Jed Ian Taxel Foundation for Rare Cancer Research

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Jed Ian Taxel Foundation for Rare Cancer Research

We partner with leading rare cancer researchers to accelerate discovery. Join us on our journey to defeat rare cancers. This is it.

Your contribution directly supports the scientific research that can save lives. The Foundation is a living memorial to Jed, who died in 2017 of a rare cancer. Its mission is to inspire and empower scientific breakthroughs, clinical trials and improved treatments which change lives and enable better outcomes for rare cancer patients and their families. Rare cancers are not rare; they comprise 25 %

of cancers diagnosed annually. Rare cancers are not rare … the 5-year survival rate is considerably lower than common cancers, resulting in a disproportionate number of all cancer deaths. Our analysis revealed a clear need for more, much more investment in rare cancer research. We concluded this was the only way to make a difference, driving better outcomes for rare cancer victims, like Jed. The result: a foundation, whose sole focus is to inspire and empower scientific discovery, clinical trials and improved treatments for rare cancer patients and their families. What else should you know before joining us on this journey? Know rare cancers collectively contribute to a substantial portion of the cancer burden in the United States. Know research and resources have focused on the most common cancers, limiting the development of novel therapeutics that can drive remissions and cures for rare cancers. Know the only way to win this battle is through multiple research programs, conducted in respected cancer centers throughout the US; much of the needed work remains unfunded. Know this foundation is an all-volunteer organization, built to attain scale. Our balanced Board includes seasoned not for profit leaders mid-career business executives, entrepreneurs; and a stellar Advisory Board of medical experts who will guide our investments in science. Know this Foundation’s leadership has the organizational experience, resources, and fortitude to organize, nurture and build an institution we can value and take pride in. Know your generosity today, and tomorrow is the critical building block for research that will save lives. One night at dinner a few weeks before he died, Jed asked…what will be my legacy? This is his legacy…Consider joining us and making this part of your legacy. Befriend our team, share in our progress as we travel the long road toward inspiring and empowering more scientific breakthroughs, more clinical trials, and better human outcomes.

02/13/2026

We mourn the passing of Eleanor Jaffe, a cherished and generous friend of the Jedi Rare Cancer Foundation.

From our earliest days, Eleanor and the Jaffe family stood beside us with unwavering belief in our mission. Their generosity has helped drive rare cancer research forward and bring hope to families who urgently need it.

Eleanor’s legacy lives on through the lives her support will continue to impact.

We hold Susan (Jaffe) and Nelson Taxel, Richard and Ann Jaffe, Jack Jaffe, Joyce Reynolds, and the entire Jaffe family in our hearts.

May her memory be a blessing.

12/23/2025

This holiday season, we pause to reflect on the people and moments that shape our lives. For our family, it’s a time to remember Jed—his courage, his humor, and the incredible strength he showed while facing a rare cancer.

Rare cancers account for nearly 25% of all cancer diagnoses, yet they remain profoundly under-researched. To every patient and family navigating a diagnosis this season: we see you, and we stand with you.

In 2025, the JEDI Rare Cancer Foundation made meaningful progress:

- Continued support for Cure: The Rare Cancer Initiative at Case Comprehensive Cancer Center
- Led Alliance for Rare Cancer efforts to unite rare cancer leadership
- Secured $1 million in grant funding for the first Alliance-led rare cancer research project launching in 2026

Your year-end gift helps move lifesaving research forward and brings hope closer to reality for rare cancer patients everywhere. Together, we can change outcomes and save lives - https://jedicancerfoundation.org/?give=8NDR96EK

12/17/2025

Our hearts go out to actor James Van Der Beek as he courageously shares his multi-year battle with colorectal cancer. His honesty about navigating this diagnosis and how he’s opened up to his six children reminds us of the strength it takes to face the unknown with transparency and hope.

Colorectal cancer, which begins in the colon or re**um, can affect anyone, no matter their age or lifestyle. James’s story underscores why better screening, research, and early detection are critical in saving lives.

At the Jedi Rare Cancer Foundation, we’re committed to driving innovation in early detection and precision diagnostics for rare and hard-to-detect cancers. Every story like James’s fuels our mission to give families more time, more answers, and more hope.

Join us in this fight. Your donation helps fund research that could change the future of cancer detection. Donate today: https://jedicancerfoundation.org/?give=8NDR96EK

12/10/2025

We send our heartfelt support to Tatiana Schlossberg as she navigates her recent rare blood cancer diagnosis. Her strength and openness shine a light on what so many patients and families quietly face every day.

Her journey underscores why advancing rare cancer research is so urgently needed. Too many rare cancers lack clear treatment paths and meaningful funding and that must change.

At the Jedi Rare Cancer Foundation, we stand with Tatiana and with every person affected by rare cancers. We believe her voice can help bring greater awareness to the need for better research, better options, and better outcomes.

No one should face a rare cancer alone. Together, we push for answers and hope.

12/02/2025

Thank you to everyone who has already contributed to our Giving Tuesday campaign. During this season of gratitude and giving, your generosity is helping move rare cancer research forward in meaningful and impactful ways, and we are truly grateful for your support.

If you haven’t had a chance to give yet, there is still time to make a difference. As the holidays remind us of the power of compassion and community, Giving Tuesday is a moment to come together and create real impact for families facing rare cancers.

Your gift today helps drive research that leads to earlier detection, supports critical clinical trials, improves outcomes for patients facing rare cancers, and provides hope to families who often feel overlooked. Every contribution strengthens the fight against rare cancers and brings us closer to life-changing breakthroughs.

Before the day ends, will you join us in creating impact and hope? Donate Now: https://jedicancerfoundation.org/?give=8NDR96EK

Happy Holidays,

The Jedi Rare Cancer Foundation

11/19/2025

We are heartbroken at the passing of our dear colleague and friend, Dr. Brian Van Tine, who we recently had the honor of interviewing during Sarcoma Awareness Month.

He was a champion for rare cancer patients, seeking new treatments and solutions for sarcoma in his research at the Alvin J. Siteman Cancer Center. He partnered with the Alliance for Rare Cancers to connect rare cancer groups to create a more collaborative approach.

His passion for better futures for patients was evident in every conversation with him. He will be deeply missed in the entire rare cancer community. His legacy serves as an inspiration to us all to never lose hope.

Our heart is with his family, friends, and patients as they mourn this terrible loss.

https://jedicancerfoundation.org/sarcoma-awareness-month/

10/11/2025

Eight years ago, we lost Jed Taxel, the inspiration behind the Jedi Rare Cancer Foundation. His life was defined not just by the battle he faced, but by his spirit of creativity, joy, and generosity that touched everyone around him.

Each year, this day reminds us why our mission matters. Rare cancers continue to leave too many without answers or options. Jed’s story fuels our determination to change that. Through research, advocacy, and the support of our community, we are helping to build a future where patients and families have hope, resources, and better outcomes.

Jed’s legacy is alive in every step we take. We see it in the breakthroughs being pursued, in the families who find connection through our work, and in the unwavering support from all of you.

Today, we remember Jed with love and gratitude. And we recommit ourselves to honoring his memory by pushing forward until rare cancer patients no longer face these battles alone.

Consider donating to honor Jed’s life and continue his legacy: https://jedicancerfoundation.org/about-jed/?give=8NDR96EK

09/30/2025

September 30th is Rare Cancer Day! At the Jedi Rare Cancer Foundation, every day is about standing with patients and families facing rare cancers, but on Rare Cancer Day, we join the global movement to amplify their voices. This day brings together patients, advocates, researchers, caregivers, and organizations like Jedi and our partners in the Alliance for Rare Cancers to push for earlier diagnoses, greater awareness, and stronger initiatives.

Like other rare diseases, rare cancers can be extremely difficult to diagnose. This often leads to numerous physician visits, misdiagnosis, and significant delays in diagnosis—a devastating reality that impacts families emotionally and financially.

Today, we shine a spotlight on these challenges and recommit to our mission: driving awareness, supporting families, and advancing research that can change lives. Help spread the word: https://jedicancerfoundation.org/join-the-fight-against-rare-cancer-this-rare-cancer-day/

08/29/2025

August is Appendix Cancer Awareness Month! Appendiceal cancer is rare, often misunderstood, and on the rise. There are two main types of appendix cancer, both extremely rare, and early detection is difficult as symptoms are often vague and misdiagnosis is common, especially among women.

Symptoms may include bloating, increased abdominal girth, constipation, appendicitis-like pain, hernia-like symptoms, ascites, and pelvic pain that can mimic fibroids, endometriosis, or ovarian cysts and tumors.

This month, we’re raising awareness and advocating for more research to improve outcomes for patients and families affected by appendix cancer. Together, we can work toward better treatments and, ultimately, a cure. Donate today: https://jedicancerfoundation.org/?give=8NDR96EK

08/19/2025

In July, we joined the global effort to raise awareness about sarcoma, a rare and often misunderstood group of cancers affecting 50,000 people at any given time.

Now in August, we continue the conversation by highlighting powerful insights from Dr. Brian Van Tine, a leading voice in sarcoma research. His journey began with a promise to a patient and led to breakthroughs that are changing lives.

From treating rare tumors to building the Alliance for Rare Cancers, Dr. Van Tine is helping drive progress where it’s most needed. His story is a reminder that even after Sarcoma Awareness Month ends, the fight for better treatments and cures must continue.

Read the full blog and learn how you can help support rare cancer research: https://jedicancerfoundation.org/sarcoma-awareness-month/

07/31/2025

July is Sarcoma Awareness Month 💛 Sarcoma is a rare cancer that forms in the bones and soft tissues like muscle, fat, and blood vessels. It makes up only 1% of adult cancers but about 15% of childhood cancers.

There are two main types: soft tissue sarcomas and bone sarcomas (osteosarcomas). Symptoms can be subtle, like painless lumps or persistent pain and swelling.

While the cause is often unknown, risk factors include radiation exposure, genetic conditions, and certain chemicals. Early detection is key. Early detection is critical—the earlier it’s found, the more treatment options are available.

Help us raise awareness this month. Your voice can make a difference.

07/04/2025

Happy 4th of July from all of us at the JEDI Rare Cancer Foundation! Wishing you a safe, joyful day filled with celebration, loved ones, and sunshine.

Don’t forget to wear sunscreen and protect your skin while enjoying the outdoors!

Address

P. O. Box 683501
Park City, UT
84068

Website

http://jedicancerfoundation.org/

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