WASHINGTON, D.C., October 12, 2022 — The Cancer Support Community (CSC) released their Cancer Cachexia Voice of the Patient Report as a follow-up to their Externally Led Patient Focused Drug Development Meeting. The meeting provided an opportunity for people impacted by the unintentional weight loss, muscle weakness, fatigue, and intense psychosocial impact of cancer cachexia to come together and describe their experiences to healthcare providers, researchers, and other key stakeholders.

Debbie Weir, CSC’s CEO said, "CSC is so grateful to the many courageous patients and caregivers who came forward to tell their stories, share their experiences, and provide their insights about how we can collectively do better to understand, manage, and treat cancer cachexia.”

The Cancer Cachexia Voice of the Patient Report details experiences of living with cancer cachexia and perspectives on current and future treatment options for cancer cachexia. Highlighted throughout the report is the importance — to patients and caregivers alike — of cancer cachexia to become a focus of study that will lead to treatment options that improve quality of life, decrease muscle loss and fatigue, and boost appetite.

The report will contribute to the U.S. Food and Drug Administration, medical product developers, healthcare providers, researchers, and other key stakeholders’ understanding of the severity of this condition and the critical need for novel treatment options.

“In shedding light on the intense physical and psychosocial impact of this condition, we can start to recognize ways to lessen its impact on future cancer patients and their loved ones,” said Weir.

CSC is thankful for financial support from Pfizer, Roche Diagnostics, and AVEO Oncology to complete this project. CSC would also like to thank the Cholangiocarcinoma Foundation, LUNGevity Foundation, the Pancreatic Cancer Action Network (PanCAN), and AnCan for their in-kind support and outreach to help engage patients and caregivers.

Read the report and watch the recording of the meeting.

About the Cancer Support Community

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club network partners, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization’s Institute for Excellence in Psychosocial Care includes an international network that offers the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C., and across the nation.

The duo’s run will aid in the organization’s mission to support people impacted by cancer.

Support Sierra and Allegra’s run for CSC

WASHINGTON, D.C., September 21, 2022 — Award-winning Broadway star Sierra Boggess and her sister, music educator Allegra Boggess, will be running the TCS New York City Marathon on Sunday, November 6, to raise awareness and funds for the Cancer Support Community. The sisters are teaming up with CSC for the organization’s second year as an Official Charity Partner of the marathon.

Sierra first became acquainted with CSC when a friend invited her to join in volunteering at Gilda’s Club Westchester, one of the organization’s 190 network partner locations. CSC provides $50 million in free navigation and support services to patients and their loved ones at these locations, online, and via our toll-free Helpline. Working with children who have family members impacted by cancer was deeply meaningful.

“It was just one day, and it was life-changing. I was so moved that I left weeping,” Sierra said. She added, “It’s unbelievable how this organization supports not only the individual dealing with the disease but their families as well. I know I can’t do this life without my sisters and I know no one should have to face a difficult period without love and support.”

Sierra Boggess is an Oliver Award-winning actress who played Phantom of the Opera’s leading lady Christine Daae in the Broadway, West End, and televised 25th-anniversary concert production of the musical. Sierra made her Broadway debut as Ariel in The Little Mermaid, and her additional Broadway credits include Master Class, It Shoulda Been You, and School of Rock. Allegra Boggess is a full-time educator and serves as the orchestra director and the choir director at Rabun Gap-Nacoochee School, a boarding school in Georgia. Previously, Allegra spent five years teaching at the Afghanistan National Institute of Music, Afghanistan’s first music school.

The sisters discovered their mutual love for running during the pandemic, and they credit the activity for bringing them closer together while isolating. Allegra began running when the lockdowns were established, an activity that she says was greatly beneficial for her mental health. Once Sierra learned about her sister’s new hobby, she took up the activity to be supportive and feel connected to Allegra despite the distance between them. From their respective locations, the pair would check in on each other’s running progress and offer each other motivation and encouragement.

After successfully running the 2022 RBC Brooklyn Half marathon together, they decided to take their dedication to the sport to the next level. “Running was something that became an important part of my life,” said Allegra. “And I love running with Sierra. After she saw the TCS New York City Marathon last year, she came to me and said, ‘We need to do this together.’ And I couldn’t have agreed more!”

Last year’s marathon marked the city’s return to hosting the event after being paused in 2020 due to the pandemic. 2021’s race was marked by all-around excitement. Many celebrities participated by running for their favorite charities and nonprofit organizations, including Tony-award-winning Broadway star Kelli O’Hara who ran on behalf of CSC.

With a break in her busy Broadway schedule, the timing was right for Sierra to run the 2022 marathon. Inspired by Kelli O’Hara, Sierra and Allegra are excited to follow in her footsteps.

“Undertaking this challenge for such an important cause is tremendous motivation,” the duo shared jointly. “We will be running 26.2 miles side by side, supporting each other every step of the way as we work together to make a difference in the life of people living with cancer.”

Support Sierra and Allegra’s run for CSC

About the Cancer Support Community

As the largest professionally led nonprofit network of cancer support worldwide, the Cancer Support Community (CSC), including its Gilda’s Club network partners, is dedicated to ensuring that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community. CSC achieves its mission through three areas: direct service delivery, research, and advocacy. The organization’s Institute for Excellence in Psychosocial Care includes an international network that offers the highest quality social and emotional support for people impacted by cancer, as well as a community of support available online and over the phone. The Research and Training Institute conducts cutting-edge psychosocial, behavioral, and survivorship research. CSC furthers its focus on patient advocacy through its Cancer Policy Institute, informing public policy in Washington, D.C., and across the nation.