Tuberous Sclerosis Alliance
Silver Spring, Maryland
Director of Donor Relations
The Tuberous Sclerosis Alliance (TS Alliance) is dedicated to finding a cure for tuberous sclerosis complex (TSC)
while improving the lives of those affected. Tuberous sclerosis complex is a genetic disorder that causes tumors to
form on vital organs and is the leading genetic cause of epilepsy and autism. We are the only organization able to rally
the financial resources, the research, the partnerships, and the sheer will of TSC-affected families and individuals to
break the back of this "linchpin" disease. With an annual budget of $3.5 million, we focus our resources on research as
well as information and advocacy to individuals and families living with TSC. The focus for the coming 12 months is
as follows:
The TS Alliance will marshal the resources to champion the next decade of scientific breakthroughs and provide
community services that improve the quality of life for those affected by TSC.
• Implement initiatives that accelerate basic, translational and clinical research while optimizing the use of TS
Alliance resources and partnerships.
• Identify more individuals impacted by TSC in order to provide a better quality of life to a larger number of
individuals.
• Facilitate more interaction among the TSC community, including the board and staff of the TS Alliance.
• Expand, strengthen and diversify the base of financial support for TSC research and the TS Alliance from both
private and public sources.
Across the nation, there are currently 32 volunteer branches of our organization, called community alliances, which
raise a collective 44-50% of the budget through special events. One major goal for the Development Department is to
diversify our revenue sources of funding, particularly with growth through major donors and grants. While revenue
growth is vital, we are also mindful of maintaining appropriate fundraising ratios and as an organization, prudent about
staying within or below budgets for fundraising expenses.
We are also in the midst of a major three year theme-based campaign, Unlock the Cure, to raise significant funds for
emerging and important research. This must be conducted without jeopardizing our general operating funds needed to
keep the doors open and to continue important services.
The Director of Donor Relations directs programs which will enhance and promote the future strategic growth, and
advancement of the TS Alliance and TS Alliance Endowment Fund. These programs, targeted at individual gifts and
grants, will increase awareness, positive image and financial support from the TS Alliance constituency and the
community at large.
ORGANIZATIONAL STRUCTURE AND INTERFACES
Reports to:
Primary Interfaces (internal):
Primary Interfaces (external):
Chief Executive Officer (CEO)
CEO, Controller, Chief Scientific Officer (CSO), Senior Director of Marketing &
Communications, Director of Special Events and Corporate Partnerships
Major donors, foundations, board of directors, vendors, volunteers
DIRECT REPORTS
Donor Relations staff (both paid and volunteers)
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Database Project Manger
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Development Associate
Activities of the development committee of the TS Alliance Board of Directors.
Fund raising activities of the TS Alliance Endowment Board.
SUCCESS FACTORS
Success Factor #1 – Establish the Donor Relations Department. During the first 30 days, meet with team members
and evaluate strengths and strategies for implementing strategic organizational and departmental objectives. Establish
infrastructure for monthly reporting and evaluating results. Direct and work with the donor relations staff to ensure
timely and acknowledgement of all non-event gifts and appeals. Assist the board’s development committee
chairperson in preparing agendas and reports and serve as staff liaison.
Success Factor #2 – Evaluate and validate major donor profiles utilizing Researcher’s Edge. Within 60 days,
research, review and validate top 25 major donors and prospects. Over the course of the first 90 days and thereafter,
develop fundraising portfolios and make assignments for Director of Donor Relations, CEO, CSO, board and
Development Associate for cultivation and stewardship.
Success Factor #3 – Implement board stewardship program. A stewardship plan was developed in 2010. During
the first 60 days, review the plan and implement strategies that include the following elements:
 Encourages friend-raising and provides confidence to cultivate personal contacts.
 Adequate tools and support for the board to cultivate long-term relationships with donors and potential donors.
 Encourages 100% board giving and works with the chair on individual ask or by letter ask for 100% board giving
at various levels.
 Acknowledgement system that involves the board in stewardship for major donors as well as volunteers.
 Proper materials and support to involve them in the acknowledgement process.
Success Factor #4 – Continue implementation of Unlock the Cure Campaign to raise significant research
funding while focusing funds from appeals, members and other major donors on operating. Within 60 days,
assume management of the Unlock the Cure Campaign once educated and knowledgeable about programs. Reenergize Campaign Committee members, develop next round of target prospect list, set appropriate numerical targets,
facilitate privately hosted donor dinners, provide appropriate solicitation materials, track results and report to donors
and prospective donors.
For general operating activities, work with development staff on an 18-month calendar to track activities and maintain
timeline during the first 30 days.
Success Factor #5 – Growth of grants program. Within first 30 days, meet with CEO, CSO and key staff to
evaluate current grants and potential for future growth. Review corporate/foundation donor files to create a plan for
grant solicitation. Within 60 days, coordinate with the Senior Director of Communications and key staff to create
standardized templates for general operating requests, educational advocacy, Community Alliance educational
meetings, Community Alliance Volunteer Training and Research Program. Within 90 days, create list of new potential
corporate and foundation prospects from Foundation Director and Corporate Giving online through the Foundation
Center.
Success Factor #6 - Develop and implement a comprehensive planned giving program to foster the growth of
the Endowment that includes: donor identification, cultivation and gift solicitation, oversight of donor
stewardship and recognition activities, and the organization of seminars as well as preparation of planned gift
annuity agreements. Within 180 days, assume responsibility for this program and coordinate with appropriate staff
and/or counsel on planned gift arrangements and execution of PG Calc Software. Engage the CEO and members of
the Endowment Board as appropriate in the cultivation, solicitation and acknowledgement of special donors.
MAJOR FUNCTIONS:
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Assist in the overall strategic planning and managing of the organization's strategic development initiatives and
annual giving programs.
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Actively identify, cultivate, solicit and steward individual major donors, foundations and non-event corporate
partners while establishing and maintaining ongoing professional relationships with gift prospects and benefactors
thereby securing financial support for the organization.
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Direct and work with the donor relations staff to ensure timely and acknowledgement of all gifts and appeals.
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Coordinate with the Senior Director of Marketing & Communications on a variety of projects including, but not
limited to, creation of standardized development tools/proposals, public and media relations, product development,
marketing, promotion, grants, brochures, e-mail blasts and direct mail pieces.
RESPONSIBILITIES:
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Develop both long and short range strategic/operational plans to strengthen and grow the TS Alliance strategic
development program.
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Direct and implement annual giving plan including direct mail, membership, major donors, grants, federated
funding, memorials/honorariums, and TS Alliance merchandise sales.
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Develop and implement a comprehensive planned giving program to foster the growth of the Endowment that
includes: donor identification, cultivation and gift solicitation, oversight of donor stewardship and recognition
activities, and the organization of seminars or other events to attract prospects. Coordinate with appropriate staff
and/or counsel on planned gift arrangements.
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Engage the CEO and members of the TS Alliance and Endowment boards as appropriate in the cultivation,
solicitation and acknowledgement of special donors.
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Research and manage prospect lists, assist volunteers with relationship building, solicitation planning and followup.
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Oversee donor relations staff and provide leadership to the overall development efforts of the organization.
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Serve as primary liaison to development committee chairperson and work with them to prepare organizational
goals, meeting agendas, scheduling quarterly review of development results and preparing all relevant schedules
and materials as well as serve as staff liaison to board committees as assigned.
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Represent the organization at special events, community alliance meetings, and other public functions.
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Enhance professional growth and competence through study and participation in conferences, workshops and
professional related organizations.
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Supervise the creation, updating and managing of all records relating to non-event corporate, foundation and
individual donations that meet all organizational and regulatory requirements.
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Attend administrative meetings as required.
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Act as a team player and communicate donor relations information within the organization.
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Maintain positive relationships with volunteers, colleagues, board members and other constituents.
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Perform other duties as directed.
CORE VALUES:
Build Value-Based Relationships: Generating alliances internally and externally by continuously identifying and acting
on those things that will create success for the organization and its constituents, researchers, health care professionals
and communities.
Contribute to Team Success: Actively participating as a committed member of a team and working with other team
members to help complete goals and deliverables.
Customer Focus: Making customers (external and internal) and their needs a primary focus of one's actions;
developing and sustaining productive relationships; creating and executing plans and solutions in collaboration with
team members internally and externally.
Provide Feedback: Objectively observing, analyzing, and sharing perception of other people's performance to help
reinforce or redirect behavior to improve performance and results and providing feedback that is timely, specific,
behavioral, balanced, and constructive.
Work Standards: Setting high standards of performance for self; assuming responsibility and accountability for
successfully completing assignments or tasks; self-imposing standards of excellence rather than having standards
imposed.
Consult: Providing timely, specific information, guidance, and recommendations to help volunteers, Community
Alliances, and fellow staff members make informed committed decisions that will lead to sustainable impact.
Establish Collaborative Working Relationships: Developing and using collaborative relationships to accomplish work
objectives; developing relationships with other individuals by listening, sharing ideas, and appreciating others' efforts.
Successful completion of the projects noted in the success factors above requires cooperation with our staff team,
board, volunteers, donors and key corporate and foundation partners. Quickly establish working relationships to
complete projects as scheduled above.
QUALIFICATIONS:
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Bachelor’s degree (preferably in Communication, English, Journalism, Marketing, or other related field).
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Five or more years of experience in fund-raising, including a proven track record achieving fund raising goals,
particularly with major donors and grants.
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General understanding of charitable solicitation regulations.
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Excellent written and verbal communication skills as well as organizational skills.
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Experience donor prospect research and direct mail campaigns.
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Experience working with volunteer committees and board of directors.
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Proficiency in MS Office (Word, Excel, Access, etc)
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Proficiency in Blackbaud “Raiser’s Edge” (or similar) database a plus.
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Must be comfortable with public speaking.
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Willingness to travel extensively as well as able to work a flexible schedule, including evenings and weekends.