Doug Strott was working as a Regional Director for Dimensional Fund Advisors in Austin, Texas, when his life took an unexpected and unwelcome turn. Strott’s spine failed after requiring 5 fusion surgeries in a 3 year period. The damage was caused by Scheuermann’s Disease, a skeletal disorder that causes the spine to grow unevenly.
Strott had to stop working and go on disability in 2011. This was a profound blow. Strott explains, “I had been working since elementary school, shoveling driveways and raking leaves and cutting grass, essentially my entire life up to that point. Not working and not being a productive member of society made me feel worthless.”
He moved to Pittsburgh to be closer to family support. He channeled his energy into awareness of Scheuermann’s Disease for himself, which led to advocacy work for others. He recalls, “I had to understand the disease that took so much from my life which led me to researching Scheuermann’s. Unfortunately little information was available on the internet so I bought a domain and started a blog. All I was doing was writing what I was going through with my health and how it affected me personally in the blog, but I started to get inundated with messages from people all over the world. I knew there was a desperate need for information, research, treatment options, anything to help people affected by Scheuermann’s.”
The 30th reunion of Strott’s class at Baldwin High School came around and he considered attending. Embarrassed by the fact that he had gone from being an energetic athlete in high school and to needing the help of a cane to walk, Strott opted to stay home and skip the reunion. Then his classmates stepped in. He relates, “At the end of the 30th reunion, my good friend Sharon Skittle approached our class (we had 650 people in our graduating class) and told everyone about my health problems and asked if the net proceeds from the night’s event could be donated to the charity for my disease. They all agreed and I received a $700 blank check in the mail to be donated to a charity for Scheuermann’s. Except there was a problem: there wasn’t a charity for Scheuermann’s.”
That’s when Strott and another member of the BHS class of 1983, Chrissy Jacobs, got busy. They conceived a nonprofit to benefit those living with Scheuermann’s Disease. Through a partnership with The Pittsburgh Foundation, they established a 501(c)(3) charity in 2014. Strott shares, “Our charity is designed for patient advocacy so our goals are to to improve the public's awareness and recognition of this spinal deformity, improve early detection in adolescents, and work with the medical community to better understand the impact that Scheuermann's has on a person's quality of life as we age.
We have groups on Facebook for Scheuermann’s patients where people can talk to others and ask questions. We now have around 13,000 people in the groups worldwide.
We also send out “Care Packages” worldwide free of charge upon request. Each Care Package includes 2 different pamphlets (one about the charity and one about Scheuermann’s), tee shirt, wristbands, and a teddy bear. We recently entered into an agreement with another charity, ‘Higgy Bears,’ that has sent over 50,000 plush teddy bears to children with scoliosis. They created a purple teddy bear for us and send them out in Care Packages to people affected by Scheuermann’s.
We recently started a joint patient advocacy effort with the International Spine Study Group (ISSGF.org) that is an organization of surgeons dedicated to the advancement of treatment for adults with spinal deformity. Through this effort, we hope to improve upon existing treatment protocols for adults Scheuermann’s patients through advancing research.”
Learn more about Scheuermann's Disease and donate to support those affected here: https://www.sdfund1.org/