SATB2 Gene Foundation
The SATB2 Gene Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports families affected by SATB2-associated syndrome through peer-led family support networks, clinical and iPSC biobank research infrastructure, multilingual educational resources, and biennial medical conferences across an international partner network.
- Company typePrivate
- Founded2012
- HeadquartersLilburn, United States
- Headcount—
- GTM typeB2C
- OfferingServices
What SATB2 Gene Foundation does
The SATB2 Gene Foundation, Inc. is a 501(c)(3) nonprofit patient advocacy organization established to support families affected by SATB2-associated syndrome (SAS), a rare neurodevelopmental disorder caused by variants in the SATB2 gene on chromosome 2q33.1. Headquartered in Lilburn, Georgia, the foundation operates with a small staff (2 employees) supported by an 11-member volunteer Board of Directors and a 6-member Medical and Scientific Advisory Board. Its mission is delivered through three coordinated program areas: family support (regional support network, Facebook community, virtual meetups, biennial conferences, iPad/AAC communication grants); research infrastructure (a SAS Clinical Registry at Arkansas Children's Hospital with over 200 enrolled families, and an iPSC biobank of 8 patient and control cell lines distributed to academic researchers via Material Transfer Agreement); and education (multilingual information sheets in 17 languages plus symptom-specific clinical guides).
The foundation generates revenue from tax-deductible individual donations, research grants, merchandise sales, and conference sponsorships ranging from $250 (Friend) to $10,000 (Platinum). It maintains an international network of seven national partner organizations across Australia/New Zealand, Europe, France, Italy, Netherlands/Belgium, Spain, and the UK, and is a member of Global Genes, NORD, and COMBINEDBrain. From 2019 to 2025 it distributed over $150,000 in research grants to investigators studying SATB2 function and therapeutic interventions. In June 2025 the foundation hired its first Executive Director, Susan Comparato, marking the transition to professional management while Founder/President Allison Kaczenski continues in a leadership role. The organization does not generate commercial revenue from its patient-facing services, which are provided free of charge.
SATB2 Gene Foundation firmographics
Firmographics- Name
- SATB2 Gene Foundation
- Legal name
- SATB2 Gene Foundation, Inc.
- Website
- https://satb2gene.org
- Company type
- Private
- Founded year
- 2012
- Operating status
- Operating
- Short description
- The SATB2 Gene Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports families affected by SATB2-associated syndrome through peer-led family support networks, clinical and iPSC biobank research infrastructure, multilingual educational resources, and biennial medical conferences across an international partner network.
- Ownership category
- akta.pro rank
SATB2 Gene Foundation industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Voluntary Health Organizations (813212), Individual and Family Services (6241), Child and Youth Services (62411)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
- akta.pro secondary industries
- Disability Services & Independent Living Support (BPAGACAG), Family & Parenting Support Services (BPAGAEAC)
Keywords
Where SATB2 Gene Foundation is headquartered
LocationHeadquarters
- HQ city
- Lilburn
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
SATB2 Gene Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Charitable Contributions: Tax-deductible donations from individuals, families, and supporters. The foundation is a 501(c)(3) nonprofit organization with EIN 82-3474637. Donations can be made one-time, monthly, quarterly, or annually through the website or PayPal.
- Grant Funding: Research grants awarded to academic institutions and researchers studying SATB2-associated syndrome. Also received grants from organizations like Global Genes ($12,500 COVID-19 Continuity of Care grant) and GPD Employee's Foundation for iPad communication grants.
- Merchandise Sales: Sale of awareness products including apparel (sweatshirts, t-shirts), accessories (hats, ornaments), and yard signs through the organization's shop to raise awareness and funds.
- Conference Sponsorships: Corporate sponsorships for the biennial SATB2-Associated Syndrome Family & Medical Conference, with sponsorship tiers ranging from $250 (Friend) to $10,000 (Platinum), providing recognition and marketing benefits to sponsors.
Go-to-market motion3 records
Distribution channels4 records
Marketing channels9 records
SATB2 Gene Foundation product offering
Product offeringCore offering
The SATB2 Gene Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports families of individuals with SATB2-Associated Syndrome (SAS), also known as Glass Syndrome, a rare neurodevelopmental disorder caused by alterations in the SATB2 gene on chromosome 2q33.1. The Foundation delivers peer-led family support programs, multilingual educational resources, a patient-derived iPSC stem cell biobank for research, a clinical registry, research grant funding, biennial conferences, and awareness merchandise, all provided free of charge to families.
Product overview
The SATB2 Gene Foundation operates as a non-profit patient advocacy organization offering a coordinated suite of support services, educational resources, and research programs for families affected by SATB2-associated syndrome. The core offerings include the Contact Registry & Resource Portal for family enrollment and resource access, a Family Support Network with regional representatives and Facebook-based peer communities, and grant programs providing iPads with AAC communication apps to qualifying US families. On the research front, the Foundation maintains an iPSC Biobank with patient-derived stem cell lines available to qualified researchers and supports a Clinical Registry at Arkansas Children's Hospital. Educational resources span multilingual information sheets (available in 15+ languages), symptom-specific guides covering communication, bone health, behavior, dental health, and nutrition, plus a library of medical information videos. The Foundation organizes recurring events including biennial Family & Medical Conferences, annual SATB2 Awareness Day (August 22), and Pediatric Multidisciplinary Clinics at Arkansas Children's Hospital. A research grant program funds investigator-initiated studies on SATB2-related topics, while an online shop offers awareness merchandise.
Differentiator
Problem solved
Functional benefit
Products and services
- Family Support Network
Quantifiable outcome
- Over 200 families enrolled in the SAS Clinical Registry to support natural history research
- +3 more outcomes
Companies that use SATB2 Gene Foundation
Customer profileNamed customers2 records
Segments3 records
Ideal customer profiles3 records
SATB2 Gene Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
SATB2 Gene Foundation partnerships and signals
Strategic signalPartnerships
13 partnerships are on record, tiered core and minor.
- Global Genes Foundation AlliancecoreThe SATB2 Gene Foundation is a proud member of Global Genes Foundation Alliance, an organization advocating for and partnering with those affected by rare diseases. Global Genes connects, empowers, and inspires the rare disease community with the goal of eliminating daily challenges for 1 in 10 people affected by rare disease globally.
- COMBINEDBraincoreCOMBINEDBrain (Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders) is a consortium led by patient advocacy foundations working with clinicians, researchers, and pharmaceutical firms to speed the path to clinical treatments for severe rare genetic non-verbal neurodevelopmental disorders by pooling efforts, studies, and data.
- National Organization for Rare Disorders (NORD)coreNORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. With more than 300 patient organization members, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
- Rx4GoodminorRx4Good helps deliver on the promise to put patients first by thoughtfully integrating the patient perspective into work, culture, processes, business decisions, and program activities to improve patient outcomes and support business goals.
- SATB2 Connect (Australia, New Zealand, Asia Pacific)coreInternational partner for families in Australia, New Zealand, and Asia Pacific region. Led by Dalal D Baumgartner, providing localized support and resources for families in these regions.
- SATB2 EuropecoreInternational partner for families in Europe, led by President Erika Stariha. Provides regional support and advocacy for European families affected by SATB2-associated syndrome.
- Association Francaise Du SATB2 (France)coreFrench national partner organization for families in France, led by Camille Gobin. Provides localized French-language support and resources.
- SATB2 Italia Associazione Onlus (Italy)coreItalian national partner organization led by President Francesco Maule. Provides localized Italian-language support and advocacy for Italian families.
- SATB2 Stichting Nederland en Belgie (Netherlands and Belgium)coreDutch/Belgian regional partner organization led by Chairperson Ivana Agatonovic. Provides localized Dutch-language support for families in the Benelux region.
- Asociación SATB2 España-SAS (Spain)coreSpanish national partner organization led by President María Gurrea López. Provides localized Spanish-language support and resources for Spanish families.
- SATB2 Gene Trust UKcoreUK national partner organization led by Chair Maria Walters. Provides localized UK-based support and advocacy for British families affected by SATB2-associated syndrome.
- Arkansas Children's Hospital / University of KentuckycoreDr. Yuri Zarate at Arkansas Children's Hospital leads the SAS Clinical Registry and hosts the only dedicated pediatric multidisciplinary SAS clinic in the United States. Collaboration supports research initiatives and patient care.
- Children's Medical Research InstitutecoreProfessor Leszek Lisowski leads a gene therapy proof-of-concept study using donor-funded iPSC lines created through the foundation's community. Project aims to validate AAV-based gene therapy approach for SATB2-Associated Syndrome.
Scale indicators5 records
Recent moves6 records
Expansion highlights6 records
SATB2 Gene Foundation competitors and assessment
Company assessmentDirect peers
- Phelan-McDermid Syndrome Foundation: Disease-specific patient advocacy foundation supporting families affected by Phelan-McDermid Syndrome, a rare neurodevelopmental disorder. Directly comparable organizational model with family support network, research grant program, clinical registry, and biennial family conferences.
- Angelman Syndrome Foundation: Patient advocacy organization for Angelman Syndrome, a rare neurodevelopmental disorder. Comparable structure with family support, research grants, clinical registry, scientific advisory board, and biennial family/research conferences.
- Rett Syndrome Research Trust: Focused research and advocacy organization for Rett Syndrome. Comparable model combining family support, research grant funding, and active drug development pipeline partnerships.
- Dup15q Alliance: Advocacy foundation for Dup15q syndrome, a rare chromosomal disorder causing neurodevelopmental disabilities. Comparable structure with family support network, clinical registry, research grants, and family conferences.
- CDKL5 Deficiency Disorder Foundation: Patient advocacy foundation for CDKL5 Deficiency Disorder, a rare genetic neurodevelopmental disorder. Comparable structure with family support programs, research grant funding, clinical registry, and multidisciplinary clinic partnerships.
- Pitt Hopkins Research Foundation: Disease-specific foundation for Pitt-Hopkins Syndrome, a rare neurodevelopmental disorder. Comparable structure combining family support, research grants, registry, and active therapeutic development pipeline.
- Smith-Magenis Syndrome Foundation: Patient advocacy foundation for Smith-Magenis Syndrome, a rare genetic neurodevelopmental disorder. Comparable structure with family support network, research grants, biennial conferences, and multidisciplinary clinic partnerships.
- FOXP1 Foundation: Family-led foundation supporting individuals with FOXP1 syndrome, a rare neurodevelopmental disorder. Comparable parent-driven structure with peer support, research funding, and registry development.
Broad incumbents
- Global Genes: Large rare disease advocacy umbrella organization that the SATB2 Gene Foundation is a member of. Provides infrastructure, grants, and cross-disease advocacy resources for disease-specific foundations.
- National Organization for Rare Disorders (NORD): Largest US rare disease patient advocacy organization with 300+ member organizations. SATB2 Gene Foundation is a member. Comparable advocacy mission but operates at scale across all rare diseases rather than focusing on one condition.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
SATB2 Gene Foundation social profiles
Digital presenceSATB2 Gene Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
SATB2 Gene Foundation leadership team
Management profileNumber of profiles
Profiles19 records
SATB2 Gene Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
SATB2 Gene Foundation M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about SATB2 Gene Foundation
What does SATB2 Gene Foundation do?
The SATB2 Gene Foundation is a 501(c)(3) nonprofit patient advocacy organization that supports families of individuals with SATB2-Associated Syndrome (SAS), also known as Glass Syndrome, a rare neurodevelopmental disorder caused by alterations in the SATB2 gene on chromosome 2q33.1. The Foundation delivers peer-led family support programs, multilingual educational resources, a patient-derived iPSC stem cell biobank for research, a clinical registry, research grant funding, biennial conferences, and awareness merchandise, all provided free of charge to families.
Is SATB2 Gene Foundation a public or private company?
SATB2 Gene Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was SATB2 Gene Foundation founded?
SATB2 Gene Foundation was founded in 2012.
Where is SATB2 Gene Foundation based?
SATB2 Gene Foundation is headquartered in Lilburn, United States, in the North America region.
How does SATB2 Gene Foundation make money?
Four revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are grant Funding, merchandise Sales and conference Sponsorships.
Who are SATB2 Gene Foundation's main competitors?
Direct peers on record are Phelan-McDermid Syndrome Foundation, Angelman Syndrome Foundation, Rett Syndrome Research Trust, Dup15q Alliance, CDKL5 Deficiency Disorder Foundation, Pitt Hopkins Research Foundation, Smith-Magenis Syndrome Foundation and FOXP1 Foundation. Broad incumbents are Global Genes and National Organization for Rare Disorders (NORD).
Does SATB2 Gene Foundation have an API?
No public API is recorded for SATB2 Gene Foundation.
What industry is SATB2 Gene Foundation in?
SATB2 Gene Foundation's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS), with a secondary code of BPAGACAG, Disability Services & Independent Living Support. Its NAICS code is 813212 and its SIC code is 8300.