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The President’s Corner
When my mother Sharon Leider passed away this past December, she left not only a substantial legacy gift but also a lifetime of commitment to making the world a better place for people facing sarcoma. Our family spent almost ten years supporting Suzanne, the founder and driving force behind the Sarcoma Alliance, as she bravely grappled with Synovial Sarcoma and had the foresight and compassion to create an organization to guide, educate and support others impacted by sarcoma. Every step of Suzanne's journey was accompanied by our mother, Sharon. Mom helped us collect recipes and spiral-bind the volumes of Sage Cuisine, the Sarcoma Alliance's first fundraiser; she was a fixture on the sand at every Ocean of Hope, cheering on the paddle-boarders who braved the Pacific Ocean from Catalina to Manhattan Beach each summer to raise money for sarcoma support; and, after Suzanne passed in 2002, Sharon led some of the Alliance's most memorable fundraisers, including the Fiesta in the Garden and the Roadster Rumble, to raise money to help sarcoma patients get vital second medical opinions from sarcoma experts. The most important work Sharon did, however, was to help Suzanne do all of the difficult things that sarcoma patients everywhere have to do -- keep track of and attend medical appointments; prepare for and recover from surgeries, radiation and chemotherapy treatments; cook meals, take walks, discuss end-of-life plans. This work requires incredible strength and a bottomless well of love. We dedicate this issue of the Sarcoma Alliance Newsletter to Sharon and to all of the family members and loved ones who help people facing sarcoma every day. It is incredibly difficult but incomparably meaningful work. The only thing we can ultimately say to the people who steadfastly do it day in and day out, as Sharon so lovingly did, is -- thank you! 🌻
Sarcoma Alliance Highlights
Share Your Experience: Help Advance Sarcoma Research
The FDA has launched a web portal called Cure ID, designed to collect information about treatments and outcomes for people with rare cancers, including sarcoma. The platform allows patients, care partners, advocates, clinicians, and researchers to share real-world experiences with sarcoma treatments.
By gathering this information in one place, Cure ID aims to help identify patterns in treatment approaches and outcomes that may lead to improved options for people facing rare cancers.
The initiative is particularly interested in exploring opportunities for drug repurposing or finding new uses for existing medications.
Cure ID is organizing a push to enter as many cases as possible over the next few weeks to better understand the platform’s potential and identify any challenges in submitting information.
Please consider contributing to this effort to help advance research and improve care.
Learn more or share your experience through the Cure ID portal.
Grateful for Generous Support
The Alliance has recently received three significant gifts that will have a lasting impact on our programs:
We mourn the death and celebrate the incredible life of Sharon Leider, a longtime supporter of the Alliance and mother of Suzanne Leider (our founder) and Philip Leider (our current President). Sharon left a substantial legacy gift to endow the Suzanne Renée Leider Memorial Assistance Fund, which provides critical financial support for sarcoma patients seeking a second medical opinion from a sarcoma expert. Sharon's legacy reflects a deep commitment to ensuring that no patient faces this journey alone. Her generosity will help provide ongoing support to sarcoma patients and families in need.
Wendy Walk and the Schimel Family have also collected donations and contributed a substantial sum in memory of Leslie Schimel, also in support of the Assistance Fund.
Finally, the Estate of Christina S. Melick has made two major distributions in support of our general operations.
These contributions strengthen the Alliance’s ability to provide assistance, education, and advocacy to the sarcoma community. We are deeply grateful to the families and supporters who continue to make this work possible.
The 2026 Sarcoma Alliance Board Retreat Recap
In January, the Sarcoma Alliance Board of Directors gathered for its annual retreat, generously hosted by the UC Irvine School of Nursing. We extend a special thank you to Liz Eastin, Executive Director of Development for Nursing and Health Advancement, for her help coordinating the space, technology, and logistics for the weekend.
In addition to our regular board business, we were joined by UCI orthopedic surgeons Dr. Russell Stitzlein and Dr. Amanda Goldin for an insightful discussion on how the Alliance can better support sarcoma patients facing the difficult decision between amputation and limb-sparing surgery. The conversation provided valuable perspective as we continue to expand resources for patients navigating complex treatment choices.
We were also pleased to welcome former Alliance Board member Kirk Souder and Meredith Berger of Wendy Walk, who joined the lively discussion via Zoom.
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Pictured above left to right: Liz Eastin, Dr. Amanda Goldin, and Dr. Russell Stitzlein
Upcoming Events - Save the Dates!
The Run for Sweet Caroline Boca Raton, FL - April 19, 2026
The first annual Run for Sweet Caroline will take place on April 19, 2026, honoring beloved wife, mother, and friend Caroline Rhine, who passed away from the rare cancer leiomyosarcoma in November 2024.
Thanks to generous event sponsors covering the cost of the race, 100% of funds raised through registrations and donations will support sarcoma awareness, patient education and assistance, and research through organizations including the Sarcoma Alliance, Sylvester Comprehensive Cancer Center at the University of Miami, Memorial Sloan Kettering Cancer Center, and the Leiomyosarcoma Support & Direct Research Foundation.
Participants can register individually or create a team to run or walk in Caroline’s honor. The event will feature a 5K Run/Walk, 1-Mile Run/Walk, family activities, and race awards.
The 2026 Sarcoma Exchange July 19, 2026 from 9:00 - 12:30 PST
The Sarcoma Alliance is teaming up with Wendy Walk to host the 9th Annual Sarcoma Exchange on Sunday July 19, 2026 from 9:00AM - 12:30PM PST. This virtual educational program will focus on clinical trials and is designed specifically for sarcoma patients and caregivers.
It will explore topics such as clinical trial basics, what makes sarcoma trials unique, how to find & evaluate trials, what to consider before participating, and the logistics of enrollment and participation, along with a patient panel sharing real-world experiences.
Additional details, including speakers and registration information, will be announced in the coming months.
Coming Soon: Sarcoma Subtypes Webinar Series
The Sarcoma Subtypes Webinar Series is expanding with new sessions currently in development. Board member Brandi Benson-Hicks is helping lead efforts to bring together medical experts, patients and sarcoma advocacy organizations to provide education on specific sarcoma subtypes.
The first planned webinar of the year will focus on Synovial Sarcoma. Dr. Sandra D'Angelo of Memorial Sloan Kettering Cancer Center will present the physician's perspective, and patient advocate Julie Kramer will offer the patient's perspective. Please join us on April 13th, 2026, at 12:00-1:00 PM EST for this free webinar presented in partnership with U.S. World Meds and the Spence Family Synovial Sarcoma Foundation. Registration details will be available on our social media and website.
Additional Sarcoma Subtype Webinars are under development for 2026, and information will be shared soon. We look forward to seeing you online!
Sarcoma News Corner
GIST: The FDA has given breakthrough therapy designation to a combination of two targeted treatments, bezuclastinib and sunitinib, for gastrointestinal stromal tumor (GIST) that didn't respond to imatinib. This is based on great results of a study and should speed the approval of bezuclastinib. Read more here!
Adaptive Radiation Therapy: Hip pain and fatigue seemed to be growing pains or sports injury in 12-year-old Remy Dumas, but turned out to be Ewing sarcoma in his hip and lungs. In addition to chemotherapy, Remy was the first child in Massachusetts to get an advanced form of radiation therapy, which was chosen over complex and debilitating pelvic surgery. Adaptive radiation therapy can be very personalized during treatment, as the child grows or the tumor shrinks, being potentially more effective with fewer side effects. Take a closer look at Remy's story here. Discover more about Remy's story with adaptive radiation therapy
Leiomyosarcoma: A study showed that a combination of two agents given by mouth, the targeted treatment cabozantinib and the chemotherapy drug temozolomide, can be effective in halting disease progression in advanced leiomyosarcoma. Read the technical abstract.
Angiosarcoma & Narrative Medicine: Sarah Downey was a senior in college when she began having symptoms that were diagnosed from flu to stress, and even the wrong type of cancer, but turned out to be cardiac angiosarcoma. Sarah tells her story to raise awareness not only of sarcoma, but of the importance of "narrative medicine", which is conversations with her medical professionals about her life overall. Thank you, Sarah, for bringing up this important issue! Learn more
Legubicin: An intriguing agent, legubicin, delivers a doxorubicin payload directly to the tumor. A study for pre-treated, advanced soft tissue sarcomas showed an impressive increase in progression-free survival, and fewer side effects, compared to doxorubicin alone. Explore more about Legubicin.
A complete response in retroperitoneal dedifferentiated liposarcoma: Wow! A patient with recurrent retroperitoneal dedifferentiated liposarcoma (DDLPS) with certain mutations was treated with the immunotherapy pembrolizumab (Keytruda), which resulted in a pathological complete response. Don't miss the full story!
For daily sarcoma news, visit our Facebook page!
Also, check out our weekly sarcoma fact trivia game, on Facebook and Instagram every Tuesday and Wednesday.
Get Involved!
The Sarcoma Alliance relies on a dedicated group of volunteers to ensure we provide relevant guidance, support, and education for everyone affected by sarcoma. Currently, we have a few immediate volunteer needs:
Social Media Volunteer to dedicate 1-5 hours per week on various platforms including Instagram, YouTube, and Tik Tok.
Communications & Outreach Volunteers: to help support our numerous communications and outreach initiatives including the Sarcoma Exchange, quarterly newsletters, social media presence and more!
If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance.
