Kyle with wife Tracy, son Reece and family pets Jasmine (“Jazzy”) & Finley
Raising public awareness of disabilities, and in particular OI, has been in the forefront for most of Kyle Mulroy’s private and professional life.
Clinically diagnosed with osteogenesis imperfecta at the age of two, Kyle used a wheelchair until the age of 20. His fractures are too many to recall, “but probably figured well north of fifty,” he says. His earliest treatments took place at the Hospital for Special Surgery in New York City. After numerous roddings, Kyle uses only a walking cane today.
While medical approaches and attitudes have evolved since his diagnosis in the early 1970s, continued efforts to raise awareness and advocacy are critical to advance understanding and treatment of an extremely rare disorder such as OI, he believes.
That awareness began early in the Mulroy family. Of the three children in his family, Kyle is the youngest and only sibling born with the disorder. His mother sought outside support groups, but failing to find any, joined with other families in the mid-1970s to help found the National Brittle Bone Society-- which along with the already established Osteogenesis Imperfecta Foundation, was one of the first organizations devoted to osteogenesis imperfecta.
Although the Brittle Bone Society is no longer operating today, the experience did give Kyle his first taste of advocacy when he travelled with his mother in 1980 to Capitol Hill to meet with lawmakers and testify before Congress about the need to increase funding for OI research.
Kyle continues the early awareness efforts his mother began. After completing a degree in political science from Rutgers University and a Masters in legislative affairs from The George Washington University, Kyle spent six years working in government at both the state and federal level. More than four of those years were spent as a senior staff member in the United States Senate. In this position he had the opportunity to work with numerous national health-related associations and foundations on a myriad of federal legislative and budgetary issues. He also served as a liaison to the Senate Finance Committee where his responsibilities included Medicare and Medicaid policy, as well as a legislative consultant to the New Jersey Developmental Disabilities Council.
It was timing and a chance phone call, however, that forged both his on-going relationship with the OI Foundation and his personal life.
Once arriving on Capitol Hill, Kyle served as the health care advisor for U.S. Senator Robert Torricelli (D-NJ. Part of his duties included meeting with various health care organizations to learn about their mission and needs.
One day he received a call from the chief executive director of the OI Foundation requesting a meeting.
“Well, this is your lucky day,” he recalls telling the director. “I’m probably the only staffer on Capitol Hill with OI.”
Since that time Kyle has been a strong advocate for the Foundation. His involvement with the OI Foundation led to a few other important relationships.
In 2000 Kyle met his future wife, Tracy, while working on
the volunteer committee developing the first annual OIF Fine Wines Strong Bones event.
The couple married in 2002 and began to consider adopting a child.
Kyle and Tracy were walking into a Foundation board reception when they received an email letting them know a toddler with OI was identified in an orphanage in Eastern Europe.
“We were so excited to get all the details, we couldn’t even stay,” he recalls.
The next two years found them shuttling back and forth to Bulgaria to arrange for adoption. They were told their child had OI but did not know the severity.
Reece, who has the mildest form of OI, was three by the time he was able to leave Bulgaria and join the Mulroy family.
“He didn’t speak English when we brought him home. Today, he’s a very active fourth grader who enjoys Boy Scouts, science and video games,” says the proud dad.
Earlier this summer, Kyle, together with the OI Foundation, arranged a visit by senior staff members from the Maryland Congressional Delegation to tour the OI Linked Clinical Research Center (LCRC) at Kennedy Krieger Institute (KKI) in Baltimore.
“This was an important first step for Maryland’s federal representatives to visit KKI and hear first-hand from the OI Clinic Director, Dr. Jay Shapiro and other KKI officials, about the importance of the LCRC program, the OI Registry and the important clinical care provided by the clinic.”
Those efforts made an impact.
The day we spoke with Kyle, he was headed to Capitol Hill to present OI updates to the Senior Health Care Advisor for U.S. Representative Dutch Ruppersberger (D-2-MD). What was surprising and a bit unusual about the meeting is that the request came not from the lobbyist, but from the congressman’s office.
“And that rarely happens,” said Kyle.
One of the biggest challenges facing raising OI awareness is the lack of a celebrity spokesman, he believes.
“Putting a face on OI is important. This is the reason we try to make as many personal connections as possible when meeting with government officials.”
The OI Foundation’s national Conference is one other important way that awareness is raised. During last year’s conference, Kyle arranged and accompanied a group of OI attendees from across the country to meet with their respective representatives on Capitol Hill.
“It was such a great day watching so many small groups of families impacted by OI travelling all over Capitol Hill beaming with pride as they went from meeting to meeting explaining their life experiences to Members of Congress,” said Kyle.
He hopes to duplicate those efforts with more OI families when the biennial OIF Conference takes place this July 13-15 at the Crystal Gateway Marriott in Arlington, Va.
Washington Strategic Consulting (WSC), which Kyle founded in 2001, represents a number of non-profit health care organizations across the country. The firm provides government relations consulting for hospitals, healthcare systems, medical schools, national non-profit advocacy organizations as well as patient groups.
“Our goal is to develop effective legislative strategies, build coalitions and generate grassroots communications for the groups we represent.”
Kyle knows that important steps have been made toward advancing OI awareness, but admits there’s plenty of work still ahead.
We’re fortunate to have him working with us!