GETTING THE WORD OUT
Raising money and awareness for a rare, painful spinal disease SEE STROTT, PAGE B-2
Pittsburgh Post-Gazette At age 17, Doug Strott was an athlete who threw the javelin for his high school track team. But he struggled to get through his training exercises.
When an orthopedic specialist diagnosed him with Scheuermann’s Disease, few people had heard of the degenerative spinal condition that causes an abnormally curved back and severe, chronic pain.
Almost four decades after his diagnosis, the debilitating illness is still largely unknown.
That’s why Mr. Strott, now 52, launched the Scheuermann’s Disease Fund, which aims to raise awareness and provide education about the condition. It also raises money to fund research and genetic testing.
In his case, the effects from the disease took such a toll that he was forced to retire early from a successful career in financial services.
Launched in 2014, the fund is housed at the Pittsburgh Foundation, a community foundation that manages nearly 2,200 individual, grantmaking charities.
From his home in McMurray, Mr. Strott oversees the fund’s website, Facebook page, a database of medical professionals, and efforts to obtain research funding. The Downtown foundation handles tax filings, accounting, legal and other back-office administrative tasks.
The fund has about $30,000 in assets, said Christy Stuber, the donor services officer for the foundation.
Mr. Strott hopes to boost that through an annual fundraiser scheduled for 12:30-4 p.m., Sunday at the Alpine Club Hunting and Fishing Club in Bridgeville. The family-friendly event will include auctions, raffles, and activities for children.
Getting the word out on Scheuermann’s Disease is a
top goal because children who are diagnosed early can receive treatments that may prevent permanent disabilities later on, said Mr. Strott, who advocates for mandatory screenings at schools.
“If you can reach a child before his or her bones stop growing, you can help them with noninvasive techniques like exercise, diet and bracing while their bones are still malleable,” he said.
Typically the disease, sometimes called Scheuermann’s Kyphosis, occurs before age 16, or during adolescence.
Studies say it may be the result of a lack of adequate blood flow to bone plates in the vertebrae which then become wedge-shaped and cause deformities of the spine.
After his diagnosis in 1981, Mr. Strott’s doctor prescribed exercises — including 100 situps a day — and advised him to keep his weight under control.
He continued to play sports for Baldwin-Whitehall High School, including football. He later earned degrees in finance and international studies at the University of Johnstown.
He started working in finance soon after graduation, including holding jobs as a stockbroker and in trust accounting and investments. His work took him from Western Pennsylvania to New Jersey; Philadelphia; Columbus, Ohio; Milwaukee; Indianapolis; and Austin, Texas.
Then walking and sitting for long periods became challenging. Traveling either by car or airplane for work was particularly difficult.
About 10 years ago, after he began losing strength in his arms and hands and experiencing numbness, Mr. Strott consulted specialists in Austin. He underwent six spinal surgeries in five years that included having 20 screws inserted in his neck to relieve pressure and to retain his mobility.
In 2011, he left his job as a regional director of sales for Dimensional Investment LLC in Austin, and returned to the South Hills with his fiance, Jennifer Scott, a business development specialist with ManorCare Health Services.
He uses a cane, and their home is equipped with adaptations to assist him, such as raised sinks and grab bars in the shower. An internal pump implanted five years ago delivers medication to relieve some of his spinal discomfort, but the pain can be so intense that some days, Mr. Strott said he can work on fund activities for only a few hours or not at all.
He receives disability benefits from the Social Security Administration and from his last employer.
When Dimensional and its insurer, Prudential Insurance of America, terminated his long-term benefits in 2012 months after awarding them, Mr. Strott sued and won a judgment which stipulates they continue to pay. The case file is available on the fund’s website as a resource for others.
The fund might not exist if Mr. Strott had decided to skip his 30th high school reunion in 2013. “I was very athleticin high school, and I didn’t want to walk in with acane,” he said.
A friend told classmates about Mr. Strott’s condition and the group decided to give him the $700 that remained after reunion expenses.
“The problem was, there was not a charity to donate it to,” said Mr. Strott. “So I figured I better create one.”
He was referred to the Pittsburgh Foundation, which manages other disease-focused funds including Live Like Lou, founded by the late Neil Alexander and his wife, Suzanne. Mr. Alexander was diagnosed with amyotrophic lateral sclerosis, a fatal condition better known as Lou Gehrig’s disease. The foundation also manages the Richard S. Caliguiri Fund, which raises money for research about amyloidosis, a rare disease that the late Pittsburgh mayor succumbed to in 1988.
As a large philanthropy, the foundation helps its medical funds connect to other organizations that are involved in disease research, Ms. Stuber noted.
Doug Strott founded the Scheuermann's Disease Fund to help educate people and offer support to others diagnosed with the condition.