Myotonic Dystrophy Foundation

My Cause. My Cure.

Oakland, CA   |  https://www.myotonic.org

Mission

Our mission is to enhance the quality of life of people living with myotonic dystrophy (DM) and accelerate research focused on treatments and a cure.

Ruling year info

2007

Chief Executive Officer

Dr. Tanya Stevenson

Main address

663 Thirteenth Street, Suite 100

Oakland, CA 94612 USA

Show more contact info

EIN

20-5014628

NTEE code info

Nerve, Muscle and Bone Diseases (G50)

Nerve, Muscle, Bone Research (H50)

Public Foundations (T30)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Myotonic dystrophy (DM) is the most common form of the muscular dystrophies. According to some leading researchers’ estimates, as many as 1 in every 2,300 people globally are living with DM, many undiagnosed. Myotonic dystrophy is a highly variable, multi-systemic genetic disorder for which targeted treatments are still a number of years away, & no cure currently exists. DM disease impacts can range from serious cardiac & respiratory issues to significant & ongoing GI impairment, & permanent cognitive & emotional delays or deficiencies. Because DM is a genetic disorder, it has devastating impacts on entire families systems, often forcing many family members out of the workforce & permanently affecting family incomes, access to health insurance, & more. Because the disease is multi-systemic & highly variable, it is also difficult to diagnose; the typical time required for a DM1 diagnosis is 6 years; that number increases to 11 years for DM2.

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?

Cure Program

Research funding and advocacy. The Myotonic Dystrophy Foundation (MDF) has provided over $15M in funding to advance scientific discovery of the genetic mutation of myotonic dystrophy types 1 & 2, and to accelerate the search for therapies and a cure. Current work includes a multi-million dollar investment in gene editing technologies, comprehensive tools and infrastructure for clinical trials, and trial readiness. The Myotonic Dystrophy Foundation also continues its 10 year Fellowship program investing in pre and postdoctoral scientists engaged in myotonic dystrophy research. MDF also launched and maintains the Myotonic Dystrophy Family Registry, a web-based, patient-entered registry that is currently the 2nd largest globally.

Population(s) Served

When it comes to Care, the Myotonic Dystrophy Foundation (MDF) delivers a comprehensive array of Care resources that includes toolkits, guidelines, conferences and events, a comprehensive website, a live Warmline, support groups and much more. MDF’s goal is to anticipate and fulfill the Care needs of families living with DM.

Population(s) Served

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.

Number of conference attendees

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

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Myotonic Annual Conference is a community-focused event that brings together families, researchers, and other stakeholders from all over the world.

Total dollars received in contributions

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

No target populations selected

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Approximately 80 cents* of every dollar donated goes straight to funding research and providing resources to families living with DM. *based on 2019 audited financial statements.

Number of Facebook followers

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

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Myotonic's most popular and active social media channel. Community members are provided updates on the latest news and events as well as a space to network with each other.

Total number of audience members

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

No target populations selected

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The Myotonic community members who volunteer, donate, advocate, research and help fulfill our Care and a Cure mission

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 mission, "Care & a Cure," is to enhance the quality of life of people living with myotonic dystrophy (DM) & accelerate research focused on finding treatments & a cure. Every day, we focus on helping families living with myotonic dystrophy by delivering comprehensive support & resources, & driving research to accelerate the development of DM therapies.

The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients & families navigate the DM disease process, & is often the first resource contacted by newly-diagnosed patients, their families, their social workers & their physicians around the world. For many international patients, MDF is often the only resource they are able to locate, & MDF has provided assistance & support to families in over 70 countries as far-flung as Croatia, Jordan, Chile, New Zealand & Israel. Currently tens of thousands of people living with myotonic dystrophy, their families & friends make up our community.

Support & Education: Myotonic Dystrophy Foundation provides emotional support, education & resources to affected individuals & their families, & conducts outreach to raise awareness about DM worldwide. Resources & programs include: Toolkits and publications; phone support; comprehensive web resources; support groups & conferences.

Research: Myotonic Dystrophy Foundation is committed to advancing research & the search for therapies. Efforts include: Postdoctoral fellowships to expand the research base; managing the Myotonic Dystrophy Family Registry; Investing in target identification & drug screening; Supporting a clinical research network; determining the true prevalence of DM & documenting the socio-economic burden of the disease.

Advocate: Myotonic Dystrophy Foundation advocates for legislation, research, & infrastructure initiatives that will advance research, accelerate drug development, & improve diagnosis & care. We raise the visibility & understanding of myotonic dystrophy with Congress, federal & state agencies, medical professionals, & the media.

The Myotonic Dystrophy Foundation has assembled an expert group of exceptional people we call on each day to drive toward therapies & better quality of life for our community.

The Foundation's Board of Directors is comprised of leaders in science, finance, fundraising, advocacy & non-profit leadership. Their expertise helps develop our organizational strategy, assess our impact, & guide our pursuit of patient-relevant outcomes.

The Foundation's Scientific Advisory Committee is an international group of leading myotonic dystrophy specialists & researchers based in industry and academia. They help develop the research platform and strategy and provide guidance on research investment decisions.

The Foundation's staff, which includes a CEO, Program Director and other professional staff, leads the day-to-day operations of our organization & works with the board to set & execute our strategic agenda.

Myotonic Dystrophy Foundation serves more than 10,000 DM patients & family members worldwide every year. We have significantly improved care for patients & families by developing the first-ever international clinical care recommendations for DM1, DM2, congenital DM, cardiology & pulmonology. MDF worked with the U.S. Social Security Administration to improve access to disability benefits for people living with DM and had congenital DM classified under its Compassionate Allowance program.

Myotonic Dystrophy Foundation executed a $5 million, 3-year drug development acceleration effort to attract more industry investment, lower barriers to therapy development, & expand the amount of data available to drive discovery. We fund research fellows, clinical trial infrastructure projects & other key research & maintain one of the largest DM patient registries in the world. Myotonic Dystrophy Foundation successfully advocates for additional DM funding at several federal agencies & works with regulatory agencies to optimize the drug review & approval process.

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 shared information about our current feedback practices.
  • 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), 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,

  • What significant change resulted from feedback?

    Over the last two years, the Myotonic Dystrophy Foundation worked with focus groups and branding agencies to develop a fresh new look designed to eliminate any confusion between us and other rare disease organizations, as well as to increase recognition of our disease. The results led to the adoption of a new logo, color palette, and shorter name (simply “Myotonic”) in September of 2019. After hundreds of follow-up discussions, in May 2020 we launched a community-wide online survey, inviting the full community to participate and weigh in on the changes. While the survey results exhibited a clear preference for the new colors and new logo, they also revealed a strong preference to return to our original name: Myotonic Dystrophy Foundation. Therefore we have returned to our original name.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, It is difficult to reach some segments of our community and online methods are not always inclusive.,

Financials

Myotonic Dystrophy Foundation
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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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Myotonic Dystrophy Foundation

Board of directors
as of 8/21/2020
SOURCE: Self-reported by organization
Board chair

Mr. Jeremy Kelly

David Berman

Martha Montag Brown

John Fitzpatrick

Elizabeth Florence

David Herbert

Joel Revill

John Day, MD, PhD

Stanford University

Charles Thornton, MD

University of Rochester

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 ? 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 05/14/2020

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