By Kristin Matus Kelso
“Do all the good you can. By all the means you can. In all the ways you can. In all the places you can. At all the times you can. To all the people you can. As long as ever you can.” ― John Wesley
I’m often asked why I volunteer for so many things. The short answer is “because I can.” However, the longer answer is that I volunteer because I believe that if my experiences can help just one person, or shed light on one issue, or answer a question for one individual, or educate someone about one aspect of ectodermal dysplasia, then I’ve accomplished something.
Many of us found our way to the NFED by accident. By this I mean that we had no idea that our family member or loved one had a condition called ectodermal dysplasia until they were first diagnosed – perhaps at birth or later during their first 1-2 years or maybe even later than that.
Our story began on December 22, 2004 when my daughter, Allyson, was born and immediately was diagnosed with Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome. Say what?!?! Talk about a complete shock! With the help of family, we quickly found the NFED through an Internet search and began to learn about EEC (Ally’s syndrome) as well as the many other ectodermal dysplasia conditions. While we were still wrapping our heads around her diagnosis and what “that” meant for Ally’s quality of life, we were moved by the compassion of the NFED staff, the communication we received, the literature we were given and the hope that surrounded everything associated with the NFED.
Within six months of Ally’s birth, my sister organized the 1st Rally for Ally fundraiser in Washington, DC. By the next year, we had held the 2nd Annual Rally for Ally fundraiser, sold raffle tickets during Awareness month, and had attended our first family conference in St. Louis, MO. We were doing all that we could to connect and learn and contribute to this new-found family, the NFED. As of this summer, we’ve held eleven fundraisers which have raised close to $200,000 for the NFED. We’ve attended nine family conferences.
So, “why do I volunteer?” My answer is, “why not?” I believe in this organization and what it represents. I want to give back my time and energy as a thank you to all of the people who have touched our lives through our connections with the NFED over the past 10 1/2 years. I admire the families who tirelessly fundraise so that they can afford the trip to attend the family conference. I’m brought to tears when a child first sees another who looks just like him. I laugh when I see dozens of blonde and bald heads bobbing up and down in a swimming pool at family conference and my long-haired brunette daughter feels left out. I feel blessed when someone opens up and shares their story with me. I’m touched when I receive a thank you email from a mom who finally found someone to talk with who “gets it.” In these moments, I know that I’m making a difference to someone by doing all the good I can.
Editor’s Note: Kristin Matus Kelso serves as the Family Liaison to families in North Carolina, South Carolina, and Virginia. She has been involved with the NFED since her daughter Ally’s birth and feels she can offer a lot of wisdom, support, and guidance as she shares her daughter’s journey with others.
Would you like to volunteer for the NFED? Email Lea Richardson, NFED manager, community engagement, at firstname.lastname@example.org or call her at 618-566-6871. You can also learn more on our website about volunteering.
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