An opportunity to recognize and thank volunteers who lend their time, talent, voice and support to causes they care about, National Volunteer Week was established in 1974 by the Points of Light Foundation as a way to celebrate and encourage volunteerism across the United States.
At the National Brain Tumor Society, we rely on our volunteers to help us move toward a day without brain tumors.
Below are a few stories highlighting the impact of volunteer activity here at NBTS. This just a small sample of the many dedicated, hard-working individuals and teams that enable us to find better treatments — and ultimately a cure — for brain tumors.
There are a number of ways you can get involved in the NBTS community. If you are interested in volunteering and partnering with us in the fight against brain tumors, you can read more about opportunities here.
The word MARK is at the center of team ReMARKable Strides, to honor the legacy of Mark Kramer Jr., who died of a brain tumor in 2014, just two days after his 38th birthday. In addition, Kramer spelled backward is Remark, explain his parents, Sandy and Mark Kramer Sr. Sandy and Mark participate in a number of NBTS initiatives, but their favorite is the Race for Hope in Philadelphia. “It’s an amazing day connecting with people who have lost a loved one,” they say. In addition to the Race for Hope, Sandy and Mark have been known to volunteer across the country (lending a hand wherever necessary and regardless of meteorological conditions) donning makeshift foul-weather gear made of trash bags to stay dry on rainy days. The Kramers also host a number of other communal meal-based fundraisers throughout the year, including the Dinner for Hope, Beef and Beer, and the Melting Pot. As director of information technology at a major grocery chain, Sandy has been able to leverage contributions from her company to raise at least $60K each year, and in 2018, $102K. Their son Mark also participated in events throughout his illness, and according to his parents, found inspiration that he wasn’t alone. His last walk was in 2013. “We still feel like we’re doing something for Mark,” the Kramers say. “You never know when [a brain tumor] can affect you in some way.”
Autumn McDonald first became involved with NBTS by participating in a signature event, the NYC 5K event, explaining, “After participating in an NBTS event, I feel hopeful for the future and exhilarated by the strength of the brain tumor community.” In 2016, she decided to deepen her role by joining as a board member. “I’m involved with NBTS because I believe in the mission, and I know that NBTS is making a critically important difference in the fight to find a cure for brain tumors.” As Autumn points out, anyone can be affected by brain tumors, and 86,970 people are predicted to be diagnosed with a primary brain tumor this year. “Brain tumors do not discriminate,” Autumn says, “and they are the #1 cancer killer among children. We should all want to get involved in the fight to find a cure and to save lives.” When Autumn isn’t passionately advocating for the brain tumor community, she lives life to its fullest, enjoying her work as a research consultant for major brands, engaging in the arts, and traveling internationally. To Autumn, the most important part of her involvement within the brain tumor community is the knowledge that “every hour spent working with NBTS is making a true difference.”
22-year-old NASCAR driver Matt Tifft is a brain tumor survivor and National Brain Tumor Society advocate. He has generously splashed NBTS logos, taglines, and colors across his racecar, and says, “The more I can raise awareness, the better chance we have to find cures, and [having a brain tumor] doesn’t have to be such a bad stigma.” Just as Matt’s career was getting started at the age of 19, he began experiencing strange symptoms that were eventually diagnosed as a low-grade glioma brain tumor. Fortunately, the tumor was benign, but with no guarantee that it wouldn’t grow malignant, required surgery. Matt’s return to racing after the procedure wasn’t an easy adjustment at first. It was then that he “realized how big of an outpouring of support there was from the brain tumor community — on social media, in person, at the race track, or wherever it was. That was a big help for me getting through my journey — at a time when I didn’t know if my career was over, or what it meant for my health, or really anything at that point. All of a sudden, I had so many people reaching out and sharing their stories and them saying how much it meant to them.” Matt decided that he didn’t want to be known as just a brain tumor patient or survivor; he wanted to become a brain tumor advocate and help others impacted by the disease. “That’s really when I started working together with folks at NBTS to try and figure out what my role could look like there,” says Matt. “Obviously, we have such a huge platform in NASCAR and there’s just so much opportunity to get the word out…I really felt like it was important for me to try and share my story, not only to give others hope, but also raise awareness and get people talking about it. It just became very personal. It became kind of my objective at that point.” Currently, Matt’s engagement with NBTS spans across NBTS initiatives, including the annual Head to the Hill advocacy day and the Charlotte Brain Tumor Race. “Leaving those events — at the end of those days — you feel absolutely exhausted,” Matt says, “but in a good way because you know you did good work and that you made a difference.
Kelly Theberge’s community event, The Bob Burns Memorial 5K (BBM5K), began six years ago in May of 2014 in honor of her father, Bob Burns. When Kelly created the BBM5K and mailed in her first check for $3,300, she says she hadn’t imagined she would ever consider NBTS her family. “[Today] that’s honestly how I feel about NBTS. I couldn’t imagine my life without NBTS, other advocates, the staff, and the events. NBTS is so caring, so involved with their volunteers. The love and care that NBTS has given me is just amazing and so genuine.” Kelly wanted to see a change in the brain tumor world, and help alleviate the pain and grief that her family experienced during her father’s battle. Her aim was “to finish my dad’s fight and keep his memory alive.” The Kelly’s Cause Committee was created two years later in 2016. “I had a few friends ask me if I wanted help with the 5K, and one by one it grew to twelve volunteers of just really, really wonderful friends who became dedicated and passionate to the cause. They each have different ideas that made Kelly’s Cause what it is today. We then grew by not only just hosting the BBM5K, but adding in multiple events a year to capture different groups of people, at different times of the year. So we fundraise all year round, and host six to eight events a year,” Kelly says. “When I began this journey back in 2014, never did I think it would become this successful.” In total, Kelly and her Cause have donated $65,000 to NBTS in just five years. Kelly’s most recent event sold out and raised $7,200. The Main community can look forward to the Bob Burns 5k taking place July 28, 2019. The Bob Burn’s memorial race shirts are donated by Kelly’s dad’s friend who owns an embroidery business. On the back of the shirts is a mountain with a quote, “You have to climb the mountain to see the view,” which is also inscribed on Bob’s headstone. “This quote was my dad’s motto,” Kelly says. “He believed if you want something in life, you better work hard for it.” To Kelly, the most important thing about supporting brain tumor research and patients is finding a cure. “That’s why I fundraise — to end this disease that has taken too many lives.”
Dr. G. Yancey Gillespie volunteers as Chair of NBTS’ Scientific Advisory Council, contributing as a leading research expert to help ensure success in the Oligodendroglioma Research Fund. This Community Fund supports promising research specifically targeted at creating new treatments for oligodendroglioma (oligo). In the 1970s, Dr. Gillespie got his start doing tumor immunology. “I didn’t know a thing about brain tumors until I met M. Stephen Mahaley — he developed a tumor-specific antibody using rabbits that localized in patients’ tumors — this was 1965. He essentially helped form my career in that particular direction and introduced me to all of the leaders back at the time.” In the Seventies, he explains, there was a lot of excitement around immunology that then dissipated because the correct tools simply weren’t available. In the Seventies, he explains, there was a lot of excitement around immunology that then dissipated because the correct tools simply weren’t available. It makes sense, then, that Dr. Gillespie is currently anticipating progress for the brain tumor community in the area of immunotherapy. “The thing I’m most interested in is the advent of an immunology approach. And I think with the various checkpoint inhibitors that have come out…the opportunity is there.” Dr. Gillespie finds that volunteering with NBTS provides scientists with opportunities to offer advice to the executive committee on what applications they think are novel, and which ones have a high risk and high reward potential for funding. He also likes “to see what my colleagues come up with…it’s a lot of fun. It’s a lot of work. It provides us with a mechanism to put our two cents in on what we think is good.”