What SLC6A1 Connect does

SLC6A1 Connect is a 501(c)(3) nonprofit patient advocacy organization founded in 2018 by Amber Freed after her son Maxwell's diagnosis of SLC6A1, an ultra-rare genetic neurological disorder causing epilepsy, movement and speech disorders, intellectual disability, and behavioral challenges. Headquartered in Denver, Colorado (with a Frisco, Texas mailing address), the organization employs 11-50 staff and is parent-led, serving affected children and adults across 42+ countries through US local chapters in Wisconsin, Kansas/Missouri, Iowa, California, and the Northeast, plus international sister organizations.

The organization's core "product surface" is research infrastructure and family services rather than commercial technology. It funds gene therapy and translational research grants that pass to academic labs and biotech partners with a 0% overhead rate, ensuring 100% of grant dollars flow to science. It supports a portfolio of patient registries and natural history studies—The Matrix, Simons Searchlight, Citizen Health, and a proprietary database, with multilingual survey support across eight languages—and makes scientific resources (Drosophila lines, mouse models, iPSC-derived neurons and astrocytes, commercial plasmids, Western blot reagents) available to the research community. Family-facing programs include newly diagnosed guidance, specialist referrals, a free genetic testing partnership with Probably Genetic, social-media and blog content, and the annual International Scientific Symposium and Family Conference.

Revenue flows entirely from donations and research-adjacent philanthropy. Direct donations and the GoFundMe "Families for a Cure" campaign, augmented by community-organized fundraisers, comprise the giving model; no fees or services are charged to families. Strategic positioning is anchored in coalitions (American Epilepsy Society, National Organization for Rare Disorders, Global Genes, CombinedBrain, Epilepsy Foundation, Rare Epilepsy Network, Epilepsy Leadership Council) and earned media coverage in People, CNBC, HuffPost, MIT Technology Review, Bloomberg, and regional outlets. The December 2025 announcement of the first human dosing of SLC6A1 gene replacement therapy at the Atlanta symposium marks the most consequential clinical milestone to date.

Name

SLC6A1 Connect

Legal name

SLC6A1 Connect

Website

https://slc6a1connect.org

Company type

Private

Founded year

2018

Operating status

Operating

Headcount range

11–50 employees

Short description

SLC6A1 Connect is a 501(c)(3) nonprofit founded in 2018 that funds gene therapy research, operates patient registries and natural history studies, and provides free support services and resources to children and families affected by the ultra-rare SLC6A1 neurological disorder across 42+ countries.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Social Assistance (624)

SIC

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

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industry

Specialty Therapeutic-Area CROs (e.g., oncology/rare disease) (HLAGAAAL)

Keywords

• Patient advocacy services
• Rare disease research
• Genetic disorder support
• Gene therapy research
• Family support programs

Headquarters

HQ city

Denver

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Others

Revenue model

1. Donations and Fundraising: SLC6A1 Connect is a 501(c)(3) nonprofit organization that raises funds primarily through direct donations, GoFundMe campaigns, and community-organized fundraisers. The primary campaign is 'Families for a Cure' hosted on GoFundMe. The organization does not charge families for any services or resources.
2. Research Grants: The organization funds gene therapy and translational research grants awarded to academic labs and biotech partners. Importantly, SLC6A1 Connect does not take an overhead rate on research grants, meaning 100% of grant funds go directly to scientific research.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

SLC6A1 Connect is a 501(c)(3) nonprofit patient advocacy organization that funds innovative gene therapy and translational research for SLC6A1-related disorders, operates patient registries and natural history studies, supports newly diagnosed and ongoing family care, and convenes the global SLC6A1 community through an annual International Scientific Symposium and Family Conference. All services, resources, and support are provided free of charge to families.

Product overview

SLC6A1 Connect is a parent-led patient advocacy organization, not a technology company. The organization does not offer a software product, platform, or named digital services. Its offerings consist of patient/family support programs, research funding coordination, educational resources (including a blog with scientific content), an annual symposium, patient registries, and partnerships for genetic testing and natural history studies. All 'products' identified are informational resources, community programs, or referral/partner services rather than commercial software offerings.

Differentiator

Problem solved

Functional benefit

Products and services

• Patient and Family Advocacy Program Core advocacy, navigation, and community support services for families and individuals affected by SLC6A1-related disorders, including newly diagnosed guidance, specialist referrals, treatment information, sibling and caregiver support, financial and insurance navigation, and local chapter support across multiple U.S. states.
• Patient Registry and Natural History Study Program Structured patient data collection across The Matrix (Natural History Study), Simons Searchlight (survey-based collection), and Citizen Health (medical record retrieval and sharing), supporting families and researchers with clinical trial readiness and patient recruitment.
• SLC6A1 Connect Research Grant Program Grant funding for gene therapy and translational research on SLC6A1-related disorders, with awards directed to academic labs and biotech partners to accelerate treatment development.
• Annual International Scientific Symposium and Family Conference Annual in-person conference convening families, researchers, clinicians, and industry partners for scientific presentations, family sessions, community building, and milestone announcements; registration is conducted via JotForm.
• No-Cost Genetic Testing Program for SLC6A1 (via Probably Genetic) Patient-initiated, no-cost genetic testing service for pediatric epilepsy disorders including SLC6A1, provided through partner Probably Genetic with sample collection kits mailed to homes and virtual genetic counseling included.

Quantifiable outcome

• First human dosing of SLC6A1 gene replacement therapy achieved in 2025
• +2 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

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

• American Epilepsy Society (AES)coreStrategic or Co-development PartnerSLC6A1 Connect partners with the American Epilepsy Society to elevate SLC6A1 visibility at scientific meetings. The annual symposium is held the day before the AES Annual Meeting to maximize researcher and clinician attendance. The partnership positions SLC6A1 within the broader epilepsy research community.
• National Organization for Rare Disorders (NORD)coreStrategic or Co-development PartnerSLC6A1 Connect is a member of NORD, aligning with the leading rare disease advocacy organization in the US to advance shared goals around rare disease awareness, policy, and research infrastructure.
• Epilepsy FoundationcoreStrategic or Co-development PartnerPartnership with the Epilepsy Foundation to improve diagnosis, access to care, and research for SLC6A1 within the epilepsy community. SLC6A1 is a genetic epilepsy condition, making this alliance strategically important for patient referral and advocacy.
• CombinedBraincoreStrategic or Co-development PartnerCombinedBrain is a nonprofit consortium focused on accelerating therapies for neurodevelopmental disorders by pooling resources and data across patient advocacy organizations. SLC6A1 Connect participates in this consortium to advance SLC6A1 research within a broader neurogenetics ecosystem.
• Global GenescoreStrategic or Co-development PartnerGlobal Genes is a rare disease advocacy organization providing resources, connection, and support to patients and advocates. SLC6A1 Connect leverages Global Genes' platform for outreach, education, and coalition-building within the rare disease community.
• Rare Epilepsy Network (REN)majorStrategic or Co-development PartnerSLC6A1 Connect participates in the Rare Epilepsy Network, a coalition of rare epilepsy organizations working together on shared advocacy, research, and policy priorities affecting the epilepsy community.
• Epilepsy Leadership Council (ELC)majorStrategic or Co-development PartnerSLC6A1 Connect is part of the Epilepsy Leadership Council, a coalition that coordinates advocacy efforts and resource-sharing across epilepsy-focused organizations to drive systemic improvements in epilepsy care and research.
• Probably GeneticcoreGTM or Marketing PartnerSLC6A1 Connect partnered with Probably Genetic to increase access to genetic testing within the SLC6A1 community. Probably Genetic's no-cost genetic testing program for pediatric epilepsy disorders is patient-initiated and includes genetic counseling. Sample collection kits are mailed to homes and results delivered in 6-8 weeks.
• The MatrixcoreTechnology or IntegrationThe Matrix is conducting a Natural History Study for SLC6A1 Connect. Data is collected through surveys completed by patients, parents, and caregivers, with optional medical record uploads. SLC6A1 Connect refers all families worldwide to participate. The platform supports multiple languages (English, Spanish, French, Italian, Korean, Portuguese, German, Hebrew).
• Simons SearchlightcoreTechnology or IntegrationSimons Searchlight collects survey data from SLC6A1 families, which is shared with researchers studying the condition. Gift cards are provided to families for completing surveys, incentivizing participation in this natural history data collection initiative.
• Citizen HealthmajorTechnology or IntegrationCitizen Health partners with SLC6A1 Connect to use health data to improve care and drive research toward treatments and a cure for SLC6A1. The platform provides a free service for families to retrieve, store, and share medical records. Sign-up takes approximately 10 minutes.
• Milestones for MaxwellminorGTM or Marketing PartnerMilestones for Maxwell is a related fundraising and awareness initiative for Maxwell Freed, SLC6A1 Connect founder Amber Freed's son. It has been featured alongside SLC6A1 Connect in media coverage including People Magazine, CNBC, and other outlets.

Scale indicators5 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• STXBP1 Foundation: Parent-led rare disease nonprofit funding STXBP1-related disorder research. Closest direct peer — same ultra-rare neurodevelopmental epilepsy gene, same patient advocacy + research funding model, overlapping scientific community and registry infrastructure.
• SCN2A Foundation: Parent-led advocacy nonprofit for SCN2A-related disorders, another ion channel gene causing epilepsy and neurodevelopmental disability. Highly comparable structure: small team, family-led, funds gene therapy and translational research, runs annual family/scientific conference.
• KIF1A.ORG: Parent-founded rare neurological disease nonprofit for KIF1A-associated neurological disorder. Similar model: parent-led, disease-specific, funds gene therapy research, builds patient registries, hosts community conferences.
• Dravet Syndrome Foundation: Established rare epilepsy patient advocacy nonprofit funding research into Dravet syndrome (SCN1A). Closely comparable mission and operating model; broader funding base and longer track record make it a more mature analog of SLC6A1 Connect's playbook.
• SynGAP Research Fund: Parent-driven rare neurodevelopmental disorder advocacy organization funding SynGAP1 research. Same community-led GTM, same gene therapy translational focus, same patient registry and annual convening model.
• Phelan-McDermid Syndrome Foundation: Parent-led rare genetic disorder advocacy nonprofit funding SHANK3-related research. Comparable operating model — family-founded, research-focused, hosts annual family/scientific conference, maintains patient registry infrastructure.

Broad incumbents

• Cure SMA: Large, established rare disease nonprofit that catalyzed Spinraza/Zolgensma approvals for spinal muscular atrophy. Broader and more mature analog demonstrating the strategic trajectory a successful rare disease parent-led org can take from advocacy to curative therapy.
• Parent Project Muscular Dystrophy: Mature parent-led rare disease advocacy nonprofit funding Duchenne muscular dystrophy research. Demonstrates the scaled version of the SLC6A1 Connect playbook — research grant funding, family support, policy advocacy, annual conference, and clinical trial ecosystem building.
• International Rett Syndrome Foundation: Established rare neurodevelopmental disorder nonprofit funding MECP2-related research. Comparable mission (genetic neurological condition, family-led, research grants, registry) at significantly larger scale.

Emerging players

• CombinedBrain: Nonprofit consortium of patient advocacy organizations pooling resources to accelerate neurodevelopmental disorder therapies. Direct partner of SLC6A1 Connect and a structural peer in the shared neurogenetic advocacy ecosystem; a potential scaling vehicle for SLC6A1's research assets.

Market position

Strengths1 record

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UCc_10FuNA4w72faofqOIX-Q
• Facebookfacebook.com/SLC6A1
• LinkedInlinkedin.com/company/slc6a1connect
• Instagraminstagram.com/slc6a1_connect

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about SLC6A1 Connect