National Tuberous Sclerosis Association Inc

Goal 1: Accelerate research.
We will accelerate the progress in TSC research through federal funding, collaborative research and resource tools.

Goal 2: Improve access and quality of care.
We will support quality TSC care and empower consumers in diverse communities to access it.

Goal 3: Support and empower consumers.
We will provide support and educational services to individuals/caregivers throughout the lifespan to improve quality of life around the world.

Goal 4: Educate and mobilize to increase investment
We will educate the public about those affected by TSC and the benefits of increased investment in TSC research for related disorders such as Autism, Epilepsy, and LAM, and mobilize them to join and support our programs in order to increase annual revenue from $5.9 million (FY18) to $11.9 million by 2023 from both philanthropic and non-philanthropic sources.

Goal 5: Build and strengthen organization
We will build organizational unity and capacity to strengthen the economic viability and growth of the TSC Alliance in order to achieve our mission.

Goal 1: Accelerate research.
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

Goal 2: Improve Access and Quality of Care.
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

Goal 3: Support and empower consumers.
Create a premiere support services volunteer corps
Expand skills to advocate for and access appropriate educational services to improve quality of life
Grow collaborations with other nonprofit organizations 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

Goal 4: Educate and mobilize to increase investment
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
Grow individual participation in crowd-funded initiatives
Broadcast the TSC and TSC 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

Goal 5: Build and strengthen organization
Adhere to financial management best practices consistent with Charity Navigator (CN) Guidelines while maintaining appropriate infrastructure for organization growth
Maintain constituent and supporter database complying with GDPR
Serve as a leader in the rare disease community
Develop board with skill set needed to realize the strategic plan
Invest in staff development to drive results

With a professional staff of 24, the TSC Alliance is governed by a 30-member Board of Directors as of January 1, 2023, comprised of people affected directly by the disease, such as parents or adults with TSC, as well as business professionals, researchers and clinicians. The staff and Board have achieved 100% giving to demonstrate their leadership in the fight against TSC. Since 2010, the organization has placed strategic focus on achieving recognition by industry watchdog organizations, earning a 4 Star Rating from Charity Navigator, the Candid (Guidestar) Exchange Platinum Seal, accreditation by the Better Business Bureau Wise Giving Program and being named as a Top Nonprofit from GreatNonprofits from 2012-2022. The TSC Alliance is headquartered in Silver Spring, Maryland with field staff in CA, DE, LA, MA, MI, MS, NM, PA, TN.

The staff and Board are also supported by an army of more than 2.200 volunteers. Working together, the TSC Alliance strives to improve the quality of life for every individual and family affected by TSC by focusing on three main pillars: Research, Advocacy and Outreach. Each pillar plays a pivotal role in our mission.

Research: The TSC Alliance Research Program stimulates and supports basic, translational, and clinical research on the various manifestations of tuberous sclerosis complex (TSC) to further the development of clinical therapies and, ultimately, a cure for TSC. In 2011, we launched the Unlock the Cure Campaign with the goal to move potential treatments along the drug discovery path more rapidly. As a result, we have tested 63 candidate drugs in the Preclinical Consortium, enrolled more than 2,600 individuals in the Natural History Database linked with 2,500 samples in the Biosample Repository, and have engaged in two clinical biomarker studies, a rare diseases clinical research network and the first and second preventative clinical trial for epilepsy in the United States in TSC.

Advocacy: For more than 20 years, the TS Alliance, partners and grassroots volunteers have worked tirelessly to create a vibrant government advocacy program with the goal of making sure the Federal government continues to focus time, energy and dollars on TSC research. These efforts have translated into more than $505 million in Federal funding for TSC research since 2002 through the National Institutes of Health and appropriations to the Department of Defense’s Congressionally Directed Medical Research program.

Outreach: Our community outreach efforts are designed to offer support and provide education. We employ a full-time nurse practitioner, offer a robust website, publish a national magazine, produce targeted brochures on TSC manifestations, and host a multi-channel digital platform. Additionally, we have grown to 34 volunteer branches covering all 50 states and six global alliances, increasing our worldwide footprint.

• Accelerate research: spent $12.86 million into research 2019-2022; $30 million appropriated for TSCRP in FY20-22; 64 mechanisms or combinations tested by Preclinical Consortium with 20 companies; 2 companies moving into clinical trials; 2327 biosamples with serial blood samples on 199 individuals, more than 100 tissues collected, 20 NHD data requests; $627,392 awarded in research grants; International TSC Research Conference held in 2019 and 2021 and Newborn Screening Innovation Workshop in 2020.

• Improve access and quality of care: state advocacy initiatives with secured appropriations of $1 million in Missouri and $2.25 million in Maryland; 55 individuals/families received assistance in accessing FDA approved medications, ongoing relationships with 19 industry partners and four specialty pharmacy partners; TSC Focus Group established and Board approved new standards for TSC Clinic and Centers of Excellence; 200 child neurologists participated in the Harmful and Disruptive Behaviors CME Symposium at CNS, developed by the Child Neurology Foundation with the TSC Alliance as lead advocacy partner and assisting in curriculum development; secured funding for a CME with 2,151 participants; 50% TSC designated clinics see individuals of all ages.

* Support and empower constituents: 5,164 peer to peer support contacts in 2022; 362 total new volunteers added to Support Services program; 502 volunteer training hours 2022; 29 school meetings in 2022; built and maintained working partnership with 17 national organizations/collaborations; 268 attended virtual meetings in 2022 with 915 views of the recordings afterward. 54% of new March on Capitol Hill attendees took TSC Academy in preparation for advocacy on Capitol Hill. Maintained 6 global partnerships with 3 new global TSC Clinics, bringing the total 10.

*Educate and mobilize to increase investment: raised $12,860,591 for research ; Endowment Fund assets $5,500,386 as of 12/31/22; $2,421,439 net was raised through special events in 2019, $1,227,362 in 2020, $1,143,605 in 2021; $1,443,671 in 2022; 5,650 individuals donated online to crowdfunded events in 2022; in 2022 garnered 2.7 billion impressions; marketing/communications presented findings/recommendations early 2020 and organization moved forward with planning and decisions for name change/rebranding in 2021, formally beginning May 15.

• Build and sustain organization: 4-star CN rating, BBB Giving accreditation, Platinum Candid status, GreatNonprofit in 2022; exp ratios 77.9% program/22.1% admin and fundraising for FY22; 0.77% dupes remain in constituent database; staff attended 28 professional conferences in 2022; added 2 new board members; Science and Medical Team to 6 FTEs.