925 Busse Road
Elk Grove Village
The Coordinator, Policy and Advocacy, plays an integral role in the day-to-day execution of Cure SMA’s public policy and advocacy efforts. Together with the Vice President of Policy and Advocacy, the coordinator will work closely with Cure SMA’s development, marketing and communications, and territory staff, as well as local chapter leaders, to ensure efficient, effective implementation of Cure SMA’s growing work in this area. The coordinator should be comfortable working with stakeholders in the government, non-profit, and community sectors.
· Assist with Cure SMA’s federal- and state-level grassroots advocacy in areas including newborn screening, insurance coverage and reimbursement, FDA engagement, health policy, and more.
· Develop targeted print and online advocacy communications, resources and tools to ensure effective advocacy by the SMA community.
· Work with Cure SMA leadership team, territory staff, and volunteer chapter leaders to identify, train and empower families for specific advocacy opportunities.
· Provide administrative and logistical support for grassroots advocacy and lobbying initiatives including but not limited to briefings, legislative visits and “action alerts.”
· Demonstrate knowledge and understanding of legislative and regulatory processes at federal and/or state level, in order to support Cure SMA’s efforts in these areas.
· Prepare quantitative and qualitative reporting on Cure SMA’s public policy and advocacy efforts for both internal and external parties.
· Work with Cure SMA’s development, marketing and communications team to integrate advocacy-related communications into Cure SMA’s broader communications strategy.
· Work with program staff across Cure SMA to ensure incorporation of advocacy as a core focus area for Cure SMA.
Knowledge Skills and Abilities:
· Bachelor’s degree in political science, communications or a related field.
· 1-3 years of relevant experience. Experience and interest in communications, policy and/or advocacy, particularly in public health and health policy.
· Strong, demonstrated experience and background with public policy, legislation or advocacy, including grassroots advocacy.
· Experience with online grassroots advocacy tools and/or web-based CMS preferred.
· Ability to utilize social media and other communications tools to engage grassroots advocates supporting Cure SMA policy and advocacy goals.
· Excellent verbal and written communication skills, organizational skills, research skills and analytical and problem-solving abilities.
· Strong time management skills and the ability to prioritize and consistently meet deadlines.
· Ability to multi-task and use good discretion and judgment, including working with potentially sensitive or confidential information.
· Ability to develop and maintain lasting, relationships with elected officials at state and/or federal levels as well as other business environments.
· Includes travel by plane, car, train
· Attendance at a one-week Annual Conference is required. Occasionally, additional travel may be required.
· Work is generally performed within an office environment with standard office equipment available.
Cure SMA leads the way to a world without spinal muscular atrophy, the number one genetic cause of death for infants. We fund and direct comprehensive research that drives breakthroughs in treatment and care, and we provide families the support they need for today.
Innovation, Balance, Collaboration, Respect, Compassion, Determination.
Elk Grove Village, IL
The work environment characteristics described here are representative of those an employee encounters while performing the essential functions of this job.
Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.
This position profile identifies the key responsibilities and expectations for performance. It cannot encompass all specific job tasks that an employee may be required to perform. Employees are required to follow any other job related instructions and perform job related duties as may be reasonably assigned by his/her supervisor.
Minimum Education Required