Executive Director

Neurofibromatosis Northeast

Job Description

Neurofibromatosis Northeast (NF Northeast) seeks a dynamic Executive Director who will take this beloved and vibrant nonprofit to its next level. The new leader will be replacing the founder of NF Northeast, who is retiring from the position.
About NF Northeast
NF Northeast brings hope to those affected by neurofibromatosis (NF) and allied disorders. It provides critical and lifelong support and understanding to families affected by NF, creates awareness about the disease, advocates for funding and policies, and promotes research and enhanced clinical care. Neurofibromatosis is a genetic disorder of the nervous system that causes tumors to form on the nerves anywhere in or on the body at any time. NF affects all races, all ethnic groups and both sexes equally, and affects approximately 130,000 people in the US, more people than cystic fibrosis and muscular dystrophy combined.
Patients and families are at the heart of NF Northeast. The organization was incorporated in 1988 by a group of people who were in some way affected by the genetic disorder, and families continue to be the energy and person-power behind the organization’s advocacy, awareness raising, and fundraising at its marathons, organized golf tournaments, walks and 5K runs, bike rides and dining events. 
NF Northeast connects families to each other, creating communities of support, provides scholarships to help students who have NF continue their education beyond high school, and sponsors children and teenagers who have NF to attend Camp New Friends, a welcoming and accepting safe haven.
Advocacy has become one of the most important ongoing programs of the organization, and since joining other NF organizations from around the country in 1996 to create the NF Advocacy Network, it has worked closely with members of the House and Senate to secure over $600 million for federally funded NF research.
NF Northeast’s office is in Burlington, MA and it employs two full-time staff members and two part-time staff members, one of which is based in New York. The Board of 12 members represent NF patients, family members/parents, and medical providers from the Northeast. It has an annual budget of $850,000 and is financially stable.

The Opportunity
The next Executive Director of NF Northeast will have the opportunity to lead a small yet critically important organization with a focus on deepening its fundraising reach and meeting the needs of even more patients and families. Priorities for the next Executive Director include:
  • Taking a strategic approach to fundraising. Fundraising events are the primary source of NF Northeast’s revenue and, while successful, expansion of donor, sponsor, and participant engagement is critical. A change in leadership calls for a systemic look at fundraising opportunities, funding diversification, donor cultivation, increasing corporate giving, the strategic management of events, and the development staffing and infrastructure needed to support it. 
  • Exploring the opportunity to serve more patients and families and expand services within the northeast region. NF Northeast is underpenetrated in most New England States, New York, Pennsylvania, and New Jersey, as well as rural areas not serviced by NF clinics. Greater NF clinician engagement to reach more patients in the existing service area and increasing its patient/family impact by facilitating improved clinician mentorship and education is needed.
  • Continuing advocacy efforts, regionally and nationally. NF Northeast has played a critical role in building the national advocacy effort and the federal appropriations for NF research. Continued advocacy for clinical trials testing drugs to treat NF’s symptoms and funding for research is critical.