GET­TING THE WORD OUT

Rais­ing money and aware­ness for a rare, painful spinal dis­ease SEE STROTT, PAGE B-2

Pittsburgh Post-Gazette - - Business - By Joyce Gannon

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.

Antonella Crescimbeni/Post-Gazette

Doug Strott founded the Scheuer­mann's Dis­ease Fund to help ed­u­cate peo­ple and of­fer sup­port to oth­ers di­ag­nosed with the con­di­tion.

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