Donors

Our Impact

In 2018 the TS Alliance Board of Directors approved an updated five-year Organizational Strategic Plan focused on five main goals viewed as the most important to achieving our objective of finding a cure for TSC while improving the lives of those affected. They are:

  1. Accelerate Research
  2. Improve Access and Quality of Care
  3. Support and Empower Constituents
  4. Educate and Mobilize to Increase Investment
  5. Build and Strengthen Organization
Objective To find a cure for TSC while improving the lives of those affected – Approved by the TS Alliance Board of Directors: December 12, 2018
Goals Accelerate Research Improve Access and Quality of Care Support and Empower Constituents Educate and Mobilize to Increase Investment Build and Strengthen Organization
Strategies •Collaborate and extend partnerships with other nonprofits, academic institutes and industry to advance TSC research

•Advocate for Federal research funding

•Increase Preclinical Consortium productivity by engaging researchers, improving models, adapting to priorities of members

•Expand capabilities of centers in the Clinical Research Consortium and fund pilot or add-on studies with pathways to outcomes.

•Increase rate of biosample collection by enrolling individuals anywhere in US

•Invest research grant funding in postdoctoral trainees and highly novel research ideas

•Convene targeted workshops on urgent research problems and follow-up with funds

•Advocate for state funding for research and/or Centers of Excellence

•Develop a support hub to navigate access to FDA approved therapies

•Build evidence for what constitutes high quality care for TSC

•Expand knowledge of evidence-based, best practices of TSC clinical care among TSC Clinic healthcare professionals and other medical providers involved in the treatment of TSC

•Expand access to care for people in regions with no TSC Clinic or TSC-knowledgeable healthcare professionals.

•Improve access and delivery of evidence-based, high quality clinical care for patients with TSC, including comprehensive adult care for inpatient and outpatient services

•Create a premiere support services volunteer corps through Clinic Ambassadors, Junior Leaders, Dependent Adult Transition Resource Coordinators, Adult Regional Coordinators, Spanish Support Network, Education Parent Mentors and Community Alliance leadership

•Expand skills of parents/ caregivers and young adults to advocate for and access appropriate educational services to improve quality of life

•Grow collaborations with other nonprofit organizations internationally, nationally and locally to ensure access to resources, support services, transition tools and information

•Expand reach of education and support through use of technology

•Increase scientific knowledge in the TSC community

•Grow and advance the Global Alliance Program

•Dramatically increase capital for growth of research platform through partnerships with corporations, foundations, state organizations and individuals

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

•Leverage the unique capacity of each Community Alliance to create community-specific campaigns by rebranding and strengthening Step Forward to Cure TSC and offering  menu of other event options

•Grow individual participation in crowd-funded initiatives

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

•Engage an outside PR/marketing firm to implement a new awareness campaign, bolster branding and educate the public at large about TSC

•Adhere to financial management best practices for efficient and effective operations consistent with Charity Navigator (CN) Guidelines while maintaining appropriate infrastructure for organization growth

•Maintain database of current, reliable information of individuals with TSC their families and TS Alliance supporters complying with GDPR

•Serve as a leader in the rare disease community, sharing scientific and medical link of TSC to other diseases among peer diseases and disorders organizations, medical and related professionals, foundations, potential donors and constituents

•Develop board of directors with skill set needed to realize the strategic plan

•Invest in staff expansion/skill development to drive results

Measures •Invest $56 million in research over the next five years to drive projects, workshops, and collaborations

•Maintain a minimum of $6 million annually for TSCRP

•Reach 75 mechanisms or combinations tested in Preclinical Consortium with working relationship with 12 industry partners

•Clinical Research Consortium receives $30 million federal or industry funding for trials

•Reach 2500 biosamples with serial blood samples on 250 individuals and 150 tissues, with each genetically tested & 12 use requests annually with clinical data captured in the Natural History Database

•$450K paid annually on research grants, 2/3 for postdocs

•Annual innovation workshop held with follow-up research funded by innovation fund

•Grow state initiatives to four states

•Increase partnerships with specialty pharmacies, payers, industry, private foundations to support at least 200 individuals/ families annually by 2023

•Form task group of key stakeholders (medical professionals, patients/ families) to critically evaluate current TSC Clinic designation standards and recommend new organizational structure and requirements to the TS Alliance Board of Directors for approval and implementation by 2020

•Conduct 7 studies between 2019-2023 focused on advancing evidence-based standards of care for TSC and/or TSC patient/ caregiver-reported outcomes, using a combination of patient survey, existing data review, and prospective study designs

•Develop bi-annual curriculum (e.g. CME/CNE or TSC workshops at professional association meetings) that exposes TSC Clinic Directors and other health care providers to current evidence-based practices for TSC diagnosis, surveillance, and management

— Participation goal of 136 from TSC Clinics and 80 outside TSC Clinics

•Develop a telehealth network “TSCNet” to expand access to TSC quality care by 2023

•Increase TSC clinics providing services to children and adults, inpatient and outpatient services, to 65% by 2023

•Grow peer to peer support from 20,246 (2017) to 35,867 (10% annually)

— Recruit 225 new volunteers into Support Services programs by 2023

— Provide 600 hours of volunteer training per year

•Increase the Education Parent Mentor program to support school meetings from 74 to 475 by 2023

•Build and maintain working partnerships with 15 national organizations/ collaboratives (ARC, Bcureful, CNF, CTF, EF/REN, LAM Foundation, ATS-PAR, ELC, Global Genes, ISAN, NORD, RDCRN, TSCi)

•Establish relationships between all Community Alliances and local Arc Chapters where existing by 2023 utilizing Associate Partnership with The Arc US

•Utilize technology or support services app to increase participation by 25% from 2,029 (Community Alliance meetings) attendees (2017) through live virtual meetings monthly in three major time zones, and create a podcast library by 2023

•Implement TSC Academy by 2020 with 100% of sponsored March on Capitol Hill advocates completing required units for certificate by 2021 (avg score of 80% on post-test for required advocacy units/70% for required science units). Increase # of units accessed by 100% per year between 2020-2023

•Expand to 10 Global Alliances by 2023, growing each countries’ constituencies by 15%, increase global TSC Clinics to 18, and develop country-specific strategic plans

•Raise $56 million for research over the next five years

•Grow the Endowment Fund to $10 million by 2023 and realize the maximum allowable annual contribution.

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

•Increase the number of people donating online to crowd-funded events from 1,257 (2017) to 2,514 (2023)

•Secure 95 million impressions annually via multiple and varied outlets with minimum investment

•Achieve additional 30 million impressions through new awareness campaign and 3,500 contacts to the database per year of the campaign

•Maintain a 4 star CN rating and meet or exceed an 85/15 program/ supporting expenses ratios by 2021 in accordance with the five year Research Business Plan

•Implement in depth review to ensure integrity of constituent data with less than 1% duplicates by 2020 and maintain thereafter

•Participate/present at 25 professional/ industry conferences per year

•Recruit 3-6 new Board members annually, reflecting the diversity of our constituency, with financial management, global relations, technology, scientific/medical expertise and ability to raise substantial unrestricted donations or for targeted initiatives including research or community initiatives

•Grow Science and Medical team to 9.5 FTEs to accelerate research and improve quality of care by 2021 and corresponding staff (e.g., financial, fundraising, communications, support services) and infrastructure to support growth while maintaining 80% retention outside of retirements

•Create transition plan for senior staff retirements

 

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

Also updated in 2018, the Tuberous Sclerosis Alliance Theory of Change (TOC) resulted from a 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:

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.