AVALON FOUNDATION OF TOLEDO

Description

After a decade of living with the rare disease Hypophosphatasia, a 10-year-old girl started a newly FDA-approved treatment. In just 3 months she miraculously went from part-time in a wheelchair to the volleyball court! However, it came at a steep price. The treatment was extremely painful and did not yield noticeable results for three months. In order to keep on track, she was given a "PainBox" (incentive program) for encouragement. It worked! By 12 weeks she was able to start moving in ways she had never experienced. She told her mom that she wanted to support other kids during their painful medical treatments. A few months later, with an overwhelming amount of support, the paperwork was filed and a youth advisory board and board of directors was built. The organization’s founding principle is peer support and leadership. The youth advisory board is the heart of the organization. The board of directors is the workhorse and mentor panel for the youth leaders serving the pediatric patients. The youth advisory board has created in depth presentations with advanced technology, presented to small and large groups of business leaders. They have educated their peers in various local schools about rare disease, leadership and the importance of treating people with kindness. They have learned the value of commitment and sacrifice in order to make a difference in others' lives. And the more they accomplish, the more they want to raise the bar!