ZTTK SON-Shine Foundation

What ZTTK SON-Shine Foundation does

The ZTTK SON-Shine Foundation is a 501(c)(3) nonprofit patient advocacy organization founded in 2021 by parents of children affected by ZTTK syndrome, an ultrarare neurodevelopmental disorder caused by mutations on the SON gene. The foundation is the only organization exclusively dedicated to ZTTK syndrome and operates with a 5-person staff from a mailing address in New York, NY (EIN 86-1926609). Its mission is to accelerate research toward treatments and a cure while supporting the global ZTTK patient community of 300+ identified families across 12+ countries.

The foundation's core programs fall into three pillars: research funding, patient data infrastructure, and community support. Research activities are anchored by Primary Researcher Dr. Erin Ahn (University of Alabama at Birmingham), one of the original discoverers of ZTTK syndrome, and include the development of iPSC stem cell models with isogenic controls, mouse models, and preclinical proof-of-concept work across gene replacement therapy, antisense oligonucleotide (ASO) therapy, gene modulating small molecules, and small molecule repurposing screens. Patient data infrastructure is built on partnerships with Citizen Health (US natural history data) and Rare-X (global patient-reported surveys in English, French, Spanish, and Portuguese), enabling comprehensive medical record collection and supporting clinical trial design and FDA IND filings. Community programs include the annual Global Community Conference (180+ attendees at the inaugural 2025 event), 12+ international ambassadors, a published ZTTK GeneReview on NCBI, and a co-developed Standard of Care Considerations document.

The foundation's revenue model is donation- and grant-based: an $800,000 five-year grant from the Chan Zuckerberg Initiative's Rare As One project (awarded October 2024) represents the largest disclosed funding source, supplemented by individual donations (check, wire, DAF, stock), peer-to-peer fundraising, and merchandise sales via Bonfire and Spreadshop. It does not sell commercial products or services, and all engagement with patients and families is free. Key strategic alliances include ICON plc for clinical trial readiness, Unravel Biosciences for biotech partnership development, and rare disease advocacy organizations CombinedBrain, EveryLife Foundation, and the Rare Epilepsy Network.

Name

ZTTK SON-Shine Foundation

Legal name

ZTTK SON-Shine Foundation

Website

https://zttk.org

Company type

Private

Founded year

2021

Operating status

Operating

Headcount range

1–10 employees

Short description

The ZTTK SON-Shine Foundation is a 501(c)(3) nonprofit founded in 2021 that accelerates research and supports the global community for ZTTK syndrome, an ultrarare neurodevelopmental disorder. It funds iPSC and gene therapy research, operates natural history data platforms, and serves 300+ patient families across 12+ countries.

Ownership category

akta.pro rank

Product category

Rare Disease Patient Advocacy and Research Foundation

NAICS

Individual and Family Services (6241), Child and Youth Services (624110), Research and Development in Biotechnology (except Nanobiotechnology) (541714), Scientific Research and Development Services (5417)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090), Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

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

akta.pro secondary industries

Neurogenetics & Rare Neurologic Diseases (HLAKAIAO), Rare Pediatric & Congenital Disorder Therapies (HLAIAIAN), Neurodevelopmental & Behavioral Therapy Platforms (ADHD/Autism/Behavioral Coaching) (HLALAEAJ)

Keywords

• Patient advocacy services
• Rare disease research
• Natural history studies
• Patient registry programs
• Clinical care resources

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Fundraising: The foundation receives donations from individuals, families, and supporters. One-time and recurring donation options available online. Donations can be made via check, wire transfer, Donor Advised Fund (DAF), and stock donations.
2. Grants: Major grant funding including $800,000 five-year grant from Chan Zuckerberg Initiative Rare As One project. Foundation also seeks other research and operational grants.
3. Merchandise Sales: ZTTK merchandise (t-shirts, accessories) sold through spreadshop and Bonfire platforms. A portion of proceeds goes directly to the foundation.

Go-to-market motion3 records

Distribution channels3 records

Marketing channels7 records

Core offering

The ZTTK SON-Shine Foundation is a 501(c)(3) nonprofit patient advocacy organization dedicated to ZTTK syndrome, an ultrarare neurodevelopmental disorder caused by mutations on the SON gene. The foundation funds scientific research (iPSC cell models, mouse models, gene therapy, ASO therapy, drug repurposing), builds a global patient community of 300+ families across 12+ countries through ambassadors and an annual conference, and operates patient data collection programs with Citizen Health and Rare-X. It provides clinical care resources including the ZTTK GeneReview on NCBI and Standard of Care Considerations, and raises awareness through events such as the NYSE Opening Bell ceremony.

Product overview

The ZTTK SON-Shine Foundation is a 501(c)(3) nonprofit patient advocacy organization, not a technology product company. Its offerings consist of patient-centered programs and services including: data collection partnerships with Citizen Health and Rare-X for natural history studies; clinical care resources including the ZTTK GeneReview (published on NCBI) and Standard of Care Considerations document; an annual Global Community Conference program; and community support resources including the Connected Care Network, Unite Us referral service, and Courageous Parents Network. The foundation also maintains a research roadmap focused on iPSC cell models, mouse models, drug repurposing screens, and gene therapy preclinical work.

Differentiator

Problem solved

Functional benefit

Products and services

• Citizen Health Natural History Study Program

Quantifiable outcome

• 300+ patients identified in foundation community vs ~80 in scientific literature
• +3 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles4 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• Citizen HealthcoreStrategic or Co-development PartnerPartnership to collect natural history data from US-based patients. Citizen Health enables patients to contribute their medical records to a secure digital profile and opt to share de-identified data for research. Platform collects comprehensive medical history to support clinical trial design and FDA IND filings.
• Rare-XcoreStrategic or Co-development PartnerGlobal data collection partnership for both US and international families. Rare-X provides a collaborative platform for patient/caregiver self-reported survey data across all body systems. Available in English, French, Spanish, and Portuguese. Includes genetic report upload and genetic counselor review.
• CombinedBrainminorStrategic or Co-development PartnerNonprofit partner focused on accelerating treatments for neurodevelopmental disorders. Logo appears on foundation's partner page.
• EveryLife FoundationminorStrategic or Co-development PartnerRare disease advocacy organization. Logo appears on foundation's partner page supporting rare disease community initiatives.
• Rare Epilepsy Network (REN)minorStrategic or Co-development PartnerNetwork connecting rare epilepsy organizations and patients. ZTTK is a rare neurodevelopmental condition that can include seizures.
• ICON plcminorStrategic or Co-development PartnerHealthcare intelligence organization providing clinical trial readiness support. Pat Koochaki from ICON presented on building ZTTK disease concept model and clinical trial readiness at 2025 and 2026 conferences.
• Unravel BiosciencesminorStrategic or Co-development PartnerBiotech company focused on rare disease drug development. CEO Richard Novak participated in research panel at 2025 conference discussing patient-biotech partnerships.
• Connected Care NetworkminorStrategic or Co-development PartnerFree family support organization offering emotional and practical support for parents of children with neurology disorders. ZTTK families referred to this resource.
• Unite UsminorStrategic or Co-development PartnerService referring families to state-specific resources (food/housing assistance, medical support). Foundation maintains subscription for ZTTK families.

Scale indicators5 records

Recent moves6 records

Expansion highlights6 records

Broad incumbents

• National Organization for Rare Disorders (NORD): NORD is the largest US umbrella advocacy organization for rare diseases, offering grants, advocacy, and infrastructure that disease-specific foundations like ZTTK SON-Shine plug into. Comparable advocacy mission but vastly larger scope.
• EveryLife Foundation: EveryLife Foundation is a rare disease policy advocacy nonprofit — ZTTK SON-Shine lists it as a partner. Comparable mission of advancing rare disease treatments, but operates at policy/advocacy level across all rare diseases rather than disease-specific.

Direct peers

• Rett Syndrome Research Trust: RSRT funds translational research for a rare neurodevelopmental disorder (Rett syndrome), runs a scientific agenda, and partners with biotech/pharma. Directly comparable because both target rare neurodevelopmental disorders with parent-led foundations.
• KIF1A.org: KIF1A.org is a parent-led rare neurological disease foundation funding research and building patient data infrastructure for an ultrarare single-gene disorder. Comparable disease-specific research and community model.
• ADNPkids Research Foundation: ADNPkids is a small parent-led foundation supporting research for an ultrarare neurodevelopmental disorder caused by a single gene. Comparable scale, structure, and single-gene-disease research roadmap.
• Bohring-Opitz Syndrome Foundation: Parent-led nonprofit for an ultrarare genetic syndrome funding research and supporting families globally. Comparable small patient population, similar community-driven operating model.
• Parent Project Muscular Dystrophy: PPMD is a parent-founded nonprofit that funds Duchenne muscular dystrophy research, operates patient registries, and drives drug development partnerships. Closely comparable structure: small staff, parent leadership, gene-specific research roadmap, biotech partnership model.
• CombinedBrain: CombinedBrain is a nonprofit consortium accelerating treatments for rare neurodevelopmental disorders — ZTTK SON-Shine Foundation lists it as an active partner. Closely aligned mission and similar-size nonprofit peer.
• Phelan-McDermid Syndrome Foundation: PMSF is a parent-led foundation for an ultrarare genetic neurodevelopmental disorder that funds research, maintains registries, and runs family conferences. Highly analogous model for a similarly small patient population.
• CURE SMA: CURE SMA is a disease-specific 501(c)(3) patient foundation for spinal muscular atrophy that funds research, maintains patient registries, and runs annual conferences. Highly comparable operating model (community-led, donor-funded, research-driven) for an ultrarare genetic disease.

Market position

Strengths5 records

Weaknesses4 records

Competitive moat5 records

Key risks5 records

Key highlights6 records

Customer concentration

• Facebookfacebook.com/1671807819728213
• LinkedInlinkedin.com/company/zttk

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about ZTTK SON-Shine Foundation