Our Impact

In 2014 the TS Alliance Board of Directors approved a five-year Organizational Strategic Plan focused on four main goals that were viewed as the most important to achieving our objective of finding a cure for TSC while improving the lives of those affected. They were:

  1. Accelerate Research
  2. Support and Empower Constituents
  3. Educate and Mobilize to Increase Investment
  4. Build and Strengthen Organization


To find a cure for TSC while improving the lives of those affected


Accelerate Research Support and Empower Constituents Educate and Mobilize to Increase Investment Build and Strengthen Organization


•Advocate for federal and state funding of novel and innovative therapies

•Expand usage of Natural History Database

•Develop TSC Biosample Repository as an asset to the medical community

•Focus TS Alliance Grants to promising researchers starting their careers

•Foster partnerships that synergize with consortium grants and industry sponsorships

•Grow Clinical Research Consortium

•Identify additional persons affected by TSC to broaden reach of initiatives

•Expand access to quality clinical care for TSC

•Provide educational counseling and referrals

•Provide peer/social support via  Community Alliances (CAs), Adult Regional Coordinators (ARCs), Dependent Adult Transition Resource Coordinators, regional and world conferences, TSC Connect and social media

•Attract new volunteers via appeal to a broad range of demographic segments for delivery of programs

•Expand Global Alliance program

•Broadcast the TSC and TS Alliance story to widespread audiences via effective and efficient  communications

•Implement new development campaigns and partnerships with foundations, state organizations and individuals

•Emphasize the role and opportunities associated with Endowment via estate planning and gift annuities

•Explore the use of crowd source fundraising techniques to complement current technology already in use

•Continue emphasis on systems and processes that encourage efficient and effective operations consistent with Charity Navigator (CN) guidelines

•Trumpet the scientific and medical link of TSC to other diseases and disorders as the “face” of TSC among peer diseases and disorders organizations, medical and related professionals, foundations, potential donors and constituents

•Build the board of directors around skill sets needed to realize the strategic plan and remain engaged with outgoing directors

•Invest in staff/skill development


•Reach a level of annual research funding of $3.25 million by 2018

•Enroll 2,000 participants in Natural History Database by 2015

•Plan/implement a TSC Biosample Repository by 2015; collect 1000 blood samples and 200 tissue samples from Nat. History Database participants by 2018

•Fund 6 grants annually for $450,000

•By 2018, establish working relationship with 4 industry partners actively developing new TSC therapeutics

•Add 3 additional sites to expand geographical and lifespan diversity of the Clinical Research Consortium and obtain $20 million in industry/government funding to conduct clinical studies from 2014-2018

•Establish new relationships with 10,000 individuals/families added to constituent database including 4,000 newly identified individuals with TSC by 2018

•By office visit or telemedicine, increase  the number of individuals with TSC to 6,500 being served by a TSC Clinic and assure 80% of clinics provide services to both children and adults by 2018

•Increase peer to peer support from ARCs, Clinic Ambassadors, Dependent Adult Transition Resource Coordinators and CA meetings and gatherings from 2,200 to 4,400 by 2018,  facilitated by online presence

•Identify and cultivate a minimum of 200 new CA volunteers by 2018 with eye toward possible community leadership, Government Action Team, board or committee roles

•Establish 2 Global Alliances by 2015 and 3 additional by 2018

•Secure 10 million impressions annually via multiple and varied  outlets with minimum investment

•Create 1-2 new research fundraising campaigns with $5 million in incremental funding

•Realize $250,000 contribution from Endowment Funds on an annual basis by 2018

•Mobilize grassroots community through budgeted special events to raise $1.5 million average net annually over next 5 years

•Achieve at minimum 3% annual increase in program expenses with balanced budget; 80/20 program/expense ratio with revenue of $5.5 million by 2018 while obtaining 4 star CN rating

•Participate in 15 professional and industry conferences (nat’l/int’l) annually

•Recruit 2-5 diverse new Board members annually with financial acumen, clinical or scientific expertise, biotech/pharma business experience, or ability to raise substantial funds to support research and community initiatives

•Maintain a 70% staff retention rate outside of retirements and build redundant skill sets among current and/or planned staff members

•Develop succession plans for top executive staff

Revision approved by Executive Committee: 11/13/15 and 11/21/14; by Board of Directors 12/10/14.


To achieve these four goals, the organization developed the strategies and measures above, and conducts an annual audit to measure our progress.

The Tuberous Sclerosis Alliance Theory of Change (TOC) resulted from a year-long series of critical thinking exercises by our board members and senior staff.  In general, a TOC is a specific type of methodology for planning, participation, and evaluation that is used in the philanthropy, not-for-profit and government sectors to promote social change. Our TOC defines long-term goals and then explains how a group of early and intermediate accomplishments sets the stage for producing long-range results.

TS Alliance Theory of Change (PDF)
Approved by TS Allliance Board of Directors, December 10, 2014; Revisions approved by Executive Committee, November 13, 2015

The TS Alliance is also committed to transparency and accountability. We believe it is important to leverage donations from a diversity of sources and utilize donor funds to responsibly advance our mission.

As part of this transparency effort, the TS Alliance annually shares our results and financial reports publicly. These reports from last year can be found below.

Finally, the organization has placed strategic focus on achieving recognition by industry watchdog organizations, earning a 4-star rating from Charity Navigator, achieving the Guidestar Exchange Platinum Seal, receiving accreditation from the Better Business Bureau Wise Giving Alliance and being named a Top-Rated Nonprofit by GreatNonprofits.