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Project CASK Inc
New York, NY · EIN 923742286 · Form 990 · FY2024 · NTEE G80 · Voluntary Health Associations · Small ($100K-$1M) · projectcask.org
revenue
$207K
expenses
$17K
net assets
$275K
employees
0
volunteers
10
program ratio
75%
mission · from form 990

To accelerate breakthroughs in research to develop treatments and a cure for CASK gene disorders.

profile · synthesized from sources

Project CASK Inc is a nonprofit organization dedicated to accelerating research for treatments and a cure for CASK gene disorders, a rare genetic condition affecting brain development. The organization supports affected families by providing educational resources, fostering community connections, and funding scientific research. It operates nationally with a focus on advancing clinical understanding and therapeutic development for this ultra-rare disorder.

named programs · 5 · from sources

What they call their work

CASK Think Tank
Annual convening of CASK experts, rare disease researchers, and clinicians to accelerate development of treatments including gene therapy and small molecule therapies; first held in December 2023
Camp Roar!
On-site childcare and recreational program for individuals with CASK gene disorders and siblings during the Roar conference, providing age-appropriate, theme-based activities
Epilepsy in CASK Study
Comprehensive clinical study launched in partnership with Dr. Asim Shahid at New York Presbyterian Hospital to investigate epilepsy prevalence, variants, and treatment options in CASK patients
Grants Program
Funding initiative supporting basic and translational research on CASK gene disorders; launched after the 2023 Think Tank with 18 applications received in its first cycle
Roar: The CASK Conference
National conference bringing together families, researchers, and healthcare professionals to share research updates, clinical insights, and community support; includes Camp Roar! for affected individuals and siblings
activities · 7 groups

What they do

  • Rare Genetic Disease Research and Advocacy 3 activities
    • Accelerating research for CASK gene disorder treatments and cure
      Focuses on advancing scientific research to develop treatments and a cure for CASK gene disorders, directing 89–91% of annual revenue toward research and studies.
    • Collecting and maintaining biological samples for CASK research
      Collects and maintains patient-donated biological samples including blood, tissue, and saliva to support research on CASK gene disorders.
    • Operating a global patient registry for CASK gene disorders
      Manages a global patient registry to advance understanding of CASK gene disorders and support treatment development.
  • Familial Support for Rare Genetic Conditions 2 activities
    • Expanding access to genetic testing for pediatric epilepsy and developmental disorders
      Partners with Probably Genetic to increase access to genetic testing for pediatric epilepsy and developmental disorders within the CASK community.
    • Providing emotional and informational support to newly diagnosed families
      Offers emotional support, information, and shared experiences to families newly diagnosed with CASK gene disorder and connects them with the broader community of parents and family members.
  • Eating Disorder Recovery Support 2 activities
    • Producing educational podcast content on CASK-related care
      Produces podcast episodes featuring personal experiences with intensive therapy approaches for CASK-related care.
    • Supporting access to intensive therapy models for CASK individuals
      Supports individuals with CASK gene disorders in accessing intensive therapy models that involve high-frequency, consecutive-day sessions followed by breaks.
  • Genetic and Neurological Disease Research Funding 1 activity
    • Funding research grants for CASK gene disorder treatments
      Funds an annual grants program for research into CASK gene disorders, including support for gene replacement therapy, development of iPSCs and mouse models, biologically active compounds, and at least two small grants following the CASK Think Tank; also raises additional funding for large-scale studies based on small grant outcomes.
  • Patient and Researcher Conferences 1 activity
    • Organizing the CASK Conference for patients, families, and researchers
      Hosts Roar 2026: The CASK Conference, a two-day event with sessions, meals, networking, licensed on-site childcare, programming for affected individuals and siblings, and bio-sample collection opportunities.
  • Adaptive Equipment Provision 1 activity
    • Providing financial assistance for medical and therapeutic needs
      Offers financial support for medical equipment, therapy, treatment, medical bills, home modifications, and events through Connect, powered by SupportNow.
  • Uncategorized 1 activity
    • Organizing scientific collaboration and research strategy for CASK disorders
      Convened the first multidisciplinary scientific meeting in December 2023 with 30 scientists to identify key research questions and strategies, and launched the first Request for Applications in January 2024 informed by the CASK Think Tank.
financials · form 990 · fy2024
revenue
Total revenue$207K
Contributions & grants$207K100%
Program service revenue$00%
Investment income$70%
Other revenue$-390
expenses
Total expenses$17K
Program expenses75%
Admin / overhead25%
Fundraising0%
Salaries & benefits$0
Grants paid out$0
Largest expense lineFacilities
balance sheet
Total assets$275K
Cash$261K
Investments$0
Liabilities$0
Net assets$275K
Liquid reserves187.9 mo
2 years on record · 2023–2024 · YoY revenue +115.5%
leadership · form 990 part vii · fy2024

Who runs it

board members · 7
  • Alexandra Dowell — Director
  • Alexis Taylor — Director
  • Emily Stiglitz — Director
  • Joe Stiglitz — Director
  • Kevin Kearse — President
  • Renee Roquet — Secretary
  • Steven Cahall — Treasurer
relationships · 17

Who they work with

  • Alliance GENDA Partner — Collaborates with Project CASK in genetic disease research and support
  • CASK Gene Foundation Network — Source cited for global diagnosis data on CASK gene mutations.
  • CASK Think Tank Partner — Scientific collaboration initiative convening multidisciplinary researchers to advance understanding of CASK gene disorders.
  • Combined Brain Partner — Collaborates with Project CASK in rare disease research and support
  • Combined Brain Partner — Partnership enabling access to a biorepository housed at the Van Andel Institute.
  • Fralin Biomedical Research Institute at Virginia Tech Partner — Therapy center identified as helpful by CASK families and referenced by Project CASK as a resource.
  • Orphan Disease Center at UPenn Partner — Co-hosts the CASK Think Tank to identify key research priorities for CASK gene disorders.
  • Probably Genetic Partner — Collaborates to provide no-cost genetic testing and counseling for pediatric epilepsy and developmental disorders.
  • Probably Genetic Partner — Collaborates with Project CASK in genetic disease identification and research
  • Rare-X Partner — Collaborates with Project CASK in rare disease research and data sharing
  • Silver Bay YMCA Partner — Sponsor of Project CASK's fundraising efforts, specifically hosting the Magical CASKival event.
  • SupportNow Partner — Partners with SupportNow to deliver financial support services through the Connect program.
  • Texas Children's Hospital Partner — Hosts the conference at the Jan and Dan Duncan Neurological Research Institute on its campus.
  • The Jackson Laboratory Partner — Collaborates with Project CASK through the Rare Disease Translational Center
  • University of Pennsylvania Orphan Disease Center Partner — Collaborates with Project CASK, including through the JUMPSTART program
  • Van Andel Institute Partner — Hosts the biorepository accessed through Project CASK's partnership with Combined Brain.
  • research@projectcask.org Partner — Email contact for submitting compelling or innovative translational research proposals
strategies · 5

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Biorepository-Enabled Research Acceleration
    methodology: biorepository-driven_research_acceleration
    By collecting and sharing patient-donated biological samples, we provide critical resources to researchers and industry, because access to high-quality biospecimens accelerates target identification and therapeutic development for rare disorders.
  • Genetics Education Through Accessible Analogy
    methodology: genetics-education-through-analogy
    By using a "book analogy" to explain genetics, we improve understanding of CASK mutations, because accessible metaphors make complex science comprehensible to non-specialists and empower affected families.
  • Multi-Stakeholder Collaboration for Research and Support
    methodology: multi-stakeholder collaboration
    By bringing together families, researchers, and clinicians, we align research priorities and strengthen community support, because inclusive collaboration ensures that science is patient-centered and responsive to real-world needs.
  • Research Acceleration Through Collaborative Science
    methodology: collaborative_research_acceleration
    By convening multidisciplinary scientists and systematically sharing findings, we accelerate treatment development and reduce duplication in CASK research, because open collaboration shortens the path from discovery to clinical application.
  • Therapeutic Development via Targeted Research Investment
    methodology: research-grant-funding
    By funding targeted grants in basic and translational research, we advance treatments and a cure for CASK disorders, because strategic investment in diverse scientific avenues accelerates the development of effective therapies.