By Lindsay Claire

Our son is the mighty Ronan Claire and he is affected by a mutation of the p63 gene, most visibly, ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. From the first day we found out about his diagnosis, we knew we needed to do some research.

That is how we came across the National Foundation for Ectodermal Dysplasias (NFED) and signed up for our first conference. It was through the NFED that we found the most information and support.

We realized how important this organization is for people, especially in connecting each other with families in similar situations. It is such a valuable resource that we wanted to help out by raising money for the foundation.

Getting Physical for Fundraising

Our fundraising journey began in 2017 when Ronan was two years old. We hadn’t really done anything like this before. We knew we were outdoorsy-type people, always challenging ourselves physically while enjoying nature. My husband, Dennis, was inspired by outdoor pursuits of endurance athletes who redefined the modern era.

Scott Jurek and Andrew Drummond created live-streaming content while engaging in extremely difficult pursuits. He thought we could share activities as a family or as individuals. The goal was to engage in these unique winter outdoor activities and share them live or immediately post activity to engage the audience, make a connection and continue this connection throughout the month.

We did this for several years and it kind of fell flat after the second year. We hoped this would lead to a few NFED folks to be interested in joining us in New Hampshire for some outdoor activities like ice climbing, backcountry skiing, winter hiking, etc., and record it to make an outdoor film we could submit to a film festival to help spread awareness.

This remains Dennis’ goal. The theme is to get NFED folks who have impaired sweating to succeed in winter environments, where their perceived deficit would be an advantage.

Get Creative 

So, each February, we would form a Facebook fundraising page and do different outdoor activities like hiking, or skiing, or rock-wall climbing and share them.

It can be hard to find things to do when fundraising, so we had to get creative. One year, I chose to climb the height of Mt. Washington (6,288 ft.) on a Jacob’s Ladder (torture device!) at the gym and encouraged people to donate an amount of their choosing every thousand feet I climbed. I made it to the top and it was fun watching people follow my climb and donating as I got higher.

This year, since Ronan is five, we wanted to include him directly in the process. He loves art, so we held a raffle where everyone who donated would get their name in a drawing for a personal painting done by Ronan. Everyone actually loved this idea, including Ronan, and we had a lot of success with it.

Share Your Journey

I think the reason we have done well with our fundraising every year is because we have included our friends and family in Ronan’s EEC journey since he was born. Educating people about his condition brought them closer to us.

So, when we were asking for donations, it wasn’t “Hey, please donate to this charity that you have no personal connection with.” It was personal for them because we have included them in our lives since the beginning. 

We are all striving for connection in this world, and searching for good.

We may not have had as much success raising money for the NFED if we hadn’t opened ourselves up and shared our struggles and successes along the way.

That would probably be my biggest advice if you are interested in fundraising.

Grow Your Village

Be open and honest. Share your journey–the wonderful parts and the hard parts. Grow your village. I have learned people want to listen and people want to help.

Our family is so happy to raise money for the NFED. It is such a worthy cause and we will continue to do so for as long as we can. We thank the NFED for everything they have done for this unique and beautiful community that has become family.

Lindsay Claire is a guest blogger for the NFED. She and her husband, Dennis, live in New Hampshire with their sons, Denny and Ronan. You can read more about their family here.

Share Your Story

2 comments on “Sharing Mighty Ronan’s Story Makes All the Difference”

  1. 1
    Tim Mickelson on March 24, 2021

    This is a beautiful story, Lindsay. And some wonderful advice for parents. I love the idea of auctioning off a painting from your mighty artist, Ronan! What a great source of inspiration. Thank you for sharing with all of us!!

  2. 2
    Lindsay on March 31, 2021

    Thank you, Tim! I hope this helps people to think outside the box and have fun with it. After all, doing good IS fun!

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