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CURE CDKL5 EPILEPSY FOUNDATION

New York, NY · EIN 991303165 · Form 990EZ · FY2024 · NTEE G54 · Voluntary Health Associations · Small ($100K-$1M) · cure5.foundation
revenue
$192K
expenses
$14K
net assets
$178K
employees
mission · from form 990

Cure CDKL5 Epilepsy Foundation's mission is to find a cure for children suffering from CDKL5 Deficiency Disorder and improve the qualtiy of life for them and their families. We will provide financial grants and payments to advance science and research to the academic, biopharma, scientific and medical community to pursue our mission. CDKL5 is a rare developmental epileptic encephalophathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity.

profile · synthesized from sources

Cure CDKL5 Epilepsy Foundation is a nonprofit dedicated to finding a cure for CDKL5 Deficiency Disorder (CDD), a rare genetic epilepsy. The organization funds scientific research and drug development initiatives aimed at advancing treatments and improving quality of life for affected children and families. It operates through a parent-led model and collaborates with research institutions and biotech partners.

named programs · 4 · from sources

What they call their work

AI-Powered Drug Discovery with Unravel’s rareSHIFT™
Collaborating with Unravel Biosciences to use AI-driven RNA analysis for rapid drug repurposing for CDKL5 Deficiency Disorder
EveryStone: High-throughput Screening in Brain Organoids
Partnering with BrainStorm Therapeutics to grow cortical organoids from patient-derived iPSCs for comprehensive drug repurposing screening
Samael: A new Class of Neurosteroid-derived Compounds
Collaborating with Ulysses Neuroscience to develop Angel Compounds, a new class of small-molecule therapeutics designed to restore neuronal cytoskeleton function in CDD
iPSC Lines with Boston Children’s Hospital
Funding the development of 9 new patient-derived induced pluripotent stem cell (iPSC) lines to advance CDKL5 research
activities · 3 groups

What they do

  • Genetic and Neurological Disease Research Funding 2 activities
    • Funding development of patient-derived iPSC lines for CDKL5 research
      Finances the creation of 9 patient-derived induced pluripotent stem cell (iPSC) lines at Boston Children’s Hospital to enable disease modeling and therapeutic development for CDKL5 Deficiency Disorder.
    • Funding research and family support for CDKL5 Deficiency Disorder
      Provides financial grants to support scientific and medical research aimed at finding a cure for CDKL5 Deficiency Disorder and improving quality of life for affected children and families. Also funds programs that directly support families impacted by the disorder.
  • Rare Genetic Disease Research and Advocacy 1 activity
    • Developing small-molecule compounds for CDKL5 Deficiency Disorder
      Collaborates with Ulysses Neuroscience to develop a new class of small-molecule compounds, known as Angel Compounds, designed to restore neuronal cytoskeleton function and increase microtubule dynamics in CDKL5 Deficiency Disorder.
  • Uncategorized 1 activity
    • Conducting AI-driven research initiatives for CDKL5 Deficiency Disorder
      Engages in research collaborations using artificial intelligence to advance therapeutic discovery, including AI-derived summaries of CDKL5 research papers, AI-driven RNA analysis for drug repurposing with Unravel Biosciences, and supporting high-throughput drug screening using cortical organoids developed from patient-derived iPSCs in partnership with BrainStorm Therapeutics.
financials · form 990EZ · fy2024
revenue
Total revenue$192K
Contributions & grants$192K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$14K
Program expenses
Admin / overhead
Fundraising
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$178K
Cash
Investments
Liabilities
Net assets$178K
2 years on record · 2023–2024
relationships · 6

Who they work with

  • Boston Children’s Hospital Partner — Funding the development of patient-derived iPSC lines for CDKL5 research.
  • BrainStorm Therapeutics Partner — Collaborating to grow cortical organoids from patient-derived iPSCs for high-throughput drug screening in CDKL5 research.
  • CDKL5 Alliance Brazil Partner — Ana Borg represents CDKL5 Alliance Brazil and is involved in advocacy for CDKL5 Deficiency Disorder.
  • CDKL5 International Alliance Partner — Ana Borg serves as a board member of the CDKL5 International Alliance, indicating organizational collaboration.
  • Ulysses Neuroscience Partner — Collaborating to develop Angel Compounds, a new class of neurosteroid-derived small molecules tailored for CDKL5 Deficiency Disorder.
  • Unravel Biosciences Partner — Collaborating on AI-powered RNA analysis for rapid drug repurposing in CDKL5 Deficiency Disorder.
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.

  • AI-Driven Drug Repurposing via RNA Analysis
    methodology: ai-driven_drug_repurposing
    By applying AI to RNA analysis, the foundation identifies existing drugs with potential therapeutic effects for CDKL5 Deficiency Disorder, accelerating treatment development because it bypasses early-stage drug discovery and repurposes proven compounds more quickly.
  • AI-Enhanced Research Dissemination and Synthesis
    methodology: ai-enhanced research dissemination
    By using AI to transform and summarize published research, the foundation improves accessibility and utilization of scientific knowledge about CDKL5 Deficiency Disorder because complex findings are made more digestible and actionable for researchers and stakeholders.
  • Collaborative Stakeholder Engagement for Research Acceleration
    methodology: collaborative advocacy and research acceleration
    By fostering collaboration among stakeholders—including researchers, clinicians, patients, and families—the foundation improves outcomes and quality of life for individuals with CDKL5 Deficiency Disorder because shared goals and integrated perspectives accelerate both research and care innovation.
  • Grantmaking to Accelerate External Research
    methodology: research-funding-through-grants
    By funding scientific and medical research through grants to external entities in academia, biopharma, and the scientific community, the foundation accelerates progress toward treatments and cures because it leverages specialized expertise and infrastructure beyond its own organizational boundaries.
  • Organoid-Based High-Throughput Drug Screening
    methodology: organoid-based_drug_screening
    By using patient-derived brain organoids as 3D models for drug screening, the foundation identifies promising treatments more effectively because these biologically accurate models reflect human disease mechanisms better than traditional cell lines or animal models.