Our Team

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

Our Inspiration

It all started with the dream of a little girl, Avalon. She wanted to support other kids just like her.

Kids Caring for Kids

Avalon's Story

 

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 Alexiona 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 desperately wanted to stop treatment and it became increasingly difficult to maintain compliance with the protocol.  

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 Team

The People Behind Our Passion

We cannot carry out our mission without our youth leaders, board members, and volunteers

#KC4K Youth Advisory Board

Grace Jeffer

Grace Jeffer

Senior Leadership

Amelia Kanjuparamban

Amelia Kanjuparamban

Senior Leadership

Cecelia Chowdhary

Cecelia Chowdhary

Senior Leadership

Adam Prymas

Adam Prymas

Senior Leadership

Mel Malczewski

Mel Malczewski

Senior Leadership

Allie Miller

Allie Miller

Senior Leadership

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Becca Tittl

Becca Tittl

Maddox Smith

Maddox Smith

Senior Leadership

Brooke Barger

Brooke Barger

Junior Leadership

Avalon Ayres

Avalon Ayres

Founder, Graduate Advisor

Katy Gruber

Katy Gruber

Graduate Advisor

Kelsey Gruber

Kelsey Gruber

Graduate Advisor

Kaden Heldt

Kaden Heldt

Graduate Advisor

TAF Board of Directors 

Deb Ayres

Deb Ayres

President

BA, LMT, Certified Life Coach, NA Medicine Woman

Bethany Hefflinger

Bethany Hefflinger

Executive Team, Secretary

WynHouse
Business Development Executive

Todd Whited

Todd Whited

Executive Team, Treasurer

Ohio University

Marcy McMahon

Marcy McMahon

Senior Advisor

Founder, Make-A-Wish of NW Ohio

Kristy Kaufman

Kristy Kaufman

Development & Events Committee Chair

Rehmann, Epic Toledo

Douglas Hoblet

Douglas Hoblet

Financial Director

MBA, Data Analytics
Buckeye Broadband

Megan Jackson

Megan Jackson

Member at Large

Brittany Craig

Brittany Craig

Advisor

VP, Danberry National

 

Matthew Ayres

Matthew Ayres

Executive Team Information Technology, Security

Allie Hendricks

Allie Hendricks

Marketing Director

Owens Community College

Miranda Moscinski

Miranda Moscinski

HR Director

GT Technologies

TAF Staff & Support

Jen Gruber

Jen Gruber

Programs Director

Sarah Demary

Sarah Demary

Programs Staff

Traci Cleghorn

Traci Cleghorn

Patient & Family Support Program Director

RN, Paramount Advantage

 

Casey Czubek

Casey Czubek

Youth Leadership Program Director

Lourdes University

Carly Miller

Carly Miller

Programs Support

Alison Miller

Alison Miller

Events Committee

Hyfah Hilou

Hyfah Hilou

Committee member

TutorSmart

 

Vaughn Hoblet

Vaughn Hoblet

Legal Advisor

Sam Boubaker

Sam Boubaker

Committee member

Jill Jacoby

Jill Jacoby

Events Committee

Gina Rymers

Gina Rymers

Volunteer

Contract Transport Services

 

Margo Prymas

Margo Prymas

Shopping Mentor

Shelby Skiver

Shelby Skiver

Events Committee

always Open

always Open

Committee member

Volunteer Today!

Anthony Cotton

Anthony Cotton

Digital Advisor

Adly Digital

Wellness Advisory Board

Mary Beth Crawford, M.D.

Mary Beth Crawford, M.D.

Hospice Medical Director, Motivational Speaker

Lisa Richards, MSN, RN, CPNP-PC

Lisa Richards, MSN, RN, CPNP-PC

Promedica, Endocrinology

Guldal Caba, PhD, ND, MEd

Guldal Caba, PhD, ND, MEd

DrGuldal.com

Clark Ausloos, MA, LPC, LPSC, NCC

Clark Ausloos, MA, LPC, LPSC, NCC

Julie Burrow, MD and Associates

Karen Hoblet, PhD, MSN, RN, CNL

Karen Hoblet, PhD, MSN, RN, CNL

Professor of Graduate Nursing, University of Toledo

Jamie Heldt

Jamie Heldt

CEO, Curated Experience Consulting

Susan Hagemeyer

Susan Hagemeyer

,Clinical and Mental Health Counseling Human Development

Open Position

Open Position

Patient Rep

Help Needed!

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