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Santa Maria woman fights bone disorder, receives award

2.0 from 6 votes
Tuesday, July 28, 2015

In nature, parents — whether human or animal — will fight against huge odds to ensure the survival of their offspring.

Jennifer Snow is one such parent.

Her daughter, Stephanie Snow, grew up like most 24-year-old girls — she had a natural attraction to animals, dance and cheerleading, and, on occasion, found herself sewing, baking and watching NASCAR races.

Also, like many young children who fear losing their parents or finding a monster under their beds, Stephanie Snow developed a few fears as she matured.

Only, for Stephanie Snow, her fears were not that far-fetched.

When she was 1 1/2 years old, she awoke one morning with a lump on the back of her neck.

In 1994, a year and a half later, Stephanie joined 700 other people worldwide who had been diagnosed with fibrodysplasia ossificans progressiva (FOP) — a rare disorder that causes soft tissues to transform permanently into bone, immobilizing the joints of the body, and often leading most patients to become bedridden by the time they are 30.

Her mother has been fighting for a cure ever since.

In the late 1990s, Jennifer Snow began fundraising events to support the limited research on FOP, primarily led by Dr. Frederick Kaplan and his team at the University of Pennsylvania. Under her lead, Central Coast community members supported the FOP fundraising for over 16 years, raising more than $1.5 million.

She also served on the International FOP Association (IFOPA) — a nonprofit organization dedicated to the medical research, education and communication of FOP — board of directors where she worked in many capacities forwarding the mission of the IFOPA.

"The highlights of my work within the organization has been in advocacy, awareness and more recently in my participation in clinical trial preparation," Jennifer explained.

Her efforts helped the research grow and supported the finding of the FOP gene in 2006 and, on June 8, she was awarded the Jeannie Peeper Lifetime Leadership Award from IFOPA for her contributions to FOP.

"The progress that has been made is nothing less than phenomenal," Jennifer exclaimed. "Who knew that 20 years ago, with a hope and dream we would be in a world with an active clinical trial, research on FOP being worked on by a variety of sites both national and internationally and additional drug targets being worked on. It is truly inspiring that a rare condition such as this has made such progress."

Stephanie's reaction was also upbeat, and full of pride.

"I was excited for her as she has done a lot for the entire FOP community, not only in the local fundraising we did for many years but being an advocate for the voice of people with FOP in the research and now drug development areas," Stephanie said.

"My mom is always thinking about FOP, and how it can be better understood," she continued. "Because of the insight my mom has shared with doctors and researchers over the years, it has helped them better understand the complexities of FOP, and push forward advances towards a treatment for FOP."

After over 20 years, Jennifer Snow stepped down from her position with the IFOPA in late 2014, but continues to fight for Stephanie's freedom from FOP.

"Some people get to choose the direction of their lives," Jennifer explained. "FOP has chosen the direction for us. For me, I am heartbroken everyday my daughter has to deal with the condition of FOP, however I also cannot imagine my life having a greater calling than the work I have done for the FOP community."

Author: Jamie Guista
Source: Lompoc Record
2.0 from 6 votes
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