CTOS is an international group comprised of physicians and scientists with a primary interest in the tumors of connective tissues. Their annual meeting is the premier event for people interested in staying abreast of the latest developments in sarcoma research and treatment. Stephanie and I both served as Board members when the Sarcoma Alliance was founded, now over 25 years ago, and we were truly impressed by the dynamism and energy surrounding sarcoma research at this year's CTOS when compared to the relative obscurity of sarcoma when our organization came into being. The number and quality of exciting new research studies was nothing short of breathtaking. Read more about CTOS, its history, and the proceedings of the 2024 session.

While attending CTOS, another development that struck both Stephanie and me was the flowering of so many new and varied sarcoma support and advocacy organizations all around the world. We were graciously hosted at CTOS by the Sarcoma Patient Advocacy Global Network (SPAGN), and dozens of sarcoma-specific organizations participated. Their posters can be viewed on SPAGN's virtual poster wall.

SPAGN Chief Executive Kathrin Schuster welcomes Sarcoma Alliance President Philip Leider to the CTOS Advocacy Lounge

Stephanie and I were impressed by the incredible work these organizations are each doing to support sarcoma patients and their loved ones, and we were also incredibly proud to see so many of them featuring the sunflower as a symbol.  Our sister Suzanne, founder of the Sarcoma Alliance, selected the sunflower as the symbol of sarcoma advocacy and support when our organization was established, and it was heartwarming indeed to see how many sunflowers have spread around the globe since then.

Since the CTOS 2024 session, the world of cancer treatment and research has been shaken by political developments that continue to dominate headlines as I type this message. Rest assured, the Sarcoma Alliance is not a political organization by design. We serve the sarcoma community, without regard to anyone's political beliefs. Having said that, our current government's efforts to increase efficiency and cut waste have, unfortunately, threatened the momentum and progress that Stephanie and I were so heartened to witness at CTOS. Whatever your political persuasion, I trust that if you are receiving this newsletter you believe people with sarcoma need and deserve to see continued advances in the treatment of this rare and virulent disease. I would urge you to make your views known to your elected representatives.

Sarcoma Alliance News

Sarcoma Alliance Annual Board Retreat

The Sarcoma Alliance Board of Directors gathered in Oakland, California, on January 24-26, for our annual retreat, graciously hosted by board member Stephanie Leider. This dedicated time allows us to focus on developing and refining our strategic plan for the year ahead, ensuring that our mission continues to support and uplift the sarcoma community.

This year, we were honored to welcome Natasha Serrano, mother of a sarcoma patient, whose insights and experiences provided invaluable perspective, reminding us why our work matters. With thoughtful discussions, collaboration, and a renewed commitment to our goals, we look forward to another impactful year ahead!

New Board Member

We are thrilled to welcome Alexander B. Christ, MD, to the Sarcoma Alliance!

Dr. Christ brings a wealth of expertise, having trained at top institutions such as Yale University, the Hospital for Special Surgery, and Memorial Sloan Kettering Cancer Center. His dedication to sarcoma research—particularly in genetics, drug delivery, and reconstruction—aligns perfectly with our mission. At the 2024 Sarcoma Exchange, he delivered a highly regarded talk on amputation vs. limb-sparing surgery, reflecting his commitment to advancing care and improving patient outcomes. We are honored to have Dr. Christ on our board and look forward to the impact he will make in the sarcoma community!

Advocacy in Action

Through countless treatments, the amputation of his right arm and shoulder, and most recently, the difficult decision to amputate his left leg and part of his pelvis, Keith has never allowed this disease to define him. His strength, love for life, and dedication to his family and community continue to inspire those around him.

One of those deeply moved by Keith’s journey is Sydney Powell, a close family friend who has decided to run the New River Marathon in May to honor his courage. Half of the proceeds from her fundraiser will support the Sarcoma Alliance, while the other half will go directly to Keith and his family. Her mission is not only to provide financial support but also to share Keith’s story of perseverance, inspiring others to hold onto hope—even in the face of the unknown.

We asked Sydney how Keith's experience has impacted her and how you can help bring hope and healing to Keith’s family and the sarcoma community.

How has knowing Keith and witnessing his journey impacted your life?Having known Keith my whole life, I think over the course of the years, my experiences and being a witness to his journey have changed as I have gotten older. Keith has impacted many, but he is a constant reminder of two important things to me:

• Even when someone tells you that there are no more options or things that can't be done, have faith that there's always a way and there are possibilities in the unknown.
• Choose to be strong in the way you live because others are a part of your journey too.

What has been the most rewarding or surprising part of your marathon training journey so far? The most rewarding thing has been knowing I am helping so many other people in a variety of different ways, whether I realize it or not. The most surprising thing about my marathon journey has been seeing what I can do physically, for sure!

What message would you give to others considering doing something similar to honor a loved one? There is something so empowering about this type of experience. I can’t explain that feeling, but I will say that a lot of days when I am running and I am exhausted and feel like I can’t do it, I ask myself what I want to be remembered for.

I heard an inspiring quote and it has always stuck with me, and rings true to this experience as well. It says, "When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid." - Audre Lorde.

I chose to do this because I hope my legacy will be that I always chose to help people, no matter what that looked like or who I was fighting for. Don’t be afraid – challenge yourself and be amazed at everything you never thought you were capable of that God allows you to do. #ForKeith

Follow Sydney’s journey and consider supporting her fundraiser.

📲 Follow Sydney for updates on TikTok or Instagram: @sydneypowell__

Seth Johnson Kicks Off Race Season!

Sarcoma News Corner

Interested in more sarcoma-related news? Follow us on Facebook to stay up to date on the latest happenings in the sarcoma landscape, including cutting edge research. 

Get Involved! 

The Sarcoma Alliance is looking for passionate individuals interested in outreach and communications. There are a number of ways you can volunteer - social media management, website assistance, and help with the 8th Annual Sarcoma Exchange tentatively set for July. Email info@sarcomaalliance.org to get involved!

If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance!