Avery’s Hope Raising Funds for Grandson’s Extremely Rare Disease
I recently had a very interesting conversation with Caryl Harris, the Founder and Executive Director of Avery’s Hope.
Avery’s Hope is a charitable organization created about 10 years ago by Caryl and Eric Harris to provide financial support and advocacy for families impacted by rare gastrointestinal diseases.
Learn more about Avery’s Hope, their upcoming fundraiser, and why Avery is a “spotted zebra” here in our conversation:
When he was three months old, their grandson, Avery Harris, was diagnosed with Microvillus Inclusion Disease. He is one of 100 people in the world diagnosed with this disease. During his first three years, Avery spent a good amount of his time in hospitals. Caryl and Eric watched as their son, daughter-in-law, and other families navigated through the healthcare and insurance systems and managed the financial burden of insurance-denied expenses. This was their call to action to help patient families.
Their fundraising dollars support several hospitals and rare organizations nationwide. These funds are then distributed to patient families as needed.
Children’s Hospital of Philadelphia (CHOP) HOPE fund for GI families receives the bulk of the donations. They have provided about $100,000 over the past ten years.
Also benefitting from Avery’s Hope are St. Jude’s Research Hospital Pre-Cancer Disposition Center, Children’s Hospital of Pittsburgh Acacia/Puleo Small Bowel/Liver Transplant Patient Assistance, Texas and Boston Children’s Hospital Patient Assistants, and National Organization of Rare Disorders (NORD) Travel and Lodging fund for rare GI patients.
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Through their BrAvery Awards, they provide funds directly to patient families. These funds are used to cover insurance-denied expenses as well as medical supplies, diapers, formula, rent, utilities, and other expenses. Most of the patient families are underemployed or unemployed as they focus on caring for their children.
Avery’s Hope is a 100% volunteer organization and 100% of the money raised from their fundraising events goes to the patient families.
Avery’s Hope Fundraising Event
Their main fundraising event is a Caring for Rare Bicycle ride in Hunterdon and Bucks counties on Sunday, September 22. It’s a ride for everyone and all skill levels. There are rides on the D&R canal and there are three road courses of 31, 62, and 100 miles. All rides are fully supported with SAG wagons and rest stops. The ride starts and ends at the Federal Twist Vineyard in Stockton, Pennsylvania.
All registrants receive a meal and drink of their choice after the ride. There will also be live entertainment provided by Little Red Rooster Blues Band. Participants can also rent bikes from Unlimited Biking (pre-registration required). They have about 150 riders and volunteers signed up, are expecting 250 to 300, and can accommodate up to 400.
Avery’s Hope is so much more than a fundraising organization, they also advocate for the rare community. It’s linking patients to the proper care team and necessary resources or lobbying for legislation that’s inclusive, fair, and equitable for the rare community.
New Jersey Governor Phil Murphy and Pennsylvania Governor Josh Shapiro declared September 7th Gastrointestinal Disease Awareness Day. On September 7th Avery turns 10 years old!
More information can be accessed at Averys-Hope.org