What SADS Foundation does

SADS Foundation (Sudden Arrhythmia Death Syndromes Foundation) is a US-based 501(c)(3) nonprofit patient advocacy organization founded on December 12, 1991 by Dr. G. Michael Vincent alongside Doris Toran Goldman and Nancy Toran Duitch. It serves patients, families, healthcare professionals, researchers, and industry partners across the inherited cardiac arrhythmia disease space, including Long QT Syndrome (LQTS), CPVT, Brugada syndrome, ARVC, Short QT Syndrome, Timothy Syndrome, and WPW. The foundation originated from decades of clinical research at LDS Hospital and the University of Utah that contributed to the discovery of the genetic basis of inherited LQTS, including identification of genes such as KCNQ1, KCNH2, SCN5A, and CACNA1C.

The foundation's core offerings span patient and family support services (physician referrals, support groups, genetic testing guidance, crisis support), accredited medical education for healthcare professionals (webinars, annual conferences, CME/CNE programs), public awareness campaigns (SADS Awareness Month, warning signs education, school programs), and research facilitation (EL-PFDD meetings, patient registries, research connections). The foundation operates a National Physician Referral Network, distributes over 30,000 newsletters annually, hosts an annual International Family Conference and an annual International Healthcare Professionals Conference, and runs the Children's Heartbeat international webinar series in partnership with OHSU and Project ECHO. It co-developed the 2020 HRS Expert Consensus Statement on Sudden Cardiac Arrest investigation.

The organization's revenue model is donation- and grant-based. Funding sources include individual donations (one-time, monthly sustaining, memorial gifts through the Share Their Light campaign), corporate sponsorships and grants from biopharma, medical device, and biotech companies (Thryv Therapeutics, Tenaya Therapeutics, Invitae, Medtronic, Boston Scientific, Ambry Genetics, Avidity Biosciences, LEXEO Therapeutics, Rocket Pharmaceuticals, Solid Bio, and others), and an annual Corporate Roundtable membership. All patient and family services are provided free of charge. The organization is governed by a Board of Trustees led by Board President Dr. Michael J. Ackerman (Mayo Clinic), with day-to-day operations led by CEO Walker Frahm (appointed 2022/2023) and a small staff of 1–10 employees headquartered in Salt Lake City, Utah.

Name

SADS Foundation

Legal name

Sudden Arrhythmia Death Syndromes (SADS) Foundation

Website

https://sads.org

Company type

Private

Founded year

1991

Operating status

Operating

Headcount range

1–10 employees

Short description

SADS Foundation is a US-based 501(c)(3) nonprofit founded in 1991 that supports patients, families, healthcare professionals, and researchers affected by genetic heart arrhythmia conditions (LQTS, CPVT, Brugada, ARVC) through education, awareness, advocacy, and research facilitation.

Ownership category

akta.pro rank

Product category

Patient Advocacy Nonprofit

NAICS

Voluntary Health Organizations (813212), Other Individual and Family Services (624190), Individual and Family Services (6241)

SIC

Services-Health Services (8000), Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Global Health Research, Evidence & Technical Assistance Organizations (HLAJAKAN), Community Health, Prevention & Health Education (BPAGACAC)

Keywords

• Patient advocacy services
• Genetic heart conditions
• Medical education programs
• Cardiac arrhythmia support
• Nonprofit health organization

Headquarters

HQ city

Salt Lake City

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Individual Donations and Fundraising: The organization raises funds from individual donors through one-time gifts, monthly sustaining donations, online fundraisers, and the Share Their Light spring campaign. Donors can also contribute to honorary funds or create custom fundraising pages.
2. Corporate Sponsorships and Grants: The organization receives financial support from pharmaceutical companies, medical device companies, and biotech firms engaged in inherited arrhythmia therapeutics development. The Corporate Roundtable requires an annual membership fee from industry partners. Medical education programs are supported by grants from companies such as Thryv Therapeutics, Tenaya Therapeutics, Invitae, Medtronic, Boston Scientific, Ambry Genetics, and others.
3. Medical Education Services: SADS Foundation provides accredited continuing medical education (CME) programs for healthcare professionals including webinars, seminars, and annual conferences. Over 30,000 newsletters are mailed out each year. These programs are partially funded by industry grants and support the organization's physician education mandate.

Go-to-market motion3 records

Distribution channels5 records

Marketing channels12 records

Core offering

The SADS Foundation is a nonprofit charitable organization that delivers patient and family support services, accredited medical education for healthcare professionals, public awareness campaigns, and research advocacy for individuals and families affected by genetic heart arrhythmia conditions (LQTS, CPVT, Brugada, ARVC, Short QT, and Timothy syndromes). Its offerings include a national physician referral network, support groups, webinars, an annual international family conference, an annual international healthcare professionals conference, an FDA externally-led patient-focused drug development (EL-PFDD) meeting, and the Share Their Light fundraising campaign.

Product overview

The SADS Foundation is a nonprofit charitable organization offering a portfolio of educational, support, and advocacy programs rather than a commercial product platform. Its core offerings include patient and family support services, physician and health professional education programs, public awareness initiatives, and research advocacy. Key programs include the Living With SADS Webinars, Annual International Family Conference, International Healthcare Professionals Conference, SADS EL-PFDD Meeting, and the Share Their Light campaign. Additional resources include a National Physician Referral Service, genetic testing resources, a Drugs to Avoid database, and the Children's Heartbeat international webinar series. These programs collectively support families affected by genetic heart conditions, educate medical professionals, and advance research to prevent sudden cardiac death.

Differentiator

Problem solved

Functional benefit

Brands

• Share Their Light: The SADS Foundation's spring campaign to remember the people their community has lost, to share their stories, and to raise funds in support of their life-saving work.

Products and services

• Patient and Family Support Services Program providing information, resources, research, and support to patients and families dealing with genetic conditions that cause sudden cardiac death in the young, including a national physician referral service, support groups, peer networking, and crisis support. Targeted at affected patients and their families.
• Physician and Health Professional Education Medical education program that informs and trains physicians, electrophysiologists, genetic counselors, and nurses to diagnose and treat SADS conditions through accredited seminars, conferences, journal publications, and webinars. Annual operating budget exceeds $300,000.
• Public Awareness Programs Public awareness initiatives including sponsoring public awareness meetings, providing educational videos on LQTS, establishing media relationships, and sponsoring International SADS Awareness Month, focused on warning signs such as family history of unexplained sudden death under 40, fainting or seizures during exercise/excitement/startle, and chest pain or shortness of breath during exercise.
• National Physician Referral Service Yearly updated national network/database of knowledgeable physicians that helps SADS-affected families find appropriate medical specialists across the United States.
• Living With SADS Webinar Series Expert-led educational webinar series about SADS conditions that shares knowledge and advice on topics important to living and thriving with a SADS condition. Recordings distributed via YouTube. Targeted at patients and families.
• Annual International Family Conference Annual weekend conference bringing SADS-affected families and world-renowned medical experts together for learning, support, peer networking, and community building. The 2026 edition is scheduled for Houston, TX.
• International Healthcare Professionals Conference Annual accredited comprehensive medical conference on management of patients with cardiomyopathies and channelopathies, designed for electrophysiologists, physicians, genetic counselors, and nurses. Offers CME credit.
• SADS EL-PFDD Meeting Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting bringing patient communities together with the FDA, researchers, and biopharma stakeholders to advance therapy development for inherited arrhythmias.
• Share Their Light Campaign Spring fundraising and awareness campaign to remember people lost to inherited arrhythmias, share their memorial stories, and raise funds to support the foundation's life-saving work. Includes social media hashtag #ShareTheirLight and custom fundraising pages.
• Genetic Testing Resources Educational and referral resource helping patients and families understand genetic testing for SADS conditions, who should be tested, how to interpret results, and how to pursue cascade family screening, with affiliations to cardiogenetic testing labs.
• Drugs to Avoid Database Online clinical resource listing medications that individuals with specific SADS conditions should avoid, used by patients, families, and clinicians to inform safe treatment decisions.
• Children's Heartbeat International Webinar Series Free monthly international webinar series centered on case presentations allowing discussion with experts about difficult pediatric cardiac cases, designed for clinicians in under-resourced regions. Co-produced with Oregon Health & Science University and Project ECHO.

Quantifiable outcome

• Over 30,000 newsletters distributed annually to patients, families, and healthcare professionals
• +2 more outcomes

Segments4 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Nine partnerships are on record, tiered core, major and minor.

• Lurie Children's Hospital of ChicagocoreStrategic or Co-development Partner · 8 November 2024Host venue for the 2024 International Healthcare Professionals Conference. The conference was held on November 8, 2024 at Lurie Children's Hospital, 225 E Chicago Ave, Chicago, IL 60611. Lurie Children's is a leading pediatric cardiac care center.
• PACES (Pediatric and Congenital Electrophysiology Society)coreStrategic or Co-development Partner · 8 November 2024Endorsed partner for the 2024 Healthcare Professionals Conference. PACES is a professional society of pediatric and congenital electrophysiologists, making this endorsement significant for credibility in the medical community.
• Heart UniversitymajorStrategic or Co-development Partner · 1 January 2024Co-sponsor of multiple medical education webinars including the Developing Gene Therapies for Cardiomyopathies webinar and the State of Genetic Testing webinar. Heart University provides cardiovascular education content and accreditation support.
• Oregon Health & Science University (OHSU) / Project ECHOcoreStrategic or Co-development Partner · 1 January 2024Partner in the Children's Heartbeat international webinar series, a monthly case-presentation and discussion program for clinicians in under-resourced regions. OHSU provides the clinic medical director (Dr. Seshadri Balaji) and Project ECHO provides the accreditation and platform.
• Cincinnati Children's HospitalmajorStrategic or Co-development Partner · 1 January 2024Joint accreditation partner for the Spotting Arrhythmogenic Cardiomyopathy in Children webinar (August 2025) alongside Heart University. Cincinnati Children's is a leading institution in pediatric cardiology and cardiac genetics.
• HRS (Heart Rhythm Society)coreStrategic or Co-development Partner · 1 January 2021Co-developer of the 2020 Expert Consensus Statement on Investigation of Decedents with Sudden Unexplained Death and Patients with Sudden Cardiac Arrest and Their Families. SADS Foundation webinars reference HRS consensus statements and guidelines.
• Genome MedicalminorStrategic or Co-development PartnerPartner/lab affiliation for cardiogenetic testing support. Genome Medical provides genetic counselor support and test ordering resources referenced on the SADS Foundation website.
• CGTA (Cardiogenetic Testing Alliance)minorStrategic or Co-development PartnerListed as a partnership/lab affiliation on the SADS Foundation cardiogenetic testing page.
• Genetic Cardiomyopathy Awareness ConsortiumminorStrategic or Co-development PartnerListed as a partnership/lab affiliation on the SADS Foundation cardiogenetic testing page.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• Muscular Dystrophy Association: Established rare disease nonprofit with comparable revenue model (individual donations, corporate partnerships, biotech sponsorship), research grant programs, and patient services — useful structural parallel though focused on neuromuscular rather than cardiac conditions.
• American Heart Association: The largest U.S. cardiovascular health nonprofit, with overlapping goals in CPR training, AED access, and cardiac research; serves as the broad incumbent against which smaller disease-specific nonprofits like SADS differentiate.

Direct peers

• Parent Heart Watch: National nonprofit dedicated to protecting youth from sudden cardiac arrest; overlaps with SADS Foundation in family support, awareness campaigns, and prevention advocacy for inherited cardiac conditions. Most directly comparable in mission and target audience.
• Sudden Cardiac Arrest Foundation: Nonprofit focused on sudden cardiac arrest awareness, education, and survivor support; shares SADS Foundation's emphasis on early intervention and public awareness of warning signs, though with broader (non-genetic) focus.
• Children's Cardiomyopathy Foundation: Nonprofit focused on pediatric cardiomyopathy; similar model of family support, physician education, and research advocacy in rare pediatric cardiac disease. Comparable donor base and industry partner structure.
• Hypertrophic Cardiomyopathy Association (HCMA): Disease-specific nonprofit supporting patients and families affected by hypertrophic cardiomyopathy; closely comparable in structure — patient support, physician education, advocacy, and research facilitation — but focused on a different rare cardiac condition.
• Project ADAM: National initiative implementing sudden cardiac arrest prevention programs in schools and communities; directly overlapping with SADS Foundation's schools-based and youth-focused awareness initiatives.

Regional players

• British Heart Foundation: UK-based cardiovascular research and patient support charity; similar in mission scope and operating model but serves a different geography and does not directly compete for U.S. donors.
• Cardiac Arrhythmia Network of Canada (CANet): Canadian network of researchers, clinicians, and patients focused on cardiac arrhythmia; comparable in mission but operates primarily in Canada rather than the U.S. market SADS serves.

Others

• ARVC/D Program at Johns Hopkins: Leading academic research program for arrhythmogenic right ventricular cardiomyopathy, closely collaborating with SADS Foundation on patient registries and research — adjacent rather than competitive, but operating in the same disease space.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/SADSFoundation
• YouTubeyoutube.com/channel/UCDdzkHfcvspDCzyGw6UGKUw
• Facebookfacebook.com/thesadsfoundation
• LinkedInlinkedin.com/company/the-sads-foundation
• Instagraminstagram.com/sadsfoundation
• TikToktiktok.com/@sadsfoundation

Revenue estimate

Valuation estimate

Number of profiles

Profiles12 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about SADS Foundation