The Program Services Manager will manage and expand the organization’s critical education and outreach program, CureDuchenne Cares. This professional will work with CureDuchenne’s partners and families toward the program goal of promoting the health and wellbeing of those with Duchenne muscular dystrophy across the country. Reporting directly to the Chief Executive Officer, he/she will work closely with the Director of Physical Therapy, the CureDuchenne Cares Program Director and the Community Engagement Manager.
Act as a point of contact for families that CureDuchenne Cares serves, perform outreach and encourage participation in the in-person family workshops. Develop strong working relationships with individuals/families, drug company sponsors and contributors
Travel approximately one weekend per month to CureDuchenne Cares workshops and regional Summits nationally
Provide opportunities for CureDuchenne families and their contacts to participate in CureDuchenne Cares events/programs
Help develop new CureDuchenne Cares programs and initiatives to benefit parents and individuals affected by Duchenne
Engage and mobilize Duchenne community through social media
Identify, cultivate and enhance sponsorship opportunities for the CureDuchenne Cares program
Participate in writing, editing and submitting corporate and community grant proposals to help sustain the CureDuchenne Cares program
In collaboration with the Director of Physical Therapy and Director of the CureDuchenne Cares program, plan the yearly CureDuchenne Cares event schedule
Manage all the details that go into planning these robust family educational and engagement workshops (event logistics, venue coordination, program materials, etc.)
Manage events on site to ensure each run smoothly
Develop strong networks within the local communities, develop and grow prospects for potential revenue streams, event sponsorships, and volunteer opportunities
Prepare and maintain accurate records/data to evaluate cost-effectiveness of CureDuchenne Cares program
Prepare reports and evaluate the program on an ongoing basis
Oversee the budget of the CureDuchenne Cares program
In collaboration with the Community Engagement Manager, develop and manage database of patients and families
In collaboration with the VP of Marketing and Operations, help oversee the communications and promotion plan for CureDuchenne Cares
All other duties as assigned
BA or BS degree or equivalent
3 to 5 years of prior related work experience, preferably in program or event management in a not-for-profit setting.
Develop workable plans, set expectations, monitor delegated activities and train, mentor, and inspire individuals. Establish and maintain collaborative relationships.
Excellent verbal and written communications skills, strong interpersonal and presentation skills required; ability to cold call, grow local contacts and build and nurture effective community relationships to increase CureDuchenne’s visibility, brand awareness, volunteer staff and revenue.
Detail oriented, adaptable, organized and demonstrated ability to successfully manage multiple projects and tasks. Must be able to read, comprehend and analyze financial goals and fundraising reports and generate required reports on a timely basis.
Excellent computer skills including Word, PowerPoint, Excel and Outlook.
Experience in grant writing preferred, but not required.
Must be able and willing to travel nationally and to work evenings and weekends as necessary.
Additional Salary Information: Based on experience
Duchenne is the most common and lethal muscle disease in children. One in every 3,500 male births results in a child being afflicted with the disease. Boys with Duchenne are usually diagnosed before the age of 5, in a wheelchair by age 12 and most don’t survive their mid-20s. The simplest of tasks become difficult, and in the later stages, heart and breathing muscles fail. Every day two boys die f...rom Duchenne. More than 24,000 boys are living with the disease in the United States alone and more than 300,000 worldwide. The disorder knows no ethnic, economic or social boundaries.