SUMMER 2022 NEWSLETTER

Are you registered for the 2022 Sarcoma Exchange?

July 22nd - 24th · Los Angeles

We're looking forward to hosting the 5th Annual Sarcoma Exchange the weekend of July 22nd at the Hyatt Regency LAX in Los Angeles. This educational conference will feature sessions from leading physicians on topics ranging from mental health and exercise to immunotherapy and clinical trials.

Join us in Los Angeles or virtually to learn from, and be inspired by, other members of the sarcoma community. For those who will be attending in person, we'll have breakout sessions to meet, make connections, and exchange information with other participants. We'll also host a Trivia Night as a fun way for participants to hang out together, and test their knowledge of sarcoma, pop culture, and everything in between.

If you haven't already, reserve your spot at this year's Sarcoma Exchange. There is no cost to register or attend the conference. We'd love to see you there!

Register Now

Meet Our New Team Members

Kristin Barsness, Interim Executive Director

We are excited to announce the appointment of Kristin Barsness, PhD, CFRE as the Sarcoma Alliance's Interim Executive Director following the departure of Executive Director Alyssa O'Driscoll. Kristin brings more than 20 years of nonprofit executive and fundraising experience to her role as Interim Executive Director for the Sarcoma Alliance. Her background includes leadership roles in healthcare and higher education fundraising, 11 years of fundraising consulting for nonprofits across the Pacific Northwest, and a career serving the nonprofit sector. Kristin has earned a reputation for extensive frontline nonprofit leadership and fundraising as well as consulting experience with a depth of campaign, planning, and forecasting skills.

As Executive Director for Mary Bridge Children's Hospital Foundation, Kristin worked with children, adolescents, and young adults diagnosed with cancer and the donors dedicated to ensuring that pediatric specialty care is available and accessible for all who need it. She is passionate about the Sarcoma Alliance's mission to improve the lives of people affected by sarcoma and looks forward to helping the organization get ready for its next chapter.

Gabriella Rojas, Marketing Specialist

We are also thrilled to announce that Gabriella Rojas has joined our team as the Sarcoma Alliance's Marketing Specialist. Gabriella first engaged with us as our Marketing and Communications Intern as a recent college graduate with a bachelor's in business administration and a concentration in marketing. She has a background in cancer non-profits and interned at the Cancer Research Institute, where she assisted in the organization's social media efforts. In this role, Gabriella delved into cancer immunology and learned about each cancer type and the role of immunotherapy in cancer treatments. She realized she was passionate about giving back and supporting cancer-related causes and continued her career with us. With the Sarcoma Alliance, she enjoys fulfilling projects, endless learning opportunities, working with incredible people, and striving to make a difference in the lives of people affected by sarcoma.

ASCO Conference in Chicago

This June, the Sarcoma Alliance participated in the annual meeting of the American Society of Clinical Oncology (ASCO), which is the largest international cancer conference. And this year, after two virtual years, we were there in person! The conference included numerous poster and oral presentations over several days, patient advocate events, and informational booths for pharmaceutical companies, hospitals, other institutions, and non-profit organizations.

Some of those who represented the Sarcoma Alliance were physicians who gave or attended presentations. Others were there as sarcoma patient advocates, attending presentations about sarcoma studies, talking to people involved in developing new treatments, exchanging news and ideas with allied non-profit organizations, and providing information for visitors to our booth.

We enjoyed seeing friends and colleagues, but even more importantly, it was wonderful to connect with researchers and pharmaceutical companies that are developing new sarcoma treatments. This newsletter’s Sarcoma News Corner focuses on ASCO sarcoma news.

Members of the Sarcoma Alliance Board of Directors (BOD) and Medical Advisory Board (MAB) got together for the first time in three years at the ASCO meeting. From left around the table: Brandi Benson, BOD; Dr. Gina D’Amato, BOD and MAB; Dr. Jonathan Trent, MAB; Dr. William Tseng, BOD and MAB; Jennifer Nellany, BOD President; Dr. Seth Pollack, MAB; Suzanne Schwartz, BOD; Joan Darling, BOD.

Join us for Sarcoma Awareness Month

Nobody should face sarcoma alone. If you agree, please join us in raising awareness this Sarcoma Awareness Month! We'll be sending out updates throughout the month of July, but here a few ways you can get involved:

Raise awareness by re-posting our social media content or create your own. Get started with this graphic or hang up our flyer in your community.

Add a donation sticker to your Instagram Story, create a Facebook Fundraiser, or even launch your own initiative and collect donations on a GoFundMe peer-to-peer campaign.

Yellow is the theme color of Sarcoma Awareness Month. Brighten up your style with yellow clothing, hats, jewelry, makeup, nail polish, sunglasses, bags, etc, and sprinkle in some sunflowers for good measure.

Fuel our work to provide connection, information, and support to everyone facing sarcoma by donating to the Sarcoma Alliance online.

Click the button below to find additional awareness activities.

Raise Awareness

Follow us on social media for more Sarcoma Awareness Month content and don't forget to tag us in your posts!

Ewing Sarcoma Treatment Study

For Children and Young Adults

About Ewing Sarcoma

Recurrent or refractory Ewing sarcoma is a type of bone and soft tissue cancer that either is still present after treatment (refractory) or goes away only for a limited time (recurrent). Current treatments for Ewing sarcoma include chemotherapy, surgery, and radiation. Unfortunately, treatment options for people with recurrent or refractory Ewing sarcoma are limited and may not provide adequate improvement. Medical teams are working to improve the treatment options for people with recurrent or refractory Ewing sarcoma.

The Ewing Sarcoma Treatment Study for Children and Young Adults

The Pfizer A5481092 Study is a Phase 2 investigational research study comparing the effectiveness of the study medicine palbociclib when taken in combination with chemotherapy medicines irinotecan (IRN) and temozolomide (TMZ) versus IRN and TMZ chemotherapy alone for the treatment of Ewing sarcoma. Palbociclib (IBRANCE®) is currently approved for the treatment of breast cancer in adults. About 75 children, adolescents, and young adults will be enrolled. The study will be available at more than 100 different study sites in North America, South America, Europe, and Asia.

Who Can Participate

This study may be an option for children and young adults who:

- Are 2 to 20 years old

- Have been diagnosed with recurrent or refractory Ewing sarcoma

- Have not received prior treatment with a CDK4/6 inhibitor

There are other requirements to join this clinical study. A study team member will help determine if this study is right for you and your family based on all participation criteria.

What to Expect

If you decide to participate in this study, you or your child will be randomly assigned in a 2:1 ratio to receive the study medicine palbociclib in combination with IRN and TMZ, or IRN and TMZ alone. This means that all participants will receive chemotherapy, and participants are twice as likely to receive palbociclib than not. Participants will not be able to choose, but they will know what they have been assigned to receive.

The study medicines are taken in 21-day treatment cycles. The number of treatment cycles completed will vary for each person depending on how they respond to the treatment. Participants may continue study treatment for as long as it is of benefit to them.

You or your child will need to attend regular visits at the study site for study treatment administration. These visits may include health assessments, questionnaires, blood samples, ECGs, CT/MRI scans to monitor how you or your child responds to treatment, and in younger patients, DEXA scans (X-rays that measure bone density). All study activities, including study assessments, procedures, and treatments that are not part of your or your child’s regular medical care will be provided at no cost to you.

Learn More

To learn more or connect with a member of the study team, please visit www.ewingsarcomastudy.com or call 800-887-7002. If you are a physician interested in referring a patient, please call 833-751-4343.

Sarcoma News Corner

Amazing results in the clinical trial of the oral targeted treatment BI 907828 for advanced liposarcoma! Almost 90% of patients with dedifferentiated liposarcoma had disease control (tumor shrinkage or stable disease), and all patients with well differentiated liposarcoma had disease control.

A preliminary clinical trial for patients with advanced or metastatic myxoid/round cell liposarcoma showed that a single injection of the modified T-cell drug letetresgene autoleucel (lete-cel) had antitumor activity, according to results presented at the ASCO meeting. Encouraging news!

A new Phase 2 clinical trial for conventional chondrosarcoma of the antibody INBRX-109 was described in detail at an ASCO poster presentation. The Phase 1 trial showed that almost 90% of the patients had tumor shrinkage or stable disease, so this is potentially an important new treatment! This page links to the poster for complete information on the study.

The targeted treatment larotrectinib (Vitrakvi) showed long-term effectiveness for pediatric sarcomas, especially infantile fibrosarcoma and other soft tissue sarcomas with NTRK gene fusions, according to results of two clinical trials presented at ASCO. Exciting!

A Phase 1 study for advanced leiomyosarcoma of a new oral agent, unesbulin (PTC596), that stops tumor cells from dividing, showed disease control or tumor shrinkage in about half of patients. This is exciting because in general, Phase 1 studies mostly look at drug safety, not effectiveness.

Good news! Results presented at the ASCO meeting of a clinical trial for dedifferentiated liposarcoma (DDLPS) and undifferentiated pleomorphic sarcoma (UPS) showed that treatment prior to surgery with immune checkpoint blockade drugs (a type of immunotherapy) resulted in better outcome, particularly for tumors with certain biologic markers. Connects to ASCO abstract.

A Phase 2 clinical trial tested the targeted treatment olverembatinib for gastrointestinal stromal tumor (GIST) that is resistant to standard TKI inhibitors showed good anti-tumor activity. This article includes the abstract presented at ASCO meeting.

You can search for other ASCO sarcoma presentations here.

For daily news items, visit the Sarcoma Alliance Facebook news feed.

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