The Avalon Foundation of Toledo has been nominated for a RARE Champion of Hope Award through Global Genes!
Describe why this organization is Champion of Hope in the selected field.
The Avalon Foundation began as the dream of a 10-year-old girl who was inspired to start the nonprofit after undergoing painful treatments for hypophosphatasia. Her hope and determination trickled into the organization, and the kids on the #kc4k advisory team and the #PainBox recipients all find hope through The Avalon Foundation. By providing encouragement and support to other HPP patients undergoing treatment, the #kc4k kids spread optimism with every #PainBox they deliver, every video call they make, and every card they send. They are changing the world in small ways with the lives they touch, and those ripple effects can be seen in their own lives, the rare disease community and Northwest Ohio.
Describe how the organization addresses the needs of rare disease patients in an innovative way.
Rare diseases are considered rare because so few people have them, which leads to feelings of isolation and loneliness. The Avalon Foundation’s alternative name, Kids Caring for Kids, highlights part of our mission: to show other children with rare diseases that they are not alone and that other kids care and support them. And it’s not just the #PainBox recipients who benefit; the kids on the #kc4k team learn leadership, compassion, commitment and contribution (LCCC). While incentive gift boxes are not necessarily new, kids caring for kids through tangible shows of support is innovative. Knowing that each toy was handpicked by another kid and each handwritten note was composed by someone close in age helps HPP kids feel supported and cared for by their peers at a time when social acceptance is imperative to emotional growth.
How has this organization inspired others?
The Avalon Foundation has a 100% compliancy rate rate. Every child with HPP who has started the painful, subcutaneous Strensiq injections while being supported by the #kc4k team and #PainBoxes has finished their first round of treatment. Many of these kids are young–toddlers up to teens–and willingly going through weekly injections is a tough sell…especially when the benefits aren’t seen for months. Yet these kids still finish their initial round of treatment, illustrating the positive impact of kids caring for kids.
While the #PainBox recipients–the kids with HPP–are inspired, so are the adults and board members associated with The Avalon Foundation. Watching these young kids, ages 10-16, selflessly donate their time and energy to supporting kids with a rare disease is inspirational in and of itself. As if that wasn’t enough, hearing the stories of the kids undergoing treatment and how meaningful the #PainBoxes were for them keeps us all going. It’s truly amazing what a gift and a heartfelt note from a real person can do during a time of critical transition.
What challenges has this organization overcome in the pursuit of their work in the rare disease community?
The Avalon Foundation started with nothing but a young girl’s dream. Through the hard work of Avalon, her mother Deb Ayres, and all of the other instrumental adults who helped form the nonprofit, they overcame the difficult task of founding a nonprofit. They built a grassroots Board of Directors, created an organizational structure that allows minors to be at the helm, they branded and created an organization that is unique in its service to children in two distinctly different manners (leadership and psycho-emotional support), and created a program that supports the WHOLE family rather than just the child affected by rare disease. They raised substantial funds for HPP patients in NW Ohio and SE Michigan by partnering with a development company and completing a home-build that donated $50,000, but the next challenge is to secure enough funding to expand to other rare diseases. The Avalon Foundation is currently servicing every request with cards of support, but they aspire to also provide each rare disease patient with a #PainBox as well. When the coronavirus pandemic hit, they reconfigured their procedures with minors to maintain program services to patients during the pandemic.