The following principles were kept in mind while developing this new strategic plan:
- Evolution versus revolution of the 2011 Strategic Plan, building on strategies that further advance research, community programs and organizational fortitude
- Align with the mission, vision and goals of the organization
- Consistent with the SWOT (strengths, weaknesses, opportunities and threats) analysis
- Achievable plan, aiming to engage and energize the TSC community while strengthening and diversifying fundraising capacity
- Easy to understand and measure
Over the past 13 years, the Tuberous Sclerosis Alliance (TS Alliance) has cultivated a passionate and committed grassroots community, primarily through our Community Alliances or volunteer branches of our organization. Community Alliances have hosted educational and support meetings, increased awareness in the community, provided peer-to-peer support and been an integral part of organizational fundraising. Further, grassroots volunteers from around the country have assisted in securing annual appropriations from the Department of Defense’s Congressionally Directed Medical Research Program, which cumulatively account for $53 million in appropriations for the TSC Research Program. As a result of government relations success and organizational funding of pivotal TSC research and young investigators ($17.4 million in research grants since 1984) as well as convening biennial international research conferences, the TS Alliance enjoys a solid reputation in the scientific community.
Simultaneously, there has been growth in clinical care for TSC: 44 TSC Comprehensive Care Clinics following TSC Clinic Designation Guidelines; updated and published revision of the TSC Clinical Consensus Guidelines; participation by 17 TSC Clinics in the TSC Natural History Database with more than 1,300 participants; success of clinical trial recruitment and the development of the Clinical Research Consortium; and two FDA-approved indications for a drug that shrinks SEGAs and angiomyolipomas.
Despite these tremendous accomplishments, the “Tuberous Sclerosis Alliance” and “tuberous sclerosis complex” are still not widely known among the general public. As a result, individuals continue to be undiagnosed or misdiagnosed, and some individuals with TSC may remain unaware of our organization. Due to lack of knowledge among the general public about the disease, fundraising remains reliant on our grassroots community, who through local events such as Step Forward to Cure TSC, Comedy for a Cure or Art for a Cure, among others, account for 40 to 65 percent of organizational revenue in any given year. With many of our volunteers having served with the organization up to 10 years, the TS Alliance needs to identify ways to keep them engaged and energized while cultivating a future generations of volunteers. This includes implementation of new fundraising campaigns and events relevant to Generation Y (Millenniums) and Z.
Over the past 5 years, individuals impacted by TSC (particularly from Generation Y and Z) have become online activists, though not always connecting with the TS Alliance directly. These individuals benefit from online resources such as the website or social media communities. The TS Alliance needs tactics to make our organization relevant to them and capture them in our constituent database so they may benefit from information, conferences, support or clinical trials in the future. To succeed, the TS Alliance also needs to make our constituent database -- or access to it -- available online, interactive and with regular communication. The 2014 World TSC Conference also provides the ability to connect with individuals and families face to face and find meaningful roles for them to play to help advance the TS Alliance mission. The 2014 World TSC Conference also allows us to continue to build international collaborations, both with TSC International and Global Alliances (or franchises of our organization) around the world.
The TS Alliance has worked avidly over the past 13 years to advocate for annual appropriations to the TSC Research Program at the Department of Defense’s Congressionally Directed Medical Research Program. In this fiscally tight environment, a real threat exists; these programs could be greatly reduced or eliminated. It is crucial to find other avenues to promote and invest in TSC research, perhaps through State-level funding, or to fully explore other government funding vehicles such as the National Institute of Health’s Office of Rare Disease Research Consortium Grants or the BRAIN Initiative.
Finally, the TS Alliance is over-reliant on a small number of industry partners. It is critical to expand opportunities to collaborate with a growing number of companies entering the fields of epilepsy, autism or even next generation mTOR inhibitors for cancer. Expanding and diversifying our portfolio of supporters also means increasing the number and amount of donations from major donors, foundations and other corporate partners who strengthen our organization and our ability to deliver quality programs and research while taking the dependence for fundraising off the backs of those living with the disease.
Maintain our pinpoint focus as an organization in order to:
- Increase and refine opportunities for stakeholders (researchers, clinicians, volunteers, corporate partners, government and nonprofit collaborations) to participate in strategic initiatives, thereby energizing them and maximizing the efficiency of our organization.
- Broaden the TS Alliance reach and profile, nationally and globally, to identify and serve more individuals with TSC.
- Maximize public awareness efforts to diversify and strengthen fundraising efforts.
- Plan, implement, and measure effectiveness of the strategic plan with results reporting, including theory of change execution to monitor tangible progress in quality of life for individuals and families impacted by TSC.
The TS Alliance maintained the four organizational goals from the previous strategic plan and updated strategies to coincide with the next phase of organizational growth. A high level summary follows with more specific information found in the OGSM (objectives, goals, strategies and measurements) at the top of this page:
Accelerate Research: The Unlock the Cure campaign defined research needed to move potential treatments from the lab (pre-clinical) to the TSC community (via clinical trials) as quickly as possible. This initiative was built on a foundation of five pillars to make the most progress in TSC-specific research: advancing Drug Discovery, identifying Biomarkers, increasing TS Alliance supported research grants, developing a Clinical Research Network, and expanding the TSC Natural History Database. The updated strategic plan utilizes and builds on these pillars with the ultimate aim of moving toward preventative and personalized medicine approach. Some additional strategies associated with this goal include advocating for Federal and State Funding for innovative and novel therapies, the development of a Biosample Repository, and fostering industry partnerships.
Support and Empower Constituents: The TS Alliance can account for approximately 18 percent of the estimated U.S.-based tuberous sclerosis complex-affected population in our constituent database. To gain a measurable impact of our effectiveness, our target is to identify and serve a minimum of 25 percent of the U.S. population by 2018 through direct service and peer-to-peer support programs for individuals of all ages. Based on our effective model of community advocacy and support, we will extend our scope of services through the establishment of Global Alliances, or franchises of our organization around the world. Finally, we want to broaden the outreach of TSC Clinics and their comprehensive service through the use of telemedicine to improve the quality of life and lifespan care for individuals with TSC.
Educate and Mobilize to Increase Investment: To expand research and community programming, we must engage with a wider range of potential donors to diversify our fundraising sources. The implementation of an updated communication plan to be developed by the Matale Line will be one avenue for cultivating a new generation of individual, foundation, and corporate supporters. Further, we hope to engage and to energize our grassroots community through new, innovative fundraising techniques such as crowd-sourcing, allowing them to participate in research decision making or participating in new special events. Finally, we will formulate new branded campaigns (similar to Unlock the Cure) targeted to funding strategic initiatives while increasing contributions to the Endowment Fund that creates less reliance on special events and sustains long-term growth of the organization.
Build and Strengthen Organization: The goal by 2018 is to grow revenue by 19 percent over FY2013 to $5.5 million with program expenses at 80 percent and fundraising and administration expenses at 20 percent. To accomplish this, the TS Alliance needs to recruit new board members with a commitment to realizing specific strategies in the strategic plan and with a commitment to increasing contributions from non-event sources. We also know the organization is most successful when we retain talented staff with the capacity for growing programs and services, invest in their career development and training, and create succession plans for any retirements or continuity of the organization. Moreover, to accomplish the aggressive growth in the strategic plan, we need to invest in future staff resources.
This Strategic Plan was approved at the TS Alliance Board of Directors Meeting on March 6, 2014.
The following reports are downloadable in PDF formats:
Stategic Plan Progress Reports
State of the TSC Communities Reports