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11/29/2017 07:30 AMNorth Haven resident Holly LaPrade was diagnosed a rare genetic bone condition known as fibrodysplasia ossificans progressiva or FOP, at age 16, but the diagnosis doesn’t stop her from living her life. She’s also been spreading awareness about the condition, held fundraisers to donate funds to look for a cure, and recently worked with State Senator Len Fasano (R-34) to help create an awareness day for FOP in Connecticut.
In 2016, Holly and friend Gary Whyte contacted Fasano about designating a day in Connecticut to raise awareness about the condition. The bill was signed into law by the governor this summer, and now FOP Awareness Day will be celebrated each and every year in Connecticut. The first one took place on Nov. 26.
“It’s just been my personal mission to help raise awareness about the condition,” Holly says.
One of the reasons she wants to do so is because she says that may patients with the condition are misdiagnosed, which could lead to harmful and traumatic procedures done on misdiagnosed patients.
“If I can prevent a traumatic mis-diagnosis from occurring in even one person, our work would be worth it,” Holly says.
She says it was a good feeling to do something personally that could help other people, and she hopes people in other states will pick up on what she’s doing. She says it wasn’t “rocket science” to create the awareness day, and overall it’s something anyone can do for any condition if that person has the initiative.
On Nov. 27, Holly was issued a citation by Fasano, State Representative Dave Yaccarino (R-87), and First Selectman Michael Freda at Town Hall for her part in bringing the awareness day to fruition.
Holly and her family have held four major fundraisers over the years, with the money going to the University of Pennsylvania where research is being done to find a cure. She’s also served in various volunteer capacities for the International FOP Association, including six years of service on the board of directors.
“I kind of credit them for giving me hope when I was first diagnosed,” Holly says.
Most recently, Holly served on the planning committee for the association’s first teen and young adult meeting in San Diego, where she led several workshops. She says it was a “really cool” experience and would love to do it again, adding that one of the most difficult parts of living with FOP is that since it’s so rare, there aren’t many people to talk to about it that can relate.
“It was an opportunity for us to get together and be with people that truly understood the struggles that we commonly face,” Holly says.
She says Facebook and social media has been a great thing for the community, adding one of the positive things that resulted from her condition is that she’s made friends all over the world.
“There are positive things that have come out of it,” Holly says, “You just have to look for and be open to finding the positives even in what can be considered a very negative diagnosis that was given to me.”
Her philosophy always has been to not dwell on the negative aspects of her condition, and instead look at what she still can do and make an effort to do those things.
Holly will celebrate her fifth wedding anniversary this year with her husband Timothy, and has a stepson named Leland. She graduated from Quinnipiac University with a degree in journalism and a minor in sociology, and has worked as a newspaper reporter and real estate agent.
About two years ago, Holly had a couple major flare ups that affected her ability to drive and walk, so she’s had to work from home. She says it set her back a bit, but working from home motived her to pursue her true passion of journalism and writing.
She’s gotten several freelance writing jobs, and says she took a negative and turned it into a positive.
“I look at it as kind of a blessing in disguise because it made me stop and look around and really evaluate what was really important to me,” Holly says, “Sometimes we need that in our lives; something major to happen to make us stop and…evaluate what’s really important to us and what we really, truly want to accomplish in our lives, and not just go through the motions.”