Voices Across America

Avery’s Hope: a nonprofit model for those starting out

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Carie

State: New Jersey
Congressional District: NJ07

Diseases

Gastrointestinal Disease

Issues and Challenges

Carie has encountered: Rare / Underserved Disease

My Story

I’m sharing my story in the hopes that I can help anyone who is creating or expanding a non-profit. My story is just beginning, but perhaps could be your building blocks. Hope this is helpful…

I am the President of the Board of Directors for a charity called Avery’s Hope. Avery is a little boy who was born with a rare gastrointestinal disorder called Microvillus Inclusion Disease. The charity was created by Avery’s grandparents who are close friends of mine, Caryl and Eric Harris. It was a local charity and raised a good amount of money for the families struggling with the care and bills associated with having a child with rare GI disease.

My journey with advocacy began with them. I always volunteered to help with their events because I love them, and they love Avery, so it was an easy choice for both my husband and me to show up. As the years went on, I realized that my thirst for philanthropy was being quenched and my soul felt fulfilled after participating in the events. My empath heart knew what I needed to do. In January 2020, I asked to join the Board of Directors. Do you ever feel like you have all the time in the world and are just NOT contributing to society? That was me. Not anymore. Fast forward to June of 2021, I became the President of the Board.

So, back to the reason for my writing. Once I got involved on the granular level, I realized that this was truly JUST the beginning. That the goal and mission of Avery’s Hope was beginning to get “wings” and the message was spreading. The Treasurer for Avery’s Hope, Tom Corrigan, began spreading the message across the globe (!!) so we were about to get busier AND bigger. It was glorious and terrifying at the same time.

To be able to expand and do so in a way that was organized and methodical required some planning. Luckily, my Type-A personality was just what the doctor ordered!
• I began creating templates and structure, so that our Board meetings had a distinct order, and therefore were repeatable.
• Meetings were recorded, Bylaws were formalized, signatures given.
• I brought on someone with whom I work and respect and know she is a perfect advocate who would give her time and heart to the cause.
• Another person who was active with Avery’s Hope events joined because he knew he could help in a deeper way and has proven it time and time again.
• We recruited another great friend because we trust him and his skills and his heart.
• A husband of a Board member joined and the two of them are lovely and warm and always provide great counsel and feedback!

In other words, we began expanding on an already-great Board so that we had more voices. More resources. More skill sets. Compassionate warriors.

We are now ready to expand our reach. We have the tools, we certainly have the people, and have the cause. The sky’s the limit.

My Motivation and Inspiration

My motivations are empathy, philanthropy, and advocacy. My inspiration are the rare-disease patients and their families; their strength knows no bounds.

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