By Gina Quintanar
When my son was 10 years old, he attended his first NFED Family Conference. I will never forget walking in the door that first day.
I felt like for the first time since he was born, I could take a deep breath. I felt like I had come home to a place where there were people who knew what ectodermal dysplasia was about and what it was to raise a strong-willed child who just wanted to not be stared at and to be treated like any other kid.
The first thing I noticed was that no one was staring at my son. At that point in our lives we had never met anyone with ectodermal dysplasia in person. I would show him pictures of Charlie Richter on the NFED website and the life he had being a farmer working outside – even on hot days!
I promised we would try to meet him one day. On that first day at the conference where my son first met kids that looked like him, he also met Charlie RIchter! My son is now a senior in high school and can still describe the sights, sounds and feelings of that first conference.
So why do I help fundraise for the NFED? I help so other kids can feel what my son felt, or so a mom can find her strength and realize she is not alone.
Making that first phone call to the NFED and hearing the calm, friendly voice on the other end of the phone telling you that, yes, they can give you information that you can show your doctor so they can better treat your child and understand what ectodermal dysplasia is about.
Or, yes, they do know of a dentist who knows about ectodermal dysplasia. Maybe it’s as simple as I am going into my first IEP or 504 meeting at my child’s school and I need support, information or just someone to tell me it’s going to be ok.
When the idea of fundraising came up, I jumped on it because I wanted to give back to an organization who has given so much to my son and to my family. I always thought, I would if I could, but my husband and I don’t make much money so I didn’t have the money to donate.
So what could I do, how could I make a difference? I chose to make a difference by becoming a Family Liaison so I could be that supportive listening ear for someone else and running the Chance Auction at the Family Conference to raise a little money along the way. Hopefully through these things I can help the NFED be around for many years to come.
Gina Quintanar is the Family Liaison serving families in Southern California and Hawaii. She and her husband, Luis, can be found happily lending a hand at the Family Conferences. Gina and her family live in Burbank California.
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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