Sometimes when a young person is hurting—mentally or physically— while battling a rare disease, easing the pain can be helped by another youth who’s been through that before, shares Deborah Ayres, president of the Avalon Foundation, a nonprofit agency that offers support to families including children diagnosed with rare diseases. That sentiment led to the slogan of the Avalon Foundation, opening new offices this year on Central Park West in Toledo, “Kids Caring for Kids.”
Ayers describes Avalon as being “By Kids, For Kids.” The “By Kids” are the volunteers from ages 10 to 18 years; the “For Kids” are pediatric patients, typically ages 3 to 18 years, fighting rare disorders, both locally and nationwide. The Foundation’s leadership program is now looking for “kids” to fill open seats on its Youth Advisory Board.
The program’s primary support program focuses on kids across the country, diagnosed with Hypophosphatasia (HPP), a rare genetic metabolic disorder that affects every system of the body and can be life-threatening. Special care packages are curated to a patient’s preferences, with the goal of brightening their spirits and encouraging them to continue with the difficult treatments. “Basically, toys and comfort items, rewards that would be meaningful to the individual child,” Ayers said, describing the contents of the packages, adding, “as well as incentives for siblings and a family gift to lessen the struggle during this critical time.”
Three levels of engagement
The Avalon Youth Leadership Program offers three levels of involvement, in increasing time and responsibility:
The volunteer team to help shop for the box items and wrap them with their family, and take part in service opportunities. As Leadership Team members to train and lead others in the shoppingtrips, to speak on behalf of Avalon at events, and to attend membership programs and meetings. And, as members of Avalon’s Youth Advisory Board to develop policies and procedures to work alongside the Board of Directors and community leaders, to raise awareness of the rare disease community, to raise funds, to advocate program development, and to implement skills in recruiting.
Recruiting
It is recruiting that’s the focus. “We’re actively recruiting to expand our programs, and expand our committees,” Ayers said. “Several of our leaders are graduating. There’ll be nine open spots on the Youth Advisory Board, which has 15 seats. “We start with a new group every August,” she explained. “We run on a school calendar year.”
Providing perspective
In addition to the workings of the Avalon Foundation, these youths are helpful for their experience, especially because several of them have been diagnosed with serious illnesses themselves. Ayers said many of these volunteers have been through what the recipients/patients are going through, and that makes the progam unique. “A patient’s perception of their medical experience can be easier to perceive from a peer standpoint than from a parent or medical professional standpoint,” Ayers said. “Peer support can have a great emotional impact when a child is going through a medical challenge – especially if those peers can relate because of a similar situation.”
About the Avalon Foundation
The Avalon Foundation was named after Ayers’ daughter Avalon, who was diagnosed with HPP at age 3. Avalon, now, 20, manages her disease daily, and attends George Washington University. She remains active with the Avalon Foundation as a board member and speaker, and has plans to go to law school to continue her advocacy for rare-disease families. Avalon is also starting an outreach program with local schools, so counselors and teachers can identify youths who might need help navigating treatments for illnesses. For now and beyond, “We have lots of amazing kiddos,” Ayers said.
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