Director of Research and Scientific Programs

About Myasthenia Gravis Foundation of America (MGFA)

Since its founding in 1952, the Myasthenia Gravis Foundation of America (MGFA) has led efforts to support the most promising science in myasthenia gravis (MG). The Foundation funds groundbreaking research, engages emerging scientists and clinicians, and builds the evidence base needed to improve diagnosis, treatment, and quality of life for people living with MG. This work has helped advance a rapidly evolving therapeutic landscape that has produced seven FDA-approved targeted therapies for patients in the past eight years.

 

As MGFA approaches its 75th anniversary in 2027, the Foundation is evolving its research agenda to address persistent gaps, including diagnostic delays, limited real-world evidence across newer therapies, and a clinician and advocate pipeline that has not kept pace with the field. MGFA holds a distinctive position within the MG community, working across therapies, specialties, and every stage of the patient journey. The Director of Research and Scientific Programs will help the Foundation translate that position into rigorous research investments, practical scientific programs, and meaningful results for patients and providers.

 

Position Summary

The Director of Research and Scientific Programs will lead MGFA's portfolio of strategic research initiatives and oversee the strategy and day-to-day execution of the Foundation's research grantmaking. This position carries a dual mandate: to build and manage programs that strengthen the next generation of MG clinicians and translate complex science into useful guidance for patients and providers, while also operating a rigorous, well-governed grantmaking process that directs MGFA's research investments toward the field's highest-priority unmet needs.

 

Reporting to the Vice President of Research and Clinical Development, the Director will work closely with MGFA's Scientific Advisory Board and colleagues across Development, Communications, Programs, Operations, and Finance. The successful candidate will combine strategic judgment with hands-on execution, quickly grasp complex issues, communicate credibly with diverse audiences, and advance multiple initiatives without requiring close supervision. Strong executive presence, emotional intelligence, technological fluency, and a collaborative, low-ego approach will be essential in MGFA's flat and highly cross-functional environment.

 

Success in the first year will include delivering the MG Emerging Leaders convening, Clinician Education and Guidance Toolkit, and State of the MG Patient Report on schedule while fully meeting sponsor commitments; establishing a documented and repeatable grant cycle with reviewers secured well ahead of funding decisions; creating a clear and current record of MGFA-funded research, outcomes, and publications for Board and donor reporting; and becoming a responsive, reliable partner to teams across the organization.

 

 Position Duties and Responsibilities

Strategic Research Initiative Leadership

• Serve as the internal program lead for MGFA's active portfolio of research and scientific initiatives, providing strategic direction, detailed project management, and quality control.
• Lead the MG Emerging Leaders Program, including planning and executing the annual convening during MG Awareness Month in June that connects established MG leaders with early-career and community neurologists, industry representatives, and patients.
• Oversee development of the Emerging Leaders Tool Kit, Treatment Chart and Trial document, related MGFA materials, and the associated Emerging Leaders webinar series.
• Direct development of the MG Clinician Education and Guidance Toolkit and other plain-language resources for frontline providers, including the treatment chart and provider dashboard, the twice-yearly physician and clinician survey program, and the validated shared decision-making aid.
• Lead the State of the MG Patient Program, including the qualitative research that produces the annual State of the MG Patient Report and the underlying national patient data set developed through surveys, panels, and interviews capturing patient priorities and therapy gaps.
• Own each program's content, timeline, and quality, and partner with Development to ensure sponsor and partner benefits - including recognition, webinars, published materials, and conference presence - are delivered fully and on schedule.
• Establish meaningful measures of program outcomes and impact, and report progress to the Vice President of Research and Clinical Development, executive leadership, and the Board of Directors.

 

Grant Strategy and Implementation

• Lead the end-to-end strategy and administration of MGFA's research grant portfolio across funding cycles, from setting priorities and issuing opportunities through award closeout.
• Develop and issue requests for applications, manage the review calendar, and administer the grants budget in partnership with Operations and Finance.
• Recruit and manage a broad, specialty-diverse pool of external reviewers and the Scientific Review Committee, accounting for conflicts of interest, subspecialty alignment, and availability.
• Prepare reviewer invitations and supporting materials that clearly define the required expertise, responsibilities, timeline, and availability.
• Direct the peer-review process, including application distribution, scoring, deliberations, and documentation, and ensure funding recommendations are timely and defensible to the Board and donors.
• Manage post-award grantee relationships, including progress reporting, milestone and budget tracking, no-cost extensions, renewal decisions, and award closeout.
• Maintain a complete and current record of MGFA-funded research, outcomes, resulting publications, and other evidence of impact for use in donor, leadership, and Board reporting.
• Continuously evaluate funding priorities against unmet needs in the field - including seronegative MG, pediatric MG, and real-world evidence across newer targeted therapies - in partnership with the Vice President of Research and Clinical Development and the Scientific Advisory Board.

 

Cross-Functional Collaboration and External Representation

• Partner with Development to translate research programs into compelling, fundable partner opportunities and to steward current research-program sponsors.
• Partner with Communications to disseminate program materials, survey findings, scientific updates, and reports to clinicians, patients, donors, and the broader MG community.
• Partner with Programs to connect clinician-facing and research-facing materials with patient resources and support services.
• Build trusted relationships across MGFA and contribute as a responsive, solutions-oriented partner on initiatives that intersect with research and scientific programs.
• Represent MGFA's research portfolio with academic investigators, clinicians, industry partners, sponsors, patients, and other stakeholders, including at MGFA events and field conferences.
• Translate complex scientific information into clear, audience-appropriate messages while representing MGFA as a credible, patient-centered, and neutral voice across the full range of MG therapies.

 

Candidate Qualifications

Required Qualifications

• Advanced degree in life sciences, public health, or a related field, such as a PhD, MPH, or MS; an equivalent combination of education and relevant professional experience may be considered.
• Seven or more years of experience managing scientific or research programs and grant portfolios in a nonprofit, foundation, medical society, patient advocacy organization, or academic research-administration setting.
• Direct experience designing and administering a competitive grant or fellowship program, including reviewer recruitment and management and a peer-review process.
• Demonstrated ability to manage multiple complex, concurrent initiatives against firm external deadlines, including convenings, publications, funding cycles, and sponsor commitments.
• Experience leading multi-stakeholder initiatives involving corporate, industry, or philanthropic partners and fulfilling associated sponsor deliverables.
• Excellent written and verbal communication skills, including the ability to translate complex scientific information for patients, clinicians, donors, Board members, and other audiences.
• Strong executive presence, judgment, emotional intelligence, and relationship-building skills, with the ability to represent the organization credibly and professionally.
• A self-directed, hands-on approach and the ability to move comfortably between strategy and execution in a flat, collaborative organization.
• Proficiency with contemporary technology and a willingness to use evolving digital and AI-enabled tools responsibly to strengthen program execution, collaboration, and analysis.
• Ability and willingness to travel approximately 20 percent.

 

Preferred Qualifications

• Experience in neuromuscular disease, neurology, rare disease, autoimmune disease research, or patient advocacy.
• Familiarity with patient-reported outcome measures and real-world evidence study design.
• Experience working with or staffing a Scientific Advisory Board or comparable expert review body.
• Experience working effectively with limited direct authority across highly collaborative, cross-functional teams; prior people-management experience is valued but not required.
• A patient-first orientation and a collaborative, low-ego working style, with the maturity to own a critical part of a broader organizational strategy.

 

POLICY ON PLACEMENT AND RECRUITING

The Batten Group and Myasthenia Gravis Foundation of America are equal-opportunity employers committed to the principles of non-discrimination in the workplace. Candidates will not be discriminated against on the basis of age, race, creed, color, religion, sex, sexual orientation, gender identity or expression, national origin, disability, marital status, veteran status, genetic information, or any other basis prohibited by federal, state, or local law.