Director of National Fundraising Events

About the FSHD Society

The FSHD Society is the leading non-profit organization dedicated to accelerating the development of treatments and, ultimately, a cure for facioscapulohumeral muscular dystrophy (FSHD). Our mission is to serve as the hub for the FSHD community by fostering collaboration, empowering individuals and families affected by the disease, and driving innovative research. Through our global advocacy, education, and research initiatives, we strive to improve the lives of those impacted by FSHD while working towards a future free from its constraints. Over the last three decades, the work of the FSHD Society has accelerated major advancements in the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.

Job Overview

The Director of National Fundraising Events is responsible for leading and managing the strategy, planning, execution, and evaluation of fundraising events to support the mission and goals of the FSHD Society. This role involves working closely with volunteers, donors, and staff to ensure successful event outcomes, increase revenue, and enhance community engagement. The Director of National Fundraising Events will provide strategic direction, training, and support, ensuring the effective implementation of fundraising strategies and best practices and reports to the Chief Operating Officer.

Primary Responsibilities:

• Lead the Grassroots Fundraising team to plan, organize, and execute a diverse range of volunteer-led fundraising events, including walks, runs, and peer-to-peer fundraising initiatives.
• Drive the growth and success of peer-to-peer fundraising events, with a focus on our national flagship event, the Walk & Roll to Cure FSHD. Develop and implement innovative strategies to engage participants and optimize fundraising outcomes.
• Achieve a $1.5 million revenue goal in 2025 and develop and implement strategies to achieve double digit annual growth. Track performance metrics and analyze outcomes to optimize event success and improve future initiatives.
• Develop and oversee event budgets, timelines, and logistics to ensure successful and cost-effective execution while maintaining financial accountability.
• Identify opportunities for new fundraising events and initiatives while developing strategies to improve and expand existing events.
• Partner with internal teams and external stakeholders to ensure events align with organizational goals and are executed successfully.
• Work closely with other programs, including Volunteer Leadership, Chapter Management, Donor Development, Education, Advocacy and Research to identify and manage event volunteers, providing guidance and support to maximize their contributions and effectiveness, while maintaining a high volunteer retention rate
• Collaborate with the marketing team to develop and implement event promotion strategies, including public relations, social media, email marketing, and the creation and distribution of marketing materials.
• Build and maintain relationships with sponsors, donors, and community partners to secure sponsorships and donations for events. Identify and recruit corporate-level and national sponsors to expand revenue streams.
• Negotiate contracts and partnerships with vendors, sponsors, and service providers to secure best terms, ensuring cost-effective solutions for all fundraising events.
• Utilize fundraising software and databases (e.g., Salesforce) to manage event data, track donor engagement, and ensure accurate records.
• Ensure all fundraising events comply with relevant legal and regulatory requirements.

This position offers the flexibility to work remotely, with occasional travel required for events and in-person meetings.

This description provides a general overview of the role and its responsibilities. Duties may change based on business needs. We reserve the right to add or delete duties and responsibilities at the discretion of the supervisor and/or hiring authority.

Experience and Qualifications:

• Strategic thinker with 5+ years of experience in grassroots and peer-to-peer fundraising and event planning with a track record of program growth, increasing revenue and donor engagement.
• Experience with volunteer management or community engagement.
• Demonstrated experience in negotiating contracts, managing vendor relationships, and applying cost-saving strategies to ensure efficient use of resources.
• Excellent communication and leadership skills.
• Strong project management skills, with the ability to handle multiple events and projects simultaneously.
• Ability to build and sustain relationships with diverse stakeholders.
• Excellent written and oral communication skills, with the ability to create compelling event materials and convey complex ideas concisely.
• Demonstrated ability to recruit, train, and manage volunteers and event committees.
• Experience with fundraising software, CRM databases, social media platforms, and email marketing services.
• Willingness to work flexible hours, including evenings and weekends, as required.
• Ability to travel as needed.
• Bachelor’s degree in Nonprofit Management, Event Planning, or a related field.

Physical and Practical Demands

The physical demands described here are representative of those that must be met by an employee to successfully perform the essential functions of this job. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions.

Must be able to see and read fine print. Employee will have close visual contact with a computer monitor constantly.

Must be able to communicate utilizing a telephone.

Must be willing and able to learn all necessary computer functions.

While performing the duties of this job, the employee will sit for long periods of time and may use repetitive wrist and hand motions involved in sorting and handling documents. The employee is regularly required to reach, with hands and arms.

No phone calls, please.

The FSHD Society is an equal opportunity employer, which welcomes qualified applicants of all races, ethnicities, genders, and sexual orientations.