Director, Life Sciences Policy

MDA Overview:

At MDA, we believe our biggest asset is our combination of different backgrounds, cultures, and disciplines united to form one high-performing team. By bringing together people from different backgrounds, perspectives, and generations, we ensure that we all have access to the opportunities, relationships, and resources necessary to learn, grow and thrive. What we do starts with our people and the neuromuscular disease community we serve. As Americas largest voluntary health organization covering research, healthcare, and advocacy for people with neuromuscular diseases, MDA is leading the way in improving the quality of life for those living with muscular dystrophy, ALS, spinal muscular atrophy, and dozens of related disorders many first discovered and diagnosed by MDA supported scientists and clinicians.

Department Overview:

The Muscular Dystrophy Associations Public Policy and Advocacy Department serves the neuromuscular disease community through advocating for greater access to diagnoses and care, accelerated therapeutic development, and the removal of societal barriers in front of those with disabilities. The Department achieves these aims by creating opportunities for the neuromuscular disease community to advocate directly to policy decisionmakers through grassroots and grasstops advocacy.

Position Description:

The Director, Life Sciences Policy leads efforts on conceiving, enacting, and supporting the implementation of public policy proposals that facilitate basic and translational research as well as accelerate therapeutic development for the neuromuscular disease community. This position is responsible for working with colleagues across MDAs departments to ensure that all applicable research and therapeutic development efforts align with the organizations advocacy priorities. This role chiefly focuses on policies pertaining to basic and translational research and the development of diagnostics, treatments, and medical devices. The Director, Life Sciences Policy is required to represent MDA in multiple functions including, but not limited to, coalition efforts, meetings with policy makers, and other engagements to promote MDAs work to facilitate research and accelerate therapeutic development for the neuromuscular community. The Director, Life Sciences Policy reports directly to the Executive Vice President, Public Policy and Advocacy.

What youll do:

• Oversee the development and execution of public policies focused on basic and translational research as well as development and review of diagnostics, treatments, and medical devices in consultation with Public Policy and Advocacy Department leadership and colleagues.
• Inform the content of all outgoing advocacy communications pertaining to basic and translational research as well as accelerating therapeutic development.
• Collaborate closely with Advocacy Engagement colleagues and MDAs internal communications department.
• Craft innovative public policy interventions to facilitate research and accelerate therapeutic development for the entire neuromuscular disease community.
• Analyze proposed public policies pertaining to basic and translational research as well as therapeutic development and evaluate the potential effect they may have on the neuromuscular disease community.
• Proactively evaluate how existing and proposed research and therapeutic development policies can better address structural racial and socioeconomic inequities within the neuromuscular disease community.
• Collaborate with Advocacy Engagement staff to ensure all MDA website and social media materials pertaining to research and therapeutic development public policy is current and well-presented.
• Lobby Congress in support of, or opposition to, legislation that will impact the neuromuscular disease community.
• Co-administer an advocacy grants program that funds innovative advocacy initiatives important to the neuromuscular disease community.
• Collaborate with Advocacy team on periodic events, including Lobby Days.
• Direct public policy and advocacy efforts in the following policy areas:

• Basic and translational research (NIH funding, relevant NIH centers and institutes, Muscular Dystrophy Coordinating Committee, research policies and human subject protections, DoD research funding)
• Development of diagnostics and medical devices (genetic testing, lab-developed tests, humanitarian use devices, MDUFA)
• Development of innovative treatments (innovative trial designs, clinical outcome assessments, endpoints, controls, inclusion of expanded access and open-label extensions, etc.).
• Inclusion of patient community in drug development (patient-focused drug development, patient experience and perspective data, patient-focused programs, etc.)

• Lead engagement with relevant FDA divisions and offices and collaborative closely with FDA partners on innovative initiatives and partnerships to accelerate therapeutic development and review.
• Partner closely with relevant NIH centers and institutes on accelerating research in neuromuscular diseases.
• Track, evaluate, and prepare regular reports around research and therapeutic development policy and advocacy efforts in which MDA is engaged or monitoring to MDA staff and partners as required.
• Represent MDA at meetings, symposia, Congressional hearings, and other events as requested.
• Represent MDA in relevant coalitions pertaining to research and therapeutic development, including FDA and NIH funding, specific NIH institute activity, and more.
• Work closely with MDAs research, communications, marketing, care center, and other departments on an ongoing basis.
• Participate in speaking engagements and on panel opportunities as requested.
• Participate in MDA training, educational activities, and events.
• Forge collaborations with likeminded advocacy organizations to expand the reach of MDAs advocacy efforts.
• Perform other related duties as required and assigned.

What we are looking for:

• Bachelors degree required, with a minimum of 5 years of public policy and advocacy, or relevant, experience at the national level.
• At least two years experience working on public policies pertaining to research and therapeutic development required.
• Capitol Hill, federal agency, or similar non-profit experience strongly preferred.
• Proven experience in leading national level public policy and advocacy efforts focused on basic and translational research as well as accelerating development and review of innovative diagnostics, treatments, and medical devices.
• Ability to analyze proposed public policies and their potential impact on the neuromuscular disease community.
• Ability to synthesize complex information and communicate in an accessible format.
• Ability to coordinate with multiple stakeholders.
• Ability to direct multiple high-level tasks and initiatives in a fast-paced environment.
• Ability to work closely and compassionately with volunteer advocates from the neuromuscular disease community.
• Strong, consistent, proactive, and inclusive written and verbal communication skills.
• Strong computer skills, including Microsoft Office, and ability to use (or learn) advocacy software platforms and patient management platforms.
• Ability to communicate complex policy scenarios and the implications for the neuromuscular disease community.

MDA is an Equal Opportunity/Affirmative Action employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, national origin, disability, or protected veteran status.

MDA Benefits:

• For fulltime employees

• Medical, Dental and Vision insurance with prescription coverage
• Health Savings Account with contribution matching and Flexible Spending Accounts for medical and/or dependent care
• Paid sick leave
• Employee Assistance Program (EAP)
• 100% contribution towards basic life insurance, short-term and long-term disability
• Optional additional life insurance and dependent life insurance available
• 403(b) Retirement Savings Plan with company match
• Generous paid time off policy, with increasing accrual rate schedule
• 16 paid holidays
• Standard 35-hour work week with flexible hours
• Remote, work from home opportunities
• Professional Learning and Development opportunities, includingLeadershipskills
• Company sponsored Wellness Program