Rare Leader: Caryl Harris, Executive Director, Avery’s Hope

The Basics
Name: Caryl Harris

Title: Founder and executive director

Organization: Avery’s Hope

Social Media Links:

Disease focus: Microvillus inclusion disease is very rare and has to be genetically inherited in an autosomal recessive manner.  Symptoms develop shortly after birth and can lead to infancy death. It is characterized by an inability of the intestines to absorb nutrients. Without total dependence on parenteral nourishment, children would suffer from malnutrition, dehydration, and slow growth development. A recent long-term option is organ transplants.

Headquarters: New Hope, Pennsylvania

How did you become involved in rare disease: My grandson was diagnosed with microvillus inclusion disease at around three months of age. Within the year, I found myself trying to help other families facing the enormous emotional and financial challenges of raising children living rare.

Previous career: I’m still in my previous career. I am the bicycle specialist for goHunterdon, which promotes sustainable transportation. I teach bicycle safety to children and adults, as well as run the Hunterdon County, New Jersey Bicycle Commuter program.

Education: B.A. in English from Livingston College, M.A. in English from Rutgers University Graduate School (and all but a dissertation in Creative Arts Education)

The Organization
Organization’s mission: Avery’s Hope raises money and awareness for children living with rare gastro-intestinal diseases and their families raising children living rare.

Organization’s strategy: We are still in our organization’s infancy and learning as we go. We began as a bike ride with the help of Children’s Hospital of Philadelphia. We now try to have a number of fundraisers throughout the year. We attend conferences, participate in lobbying efforts, and attend events where we can be a resource.

Funding strategy: Our strategy is to have three athletic events a year: #CaringForRare Bicycling Event Weekend, Zebra Virtual 5K, and a golf outing. This year our golf event will be a mini golf outing so that more families can participate.

What’s changing at your organization in the next year: We will be working with pharmaceutical companies to help us promote our events across the world.

Management Style
Management philosophy: We are an all-volunteer organization with a common goal: raise awareness and money. We work as a team. I try not to manage anyone unless I am the event organizer.

Guiding principles for running an effective organization: Learn, listen, and take risks.

Best way to keep your organization relevant:  We believe that we will always be relevant. People don’t realize the enormous financial challenge having a rare disease has on a family. Insurance covers some things, but in reality, if the disease is very rare, it does not. Out of pocket expenses take over. Sometimes a parent or caregiver has to stop working to care for a child. Until such time as that changes, we will remain relevant because it is our goal to help families in need. We have started and committed to the HOPE Family Fund at Children’s Hospital of Philadelphia. This a five-year commitment of $50,000 for the department of gastroenterology, hepatology, and nutrition to support patient assistance efforts. We also donate yearly to the Acacia Puleo Small Bowel/Liver Transplant Patient Assistance Fund at Children’s Hospital of Pittsburgh, and we’ve just begun a relationship with St. Jude Children’s Research Hospital to help support their Patient Assistance programs for children with gastrointestinal disease.

Why people like working with you: I’m driven to make a difference in the lives of children living rare. I go from dream to reality, and as one of my board members recently stated at an interview with Healtheo360, I don’t take “no” for an answer.

Mentor: Pat Sherman is my mentor. She is the Executive Director of F.E.E.D.ing Frenz (a nonprofit that assists with food and clothing drives). Previously she was the executive director of the NJ Ride Against AIDS. Pat has spent her life helping others less fortunate.

On the Job
What inspires you: My beautiful and beautifully rare grandson, Avery.

What makes you hopeful: Meeting amazing patients, parents, grandparents, and caregivers at the Global Genes RARE Patient Advocacy Summit, the Everylife Foundation, and other events gives me a tremendous amount of hope.

Best organization decision: The best decision was to take the idea of Avery’s Hope and make it a reality.

Like best about the job: I’m surrounded by people who share my vision.

Like least about the job:  Because I still have a “day job,” which I like very much, I don’t always have the time to take the organization where I want it to go.

Pet peeve: My biggest pet peeve is listening to people complain about ridiculous things. Everyone should spend a few hours in a children’s hospital to put things into perspective.

First choice for a new career: Full-time executive director of Avery’s Hope

Personal Taste
Most influential book: The Awakening by Kate Chopin

Favorite movie:  Somewhere in Time

Favorite music: Classic rock and Jazz

Favorite food: Peruvian, vegan and Indian

Guilty pleasure: Riding my road bike with friends and spending time with my husband and family, particularly in the middle of nowhere on a lake and in the mountains

Favorite way to spend free time: Playing with our grandson