by June Portnoy
In the heart of New Hope, a small nonprofit organization named Avery’s Hope is making a big impact. Founded in 2017 by New Hope residents, Caryl and Eric Harris, the organization is dedicated to alleviating the financial burden on families navigating the complexities of rare pediatric gastrointestinal (GI) diseases. Named after their grandson, Avery, who was diagnosed with microvillus inclusion disease, the organization has become a lifeline for families facing alarming medical and insurance challenges.
Born in 2014, Avery was diagnosed with microvillus inclusion disease at just three months old, a condition so rare that fewer than 100 people in the U.S. share the diagnosis. Despite early dire predictions, Avery has defied expectations, largely thanks to the care he receives at Children’s Hospital of Philadelphia (CHOP). Now approaching his 11th birthday, Avery thrives, but his journey has illustrated the profound challenges families face when dealing with rare diseases.
“We had a front-row seat to the rare disease journey,” shared Caryl. “The financial strain, emotional toll, and endless battles with insurance companies are overwhelming.” Motivated by these challenges, the Harris family launched Avery’s Hope to provide practical, immediate support to families dealing with these adversities.
At the core of Avery’s Hope’s mission is the GI HOPE for Families Fund, established in partnership with CHOP’s Department of Gastroenterology, Hepatology, and Nutrition. Each year, the organization replenishes the fund to assist families with out-of-pocket and insurance-denied expenses. In December 2024, Avery’s Hope made its largest single donation yet, contributing $25,000 to this essential resource.
“The social workers at CHOP are the true heroes,” said Caryl. “They’re on the ground, helping families navigate the financial, emotional, and physical realities of the rare disease journey.”
Avery’s Hope’s efforts extend beyond financial grants. In partnership with BasiCare Plus, the organization launched a mental health counseling program for families affected by rare GI diseases. This initiative, supported by generous grants, provides eight counseling sessions per family member, co-pay assistance, and access to telehealth services. A pilot program has already supported six families, with plans to expand significantly in 2025.
Another critical initiative is their Travel & Lodging Assistance Program, a pilot program with CHOP. Recognizing the challenges families face when traveling for specialized care, Avery’s Hope collaborates with programs like RAREis to cover these expenses, ensuring families can access the care their children need.
This past year, this nonprofit was also the recipient of a local grant from Foundations Community Partnership in Doylestown to enhance its BrAvery Program for Bucks County families. BrAvery Awards help individual families with their out-of-pocket and insurance-denied expenses.
Caryl explained that there are 2,268 pediatric GI families with rare or chronic GI issues who go to CHOP just in Bucks County alone, and they all have full access to all the services provided by Avery’s Hope. “We also established a national program with the National Organization for Rare Disorders, and we have a medical assistance program through them so that if anyone is below poverty level and needs assistance, they can get even more financial support than what we can give them individually.”
Fundraising events play a vital role in sustaining Avery’s Hope’s programs. Their annual bike ride, now entering its 10th year, has grown from 56 participants in its inaugural event to over 217 riders in 2024. Scheduled this year for September 21, the ride offers routes of 31, 62, and 100 miles, winding through the scenic streets of New Hope, beginning and ending at the Federal Twist Vineyard in Stockton, New Jersey. This charity bike ride also includes a towpath ride on both sides of the river.
Another popular event is its golf fundraiser, held each April at Topgolf in Northeast Philadelphia. These events not only raise crucial funds but also increase awareness of the organization’s mission. “People come to these events knowing nothing about us,” said Caryl. “By the time they leave, they’re advocates for our cause.”
Local businesses and community groups have also rallied around Avery’s Hope. Dr. Dawn Rickert of New Hope Cosmetic and Family Dentistry is a frequent sponsor, while Pierre’s Chocolates in New Hope has supported the organization with Valentine’s Day fundraisers. Additionally, the New Hope Run Club has previously partnered with Avery’s Hope to raise funds through the Zebra 5K event. Additionally, Jersey Mikes in New Hope has been a big supporter of this organization, also hosting fundraisers for Avery’s Hope.
Looking ahead, the organization is spearheading the “Light Up for Rare” initiative, aiming to illuminate New Hope businesses in the rare disease awareness colors of purple, green, and pink on February 28, which is World Rare Disease Day. “We’re hoping the whole town will light up,” said Caryl, emphasizing the importance of visibility and advocacy for the rare disease community.
Caryl and Eric Harris’s firsthand experience has deeply informed their approach. From creating hygiene bags for parents unexpectedly staying at the hospital to providing small grants to cover utility bills, Avery’s Hope addresses the overlooked but critical needs of families.
“I’ve seen parents struggling to pay for parking after weeks in the hospital,” Caryl recalled. “These are the everyday challenges that most people don’t think about.”
For families like Avery’s, the support provided by Avery’s Hope is transformative. “We’re not looking for a cure,” explained Caryl. “We’re here to help families survive and navigate the system to get the care they need.”
While the organization remains all-volunteer, Caryl dreams of expanding their reach through grants and additional staffing. “If we could hire an executive director, we could grow significantly,” she says. “But even if that doesn’t happen, we’re not going away. There are too many families who need us.”
At its core, Avery’s Hope embodies a simple yet profound philosophy: one family at a time. Whether through financial assistance, emotional support, or community advocacy, the organization’s impact is undeniable. As Caryl puts it, “If we can ease the burden for even one family, we’ve done our job.”
To learn more or to support Avery’s Hope, visit their website at averys-hope.org, contact them at 267-714-6106 or visit averyshopepa@gmail.com.