Annual 5K event builds awareness and support for rare cancer research

Every July since 2009, the Stomp Out Sarcoma 5K fun run and walk has brought together patients, survivors, family members, health care providers, and supporters to build community and raise awareness and funds for sarcoma research at the University of Michigan Health Rogel Cancer Center.

Anne Maxwell has been organizing Stomp Out Sarcoma since 2015, when Scott Schuetze, M.D., Ph.D., professor of medical oncology and internal medicine and one of Maxwell’s care providers, asked if she would be interested in getting involved.

Maxwell, an experienced runner who had overcome sarcoma, knew she wanted to help.

“I was in remission from Ewing sarcoma,” she says, “and during one of my checkups, Dr. Schuetze asked if I would be interested in taking over Stomp Out Sarcoma. My reaction was, ‘Absolutely, it’s really important to me to give back to this place that saved my life.’”

Funds raised at Stomp Out Sarcoma benefit the Rogel Cancer Center Sarcoma Research Fund. This fund fuels clinical trials of new treatments as well as research that leads to better ways to diagnose and treat sarcoma.

Raising awareness and funds for this work is crucial because this rare cancer, which has many variations and can affect bones and soft tissue anywhere in the body, receives little attention outside of the sarcoma community.

Fostering community

Eager to enhance the event, Maxwell connected with DJ and emcee Kenny Privett. She was surprised to learn that his wife, Rachael Privett, then a medical assistant in Michigan Medicine’s Department of Internal Medicine, was also a sarcoma survivor. Maxwell reached out to introduce herself, and Privett, now a program manager at Rogel, has joined Maxwell in organizing the event each year.

Privett had recently graduated from business school and used her expertise to create a new nonprofit organization to run Stomp Out Sarcoma and facilitate fundraising. 

Privett and Maxwell then focused on transforming Stomp Out Sarcoma into a fun and multi-faceted community event.

“It is much more than a run or walk,” says Maxwell. “We’ve really tried to grow and enhance it to increase awareness and the support we are getting. We have a photo booth, music, speakers, an ice cream truck, and face painting. We’ve just tried to make it a really fun experience.”

“It really fosters community building among participants, survivors, families, healthcare providers, and supporters,” says Privett. “That is important because sarcoma is so rare, and it can feel very isolating.”

A meaningful event

In addition to being a fun and memorable event that raises funds for research, Stomp Out Sarcoma also promotes awareness and honors the sarcoma community in special ways.

Schuetze or another member of the Rogel Cancer Center’s sarcoma team usually speaks about the importance of Stomp Out Sarcoma and other community events in raising funds for clinical trials and other medical research. 

“Oftentimes, research trials are the only options a sarcoma patient may have for treatment,” says Privett.

Maxwell and Privett have also added meaningful ceremonies to recognize people who have been affected by sarcoma.

“During the survivors ceremony,” says Maxwell, “I read a poem about sunflowers by Julieanne Selden, and then we all introduce ourselves and share how long we’ve been a survivor. Some people are still in treatment, but we say that the day you’re diagnosed you’re a survivor because you’re still here. Then we pass out sunflowers to everyone.”

The event also features a survivor speech. “We have a patient from Rogel share their story with everyone,” says Privett, “and it's always really wonderful to hear their stories and the things we've all been through together.”

The survivors ceremony can be very meaningful for current and former patients, in part because they may not normally have opportunities to see others who have had the same experiences as them.

“When you see all these other survivors and feel connected to all of them, it is a really nice moment,” says Maxwell.

“We also added a butterfly release ceremony to the event so that folks who have lost someone have a moment to remember them,” says Privett. “My daughters or I also read a poem for that, and it's a meaningful moment. My husband always plays ‘Somewhere Over the Rainbow,’ and it's very tender and heartfelt for those who have lost someone.”

Making a difference from the lab to the clinic

Schuetze emphasizes the growing importance of community fundraising events like Stomp Out Sarcoma in improving patient care and testing new treatments.

“Stomp Out Sarcoma helps fund sarcoma clinical research at Michigan Medicine and supports investigator-initiated trials,” says Schuetze. “It helps fund trials that originate at U-M and underfunded national trials that we join to offer our patients the opportunity to participate in clinical research.”

This work is often funded by the federal government or foundations, and money raised by fundraisers like Stomp Out Sarcoma is used as supplemental funding. However, the funding environment is changing in ways that make community fundraisers even more important.

“As funding from the federal government and pharmaceutical companies for clinical research and trials in sarcoma declines,” says Schuetze, “we are increasingly dependent on financial support from philanthropy, including sarcoma foundations and patient-driven grassroot fundraising such as Stomp Out Sarcoma, to provide clinical trial opportunities to improve treatment outcomes and improve the lives of patients with sarcoma.”

Hope for the future

Looking ahead, Privett and Maxwell hope to further expand the reach and impact of Stomp Out Sarcoma to continue to support this life saving research, offer hope to patients and families, and make sure more people know about this supportive community.

“New survivors continue to come,” says Maxwell, “and we see people from all over the state because U-M is such a renowned place to go for treatment. I want to reach as many of them as we can.”

If you would like to learn more about hosting a community fundraising event, please contact Karen Fox, senior assistant director of development and community engagement, at [email protected]. If you would like to learn more about supporting cancer care and research, please visit the Rogel Cancer Center’s giving page.