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We understand because We've Been there.
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MATRIX is here for YOU!
RARE DISEASE DAY: LAUNCHING OUR NEW SUPPORT TOOL!
MATRIX provides a custom portal for HPP patient caregivers to record, store, track, and share all pertinent data from medical, psychological, and educational sources. From tracking treatment and symptoms to sharing medical files with various providers as well as schools, this online tool does the heavy lifting for you by having everything in one place. As your HPP patient transitions into adulthood, Matrix enables them to grow and become responsible for their own care while you BOTH have access to your joint portal. What an easy way to help them learn… its like training wheels! Thank you, AcrossHealthcare for providing this amazing software for caregivers. We can now go from surviving to THRIVING!
Meet Your Care Team
We are here to offer to support and help you through this challenging time
BA, LMT, Certified Life Coach, NA Medicine Woman
Patient & Family Support Program Director
RN, Paramount Advantage
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).
Our Amazing Families
Don’t take our word for it – here’s what our families want to share:
Jameson - Age 13
“The biggest change that we have seen in Jameson had been increased stamina. This may not sounds like a big deal, but [enzyme replacement therapy] has allowed him to participate fully in life again, maybe that means having energy to do the things he wants to do, not just what he has to do. We appreciate all of the support from the PainBox Program.”
Avery - Age 4
“When Avery started [enzyme replacement therapy] we made a bucket list of all the “ordinary” things she wanted to accomplish. One MAJOR check off on that list was climbing the ladder at the park. Not even a month after starting [treatment], she accomplished her goal!! And thanks to the PainBox Program, she was willing and able to keep up with her injections so we could witness this awesome moment!”
Porter - Age 14
“I’ve never met another kid with HPP who also has to give himself [exzyme replacement therapy] injections. Receiving the PainBox made me feel not so alone.”
– Porter, age 14
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.