organizations from 19 countries, holds quarterly webinars and convenes and annual summit.

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Total number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, Chronically ill people

Related Program

Patient education and outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Conferences include annual International Research Congress, biennial FSHD Connect patient conference, FSHD Family Day conferences, and workshops.

Total dollars received in contributions

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Increasing

Context Notes

We have seen a significant growth trend over many years. In 2017 and 2019 there were spikes due to unusually large one-time gifts.

Estimated number of funding dollars secured for the sector

This metric is no longer tracked.
Totals By Year
Population(s) Served

People with physical disabilities, Chronically ill people

Related Program

Research grants and fellowships

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Estimated combined total of NIH, MDA, FSHD Society, and industry funding.

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2018, we held our larger conferences- the IRC & Connect. We had the ability to hold conferences in a virtual format once the pandemic hit, resulting in an increase of attendees in 2020.

Number of return website visitors

This metric is no longer tracked.
Totals By Year
Related Program

Patient education and outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We redeveloped our web server in 2017 so metrics for 2016 are not available. In 2019 we changed our name and launched a new website.

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 Promise
As long as we are here, no patient need ever face this disease alone. And with generous donations from patients, families, friends, major donors, and sponsors, the FSHD Society will keep working to accelerate research leading to treatments.

Our Mission
Find treatments and a cure for FSHD while empowering our families.

Our Core Values
Research | Community | Urgency

Accelerate research to expedite treatments and a cure
• Knowledge: Act as a driving force in the development of research directed toward treatment and a cure for Facioscapulohumeral muscular dystrophy.

Enlarge, engage, & empower an active community
• Empower: Mobilize patients and communities to take action
• Connect and Communicate: Serve as the leading source of information and support for all patients and families with FSHD.

Leverage & expand resources to support the Mission

Ensure organizational capacity to accomplish the Mission
• Finance: Grow and diversify revenues to invest in research, education, patient support, and operational capacity.

The FSHD Society has a network of scientists and researchers who specialize in FSHD. Guided by its world renowned Scientific Advisory Board, the Society's grants have led to key discoveries: the genetic origins of FSHD and its unique mechanism. We are now on the path to drug discovery that will lead to treatments and a cure of this disabling disease! To accomplish this we launched an initiative to accelerate therapeutic development by focusing on the reduction & elimination of obstacles inherent in FSHD clinical development and regulatory approval of promising therapies.

Additionally, one of the FSHD Society's key missions is to provide engagement & empowerment to a growing, active global community. This enables us to help FSHD patients, families and caregivers improve their quality of life, regain a sense of control, and avoid isolation. Our implementation of a Global Chapter & Affiliate initiative, utilizing volunteer directors in over 30 local areas, will continue this immeasurable service to accomplish our mission.

FSHD is becoming more recognized as one of the most prevalent hereditary progressive muscle disorders and affects one-half million people, both children and adults, worldwide. The prevalence of FSHD is stated to be 1:8,000 individuals

FSHD is an autosomal dominant disease that can affect entire family constellations. It is recognizable initially by muscle wasting and weakness in particular muscle groups e.g. (face – facio, shoulders -- scapula, and upper arms – humerus), and subsequently by atrophy and wasting in multiple muscle groups such as lower body, legs and torso and al skeletal muscles later in the disease). The disease has a high burden of disease and brings with it significant disability and even premature death in affected individuals. Due to FSHD Society funding progress is measurable by rapid advances in understanding the molecular genetics and cellular biology of FSHD have led to the identification of potential therapeutic targets.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Individuals affected by FSH muscular dystrophy, family members, and caregivers. Physicians and therapists involved in providing health care to people with FSHD. Academic research team members involved in FSHD research. Industry staff involved with research, medical affairs, patient engagement. Patient advocacy organizations. Regulatory agencies Funding organizations

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To identify unmet needs and opportunities for future development, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We created an advisory group on mental health and initiated programs to address our community's mental health needs. These include monthly virtual support group meetings, educational webinars, blog posts, social media posts, and regular articles in our magazine.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    It has made us an even more inclusive organization and brought more stakeholders into roles where they can shape programming and influence how we allocate resources.

  • Which of the following feedback practices does your organization routinely carry out?

    We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    We find it difficult to get feedback from the less engaged individuals,

Financials

FSHD Society
lock

Unlock financial insights by subscribing to our monthly plan.

Subscribe

Unlock nonprofit financial insights that will help you make more informed decisions. Try our 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.

Operations

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

lock

Connect with nonprofit leaders

Subscribe

Build 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.

lock

Connect with nonprofit leaders

Subscribe

Build 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.

FSHD Society

Board of directors
as of 10/15/2021
SOURCE: Self-reported by organization
Board chair

Mr. James Chin

UBS- Retired executive

Howard Chabner

Ellen Hannan

James Chin

Christine Ford

Amy Bekier

Frank Kolakowski

Stuart Lai

Linda Laurello

William Lewis III

Michelle MacKay

Marie Morell

George Pollock

Neil Solomon

Carden Wyckoff

Jack Gerblick

Bruce Ryskamp

David Rubin

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 4/20/2021,

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

Leadership

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/02/2021

GuideStar 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

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • 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.
  • We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.