ADNP Kids Research Foundation

What ADNP Kids Research Foundation does

ADNP Kids Research Foundation is a US-registered 501(c)(3) nonprofit founded in 2016 and headquartered in Brush Prairie, Washington. It is the largest worldwide support and research organization dedicated to ADNP Syndrome (Helsmoortel-VanDerAa Syndrome), a rare pediatric neurodevelopmental disorder caused by mutations in the ADNP gene. The foundation operates an international patient registry and natural history study (400+ enrolled children across the US, Brazil, UK, Dubai, and beyond), maintains a biorepository of patient-derived blood and fibroblast samples, supports iPSC lines and ADNP animal models housed at partner institutions, and funds research grants across multiple therapeutic modalities. It is entirely volunteer-run, with no paid staff, and is led by founder Sandra Bedrosian Sermone.

The foundation's core products and services comprise the ADNP Patient Registry and Natural History Study, a contact registry, the "ADNP Assets" research infrastructure (biorepository, iPSC lines, mouse and zebrafish models), branded merchandise (ADNP Store), and the annual virtual Warrior Fun Run fundraising event. Underlying technology includes a HIPAA-compliant Survey Monkey-hosted registry platform and patient-derived biological assays at partner labs. The foundation has funneled nearly $2 million since 2016 into research, including the first FDA-approved clinical trial for ADNP Syndrome (low-dose ketamine, Phase 2A at Mount Sinai, IND #147201), a $4 million gene therapy program at UC Davis MIND Institute, the RareBase high-throughput AI drug screening project, and CP201/davunetide development with Coronis Neurosciences.

Revenue is generated entirely through individual donations, grassroots fundraising events, corporate sponsorships (Warrior Fun Run tiers from $500 Bronze to $10,000 Platinum), branded merchandise sales, and third-party community fundraisers. The foundation uses no government grants and operates on a community-led, event-driven go-to-market model. Customer segments are: (1) families of children with ADNP Syndrome (primary), (2) academic and industry researchers (Mount Sinai, UC Davis, Tel Aviv University, University of Antwerp, Rumi Scientific, RareBase), and (3) individual donors and corporate sponsors. Leadership includes Founder/CEO/President Sandra Bedrosian Sermone, CSO Matt Davis, and Vice President Genie Egerton-Warburton.

Name

ADNP Kids Research Foundation

Legal name

The ADNP Kids Research Foundation

Website

https://adnpfoundation.org

Company type

Private

Founded year

2016

Operating status

Operating

Headcount range

1–10 employees

Short description

ADNP Kids Research Foundation is a volunteer-run US 501(c)(3) nonprofit that funds ADNP Syndrome research and supports affected families through a global patient registry, biorepository, and funded clinical trials at Mount Sinai and UC Davis.

Ownership category

akta.pro rank

Product category

Rare Disease Research Foundation

NAICS

Voluntary Health Organizations (813212), Child and Youth Services (62411)

SIC

Services-Social Services (8300)

akta.pro primary industry

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

akta.pro secondary industries

Developmental Therapy / Early Childhood Special Instruction (EDACAFAG), Maternal, Child & Family Health Program Funding (HLAJALAG)

Keywords

• Rare disease research
• Patient registry services
• Genetic disorder foundation
• Biomarker discovery research
• Family advocacy support

Headquarters

HQ city

Brush Prairie

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

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

Revenue model

1. Individual Donations: Tax-deductible charitable donations from individuals, primarily families and friends of children with ADNP syndrome. Donations are collected via PayPal, credit card, check, and QR code. This is the primary revenue stream for a fully volunteer-run organization.
2. Grassroots Fundraising Events: The foundation organizes and participates in community fundraising events including the annual virtual Warrior Fun Run, third-party fundraisers hosted by supporters, and social media crowdfunding campaigns. These events generate the majority of research funding.
3. Corporate Sponsorships: Corporate sponsors purchase sponsorship packages (Platinum $10,000, Gold $5,000, Silver $1,000, Bronze $500) for the Warrior Fun Run event, receiving logo placement, social media promotion, and complimentary race entries. Sponsors also include conference sponsors (Prevention Genetics, GeneDx, Summer Neuro-peptide Conference Group, Diana Sermone Family Trust for the 2019 UCLA conference).
4. Merchandise Sales (ADNP Store): The foundation operates an online store (ADNPkids.myspreadshop.com and shop.spreadshirt.com/adnpkids) selling branded merchandise such as t-shirts and stickers, with proceeds supporting the foundation's mission.

Go-to-market motion2 records

Distribution channels3 records

Marketing channels9 records

Core offering

ADNP Kids Research Foundation is a 501(c)(3) nonprofit foundation that advances research and supports families affected by ADNP Syndrome (Activity-Dependent Neuroprotector Homeobox gene mutations), also known as Helsmoortel-Van Der Aa Syndrome. The foundation operates a patient registry and natural history study, maintains a biorepository of biological samples and research models (iPSC lines and animal models), funds biomarker discovery and clinical trials, and runs family and scientific conferences.

Product overview

The ADNP Kids Research Foundation operates as a non-profit research organization focused on advancing research for ADNP syndrome, a rare neurodevelopmental and autism-related genetic disorder. The foundation's primary offerings include: an ADNP Patient Registry and Natural History Study for research data collection; the ADNP Kids Research Foundation Website for information dissemination; the Warrior Fun Run annual fundraising event; the ADNP STORE merchandise operation; the Contact Registry for patient outreach; and funding of research programs including the groundbreaking low-dose ketamine drug trial in partnership with Mount Sinai's Seaver Autism Center. The foundation is entirely volunteer-run by parents and family members of children with ADNP syndrome.

Differentiator

Problem solved

Functional benefit

Products and services

• ADNP Patient Registry and Natural History Study A longitudinal patient registry and natural history study that collects clinical and biological data from individuals with ADNP Syndrome to support research and clinical trial readiness. Intended for families of individuals diagnosed with ADNP Syndrome and researchers studying the disorder.
• Contact Registry A contact registry maintained by the foundation to engage ADNP Syndrome families, share research updates, and recruit participants for studies and clinical trials.
• ADNP Assets Biorepository A biorepository program that provides ADNP-related biological research assets, including iPSC lines and animal models, to academic and industry researchers.
• Warrior Fun Run A foundation-hosted awareness and fundraising run event organized to support ADNP Syndrome research and family programs.
• ADNP Family Conference and Scientific Symposium An annual event that brings together ADNP Syndrome families, clinicians, and researchers to share research progress, clinical updates, and community support.
• ADNP Store An online store selling ADNP Syndrome awareness merchandise and apparel, with proceeds supporting the foundation's research and family programs.

Quantifiable outcome

• Nearly $2 million in research funding contributed since 2016, making the foundation the largest financial contributor to ADNP research worldwide
• +3 more outcomes

Named customers1 record

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature3 records

Partnerships

16 partnerships are on record, tiered core / flagship, major, supporting and minor.

• Rumi Scientificcore / flagshipStrategic or Co-development Partner · 7 January 2021A drug discovery company partnered with Mount Sinai's Seaver Autism Center and selected by the foundation as one of 3 genes (including ADNP) for a partnership to produce human neural cell organoids and build a mid-throughput drug screening platform. Rumi Scientific uses technology developed at Rockefeller University to create tissue cultures expressing specific genetic mutations. This partnership aims to advance precision medicine for developmental disorders like autism.
• Mount Sinai Icahn School of Medicine — Seaver Autism Center for Research and Treatmentcore / flagshipStrategic or Co-development PartnerThe foundation's primary research partner, conducting the first-ever FDA clinical trial for ADNP Syndrome (low-dose ketamine, Phase 2A). The Seaver Center, led by Dr. Joseph Buxbaum (Director) and Dr. Alex Kolevzon (Clinical Director/Principal Investigator), provides patient-derived stem cells, conducts clinical trials, performs biomarker research, and is the foremost expert clinical center for ADNP syndrome globally. The foundation fully funded Phase 2A of the ketamine trial and maintains an ongoing research partnership for multiple therapeutic programs.
• UC Davis MIND Institute (University of California Davis)core / flagshipStrategic or Co-development PartnerUC Davis MIND Institute, led by Dr. Kyle Fink (and the Ben-Shalom, Silverman, Segal labs), is conducting a $4 million gene therapy research program for ADNP Syndrome. The foundation funds this collaboration. Work includes developing targeted genetic therapies using ADNP mouse models and iPSC-derived neurons on microelectrode arrays, with pilot data showing promising rescue of neuronal phenotypes following treatment.
• RareBase (FUNCTION Project)core / flagshipTechnology or IntegrationThe foundation contracted RareBase for a high-throughput drug screening project using ADNP neuronal cell lines and AI to identify therapeutic small molecules. Phase 1 identified over 100 possible treatments; Phase 2 ($150,000, initiated October) is testing the top 25 candidates for concentration response confirmation in ADNP neuronal models. Molecular phenotyping for electrophysiological biomarkers is also underway.
• Tel Aviv University (Prof. Illana Gozes Laboratory)majorStrategic or Co-development PartnerProf. Illana Gozes at Tel Aviv University discovered the ADNP gene and NAP peptide (CP201/davunetide). Her lab developed the first ADNP-deficient mouse model and continues ADNP research including drug development through Coronis Neurosciences. She serves as Chief Scientific Officer of Coronis Neurosciences. The foundation collaborates on biomarker research (premature tooth eruption published in Nature Translational Psychiatry) and CP201 clinical development.
• University of Washington (Bernier Lab — Dr. Anne Arnett)majorStrategic or Co-development PartnerThe Bernier Lab at University of Washington, led by Dr. Raphael Bernier, conducted foundational TIGER study and phenotype research on ADNP Syndrome. Dr. Anne Arnett presented at the 2019 UCLA conference on ADNP phenotype research. The lab contributes to international ADNP research collaborations with the foundation.
• University of Antwerp (Prof. Frank Kooy)majorStrategic or Co-development PartnerProf. Frank Kooy at the University of Antwerp in Belgium co-discovered ADNP as a frequent de novo autism-related gene and maintains an ADNP patient cohort and mouse model. He co-authored the p.Tyr719* case study publication and collaborates with the foundation on international ADNP research.
• John Carroll University (Dr. Thomas Frazier)majorStrategic or Co-development PartnerDr. Thomas Frazier, Professor of Psychology at John Carroll University and Chief Science Officer of Autism Speaks, is leading the NET (Neurobehavioral Evaluation Tool) study funded by PTEN Research, Autism Speaks, and with a partial grant from the ADNP Kids Research Foundation. The study also includes Malan Syndrome Foundation and SYNGAP Research Fund, and aims to develop a validated neurobehavioral assessment tool for clinical trials specific to genetic neurodevelopmental disorders including ADNP Syndrome.
• GeneDxsupportingTechnology or IntegrationGeneDx is listed as a recommended genetic testing laboratory for ADNP Syndrome diagnosis. Their Whole Exome Sequencing, Autism/Intellectual Disability Xpanded Panel, and EpiXpanded panel can identify ADNP mutations. The company sponsored the 2019 UCLA ADNP Family Conference.
• Ambry GeneticssupportingTechnology or IntegrationAmbry Genetics is listed as a recommended US-based genetic testing laboratory for ADNP Syndrome diagnosis. Their multiple genetic panels can identify ADNP mutations and are used at academic and children's hospitals.
• Autism SpeaksmajorGTM or Marketing PartnerSandra Sermone serves as a Legislative Advocacy Ambassador and Community Advisory Committee Member for Autism Speaks. The foundation collaborates with Autism Speaks on awareness campaigns, research advocacy, and is a co-funder of the NET study with Dr. Thomas Frazier. Autism Speaks provides primary funding for the NET neurobehavioral evaluation tool study.
• Simons Foundation SPARKsupportingGTM or Marketing PartnerSandra Sermone serves on the Community Advisory Committee of Simons Foundation SPARK for Autism. The foundation collaborates with SPARK to spread awareness of ADNP Syndrome as a genetic cause of autism and to direct families to genetic testing.
• National Organization for Rare Disorders (NORD)supportingGTM or Marketing PartnerSandra Sermone serves as RAN (Rare Action Network) Washington State Co-Ambassador for NORD. The foundation is listed on NORD's rare disease database and collaborates on rare disease advocacy and awareness initiatives.
• Global GenessupportingGTM or Marketing PartnerThe foundation collaborates with Global Genes, a rare disease advocacy organization, to raise global awareness of ADNP Syndrome and connect with the broader rare disease community.
• Uplifting Athletes (#WeTackleRare)minorGTM or Marketing PartnerThe foundation partnered with Uplifting Athletes for the NFL 'My Cleats My Cause' campaign, where Seattle Seahawks NFL player Malik Turner wore custom cleats honoring an ADNP warrior child to raise rare disease awareness.
• PreventionGeneticsminorGTM or Marketing PartnerPreventionGenetics was one of four sponsors of the first ADNP Family Conference and Scientific Symposium held at UCLA in November 2019.

Scale indicators6 records

Recent moves6 records

Expansion highlights12 records

Direct peers

• Phelan-McDermid Syndrome Foundation: Family-led nonprofit funding research for Phelan-McDermid Syndrome, a rare genetic neurodevelopmental disorder. Comparable in operating model: volunteer-driven research foundation supporting patient registries, natural history studies, and therapeutic development for a pediatric rare disease.
• Rett Syndrome Research Trust: Disease-specific research foundation for Rett Syndrome, another rare genetic neurodevelopmental disorder. Highly comparable model: parent-led nonprofit funding drug development, building patient registries, and driving early-stage clinical trials for an ultra-rare genetic condition affecting children.
• FOXG1 Research Foundation: Parent-led foundation driving research for FOXG1 syndrome, a rare neurodevelopmental disorder causing severe developmental delays. Operates a near-identical model: family-led nonprofit funding basic research, building patient registries, and supporting drug development for an ultra-rare genetic condition.
• SYNGAP Research Fund: Parent-led foundation funding research for SYNGAP1 syndrome, a rare genetic neurodevelopmental disorder. Co-participant with ADNP Kids Research Foundation in the NET (Neurobehavioral Evaluation Tool) study; directly comparable disease-specific rare disease research foundation.
• SLC6A1 Connect: Patient-driven nonprofit funding research for SLC6A1-related disorders, a rare neurodevelopmental epilepsy condition. Highly comparable family-led model funding early-stage research, building registries, and partnering with academic institutions for an ultra-rare genetic syndrome.
• PTEN Hamartoma Tumor Syndrome Foundation: Patient advocacy organization funding research for PTEN Hamartoma Tumor Syndrome, a rare genetic condition with neurodevelopmental features. Co-participant in the NET study with ADNP Kids Research Foundation; directly comparable as a small rare-disease patient-driven foundation.
• Malan Syndrome Foundation: Family-driven nonprofit advancing research for Malan Syndrome, a rare overgrowth/neurodevelopmental disorder. Co-participant in the NET study with ADNP Kids Research Foundation; operates with a similar small-volunteer model funding research and supporting affected families.

Broad incumbents

• Autism Speaks: Large autism advocacy organization funding research across the autism spectrum, including genetic causes like ADNP. Co-funder of the NET study and primary advocacy partner for ADNP Kids Research Foundation; operates at much larger scale across the broader autism community.
• National Organization for Rare Disorders (NORD): Umbrella organization for the US rare disease community providing advocacy, education, and research support across hundreds of rare conditions including ADNP. Acts as an aggregator and policy advocate rather than a disease-specific research funder; ADNP Kids Foundation is a member of NORD's RAN network.
• Simons Foundation SPARK: Large-scale autism research initiative and genetic database connecting thousands of autism families with researchers. Serves as an awareness and genetic testing referral channel for ADNP Syndrome as a genetic cause of autism; operates across all genetic autism syndromes rather than focusing on ADNP specifically.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights7 records

Customer concentration

• Facebookfacebook.com/ADNPFoundation
• LinkedInlinkedin.com/company/adnp

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

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

Frequently asked questions about ADNP Kids Research Foundation