Meet 12-year-old Raina
When Raina and her friends created a club called “The Underpuppies,” they decided on just one requirement: You have to be genuinely kind to join.
To enforce that requirement, they developed a test. The current Underpuppies stage a situation where the prospective member has to help someone in need or be willing to ask for help.
If they pass the test, they take an oath promising to be kind and respectful. After the oath, they are in the club.
When we were considering event chairs for the first-ever In Pursuit of a Cure Day of Giving, similar characteristics came to mind. An event chair represents the global FOP community and rallies people to advance the search for a cure. Kindness, respect and a community focus is necessary.
Who better to represent the FOP community than an Underpuppy? 12-year-old Raina was an obvious choice!
Raina was diagnosed with FOP when she was four. But she has not let her diagnosis stop her from living a full life.
“While FOP might limit some of the things I can do, it doesn’t define who I am,” she says.
Like many 12-year-olds, she enjoys making jewelry, creating art and going to school dances. This year, she’s excited to join her mom and dad, Shannon & Mike Halford, as an event chair for the In Pursuit of a Cure Day of Giving.
“Research is important to me because FOP is difficult to deal with every day,” she says. “I would love for doctors to find out more about FOP so they can learn how to cure it.”
On September 17, our community is coming together to advance the search for more treatments to stop flare-ups and the growth of extra bone. Together, we have made significant strides — but we still have a long way to go.
Click here to learn more about research goals and how you can help us advance the search for a cure.
Together, we can make sure kids like Raina can continue enjoying the things they love!
Credits : IFOPA
