Christ Our Rock Lutheran High School in rural Centralia, Illinois requires all students to complete a fifty-hour service project to receive their diploma. Students choose from any number of volunteer opportunities, such as serving as a camp counselor for a week during the summer, helping at vacation bible school or teaching Sunday school to youngsters.
Grace Sugg was in her sophomore year at Christ Our Rock Lutheran when her brother, Bo Arvin, was diagnosed with epithelioid sarcoma cancer. When it came time for Grace to begin planning her service project, she set a bold vision: to honor her brother, Bo; increase awareness about sarcoma cancer; and raise money to find a cure.
Grace and Bo were close. She is younger by eleven years and Bo, a good big brother, served as a kind of fatherly figure. In true protector form Bo made sure he knew who she was hanging out with and where she was going, and he advised her on how to navigate her high school years. One of Grace’s fondest memories with Bo is the night they drove home from the movies along the dark rural roads and stopped spontaneously to sit outside, listen to music, and watch the stars in the country sky.
They had lots of fun, too. Bo was, by all accounts, hilarious and “a bit mischievous.” Grace remembers one particular time when her mother, Joann, asked Grace, Bo, and their sisters Megan and Casey, to do some chores. Somehow Bo and Grace ended up in a snowball fight. In the house. (Not sure if Joann knew about that one, but she does now!)
When Bo was diagnosed with sarcoma cancer, Grace and her family were shocked that they had never heard of sarcoma. Grace felt that awareness of this rare cancer should be elevated, and she wanted to support research to find a cure. This motivation shaped what might be the most meaningful and impactful service project in the school’s history.
A core group of family and friends planned for five months to create a fun event to honor Bo. On a perfect fall sweatshirt day in October 2017 it all came together: a town-wide Family Fun Day, including pumpkin launching, axe throwing, bags tournament, laser tag, kid’s corner, an obstacle course, and two separate bonfires. Food was also plentiful: a BBQ food truck, hot dogs, walking tacos, snow cones, s’mores, and ice cream.
Despite the meticulous planning, Grace admits she was a little worried that nobody would show up. But not only did people show up, her entire class from school came to help, friends drove in from other states, and people she didn’t even know came to the event. With the generous financial support of event attendees and a long list of local sponsors—not to mention the countless hours from helpers—Grace raised nearly $9,000 for the Sarcoma Foundation of America. Most of all, she pulled off an epic event befitting her brother’s memory, aptly described by attendees as “energizing” and “breathtaking.”
Bo died in October 2018, as Grace began her junior year at Christ our Rock Lutheran High School, the same school from which Bo graduated eleven years ago. She plans on entering college this fall and hopes to study Christian education and missionary work, and serve as a youth group leader.
Rein in Sarcoma is honored to host Grace Sugg at the 2020 Winter Gathering on January 26. Please join us at the event to hear Grace’s story firsthand and recognize her outstanding efforts to increase sarcoma awareness and dedicate funds to help find a cure.
When Tom Boardman learned that his twelve-year-old grandson, Levi, was diagnosed with Ewing sarcoma cancer, he wanted to step in and take the pain away. Family and friends of sarcoma patients know this feeling well. “I could not take the chemo for my grandson. Neither could I have the surgery he was going to need or go through all the tests,” Tom says. But he knew there were other ways to make a meaningful difference. “I found RIS, and I said, This is it—I’m going to get involved, for Levi and for others like him.”
This year marks Tom’s third year of volunteering with RIS. He serves as Chair of the Rein in Sarcoma Development Committee and is active in the Fall Fundraiser, the golf event, and the bike ride fundraiser. Tom recommends volunteering with RIS because “you can have a lot of fun in the process, and there is tremendous flexibility. Like many volunteer activities you will get much more out of it than you put in.”
Giving back seems to come naturally to Tom. He dedicates his time and skills to causes important to him, such as his church, education, and social justice—and now, sarcoma cancer. His most recent recognitions for volunteerism and service include the 2020 College of Wooster John D. McKee Alumni Volunteer Award and the Lifetime Leadership Award from Southern Minnesota Regional Legal Services.
“My motivation has been my grandson, his future, and the futures of all sarcoma patients. So little is known of these ‘orphan’ cancers that it takes a real special and focused effort to draw attention to them. Successfully achieving that gives me hope for the future.”
Read the list of volunteer activities in his bio and you would think he was a full-time volunteer, chair, and board member! But Tom is actually an attorney, retired in 2010 from in-house counsel at 3M after thirty-seven years, and currently working at the law firm Barnes and Thornburg. He is also an active exerciser through Liftbridge CrossFit and travels extensively (he has visited all fifty states and over fifty countries!).Tom and his wife, Susie, have been married nearly forty-eight years. They cherish time with family (four children and eleven grandchildren) and enjoy traveling together.
Rein in Sarcoma is grateful for Tom and all of our volunteers who dedicate their passion and time to supporting families, educating the medical community, and raising funds for research to find a cure for sarcoma cancers.
Article by Miranda Mead
On October 10-11, 2019, I attended a Sarcoma Research Advocacy Council meeting through SARC in Detroit. There I met many fantastic people who have stories similar to mine. Most of the advocates had experienced some form of sarcoma or other cancer. On Thursday we were able to get to know each other and share our stories at a dinner and reception. We discussed our personal cancer stories and our motivation for attending.
The next day the conference was held from 7:30 am to 4:00 pm. The first thing discussed was the importance of the patient perspective in cancer research. Having a patient’s voice in cancer research helps focus on what is truly important. Clinical research in sarcoma was a large area of focus. We discussed the challenges in sarcoma clinical research since it is considered a rare cancer. We learned about the clinical process and the grueling ins and outs of how difficult the process truly is. There are nine failures for one successful drug approved. It takes roughly 12-14 years for a clinical trial to reach drug approval, equating to roughly billions of dollars spent. We also learned how to capture the essence of the patient journey, how to effectively tell our story in front of different audiences, or stakeholders. We then talked about ongoing plans for the SARC council which include online video conference calls.
This was an amazing opportunity and I learned so much about the importance of being an advocate. I discovered the next steps I can take as an advocate for childhood cancer– being a research advocate for sarcoma cancers. Overall, I came away with a great sense of hope as so many passionate individuals gathered to make a difference in the sarcoma community.