Avalon Budd, the young founder of The Avalon Foundation of Toledo, has been nominated for a RARE Champion of Hope Award from Global Genes!
Describe why your nominee is a Champion of Hope in the selected field.
Avalon (Avie) Budd, who will turn 15 next month, began her Strensiq treatments when she was 10 years old. She wanted to quit numerous times, but her family kept her going. Before treatment, Avie’s life expectancy was only 27 due to infantile hypophosphatasia (HPP).
She barreled through, getting over the hill of the 3-month mark, and finally started seeing results. She could run and jump, her skin color improved, and you could no longer see her bones poking through her translucent skin. She went from part-time in a wheelchair to playing on the volleyball court in only a few months!
It was then that Avie came up with the idea to start a nonprofit to support other kids enduring painful HPP treatments. She knew if it was that difficult for her at 10 that younger kids wouldn’t be able to understand the long-term benefits of the painful injections. One thing that really inspired Avie to continue the weekly subcutaneous injections was the “Pain Box” that she received from her grandma for completing each weekly round of treatment, and that was what sparked her idea for #kc4k #PainBoxes.
Avie asked her mom, Deb Ayres, to start a foundation to help other kids with rare diseases, but Deb put off the idea, assuming Avie would lose interest over time. She didn’t. After several months of hounding her mother to start a nonprofit, when Christmas rolled around, Avalon informed her mom that she “better not see anything under that tree except my 501(c)(3).” The rest, as they say, is history.
Avalon’s story alone inspires hope: she endured repeated, painful treatments in order to improve her health, and then she turned around and used her life experiences to create an organization that worked to improve the situations of other kids with HPP. Avalon isn’t content to stop there either; she hopes to expand to other rare diseases and possibly branch the #kc4k Youth Leadership Program out to other states. When Avie dreams, she dreams big!
Describe how and why their work is innovative for the patient population they serve.
Avalon was just a child when she came up with the idea for The Avalon Foundation, so from its origin, the nonprofit is truly Kids Caring for Kids. As far as we know, The Avalon Foundation is the only nonprofit run by kids for kids; the adult board members simply oversee the organization and take care of finances.
How has your nominee inspired others?
Avalon inspires every person she meets. She has wisdom far beyond her years and cares vehemently about the welfare of others. She is the kid who, for her birthday, asks that all gifts be donated to kids in need, or for Christmas, asks for a nonprofit to help other kids. She is the student in school who reaches out to those who are struggling, befriending those without friends. She doesn’t care about popularity or looks; she is one of those rare teenagers who has the outlook of a grown woman. To put it simply: to know Avie is to be inspired by her.
What challenges has your nominee overcome in the pursuit of their work in the rare disease community?
Before Avalon could champion for other kids with a rare disease, she had to first address her own battle with hypophosphatasia. While the Strensiq treatments have drastically improved her quality of life and extended her life expectancy, they are not a cure, and she still battles extreme exhaustion, brain fog, and weakened bone density. Yet she marches on, advocating for herself and other kids on a daily basis, even helping her school district come up with alternatives to in-person learning for those who are immunocompromised, and then she runs The Avalon Foundation in the free time she has left.