Rare Cancer Workshop: Envisioning Collaborative Solutions in the U.S.
On November 8-9, Dr. Gary Schwartz, Chair of the JEDI Rare Cancer Foundation medical advisory board and Director of the Case Comprehensive Cancer Center, welcomed leaders from across rare cancer constituencies to Cleveland for a workshop sponsored by the Jedi Rare Cancer Foundation, the Rare Cancer Research Foundation, and Case CCC. The meeting was designed to be the first step in a strategic planning process to build a collaborative approach to defeat rare cancer in the United States. The workshop utilized Appreciative Inquiry (AI) — sometimes called an asset- or strength-based approach to systems change because it emphasizes positive idea generation over negative problem identification. This method facilitated the group’s collective work toward developing strategies to create centralization around the study of rare cancers.

Participants included cancer center directors, clinicians, researchers, representatives of the National Cancer Institute and FDA, as well as rare cancer foundations and patient advocacy leaders. 

The vision was to reach actionable consensus and pathways to build out a systemic approach to accelerate discovery and treatment in advancing rare cancers as we know them today.

Four themed categories were defined as areas for workshop sessions:
  1. Research
  2. Biospecimens and Data
  3. Patient-centered Pathways, Funding, and Management
  4. Government.
The group worked to frame the challenge and build a framework of achievable goals and obstacles, ideate the core infrastructure requirements for a systemic approach to rare cancers, identify existing success models collaborative mechanisms, and identify the necessary resources to bring the system to fruition.

Moving forward, a steering group will further the strategic planning process and initiate the development of pilot projects intended as demonstration models for a federated, collaborative approach to rare cancers. The group will also organize a Rare Cancer Summit in conjunction with Rare Cancer Day, September 30, 2024, to engage the collective rare cancer community to refine and develop a consensus in adopting the strategic plan to establish the foundations of a systemic approach that will end rare cancer as we know it.
wine tasting and fundraiser raises $50,000 for
CURE: The Rare Cancer Initiative
On Friday, November 10,  The JED Ian Taxel Foundation for Rare Cancer Research Foundation and Case Comprehensive Cancer Center co-sponsored a special wine tasting and kick-off fundraiser for CURE: The Rare Cancer Initiative. Shelley Taxel, sommelier and wine buyer at The Wine Spot in Cleveland Heights, curated 24 small-production, rare wines from unique winemakers. There was also a "wine pull" and VIP tasting before the party that featured rare bottles and back vintages. 

Held at the beautifully appointed BurkleHagen Photography Studio (1717 E. 36th St.) with food by Sophie La Gourmande, WINE FOR LIFE raised $50,000 for CURE and brought together the Taxel family’s deep ties to Cleveland and the family foundation’s support for Case Comprehensive Cancer Center’s CURE. Shelley’s husband, Ezra Taxel, was quoted in the Cleveland Press, announcing, "Our family foundation has committed to raising $5 million dollars in the next five years to support new research at the Case Comprehensive Cancer Center and help change the way that rare cancers are treated."

Plan to join us for next year’s event! Wine for Life will take place in Cleveland on October 18, 2024. For information and updates on the event and sponsorship opportunities, please contact [email protected].
TargetCancer Foundation promotes the development of lifesaving treatment protocols for rare cancers.
JEDI Foundation president Harmony Knutson and CEO Mark Taxel attended TargetCancer Foundation’s Think Tank on Advancing Precision Medicine in Rare Cancers, a highly interactive, one-day meeting held in Boston on November 15, 2023. This meeting builds on the progress being made through TargetCancer Foundation’s TCF-001 TRACK study, a nationwide, decentralized, patient-driven clinical trial studying precision medicine in rare cancers, in which patients can fully consent and enroll in the TRACK study from their home without traveling to a clinical trial site. The diverse perspectives of speakers and attendees, many of whom also attended the JEDI Foundation’s CURE Rare Cancer Workshop in Cleveland, allowed for a comprehensive discussion of challenges, goals, opportunities, and best practices in addressing the needs of patients facing rare cancers, and promoted collaboration, information sharing, and idea generation.

Learn more:
CURE: The Rare Cancer Initiative will bring new hope to cancer patients.
Join the JEDI Rare Cancer Foundation in helping to accelerate scientific discovery that will address the unmet medical needs of rare cancer patients, improve outcomes, and defeat rare cancer as we know it. We have committed to raising $5 Million over 5 years for Case Comprehensive Cancer Center’s CURE: The Rare Cancer Initiative. This comprehensive, innovative effort will transform rare cancer research and save lives worldwide. 

Philanthropic support is critical for transforming CURE from concept to reality and collecting vitally important early-stage research results. This will position it for large-scale funding from the National Institutes of Health, National Cancer Institute, and more, which will accelerate our progress toward our ultimate and shared goal of lifesaving cures.

By supporting CURE, we can make an impact.
We need to act now.
Wishing you and your family a very Happy New Year,
Mark Taxel, Founder & CEO
JEDI Rare Cancer Foundation
The Jed Ian Taxel Foundation for Rare Cancer Research, Inc. is a 501(c)(3) Nonprofit Organization, accepting Tax Deductible Donations from individuals, corporations, family advised funds, and foundations. Federal Tax ID 86-261081