Program Director

Posted by

Myotonic Dystrophy Foundation

Published 6 days ago

January 4, 2021
January 1, 2021
$90,000 - $120,000

The Myotonic Dystrophy Foundation announces the search for a new Program Director to lead and oversee the organization’s patient support and education initiatives – the “Care” component of MDF’s “Care and a Cure” mission.

Myotonic dystrophy (DM) is the most common form of the muscular dystrophies. According to leading researchers’ estimates, as many as 1 in every 2,300 people globally are living with DM, most undiagnosed. Myotonic dystrophy is a highly variable, multi-systemic genetic disorder for which no therapy or cure currently exists.

Launched in 2007 by a deeply committed Board of Directors, the Myotonic Dystrophy Foundation (MDF; is a small, nimble and entrepreneurial organization devoted to accelerating research efforts focused on the search for treatments and a cure for DM and enhancing the quality of life of people living with the disease. The organization has a track record of incredible success in growing the drug development pipeline, research, advocacy, patient care, and fundraising.

In the last decade, dramatic and exciting changes in the research, treatment and drug approval pipeline for rare diseases, including DM, have occurred. The Foundation’s work is now at a “tipping point” with respect to therapy development, visibility, and global reach. The MDF Board and leadership believe the organization is poised to benefit tremendously from growing industry interest, additional federal and private research funding, medical advances, and an enormous dedicated international community of patients, families and friends, donors, researchers and advocates.

MDF has a passionate staff and is based in Oakland’s Preservation Park, although we are all currently working from home due to COVID-19 Shelter-in-Place restrictions. The position reports to the CEO. The position is full-time and offers a competitive salary and benefits package. The Program Director provides leadership and oversight for the organization’s patient support and education initiatives – the “Care” component of MDF’s “Care and a Cure” mission. Care initiatives range from the development of high-level strategic programs such as peer-reviewed consensus-based recommendations for clinicians treating people living with DM to more focused toolkits, support groups, webinars, conference programs, regional outreach and education, and other programs serving the community at large as well as targeted constituents.

§  Leadership. Lead assessment, strategy development and definition of a comprehensive Care platform that includes community infrastructure, education, resources and support.

§  Program development. Research, design and implement MDF programs focused on meeting the needs of people and families living with myotonic dystrophy (DM) while managing the resources required, timeframe for building, planning of the launch and the metrics and evaluation components.

§  Stakeholder engagement. Identify and build relationships with key stakeholders in the DM care space, including community members (those living with DM and their families/caregivers), domestic and international clinicians, researchers, industry partners, nurse practitioners, and other support professionals.

§  Strategic partnerships. Establish relationships and partnerships with related patient advocacy, rare disease, governmental and other stakeholder groups.

§  Internal collaboration. Coordinate with other MDF staff and consultants, including Chief Science/Medical Officer, Development Director, communications team, and public policy consultants to influence key cross-platform programs, including advocacy, communications, fundraising and community volunteer programs.

§  Evaluation. Develop tracking metrics and systems that ensure the efficacy of Care programs and projects and provide quarterly reports to the CEO and Board.

§  MD expert collaboration. Coordinate with the Scientific Advisory Committee of MDF and other expert resources to ensure current content for Care programs. Serve as programmatic liaison on MDF Care-related issues, opportunities with external partners.

§  Annual conference. Lead development and execution of MDF Annual Conference with support of event manager and MDF team. This may be virtual or in person or a hybrid.

§  Administration. Work comprehensively with MDF internal programs, software (Salesforce, Mailchimp, etc.) and cloud infrastructure to track projects, contacts and communication, ensuring that timelines and other project parameters are on track.

§  Patient interface. Communicate with and engage community members through the MDF Warmline and other communications channels, and help build and maintain an empathic and knowledgeable face and voice for MDF in the DM community.

§  Communications. Identify and/or create Care-related content for MDF communications opportunities, including website, Facebook page, Twitter feed, newsletters, PowerPoint presentations and other communication. As needed provide content for newsletters, grant requests, board and other related communications effort.


§  Bachelor’s degree required. LCSW/MSW or RN or MPH degrees preferred.

§  Minimum of 5 years of broad experience in managing and developing patient support and education programs.

§  Knowledge and understanding of practice parameters and certification programs for clinics.

§  Experience in working with scientific advisory and/or medical advisory Boards.

§  Strong communications/writing skills with both internal and external constituencies.

§ Ability to persuade and motivate others, command the respect and attention of the leadership and influential volunteers.

§ Experience organizing small and large events, both in-person and remote. 

§ Experience developing and/or editing patient-facing documents, guidelines, and toolkits.

§  Is both proactive and operational; can initiate new ideas/relationships while keeping pace with a fast-moving organization.

§  Ability to work well under pressure and adapt easily to changing situations and priorities. Good judgment and consensus building skills.

§  Salesforce experience preferred.

The Myotonic Dystrophy Foundation announces the search for a new Program Director to lead and oversee the organization’s patient support and education initiatives – the “Care” component of MDF’s “Care and a Cure” mission.

Myotonic dystrophy (DM…

Details at a glance

  • On-site Location
  • Full Time Schedule
  • 4-Year Degree Required
  • Managerial


Medical, dental, vision, partial 401k match, and more!

Medical, dental, vision, partial 401k match, and more!


663 13th Street, Suite 100, Oakland, CA 94612

Apply to This Job

All fields are required
Resume must be uploaded in PDF format
Drag file here or browse
No file chosen
Drag file here or browse
No file chosen
By using the Idealist Application system, you consent to sharing your resume and other personal data with potential employers in accordance with Idealist’s Privacy Policy and Terms of Service.

Join Idealist

Sign up today to save your favorite jobs and get email alerts when new ones are posted.