Kluzek Family

by James Kluzek

We were asked why we volunteer for the NFED. It all started November 16, 2000 when our daughter, Christina, was born with a genetic disorder called Goltz syndrome. This day changed our lives forever.

We had never heard of this syndrome and more importantly most of our doctors knew nothing about it either. We felt lost and alone and didn’t have a clue where to turn.

Then my wife, Sue, found out about an organization called the National Foundation for Ectodermal Dysplasias on the internet and it changed everything for us.

We attended our first Family Conference in St. Louis in 2006 and all we could say was WOW. For anyone out there who has not attended one yet all I can say is just do it. From the minute you walk in, you will be glad you did.

It was life changing for us. We were no longer alone. My son who was only eight at the time and summed it up when we asked him what he thought after the conference. He said, “It is really nice when somebody asks how Christina is and they really mean it.”


At that conference, we met the NFED staff who are the most wonderful caring and helpful individuals we have ever met. We met other families who had gone through what we had and were going through now. These people are now part of our family and we can call them any time to exchange information or just talk.

To see our daughter making friends with other children that were going through all the same things she was going through still brings tears to my eyes even 10 years later. She gets excited about seeing all her friends every year.

Our son who is not affected has made friends from all over the country who he has grown up with and keeps in touch. The 8-year old boy from our first conference is now 18 and a sophomore in college. Last year, he served on a panel at conference, to answer questions and talk about his experiences growing up with a sister affected with ectodermal dysplasias. We were so proud of him when he agreed after being asked by the NFED.

Volunteering at Conference doesn’t have to be a big, time-consuming activity. It can be as simple as sitting at a table and handing packets out at registration, or working at the booth selling t-shirts.  You can volunteer for as little as one hour.  If you want to give more time, you can volunteer to be on a committee. All are great ways to help and even better ways to get to know other people in the organization.

Fundraising is simple too. My wife and I are both teachers so we went to our superintendents and asked if we could do jean days for a month at our schools. Faculty, staff or anyone who works at the school could wear jeans instead of regular school clothes if they donated money every day. In one month, between my wife’s school and mine, we were able to raise about $1,500 last year and $2,300 this year. It was an easy way to raise money and educate people at our schools what the NFED is about and all that they do for people.

So why do we volunteer to help at Conference? Why is my wife, Sue, a Family Liaison for Illinois? Why do we do fundraisers for the NFED? We do it so maybe we can help another family who is feeling lost and doesn’t know where to turn. We do it so they can find the most wonderful organization and people like we did and hopefully change their lives like they did for us.

So, please, the next time you think maybe I should volunteer or try to do a fundraiser (big or small – everything helps), do it. Call Lea at 618-566-6871 or email her or Seth. They will help you put your ideas to work or help you come up with an idea. This is your organization and by helping in any way you can only make it better.

Please complete this form to start volunteering. Lea will be in touch with you.

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4 comments on “We Volunteer So Others Don’t Feel Lost”

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