Executive Director, Neurofibromatosis Northeast

Overview

Location: Burlington, Massachusetts

Neurofibromatosis Northeast (NF Northeast) seeks a dynamic and passionate Executive Director who will take this 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 2 full-time staff members and 4 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 MA, CT and NY. 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 beloved organization that has the opportunity to expand geographically, deepen its focus, and meet the needs of even more patients and families. High priorities for the Executive Director include:

• 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. This may involve 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.
• Taking a strategic approach to fundraising. Fundraising events are the primary source of NF Northeast’s revenue and, while successful, it raises concern about donor and participant fatigue. Likewise, an aging donor base that is closely aligned with the founder is a reality. Expansion in the Northeast is an opportunity to hold events elsewhere and with new participants and donors. 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.
• Further investing in and developing patient support. NFNE enjoys a much-deserved reputation for superior patient support among patients, families, clinicians and peer organizations who are engaged with and familiar with the organization. With the departure of the founding and much-loved Executive Director who played a primary role in direct family and patient engagement, NF Northeast will need to assess and determine how support services are provided.
• Continuing advocacy efforts, regionally and nationally. NF Northeast played a critical role in building the national advocacy effort, and the federal appropriations for NF research --as a result of these actions--are significant. Clinical trials testing drugs to treat NF’s symptoms are now underway. Funding comes from the National Institutes of Health and the Department of Defense. The Department of Defense funding needs to be justified every year and without efforts of patient advocates, it could be lost. NF Northeast’s strength to leverage the NF community is a critical factor.

Qualifications

The NF Northeast Board of Directors is seeking an experienced nonprofit leader who can demonstrate the ability to meet the needs of many constituents in warm and compelling ways. Ideal applicants will have:

• Working knowledge and understanding of neurofibromatosis and/or rare disorders. Direct experience with the disease would be ideal, but is not required;

• The ability to think strategically about resource development, with demonstrated experience and success with securing funding from multiple sources, including individual donors;

• Experience in working effectively and collaboratively with a wide range of people and organizations, such as patients and their families, staff, the Board of Directors, funders and sponsors, the medical provider/research community, and policymakers and legislators;

• Excellent communication skills: writing, outgoing presentation, verbal and listening, and the passion and presence to be a primary spokesperson for the NF community;

• An outgoing personality, and proven and authentic warmth and empathy for others;

• An understanding of sound nonprofit business and financial practices, relevant computer applications, and experience in growing an organization;

• At least five years of demonstrated leadership experience, with confidence to supervise and delegate to professional staff and volunteers (in office and remotely); and

• A passion to work hard as a self-starter.

Candidate Guidelines

This executive search is being conducted by TSNE MissionWorks with Transition Consultant Nancy Jackson and Jodi Dowling, TSNE Manager of Executive Search and Recruitment. All submissions will be acknowledged and are confidential. Electronic submissions sent through this link are preferred. All submissions are confidential within the search committee.

Candidates should include a resume and a cover letter that describes how their qualifications and experience match the needs and mission of NF Northeast along with salary expectations and how they learned of the position. Applications will be accepted until the position has been filled.

Salary is commensurate with experience within the framework of the organization’s annual operating budget.

NF Northeast is an Equal Employment Opportunity employer and actively seeks a diverse pool of candidates.