Who We Are
Our Mission & Vision
The Avalon Foundation is an organization that promotes and teaches youth leadership through offering support to kids receiving life-altering treatment for rare diseases.
Mission: To empower kid-driven leadership that supports kids with rare disease
Vision: To collectively cultivate compassion by caring for kids
Building Youth Leaders in the Toledo area
Helping Families all over the United States
Provide Support to the Rare Disease Community
How It Began
It all started with the dream of a little girl, Avalon. She wanted to support other kids just like her.
Kids Caring for Kids
The Avalon Foundation began with an act of kindness from a 10-year-old girl who wanted to help ease the pain and distress of other children who, like her, live with a rare disease.
Avalon Budd was just 9 months old when her pediatrician became concerned with her gross motor skill development. It took almost 3 years to get a diagnosis: Hypophosphatasia (HPP), a rare genetic disorder in which defective mineralization (the process by which bones and teeth take up minerals such as calcium and phosphorus) causes abnormal development. Her parents poured over all the research they could get our hands on, but there wasn’t much available. There was no treatment available, either.
Avie couldn’t walk without gait issues, much less run or jump. She used a wheelchair and electric scooter to maximize her mobility throughout her childhood years. She also faced challenges with cognition, energy, and sensory processing.
In 2015, Avalon turned 10 and the FDA approved the first-ever treatment for HPP, an injectable enzyme replacement therapy (ERT) called Strensiq produced by Alexion, a global biopharmaceutical company focused on developing life-changing therapies for people living with rare disorders.
In just three months, Avie went from using a wheelchair to running and jumping around the volleyball court! The results were nothing short of miraculous, but it took time to start seeing improvements and Avie struggled with the pain treatment.
Injections are painful and mentally challenging, no matter what condition you have or how old you are. Avie said these injections, which were delivered three times a week, felt like hot lava under her skin. Other side effects were practically unbearable and rendered her immobile. She
Avie’s grandmother put together a “PainBox” to provide encouragement and rewards to get through each injection. This gave Avie the motivation to continue with her treatment and by 10-12 weeks she finally experienced noticeable improvements in her physical ability, endurance and overall comfort level.
Avie told her mom that she wanted to help other kids like her starting treatment. Nine months later, The Avalon Foundation was formalized as a 501(c)(3).
The People Behind Our Passion
We cannot carry out our mission without our youth leaders, board members, and volunteers
#KC4K Youth Advisory Board
<br /> Olivia Declereq
Founder, Graduate Advisor
TAF Board of Directors
BA, LMT, Certified Life Coach, NA Medicine Woman
Business Development Executive
Founder, Make-A-Wish of NW Ohio
Development & Events Committee Chair
Rehmann, Epic Toledo
MBA, Data Analytics
VP, Danberry National
Executive Team Information Technology, Security
TAF Staff & Support
Patient & Family Support Program Director
RN, Paramount Advantage
Youth Leadership Program Director
Patient Support Team
Planned Giving Consultant
Contract Transport Services
Wellness Advisory Board
Mary Beth Crawford, M.D.
Hospice & ER Physician, Motivational Speaker
Lisa Richards, MSN, RN, CPNP-PC
Guldal Caba, PhD, ND, MEd
Clark Ausloos, MA, LPC, LPSC, NCC
Julie Burrow, MD and Associates
Karen Hoblet, PhD, MSN, RN, CNL
Professor of Graduate Nursing, University of Toledo
Vice President, Huntington Insurance
BA, Graduate student in Clinical and Mental Health Counseling Human Development
Let’s Work Together
Founded in 2017, The Avalon Foundation is committed to youth centered leadership development through service to families affected by rare diseases. Through our #Painbox program we provide emotional support to pediatric patients and their families during life-changing transitions.
Events & Fundraisers
Visit our Rally-Up site to connet to our events to purchase tickets and access event activities.