North Haven Resident Recognized for Establishing First Annual Day of Awareness in the Country for Rare Bone Disorder

November 30, 2017

FOP Advocate Gary Whyte, Senator Len Fasano, Representative Dave Yaccarino, Nick Pullano (brother of Holly LaPrade) and Maureen Pullano (mother of Holly LaPrade) stand next to Holly LaPrade and her husband Tim LaPrade holding two citations presented to Holly on Monday November 27, 2017 recognizing her work to establish the first annual day of awareness for an ultra-rare bone condition. They are also joined by Holly LaPrade’s father Frank Pullano and First Selectman Mike Freda.

North Haven resident Holly LaPrade (pictured in center alongside her family members) was recently recognized for her efforts to establish the first annual day of awareness in recognition of Fibrodysplasia Ossificans Progressiva (FOP) which took place on Sunday, November 26, 2017. LaPrade, who has FOP,  was presented with citations from the Connecticut General Assembly and the Town of North Haven celebrating her work to make Connecticut the first state in the country to establish an FOP Awareness Day to bring attention to the ultra-rare genetic bone condition.

In 2016, LaPrade began the process of sharing her story with lawmakers at the State Capitol. This summer, the day of awareness was made official with the passage and signage of Public Act 17-204.

FOP affects only two people in the state of Connecticut: Holly LaPrade of North Haven and Jasmin Floyd, who resides in Danielson. Although FOP is extremely rare, the discovery of a cure could lead to better understanding and treatment of more common conditions that affect millions of people worldwide including osteoporosis, fractures, hip replacement, heterotopic ossification that occurs in trauma and burn victims and other bone-related disorders.

By raising awareness, the hope is also for more physicians to be trained in recognizing the symptoms to avoid misdiagnosis which have caused a great deal of pain and suffering for patients and families worldwide. Bringing attention to the disorder is also an important step in developing new treatments and searching for a cure.