Discover the heartfelt story behind The Power of Will, an osteosarcoma nonprofit born from love and loss. Inspired by the courageous journey of Will, diagnosed during his sophomore year of college, this organization is dedicated to transforming the lives of sarcoma patients and their families. Learn more about the mission, milestones, and unwavering commitment to advocacy that define this remarkable initiative. From funding groundbreaking research to providing quality of life grants, The Power of Will continues to make an indelible impact in the osteosarcoma community. They Make It Better with us by sponsoring the MIB Agents Junior Advisory Board to attend our FACTOR conference. Read more about their inspiring journey and how they are fostering hope and resilience at https://thepowerofwill.org/
What inspired you to start The Power of Will? Can you share your personal journey and connection to osteosarcoma?
Will was diagnosed with osteosarcoma the summer after his sophomore year at John Carroll University in Cleveland, Ohio in July of 2015. He came home in May for a visit and complained that his knee hurt. I didn't think much of it as he had been playing some racquetball and it wasn't slowing him down. We went to Disney World and he seemed fine after taking ibuprofen. He returned to Cleveland to work as a busboy at a country club. The knee pain continued, and by the beginning of July he was having difficulty bending it all the way, and said he could feel something behind his knee. He then went to a local clinic where they did an x-ray. A very astute physician sent the x-ray to Dr. Nate Mesko at Cleveland Clinic, who was able to make the diagnosis. Will withdrew from school for the fall and started the standard MAP treatment. He had his total knee replacement in December and was back at school in January to finish MAP treatment. He went back to his studies and even served as student body president of his college.
Will had several lung mets over the next few years. They would respond well to chemotherapy (ifosfamide in a back backpack- thank you Dr. Anderson!) and then be able to be resected through surgery. He had stereotactic radiotherapy a couple of times also. These treatments allowed him to continue with school and his life without much interruption. He also fell in love during this time with Kate, another sarcoma survivor. He graduated from John Carroll in 2018 and began law school that fall at The Ohio State University. After a successful first year of law school, there was another lung mets that could not be resected after more chemo and radiation, because of its dangerous placement in the lung. Shortly after this, he was diagnosed with myelodysplastic syndrome, most likely from the treatments he had undergone over the past four years. This was all weeks after becoming engaged to Kate.
In the spring of 2020, during the height of the Covid pandemic, Will received a stem cell transplant to cure the myelodysplastic syndrome. The transplant was a success but under the cruelest of circumstances he got pneumonia. His weakened immune system could not recover from this. Will passed on August 18th, 2020, 5 years and 1 month after his initial diagnosis. As I write this it feels as raw as yesterday.
The day after Will passed, thick in our grief, Kate, Will's sister Ellie, and I knew that this couldn't be all there was to Will’s life and story. He had been such a force and we wanted to honor him and help others going through a similar diagnosis. I really had no idea what starting a foundation would entail (I am a nurse in the recovery room), but a local attorney that Will worked with while he was in high school stepped up and walked me through the paperwork. I also recruited Will’s good friend, fraternity brother, and newly minted CPA Joe Weber to be our treasurer. The generosity of a local foundation here in Auburn provided the funds for us to pay for our web page and logo.
Can you tell us more about the mission of The Power of Will and the key programs you offer? How did Will's experience with osteosarcoma shape the mission and vision of your nonprofit?
The mission of The Power of Will is to support and enhance the lives of sarcoma patients and their loved ones. Knowing firsthand how devastating this diagnosis is we are on a steadfast pursuit to change the narrative for this population. We do this through funding scientific research, advocacy, and education, and by providing resources to adolescents and young adults through our quality of life grants program.
Collaboration is essential in the fight against osteosarcoma. How does The Power of Will engage with other organizations, researchers, and the broader community?
Getting to meet other families and working with other organizations brings us joy! We have built strong relationships with MIB Agents, The Osteosarcoma Institute, Quad W, and I’m Not Done Yet to name a few. We stay connected with the Cleveland Clinic and support them each year in The Race to Cure Sarcoma, and we provided them with our first scientific grant. We have supported The MIB Agents Junior Advisory Board to attend the FACTOR conference twice, and are thrilled to be able to do this again in 2025. We have collaborated with The Rally Foundation and The Osteosarcoma Collaborative providing funds for scientific grants.
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What achievements or milestones are you most proud of since founding the nonprofit?
Gosh, really everything has been such a gift and a blessing. We have been able to award 144 quality of life grants since 2022. This has been amazing. Reading each application and story touches our team members' hearts and inspires us to do more. Getting to go to FACTOR and engage with the community drives us to fundraise and tell the world about sarcoma.
I would be remiss if I did not praise my local community of Auburn, Alabama. My friends, my work, and my church have embraced and supported our efforts. They now know about sarcoma and reach out to me when they hear of someone with sarcoma. Our fundraising efforts have been so successful (and fun) because of this generous community. It is so humbling to have the support of people from all aspects of my life.
Our board consists of a group that had strong ties to Will. We begin each meeting by reciting our mission statement and a Power of Will moment which recalls a memory of Will to keep him present in our efforts.
My family are huge cheerleaders and active in our efforts too!
The list of people who have touched me in this journey continues to grow daily as we grow and make new connections.
What message do you want to share with those who are currently battling osteosarcoma or supporting a loved one through their journey?
First of all, I am sorry that you are going through this. Will always kept focused on his goals, and that really got him through the difficult times. He never allowed himself to become his diagnosis. Being in college and having peers who could keep his mind off of the treatments was lifesaving for his emotional health. For caregivers and friends, I would recommend taking advantage of the available resources. As the mom it was really difficult for me to stay positive, and I would say that I did a lot of silent suffering. I wish that I had known of other moms who were going through what I was at the time. This is a complicated and long journey, and we need to embrace each other.
How do you see the role of patient advocacy evolving, and what advice would you give to others looking to make a difference in this space?
I feel like advocacy and education have come so far since Will was diagnosed in 2015. We cannot stay in our silos if we want this momentum to continue. I am so grateful for this opportunity to be involved in this community.
Each and every day I strive to keep Will’s memory alive and work toward supporting and enhancing the lives of sarcoma patients and their loved ones. Thank you for asking me to be a part of this. If you would like to know about our organization you can check out our website at www.thepowerofwill.org and follow The Power of Will on Instagram and Facebook.
