A LOCAL FAMILY’S grief has been transformed into a powerful mission. The Emma Ryleigh Dixon (ERDie) Project, founded in memory of 14‑year‑old Emma Ryleigh Dixon, is bringing attention both locally and nationally to bone cancer research while keeping alive the light and legacy of the courageous and kindhearted daughter of Jeni and Charlie Dixon.
According to The ERDie Project website, Emma was diagnosed with osteosarcoma, a rare type of bone cancer, on Jan. 24, 2020, after complaining of knee pain. For two and a half years, Emma endured multiple surgeries, hospital stays, and difficult treatments. Yet through it all, she remained fearless and positive.
Before her diagnosis, she was a competitive dancer who, according to her parents, loved cooking, shopping, traveling, and spending time with family and friends.
“The best way to describe her is bubbly, energetic, always happy, and fearless,” said Charlie. “Even when she was young, she would get on the scariest rides or do the most daredevil haunted houses. She was such a strong individual and so nice. When we see people out in the community, they say, ‘She was always so sweet and made me feel included.’”
FROM GRIEF TO ACTION
According to the American Childhood Cancer Organization, about 15,780 children and adolescents are diagnosed with cancer each year in the United States. Of these, bone cancers make up a small but devastating fraction. Bone cancers such as osteosarcoma represent about 3% of all childhood cancers, underscoring their rarity but seriousness.
The website also states that because pediatric bone cancers are rare, they receive only a fraction of the already limited 4% of cancer research funding allocated to childhood cancers. This is why organizations like The ERDie Project are so vital, as they shine a light on these overlooked diagnoses and push for new treatments beyond protocols that have remained largely unchanged since the 1980s.
“For us, this is unacceptable. The goal is to find a cure and do something good from a really bad situation,” explained Charlie. “This is our way to honor Emma and help others.”
BUILDING A LEGACY THROUGH RESEARCH
Since the ERDie Project’s inception, funds and awareness have been raised through various initiatives, including an annual two-day event featuring a gala/ silent auction, a golf scramble, as well as a songwriters’ night.
Most of the funds received have been gifted to The ERDie Project Endowment Fund to support research in pediatric osteosarcoma and other bone cancers in the Division of Pediatric Hematology and Oncology at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
“Jeni and I went to Emma’s doctor, Dr. (Scott) Borinstein, to figure out where we could give this money that’s going to be impactful, with 100% going to research,” explained Charlie. “What he told us is that it is his life’s passion to have a research lab at Vanderbilt that is specific to bone sarcomas, osteosarcoma in particular. Once we get to a $1 million fund in that endowment, they will hire the researcher for the lab there at the hospital.”
Jeni added that to date, The ERDie Project has donated $250,000 to the endowment, including a recent $100,000 donation. The nonprofit will also be funding an annual fellowship program to support innovative osteosarcoma research projects.
“Our goal is to get to $1 million as soon as possible,” Charlie stated.
SUPPORTING FAMILIES
Beyond research, The ERDie Project provides direct financial support to families
facing pediatric bone cancer.
“Honestly, we would rather not have to help any other families as we don’t want to see other families have to go through this,” explained Charlie. “Unfortunately, this is a pretty rare cancer, so when it pops up, there are only a few people who know about it. We have been fortunate enough to give some support to a few families, and we’re going to continue to do that, but our real hope is that we don’t have to.”
Jeni said that the organization has already reached families in Tennessee and as far away as Florida. “Even if it’s not financial, if we can give them encouragement or help, that’s our direction,” she added.
EMMA’S LEGACY
When asked what they hope people will remember most about Emma, Charlie said that she was the best daughter that both he and Jeni could have wished for.
“We remember her most as being tough, polite, and loving with a great sense of humor. She never took life for granted and made the best out of every day. She wasn’t going to let anything keep her down, and she made things easier on everyone else around her. She made us so proud.”
Jeni said that, as far as The ERDie Project goes, they hope it continues to raise awareness, funds, and save other children.
“As far as the movement, obviously it’s her name being tied to some type of advancement in medicine that saves other children,” she said. “Her name is on a cure or something that helps other kids and families going through what we had to go through.” GN
To learn more about The ERDie Project, visit online at TheERDieProject.org.
