Jed Ian Taxel Foundation For Rare Cancer Research

What Jed Ian Taxel Foundation For Rare Cancer Research does

The Jed Ian Taxel Foundation for Rare Cancer Research is a 501(c)(3) nonprofit founded in 2021 in Park City, Utah, by Mark and Linda Taxel as a living memorial to their son Jed who died of rare cancer in 2017. The foundation's core function is to fund, coordinate, and accelerate rare cancer research and clinical trials, with primary constituents being rare cancer patients and families, the donor community, and the research/clinical ecosystem it supports. Its core offerings center on three pillars: (1) CURE: The Rare Cancer Initiative — a $5 million, five-year commitment to Case Comprehensive Cancer Center using single-cell genomics, organoid models, and clinical trials to drive bench-to-bedside rare cancer research; (2) the Alliance for Rare Cancers (ARC) — a 35-member coalition founded in 2024 uniting academic leaders, regulatory experts, foundations, and patient advocacy groups; and (3) direct research grants to institutions and investigators, including single-cell sarcoma research at Columbia University and pediatric rare cancer trials at Memorial Sloan Kettering.

The foundation operates an event-driven fundraising model with no proprietary technology product of its own. Technical capability is delivered through partner institutions and is anchored by the Rare Cancer Data Initiative — a two-year pilot program backed by a $1 million Chan Zuckerberg Initiative Biohub grant that leverages RCRF's pattern.org patient-directed tissue donation infrastructure to generate ML-ready, single-cell-resolution molecular and clinical datasets across multiple rare tumor types. Fundraising channels include online donations (via the Givecloud platform), cycle teams in MSK's Cycle for Survival, the annual Wine for Life event in Cleveland, and direct major-gift dinners. Pricing is event-based: Wine for Life tickets range from $200–$1,000 per person with sponsorship packages from $1,500–$25,000, and a Mother's Day campaign accepts a $20 minimum donation.

Customer segments are hybrid: donors (individuals, corporations, family-advised funds, other foundations) supply revenue; rare cancer researchers and clinicians (at Case CCC, Columbia, MSK, and beyond) are grant recipients distributing the foundation's impact; and rare cancer patients and families are the ultimate beneficiaries. The foundation has been awarded the Candid (GuideStar) Platinum Transparency Seal (2023) and is led by CEO Mark Taxel, with Dr. Gary Schwartz (Director, Case CCC) chairing the Medical Advisory Board.

Name

Jed Ian Taxel Foundation For Rare Cancer Research

Legal name

The Jed Ian Taxel Foundation for Rare Cancer Research LLC

Website

https://jedicancerfoundation.org

Company type

Private

Founded year

2021

Operating status

Operating

Headcount range

1–10 employees

Short description

The Jed Ian Taxel Foundation For Rare Cancer Research is a 501(c)(3) nonprofit founded in 2021 that funds and coordinates rare cancer research, convents 35 stakeholder organizations via its Alliance for Rare Cancers, and directs grants to academic centers including Case Comprehensive Cancer Center, Columbia, and Memorial Sloan Kettering to accelerate therapies for rare cancer patients.

Ownership category

akta.pro rank

Product category

Nonprofit Cancer Research Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

SIC

Services-Health Services (8000)

akta.pro industry

PRIMARYBPAGACAA

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

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

SECONDARYBPAGAKAL

Health & Medical Research Grantmaking Foundations

Business & Public Services/Nonprofit, NGO & Social Services/Philanthropy, Foundations & Grantmaking

Keywords

• Rare cancer research funding
• Cancer research philanthropy
• Nonprofit foundation grants
• Oncology research initiatives
• Cancer advocacy coalition

Headquarters

HQ city

Dobbs Ferry

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2B and B2C

Offering type

Services

Cost components

Others, Marketing or Sales, Operations

Revenue model

1. Donations and Fundraising: The foundation operates as a 501(c)(3) nonprofit. Revenue is generated entirely through tax-deductible donations from individuals, corporations, family-advised funds, and other foundations. The foundation hosts fundraising events (Wine for Life, Jedis for Survival) and accepts online donations.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels9 records

Core offering

The Jed Ian Taxel Foundation for Rare Cancer Research is a 501(c)(3) nonprofit that funds and coordinates rare cancer research, clinical trials, and collaborative initiatives through multi-year research grants (e.g., the $5M CURE Initiative at Case Comprehensive Cancer Center), a national coalition of 35+ rare cancer organizations (Alliance for Rare Cancers), and direct grants to investigators at major cancer centers. It sustains these efforts via tax-deductible donations, fundraising events (Wine for Life, Jedis for Survival / Cycle for Survival, annual dinners), corporate and family-advised fund giving, and grant co-funding from partners such as the Chan Zuckerberg Initiative Biohub.

Product overview

The Jed Ian Taxel Foundation for Rare Cancer Research is a non-profit organization (501(c)(3)) founded in 2021 as a living memorial to Jed Ian Taxel. The foundation operates primarily as a research funding and advocacy organization rather than a technology product company. Its core offerings include: CURE: The Rare Cancer Initiative (a major research initiative at Case Comprehensive Cancer Center), the Alliance for Rare Cancers (ARC) coalition of 35+ organizations, direct research funding to scientists and clinical trials, Jedis for Survival fundraising teams for Cycle for Survival, annual events (Wine for Life, conferences, workshops), and educational content through newsletters and blog publications.

Differentiator

Problem solved

Functional benefit

Products and services

• CURE: The Rare Cancer Initiative A comprehensive bedside-to-bench-to-bedside rare cancer research effort at Case Comprehensive Cancer Center that uses single-cell genomics, organoid models, and clinical trials to accelerate the development of breakthrough therapies for rare cancer patients.
• Alliance for Rare Cancers (ARC) An unprecedented national alliance of 35 rare cancer-focused academic leaders, regulatory experts, foundations, and patient advocacy groups collaborating to accelerate cures through data-driven approaches in rare cancer; the foundation serves as its founding sponsor.
• Rare Cancer Research Funding Program Direct research grants and support for rare cancer-specific research efforts, including grants to early career scientists, clinical trials at major cancer research centers (e.g., Dr. Benjamin Izar at Columbia, Dr. Michael Ortiz at MSK), and collaborative research initiatives with partner organizations.
• Jedis for Survival (Cycle for Survival Team Program) National cycling teams participating in MSK's Cycle for Survival annual indoor cycling fundraiser to raise funds for rare cancer research at Memorial Sloan Kettering Cancer Center; the foundation matches the first $10,000 raised by each regional team.

Quantifiable outcome

• 25% of all cancer diagnoses in the U.S. are rare cancers — affecting over 400,000 Americans annually — yet rare cancer patients have significantly lower survival rates than common cancer patients
• +2 more outcomes

Named customers5 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature2 records

Partnerships

Seven partnerships are on record, tiered flagship, core and minor.

• Alliance for Rare Cancers (ARC)flagshipStrategic or Co-development Partner · 1 January 2024Founded in 2024 by the Jedi Rare Cancer Foundation, ARC is an unprecedented alliance of 35 rare cancer-focused academic leaders, regulatory experts, foundations, and patient advocacy groups. It provides strategic oversight and coordination for large-scale collaborative rare cancer initiatives, aiming to accelerate data-driven approaches in rare cancer nationwide. The foundation serves as its founding sponsor.
• Rare Cancer Research Foundation (RCRF)coreStrategic or Co-development Partner · 1 January 2024The foundation partners with RCRF on the Rare Cancer Data Initiative, leveraging RCRF's pattern.org patient-directed tissue donation infrastructure and Pattern Data Commons open-source data platform. RCRF's technology enables rare cancer patients nationwide to donate tissue and medical records for open-source translational research.
• Case Comprehensive Cancer Center (Case CCC)coreStrategic or Co-development Partner · 1 January 2023The foundation has committed $5 million over five years to CURE: The Rare Cancer Initiative at Case CCC, led by Dr. Gary Schwartz. Case CCC is an NCI-designated Comprehensive Cancer Center (consortium of Case Western Reserve University, University Hospitals, and Cleveland Clinic). The partnership also includes the 2023 Rare Cancer Workshop co-sponsored by the foundation.
• Columbia University Herbert Irving Comprehensive Cancer CentercoreStrategic or Co-development Partner · 1 January 2022The foundation co-sponsored the 2022 'Rare Cancers: Unmet Medical Needs' conference with Columbia and presented $100,000 to Dr. Benjamin Izar for single-cell sarcoma research. Dr. Gary Schwartz previously served as Deputy Director of this center before moving to Case CCC.
• Memorial Sloan Kettering Cancer Center (MSK) / Cycle for SurvivalcoreStrategic or Co-development PartnerSince 2022, the foundation fields a Jedis for Survival national team in MSK's Cycle for Survival annual rare cancer fundraising event. Funds raised (over $258,805 to date) are directed to Dr. Michael Ortiz's pediatric rare cancer research at MSK Kids. The foundation matches the first $10,000 raised by each regional cycle team.
• Life Raft GroupminorOthersNorman Scherzer, Founder and Executive Director of the Life Raft Group (GIST cancer advocacy), spoke at the foundation's pre-conference dinner in 2022, representing the type of collaborative rare cancer effort the foundation is committed to supporting.
• Fibrolamellar RegistryminorOthersPatient-driven registry for fibrolamellar carcinoma, a rare liver cancer. The foundation's blog references this registry as an example of patient-driven research infrastructure that can inform broader rare cancer data collection models.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Cancer Institute (NCI): Largest public source of cancer research funding in the U.S. and overseer of NCI-designated cancer centers (including Case CCC). The Jedi Foundation is a complement and catalyst relative to NCI funding.
• Stand Up To Cancer: Funds collaborative, multi-institutional "Dream Teams" of cancer researchers — a model directly comparable to the Jedi Foundation's CURE Initiative. Broader scope but analogous operating approach.
• V Foundation for Cancer Research: One of the largest cancer-specific research funders in the U.S., awarding research grants across cancer types. Comparable grantmaking operating model and donor-event-driven fundraising, but at much larger scale and broader scope.
• American Cancer Society: The largest U.S. nonprofit funder of cancer research, with broad event-driven fundraising (Relay For Life) and major research grants. Comparable funding infrastructure and donor-event operating model, but vastly larger scale.

Direct peers

• Chordoma Foundation: Disease-specific rare-cancer research foundation funding bench-to-bedside research and patient data. Highly comparable in scale, mission, and reliance on academic medical center partnerships.
• NF Research Initiative (NFRI) / Children's Tumor Foundation: Funds research, builds data platforms, and convenes coalitions for a specific rare-cancer-adjacent condition. Comparable operating model: foundation-led disease research, data infrastructure, and clinical trial acceleration.
• Pancreatic Cancer Action Network (PanCAN): Major cancer-disease-specific research funder with patient services, advocacy, and research grants. Comparable in mission focus (a specific cancer type) and grantmaking to research institutions.
• Rare Cancer Research Foundation: Operates the pattern.org tissue donation platform that the Jedi Foundation uses for its Rare Cancer Data Initiative. RCRF is a direct peer in rare-cancer research infrastructure and an active co-development partner.
• Cycle for Survival (Memorial Sloan Kettering): National rare-cancer fundraising movement to which the Jedi Foundation fields Jedis for Survival teams. Directly comparable as an event-driven rare-cancer research funder.

Others

• Chan Zuckerberg Initiative (Biohub): Strategic co-funder of the foundation's Rare Cancer Data Initiative. Comparable as a science-focused philanthropy investing in collaborative, data-driven biomedical research infrastructure.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks6 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/embed/krmjPtZV5vQ
• Facebookfacebook.com/jedicancerfoundation
• LinkedInlinkedin.com/company/jed-ian-taxel-foundation-for-rare-cancer-research
• Instagraminstagram.com/jedirarecancerfoundation

Compliance2 records

Revenue estimate

Valuation estimate

Number of profiles

Profiles3 records

Subsidiaries1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Jed Ian Taxel Foundation For Rare Cancer Research