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Happy Sarcoma Awareness Month!
The President’s Corner
In this issue of our Newsletter, we spotlight some of the amazing people and developments that make us especially hopeful this year:
- Board members Julie Johnson and Stephanie Leider kept us connected to the incredible innovations in sarcoma research shared at this year's ASCO conference in Chicago by the world's leading cancer researchers;
- Volunteers Wes Eteiwi and Harmony and Seth Johnson set an extraordinary example for all of us to follow as we work to conquer Ewing's Sarcoma and PEComa and spread awareness about the continuing challenges sarcoma patients of all subtypes continue to face;
- Board members and Board Emeritii (including Brandi Benson, Julie Johnson, Suzanne Schwartz and Joan Darling) are working hard to bring our community outstanding educational content about PEComa, Desmoid Tumors, and the state of the art in sarcoma care and research through webinars and our annual Sarcoma Exchange;
- And as we approach our 25th anniversary as an organization, I was deeply honored to share the story of the journey with synovial sarcoma of our revered founder and my sister, Suzanne Leider, in a movingly presented video put together by Adaptimmune, a leading innovator in cutting-edge cell therapy.
I wish you all a happy and healthy Sarcoma Awareness Month!
A Delicious Way to Celebrate Sarcoma Awareness Month
by Stephanie Leider
My sister Suzanne, who founded the Sarcoma Alliance while living with synovial cell sarcoma, gathered
her own recipes and those of family and friends to create a cookbook – Sage Cuisine – to raise the funds
needed to start this wonderful organization almost 25 years ago. It was the perfect way to begin as
Suzanne firmly believed that “sharing a wonderful meal with loved ones is as important as any other
treatment in the process of healing.”
Sarcoma Alliance founder Suzanne Leider in her garden
As you celebrate Sarcoma Awareness Month this July in your corner of the world, we invite you to cook a delicious meal and share it with your family and friends to spread a little love and healing. In that spirit, we wanted to share the recipe for July Pasta, which Suzanne included in Sage Cuisine (unfortunately it is no longer in print). It’s a dish that even beginner cooks, like me, can pull off successfully.
July Pasta Recipe
Makes 8 servings
- 3 tablespoons fresh basil, chopped
- 8 Roma tomatoes, chopped
- 2 pounds assorted cherry tomatoes, halved
- 1 teaspoon red pepper flakes
- 3 tablespoons Italian parsley, chopped
- 1 pound of fresh mozzarella cheese, chopped bite-size
- Salt to taste
- 1.5 tablespoons balsamic vinegar
- 3 tablespoons extra virgin olive oil
- 2 cloves garlic, finely chopped
- 1 pound penne pasta, cooked al dente
Combine all ingredients (except pasta) and marinate at least 1 hour at room temperature. When ready to eat, cook pasta and toss with marinated ingredients. Serve hot or cold and pass parmesan cheese and freshly ground black pepper.
We encourage you to email a photo of your gathering to info@sarcomaalliance.org. We’ll feature as many photos as we can in future newsletters. Bon appétit!
Recent Highlights
Sarcoma Alliance at ASCO 2024: Advancing Research and Partnerships
The American Society of Clinical Oncology (ASCO) conference, held from May 31 to June 4, 2024, in Chicago, IL, is one of the largest and most prestigious cancer research events in the world. This year, it brought together over 40,000 oncology professionals for a week of groundbreaking research and collaboration. With more than 200 professional sessions and 5,000 abstracts discussed, ASCO is a hub for the latest advancements in cancer treatment and care.
Board Members Stephanie Leider and Julie Johnson with a representative from Imerman Angels
Representing the Sarcoma Alliance, Board Members Julie Johnson and Stephanie Leider attended the conference in person, while Joan Darling participated virtually. Their presence at ASCO was pivotal in learning about the latest research in the sarcoma field, connecting with leading sarcoma physicians, and exploring potential partnerships with pharmaceutical and biotech companies. These collaborations aim to enhance patient education, guidance, and support, ultimately improving the experiences and outcomes for those affected by sarcoma.
Seth and Harmony: Continuing the Fight Against PEComa One Triathlon at a Time
You may recall us sharing Seth and Harmony's story in recent weeks: Harmony, a PEComa survivor, and her husband Seth, have dedicated themselves to raising awareness about PEComa, a very rare sarcoma that can appear almost anywhere in the body, but it is often found in the uterus, skin, liver and gut.
"Sports are similar to life in that they teach us great lessons. It's all about how you handle adversity." - Seth
Seth, a seasoned triathlete, recently completed the Ascension Seton CapTex Tri on Memorial Day in Austin, TX. In the future, Seth will race in a custom designed PEComa Awareness suit to further their cause and to raise funds to support those affected by sarcoma, including PEComa.
His next Olympic length race and new suit debut will be September 8!
As Seth continues to race in honor of Harmony and to raise awareness for PEComa, let’s rally behind them and support their incredible journey.
"Do not think too hard about what your prognosis is. The battle is within your mind more than it is with cancer." - Harmony
Patient Spotlight
When Wesam “Wes” Eteiwi was first diagnosed with Ewing's sarcoma in his vertebra, he was in disbelief. "For the first month or so, I was in denial."
The gravity of his situation still didn't seem to sink in after a frank discussion with a hematologist who connected him with a top oncologist at Stanford Hospital. But surrounded by a loving and supportive circle of family, friends, and coworkers, he was able to focus on treatment. "I never had to worry about who was going to take me to an appointment or where my next meal was coming from," Wes says, expressing his gratitude for his support system.
His oncologist, Dr. Ganjoo, designed a rigorous regimen due to Wes's age at the time and positive outlook. The journey began with chemotherapy, alternating between inpatient and outpatient
sessions. During inpatient treatments, Wes spent five grueling days at Stanford Hospital, receiving up to 10 hours of chemo and fluids each day. The outpatient sessions, although shorter and less taxing, were equally crucial.
Midway through chemotherapy, Wes had surgery to remove a portion of his T-8 vertebra. In addition to the challenge of recovering from surgery, he continued on chemo, to finish a total of 14 sessions, and transitioned to a five-week course of radiation therapy. "Having back surgery was physically challenging, but I was focused on getting back to where I was pre-cancer, if not better," he says. His commitment to staying active and pushing his physical limits continues to this day, culminating recently in his ability to run and sprint again.
The emotional toll of battling Ewing's sarcoma was immense, but Wes knew that maintaining his mental health was just as crucial as the physical treatments. He emphasizes, "The mental piece is HUGE." To keep a sense of normalcy, Wes adhered to a routine, even during his hospital stays, beginning each day with a shower, followed by breakfast and a walk around the cancer floor for exercise.
"The second you stop eating is the second you open the door for cancer to take over. You need to want and believe that you can fight cancer, and YOU CAN!"
Wes says his mental fortitude was bolstered by three key elements: a strong support system, maintaining his appetite, and an unyielding belief in his ability to beat cancer. "The second you stop eating is the second you open the door for cancer to take over," he advises.
As a team member of Enterprise Mobility, Wes played a pivotal role in securing a $2,500 grant for the Sarcoma Alliance from the Enterprise Mobility Foundation™
The Enterprise Mobility Foundation's mission is to strengthen communities by supporting a wide range of charitable causes, including health and human services, education, the environment, military, and disaster relief. To date, the Enterprise Mobility Foundation has contributed over half a billion dollars to thousands of local nonprofits across the United States, making a significant impact through both global initiatives and community-focused projects.
Wes's journey and his contribution to the sarcoma community serve as a powerful reminder of the importance of resilience, support, and the will to make a difference. We hope Wes's story inspires you with hope and a renewed commitment to support and improve the lives of people affected by sarcoma.
Upcoming Events
PEComa Webinar
July 31, 2024
3:00 - 4:30 p.m. EST
Free event
The Sarcoma Alliance, in collaboration with Aadi, is proud to present an annual educational webinar, specifically focusing on the rare and often misunderstood malignant PEComa tumors.
This free virtual event is designed to enhance awareness and provide comprehensive education for healthcare professionals, patients, and caregivers.
Join Dr. Andrew Wagner, PhD from Dana Farber Cancer Institute, PEComa survivor Harmony Johnson, and her husband Seth for a discussion on critical topics, including patient journeys, treatment options, and best practices for managing malignant PEComa.
Recordings of the webinar will be accessible via the Sarcoma Alliance and Aadi platforms, ensuring ongoing availability for those seeking to deepen their understanding and support community building within the rare cancer landscape.
The Sarcoma Exchange
October 5-6, 2024
Free event
This event is specifically crafted for sarcoma patients and their caregivers, offering a unique opportunity to hear directly from some of the top sarcoma specialists in the United States.
The agenda is designed to benefit both newly diagnosed and veteran patients, covering a range of crucial topics. Attendees will gain valuable insights on the importance of second opinions, the role of the immune system and immunotherapy, the benefits of exercise, and strategies for maintaining mental health.
Don't miss this chance to connect, learn, and empower yourself with knowledge from leading experts.
Coming Soon . . .
Desmoid Tumor Educational Webinars
The Sarcoma Alliance is excited to announce our upcoming initiative to host a series of Desmoid tumor educational webinars this Fall. We are dedicated to supporting individuals affected by rare cancers, including Desmoid tumors, and
recognize the need for accessible education and resources. Through these webinars, we aim to empower Desmoid tumor patients with knowledge about their condition, treatment options, and coping strategies. Details will be announced soon!
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 relies on a dedicated group of volunteers to ensure we provide relevant guidance, support, and education for everyone affected by sarcoma.
Currently, we are in need of a Social Media Volunteer to dedicate 1-5 hours per week on various platforms including Instagram, YouTube, and TikTok.
If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance.
