Director of Development, VHL Alliance

Department: Fundraising
Reports to: Executive Director
Wage Category: Salaried Position

 The VHL Alliance (VHLA) is a 501c3 non-profit organization founded in 1993 by three families with VHL to share experiences, learn from one another, support one another, and help the doctors understand and treat VHL and improve life for patients. Today, the VHL Alliance is the preeminent resource and clearinghouse of patients, caregivers, researchers, and the medical community. 

 Position Summary: The Director of Development handles all areas of development. Responsibilities include, but are not limited to, grant writing, major gifts, annual giving, planned giving, corporate and foundation relations, event management, public relations, and stewardship. The Director of Development works closely with members of the board and related committees.

 Essential Functions: The following is a list of essential functions, which may be subject to change without advance notice. Management may assign new duties, reassign existing duties, or eliminate a role. Responsibilities include but may not be limited to the following: 

Principal Duties And Responsibilities


  • Implement and execute an annual fundraising plan to meet fundraising goals. 
  • Manages the Fundraising committee and helps to actively engage them as effective partners in the solicitation, fundraising, and expansion of the donor pool. 
  • Leads fundraising initiatives, including strengthening and diversifying funding. 
  • Plans and leads efforts to identify, cultivate, and solicit major gifts from new and existing major donors with the Executive Director and key Board Members. 
  • Engaging board, volunteers, and staff in fundraising efforts. 
  • Planning and producing special fundraising events. 
  • Coordinating third-party fundraising and peer to peer campaigns. 
  • Traveling as appropriate to assigned regions to meet with prospects and donors and attend special events. 
  • Developing materials for use in cultivating, soliciting, and stewarding donors and prospects 
  • Communicating with current donors, including individual and corporate donors. 
  • Identifying, researching, and cultivating prospects. 
  • Developing, strengthening, and cultivating relationships with individuals, corporations, government agencies, and foundations. 
  • Creating fundraising proposals for individual, corporate, and event opportunities. 
  • Representing the organization publicly when Executive Director is unavailable. 
  • Meets with prospective donors and supporters on a continual basis to establish effective communications with them. 
  • Grows a major gifts program, including the identification, cultivation, and solicitation of major donors. 
  • Oversees grant seeking, including research, proposal writing, and reporting requirements.
  • Establishes the planned giving program with a focus on deferred gifts such as bequest expectancies. 
  • Directs the annual fund program, including mailings and annual fundraising drives. 
  • Directs capital campaigns and other major fundraising drives. 
  • Oversees fundraising database and tracking systems. 
  • Manages the creation of publications to support fundraising activities. 
  • Maintains gift recognition programs. 
  • Manages and develops the portfolio of donors. 
  • Prepares and presents regular reports on progress towards fundraising goals. 
  • Networks and maintains regular correspondence with donors. 


  • Acts as the point of contact for VHLA fundraising and volunteer efforts. 
  • Manages scheduling and keeps up with emails and other requests. 
  • Overseeing the maintenance of donor records and CRM. 
  • Works closely with the Executive Director and Board of Directors. 
  • Makes public appearances/accept speaking engagements to share information about the VHL Alliance with the community. 
  • Leads the Board Development Committee meetings. 
  • Performs other related duties as assigned.

Marketing and Communications 

  • Generates donor communications, newsletters, and annual report. 
  • Producing and posting content on social media platforms to keep patients, donors, board members, health professionals, and the VHLA communities informed of all events and services. 
  • Maintaining branding standards for the VHL Alliance – includes proofing and editing to ensure consistency and accuracy. 
  • Maintaining the VHLA Communications calendar. 
  • Overseeing the coordination, production, and mailing of monthly e-blasts and other pertinent communications with the VHL community. 
  • Managing social media accounts. 
  • Creating print marketing collateral for fundraising and awareness efforts. 


  • Assist with volunteer recruitment. 
  • Corresponding and connecting with the VHL community through social media, phone, email, etc. 
  • Supervising and coordinating interns for fundraising and marketing/communications, which includes:
    • Campaign creation for social media 
    • Research and prospecting 
    • Special events and fundraising 


  • Bachelor’s degree is required (Advanced Degree preferred). Certification in a relevant fundraising program is preferred. 
  • Must have a minimum of three to five years of fundraising experience and hands-on development experience (cultivation through solicitation and stewardship). 
  • Management or leadership experience with the ability to lead and direct others is preferred. 
  • Substantial professional experience, ideally in the non-profit or medical environment, with working with board members and donors and cultivating and soliciting gifts. 
  • Experience in proposal writing, including corporate sponsorships and foundation applications, is required. Knowledge of grant writing is required. 
  • Must be action-oriented, hard-working with an ability to make decisions in a changing environment; self-starting and self-motivating and ability to show results; customer-focused, dedicated to meeting and exceeding the expectations and requirements of internal and external customers. 
  • Exceptional written, verbal, and presentation skills with excellent attention to detail are required. 
  • Excellent communication, interpersonal, and relationship-building skills with a demonstrated record of achieving goals and outcomes. 
  • Able to exercise sound judgment and discretion in handling confidential information. 
  • Organizational, time-management, and problem-solving skills needed. 
  • Some knowledge of different CMS platforms and proficiency with donor management software is preferred. 
  • Must have event planning capabilities. 

More Information


Address: 1208 VFW Parkway, Ste. #303 Boston, MA 02128 

No phone calls please