SUMMER 2023 NEWSLETTER

President's Corner

I am honored and thrilled to serve as the President of the Sarcoma Alliance Board of Directors once again. What an amazing organization we have all created from scratch. Suzanne Leider, our founder and my little sister, would be so proud of our work since our founding in 1999!

The lifeblood of any nonprofit organization is its volunteers, including Board members who contribute precious time and energy to define and advance the organization’s mission. In this edition of our Newsletter and those to come, we will shine a spotlight on those often camera-shy folks who continue to contribute so very much to the Sarcoma Alliance and the larger sarcoma community.

In this issue, you will read:

·       An article by our brilliant VP and Board member, Joan Darling, detailing the history of sarcoma research and promising studies currently in progress. Joan also authors the incredibly informative Facebook and Instagram updates on the latest in sarcoma research.

·       A feature detailing some of the resources the Sarcoma Alliance offers to guide, educate and support those with sarcoma and their loved ones. I’d like to give a special shout out to Sandra Leskovicz Lode and Candace Marie Howard, who serve generously and ably as volunteers moderating our lively Facebook support group, which now boasts over 13,000 subscribers.

·       A save-the-date for the Sarcoma Alliance’s 6^th annual Sarcoma Exchange, spearheaded throughout its history by Secretary and Board member extraordinaire Suzanne Schwartz.

·       A profile on volunteer Jackson Rhine, who has chosen to channel his concern regarding his mom’s sarcoma diagnosis into efforts to help others.

·       A note about stellar Board member and Ambassador Brandi Benson’s attendance and foundational work at the last American Society of Clinical Oncology (ASCO) meeting in Chicago.

·       A note on superstar surgeon, Dr. William Tseng, a member of both our Board of Directors and our Medical Advisory Board, who will be presenting at this year’s Connective Tissue Oncology Society (CTOS) meeting in Dublin, Ireland.

·       A note about our newest Board Members Emeriti, Marites Tullius and Kevin Plottner, who are also the longest-serving Board members in our history!

·       A plug for our Pampered Chef fundraiser honoring Sarcoma Awareness Month put together by my older sister and dynamo Board member Stephanie Leider.

We are grateful to these amazing individuals and so many others who have contributed their money, time, effort and love in support of those with sarcoma and their families, friends and caregivers.

Thank you!  

Sarcoma Treatments

We thought it might be helpful to summarize (and celebrate!) some of the advances in sarcoma treatment that have taken place since the Sarcoma Alliance was born in 1999.

The standard treatments for most sarcomas have been around for many years, and they center primarily on surgery, chemotherapy, and radiotherapy. For example, doxorubicin, still a staple of chemotherapy treatment, was first used for sarcomas in the 1970s. However, 21st century research methods have identified a number of genetic targets in sarcomas, and scientists are developing inhibitor drugs and immunotherapies to attack them. Although better treatments are still needed for most sarcomas, the number of new agents already approved is encouraging. Here is a brief timeline of FDA approvals:

• 2001 - the first targeted treatment for a sarcoma was approved by the FDA. Imatinib mesylate (Gleevec®) is an inhibitor of the KIT gene, which is present in most gastrointestinal stromal tumors (GIST), a type of sarcoma. This treatment showed that it was possible to treat sarcomas by targeting specific genes that are mutated or over-expressed in tumor cells as compared to normal cells.
• 2006 - Sunitinib malate (Sutent®) for GIST
• 2012 - Pazopanib (Votrient®) for certain soft-tissue sarcomas
• 2013 - Regorafenib (Stivargo®) for GIST
• 2013 - Denosumab (Xgeva®) for giant cell tumor of bone (similar to sarcoma)
• 2015 - Eribulin mesylate (Halaven®) for liposarcoma
• 2015 - Trabectedin (Yondelis®) for liposarcoma and leiomyosarcoma
• 2018 – Larotrectinib (Vitrakvi®) for infantile fibrosarcoma and other sarcomas with NTRK fusions
• 2019 – Pexidartinib hydrochloride (Turalio®) for tenosynovial giant cell tumor (TGCT)
• 2020 - Tazemetostat hydrobromide (Tazverik®) for epithelioid sarcoma
• 2020 - Avapritinib (Ayvakit®) for GIST
• 2020 - Ripretinib (Qinlock®) for GIST
• 2021- Nab-sirolimus (Fyarro®) for perivascular epithelioid cell tumor (PEComa)
• 2022 – Atezolizumab (Tecentriq®) for alveolar soft part sarcoma (ASPS)

Note that the drugs above might also be useful for other sarcoma sub-types with specific gene characteristics. In addition, certain treatments approved for other cancers, such as pembrolizumab (Keytruda®), have also proven effective for some sarcomas. And there are a number of additional potential sarcoma treatment agents in development. Advances continue to be made, so stay tuned! 

For daily sarcoma research news, visit the Sarcoma Alliance Facebook news feed.  

Sarcoma Support Groups

The Sarcoma Alliance believes that no one should be alone on their sarcoma journey. If you are a patient, survivor, relative, caregiver, or friend seeking support, here are some options. You are not alone!

Are you looking for a large, supportive group of people who know just what you are going through? The Sarcoma Alliance Support Group is a private group on Facebook that has over 13,000 members. Please join us.

Or do you prefer a one-on-one connection? The Sarcoma Alliance and Imerman Angels have partnered to match people facing sarcoma with someone who has been on a similar journey. Through their unique matching process, Imerman Angels partners anyone, anywhere, and at any stage in their cancer journey, with someone who has faced a similar diagnosis and experiences - a “Mentor Angel.” Find out more here.

If you live in California, the Sarcoma Alliance coordinates with the Cancer Support Community South Bay for a monthly meeting of sarcoma survivors and caregivers. Meetings are currently offered virtually via ZOOM on the 2nd Saturday of the month, 11 AM – 1 PM. For more information, please call (310) 376-3550 or visit the CSCSB site.

And you can find a number of other support groups throughout the U.S. and worldwide, including groups that focus on specific subtypes of sarcoma, on the Sarcoma Alliance support resources page.

Our sixth annual Sarcoma Exchange conference will be held virtually this year in cooperation with MD Anderson Cancer Center in Houston on the weekend of October 14-15, 2023. The Exchange is an opportunity for sarcoma patients, survivors, caregivers, and health care providers to share information. As in past years, we will once again have presentations from leading sarcoma experts, with opportunities for you to ask them questions. Save the date and keep checking our website for details about our upcoming Sarcoma Exchange – we look forward to welcoming you!

The Sarcoma Alliance is grateful to our corporate sponsors – Genentech, Deciphera, Aadi and Eisai – for their generous support of this year’s Sarcoma Exchange.  Thank you!

Hi Jackson.  Please tell us a bit about your family and your connection to sarcoma.

My mom’s name is Caroline, and my dad’s name is Mike. I have a younger brother named Evan, and he is fifteen years old and a sophomore at my high school. Evan has volunteered in cancer awareness runs with me, including Sully’s Run with the Sarcoma Alliance. I have a very close family and we spend a lot of time together.

My mom has been managing her sarcoma for the past 3 years, and she has had treatment and surgeries with sarcoma specialists, both locally at the University of Miami Sylvester Center and also at Memorial Sloan Kettering (MSK) in New York. When she was first diagnosed with sarcoma, she was assigned a regular oncologist, but because of her research with the Sarcoma Alliance, she made the switch to sarcoma specialists for her care.

Where do you live and go to high school?  What activities do you pursue at school?

I live in Boca Raton, FL and go to school at Pine Crest High School in Fort Lauderdale. At school, I am a distance runner on the cross country and track and field team. I have run in about twenty different meets so far with distances ranging from 800 meters to 5000 meters, including district and regional level meets. I am also involved in the Technology Student Association (TSA), which is a STEM-based club that puts on many different events. I have always loved board games, so I compete in the Board Game Design group (we create a board game of our choice) and the Geospatial Technology group (a research event that is based on a different topic each year), and our group has received national awards in both of these competitions. I am most proud of our board game designs that were awarded first place two years in a row at TSA states. We placed fifth place in Board Game Design and seventh place in Geospatial Technology at TSA nationals this past year.  I am also part of the school’s Cancer Awareness Club, and I have participated in this group by volunteering at 5k runs that raise awareness for cancer.

Are there any rituals or traditions your family has developed that have helped you mark important days in your mom's treatment and support her while also continuing to move forward and support each other as a family? 

We always have a big sushi dinner out right before my mom starts chemo and we enjoy weekly sushi when she is on a chemo break. My mom also taught me how to make my favorite dinners such as penne bolognese and lentils with rice so that I can make them myself when she doesn’t feel like cooking dinner. 

Every summer we go to New York as a family for my mom’s scans at MSK, and we always plan fun things to stay busy in order to reduce the stress of the upcoming scan. On our last trip to NY, we played putt putt golf on the pier, visited the Museum of Illusions, enjoyed gelato, and walked across the Brooklyn Bridge. During the school year, my parents travel to MSK in New York about once every two months for scans or treatments and my grandmother (Mimi) has always stayed with us and helped out when my parents are out of town. We always celebrate any positive news or scans; for instance, we planned a last-minute vacation over winter break after a successful surgery and scan.

What are you doing this summer?

 I am really excited to be attending a 6-week research program this summer called Summer Science Program (SSP). I will be living in a dorm at UNC Chapel Hill with 35 other students and studying astrophysics by predicting the orbit of a near earth asteroid and then reporting my group’s observations to the Minor Planet Center. I have always loved learning about outer space, and being able to learn about my three favorite academic topics (space, science, and calculus) is really my dream summer program.

Do you know where you'd like to go to college (if you plan to go to college) and what you might want to study or pursue as a career?

 I have toured a few colleges and plan on visiting more schools later in the summer. I would like to attend a strong academic institution with research opportunities where I can find my passions through both independent and collaborative work, and while at the same time continue to serve my community. For my studies, I would like to pursue a STEM related field as my current interests are math and science. 

Do you have any words of wisdom for other children of sarcoma survivors?  What has helped keep you healthy and sane so that you can be supportive of your mom and family?

My most important advice is to prioritize family time, even the little things such as having family dinners together, watching sports, or laughing at funny movies together. My mom was diagnosed at the start of COVID, and even though that was a hard time with online school and social distancing, I am grateful for the time I spent at home while she was recovering and going through treatment.  I would say that it is also important to spend time with your friends and keep doing the things that you enjoy and are passionate about. Outside of school, I like running, tennis, playing board games, and watching Miami sports teams, and it is important to continue to enjoy what you love to do. And most important is to always have hope. These are the important things that have helped me.

Raising Sarcoma Awareness and Vital Funds

There is still time to shop for amazing cooking items from Pampered Chef and support the Sarcoma Alliance in the process! This year our featured fundraiser in honor of Sarcoma Awareness Month (July) lets you select from a wide variety of kitchen products – everything from pots and pans to blenders to yummy additions for your pantry! – and 30% of all proceeds will benefit the Sarcoma Alliance.  Even though Sarcoma Awareness Month is now over, you can still visit our special shopping link and make your favorite purchases by August 29, 2023: https://www.pamperedchef.com/party/sa0823. If you have any questions, please contact our Consultant, Diane McRae, through the shopping link.

Of course, if you’d prefer to make a donation directly to the Sarcoma Alliance, we are always grateful for the support! 

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education, and support. You can help us continue our important mission by donating.

Together we can make a difference!

ALLIANCE NOTES

·       At this year’s annual Board of Directors retreat in January, the Board voted unanimously to award our highest honor, the title of Board Members Emeriti, to Kevin Plottner and Marites Tullius, the Board’s longest serving members. Over the years, Kevin has designed most of our beautiful graphics (featured on our website, letterhead, brochures, etc.). Marites, a veteran nurse, was dear friends with our founder, Suzanne Leider, and headed up our Client Services offerings for years.  You can read more about Marites and Kevin, other Board Emeriti, and our present Board members, by clicking here.

·       On January 18, 2023, Board President Philip Leider and Vice President Joan Darling participated in a roundtable hosted by the Leiomyosarcoma Support and Direct Research Foundation (LMSDR) entitled “Sarcoma Support.”  Joan and Philip were joined by representatives from our allies Sarcoma Foundation of America, Lazarex Cancer Foundation, and Northwest Sarcoma Foundation in showcasing our respective support offerings for people with sarcoma.

·       Board member Brandi Benson represented the Sarcoma Alliance at this year’s American Society of Clinical Oncology (ASCO) meeting in Chicago, Illinois, which took place June 2-6, 2023. Brandi met with other community activists, medical professionals, and pharmaceutical representatives in addition to attending the various presentations sharing the very latest in cancer research.

·       Surgical oncologist William Tseng, a member of our Board and Medical Advisory Board, was recently featured in a dramatic surgical success story for a graduate student with recurring retroperitoneal leiomyosarcoma. Click here to view the article. Dr. Tseng will co-chair a presentation entitled “Operative and Procedural Videos in Sarcoma Management” at this year’s meeting of the Connective Tissue Oncology Seminar (CTOS), in Dublin, Ireland November 1-4, 2023.

·       Sully’s Halloween Run 5K, which benefits the Pearl Mae Foundation and the Sarcoma Alliance, will take place on October 21, 2023, in Jupiter FL. The run honors Lauren Sullivan, founding Executive Director of the Pearl Mae Foundation, who died of Follicular Dendritic Cell Sarcoma. Click here for more details and have a great run!