The Director of Policy and Advocacy plays a leadership role in creating and advancing federal and state policy. The Director of Policy and Advocacy has the responsibility of developing and implementing new strategies that support the growing advocacy portfolio at Cure SMA with state and federal agencies. The Director will serve as a member of the Extended Leadership Team which is a consultative body of senior and middle management, and participate in Cure SMA’s Board meetings for briefings.
Responsible for Cure SMA’s organizational strategy for policy and advocacy and policy-related programming, in close collaboration with the Director of Marketing & Communications, Director of Business Development, Medical Director, and Chief Scientific Officer.
Lead the process to develop and maintain a formal posture for Cure SMA federal and state public policy plan on issues including but not limited to medical research funding and healthcare access issues.
Collaborate with Cure SMA leadership and program staff to determine organizational advocacy and policy priorities.
Serves an internal thought leader on legislative matters and strategic decisions making.
Lead the development of annual work planning, design, implementation, and reporting related to policy and advocacy technical activities.
Conceptualize and provides leadership support for technical activities in policy, advocacy, and other related areas.
Responsible for strengthening Cure SMA’s presence on Capitol Hill.
Responsible for strengthening working relationship with key thought leaders and policymaker, including but not limited to those in Congress, the Administration, trade associations, think tanks and relative coalitions.
Prepare Cure SMA policy analyses, recommendations, policy briefs, and assessments for Cure SMA programs.
Prepare and supervise the dissemination of policy briefs and policy communication materials to audiences at the national and state levels.
Participate in the preparation of bids and proposals in response to government, foundation or other donor solicitation.
Work with program staff across Cure SMA to ensure incorporation of advocacy as a cross-cutting and one of the core focus areas of Cure SMA.
Ensure policy and advocacy is fully integrated with program and fundraising activities.
Represent the Policy and Advocacy Unit at Cure SMA Board meetings to keep Board members engaged and active.
Represent Cure SMA in Washington, DC as a strong voice for SMA research and patient care services. Expand and share professional relationships with strategic partners.
Oversee an integrated public policy program that monitors and responds to current and emerging trends in US legislative and regulatory actions that affect SMA research and patient care policies.
Oversees state legislative activities, communications with grassroots constituency and contribute legislative information to website and other communication vehicles, such as national newsletter and annual report.
Inform and support decision makers within Cure SMA on legislative issues and interpret how changes in U.S. policy will affect Cure SMA and its staff.
Support outreach events to highlight our field advocacy work to the DC policy audience which may include public speaking.
Interact with Congress and federal agencies such as FDA, NIH, (etc.) to advance promote treatments and patient and family focused policies.
Complement the efforts of the Senior Leadership team to establish robust communication among other organizations to ensure an informed and coordinated response to policies, and an increased engagement in advocacy.
Performs other related duties and responsibilities as assigned.
Knowledge Skills and Abilities:
Bachelor’s degree public health, public administration, public policy or related field required, Master’s Degree preferred.
Experience in disease based advocacy required.
At least eight years of experience working in advocacy and public policy, preferably in disease based organization.
Experience working with the FDA, NIH, Congress (and other relevant agencies/departments).
Experience in translating stories from the field for use in U.S. advocacy.
Sound judgment, attention to detail, and the ability to work independently.
Strong interpersonal and networking skills.
Excellent analytical, writing, and public speaking skills.
Demonstrated strength and experience providing technical assistance, writing technical reports, and policy briefs targeted to decision makers.
Proven ability to work collaboratively and build consensus across diverse sets of stakeholders.
Experience in donor relationship management, reporting, program work planning.
Ability to multi-task effectively, including having strong planning and organizing skills and the ability to work well under pressure.
A successful candidate would bring existing, professional, high-level contacts, and new constituents to Cure SMA, and possess the strategic vision and prominence to elevate Cure SMA’s profile not only as an advocacy player, but also as a valuable resource to the SMA community.
Cure SMA is a 501 (c)(3) organization dedicated to the treatment and cure of spinal muscular atrophy (SMA), a disease that takes away a person's ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
Cure SMA is committed to the principle of equal employment opportunity. Applicants for employment and employees are reviewed on their individual qualifications ...for a position. Under no circumstances will Cure SMA discriminate against qualified persons on the basis of race, color, religious creed, retaliation, national origin, ancestry, sexual orientation, gender, gender identity/expression, disability, mental illness, genetics, choice of health insurance, marital status, age, veteran status, or any other basis prohibited under applicable law.