March 2023 archival

SPRING 2023 | Quarterly Update for Donors, Sponsors, Patients, Doctors, and Hospitals

Sharing Jed’s story and legacy

Today and every day, our foundation honors the memory of Jed Ian Taxel, who was diagnosed with a rare form of cancer in April 2017.

Jed's untimely death in October 2017 at age 39 symbolizes the heartbreak and loss associated with a rare cancer diagnosis. Unfortunately, it was too late when doctors realized that Jed had metastatic cancer after months of treatment for a sports injury. He lived six short months after his initial diagnosis.

A few weeks before Jed died, he asked, “What will be my legacy?” The Jedi Rare Cancer Foundation is his legacy—our mission is to enable better outcomes and improved treatments for those fighting the same type of cancer and their families.

Please take the time to watch this heartwarming video narrated by Jed's wife Tiffany and others who share his incredible impact on their lives, and explains rare cancers and the need for expanding the treatment options.

Watch Jed's Tribute Video

Honoring Greg Simon:

Jedi Foundation’s 2023 Agent for Change

Greg Simon is a visionary strategist, dynamic speaker, writer, and expert at emerging trends in healthcare information, technology, innovative drug research and development, and patient advocacy. In recognizing Greg as our 2023 Agent for Change, we continue to support the work he does every day to make a better future for rare cancer patients.

As president of the Biden Cancer Initiative, a nonprofit formed by Vice President Joe Biden and Dr. Jill Biden, Greg led his team in continuing the work of the White House cancer moonshot task force to double the rate of progress in preventing, detecting, diagnosing, treating, and surviving cancer.

Greg’s colleagues describe him as a tireless advocate who never rests in the pursuit of advancing rare cancer research and making it accessible to everyone. “I think Greg has a superpower,” says Julie Grant, CEO of Day One Biopharmaceuticals. “He's able to meet people, understand how they can make a difference, and then put them in touch with the individuals who can help them on their cause. I see him as one of the greatest leaders in cancer in our country.”

Watch Agent for Change Award Video

Rare Cancer News:

A new, much-needed treatment for a rare form of cancer.

We're excited to share the news that the U.S. Food and Drug Administration has approved the immunotherapy drug atezolizumab (Tecentriq) for use in patients with advanced alveolar soft part sarcoma.

This decision will bring hope to those facing a difficult battle against this hard-to-treat cancer: Approximately 80 people are diagnosed with ASPS each year in the US, and with this drug now approved, it gives patients a better treatment option. Previously, only around half of those living with this rare cancer could expect to be alive after five years.

Our hearts go out to anyone impacted by this devastating illness, and we look forward to sharing positive developments like this soon. Read the article here.

Your generous donation has the power to save lives. Thank you!

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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