At 14 years old, Justin was diagnosed with Fibrous Dysplasia, a rare bone disease. His illness led Lisa to continuing her education, obtaining a bachelor's degree and a new career at OrthoPediatrics, Warsaw. She started her new job with the company Monday.
"He has been an inspiration to me. He was diagnosed when he was 14. The grace and strength he has shown has been an inspiration to me," Lisa, of Fort Wayne, said of Justin during an interview Wednesday. "He is the captain of the North Side High School soccer team and took a 10-day canoe trip in the wilderness of Alaska two summers ago. He doesn't hold back. He's a strong person."Justin turns 17 on Jan. 20.
Fibrous Dysplasia symptoms usually manifest between the ages of 10 to 20, but can occur at any time. The disease causes mutations in bone including fibrous tissue in bone marrow, lesions, fractures, deformity and bone pain. The cause of the genetic defect is unknown. There is no cure.
A 10-year employee of Parkview Hospital, Fort Wayne, Lisa graduated nursing school in 2005. She was an emergency room nurse at Parkview. After Justin was diagnosed, Lisa realized she needed to learn more about how to do research. A friend in the orthopedics field thought it would be good for Lisa to learn to do research in orthopedics.
Lisa enrolled at Indiana University-Purdue University Fort Wayne to earn a bachelor's degree. IPFW set her up with an internship in orthopedic research with Zimmer Inc. in the clinical affairs department.
"It was certainly a field I didn't know anything about," Lisa said of orthopedics.
During her internship, she said, "They helped me learn to set up registries to track outcomes, which is something we really need for this disease because it is so rare."
Lisa also got to attend the Rare Bone Disease Conference at the National Institutes of Health in Washington, D.C. Eight bone diseases were represented there. For that conference, Zimmer helped Lisa get the materials together to show other attendees what a registry looks like.
Asked to define a registry, Lisa said for the purpose of Fibrous Dysplasia, a registry is a collection of information on all treatments being done. Information is collected back five to 10 years to determine what treatments worked and the best way to deal with problems that arise. Ultimately, she said, researchers want to find a cure.
"I didn't really know this is what I was looking for until I talked to someone in an orthopedic field," Lisa said. "I really relied on other experts. I just asked questions and connected the dots."
OrthoPediatrics has the truest connection to pediatrics in the orthopedic world, Lisa said. Their interest in pediatrics led them to her.
Lisa, along with Jen Coleman, attended a Fibrous Dysplasia Foundation meeting at Riley's Hospital for Children and gave a presentation with Jeff Minaudo in attendance. Coleman is a board member with the foundation, and Minaudo is the director of inside sales and customer service and vice president of patient care at OrthoPediatrics. After graduating from IPFW recently, Lisa accepted a job at OrthoPediatrics.
"I think it's a natural place for me to be because their goals meet my goals. I feel like it's the place where I'm suppose to be," Lisa said.
Minaudo said Lisa brings another perspective to the company, including being a mother of a son with a rare bone disease.
"The company truly cares about children. That's what I want to be a part of," said Lisa.
Minaudo said part of Lisa's job focus will be customer service and inside sales. She will probably become a product manager.
Erin Springer Deeter, co-founder of OrthoPediatrics and WishBone, Inc. founder, said OrthoPediatrics is building on its sales force and Lisa will be a part of that.
Since founding OrthoPediatrics with her husband, Nick Deeter, Erin said they've talked about the need to form an orthopedic foundation. When it was decided to begin the foundation, Erin said, she contacted Lisa and Coleman for help. This was before Lisa decided to join OrthoPediatrics. The foundation, WishBone Inc., The Foundation for Improving Children's Orthopedic Resources, has become non-profit and now is separate from OrthoPediatrics, Erin said.
Along the way, Erin said, Lisa told her of the need for funding to begin the registry. The first goal of WishBone, Erin said, is to do the Fibrous Dysplasia registry and include other rare bone diseases.
Presidents and executives from other orthopedic companies have asked how they can help the foundation, Erin said.
"It looks now like all the orthopedic companies are interested in making this happen," Erin said.
"In my journey, I have found there are so many people wanting to help, but the question is how to do that," Lisa said.
The name of WishBone came from Lisa's son. She told him about the foundation and its purpose and the fact that it needed a name. "Without skipping a beat, he came up with the name WishBone," said Lisa.
The focus of the foundation right now, Erin said, is applying for grants through large orthopedic companies. The companies have expressed interest, she said, but they first have to cut through red tape. After that, Erin said, they hope to get the community involved.
To learn more about Fibrous Dysplasia, visit online at www.fibrousdysplasia.org
For more information on OrthoPediatrics, visit online at www.orthopediatrics.com/sb/index.html
