By Sue Kluzek

I don’t know about you, but I am getting very excited about our NFED Family Conference this summer! It’s an exciting time for all of us. We (the NFED) are celebrating our 35th anniversary. We have new programming and a new format for some of the conference. It’s going to be great!

Here’s our Goltz family from the Colorado Family Conference last year. Christina is wearing red in the middle.
Jim, Sue, Jimmy and Christina Kluzek

This year will mark the 10th year for us, the Kluzek Family, since we became actively involved with the NFED and the Family Conference. It’s always so much fun catching up with old friends every year we attend.

We have all watched our children grow up together while we as parents stay perpetually young! LOL. It’s amazing to watch all of these children grow up to become wonderful, articulate young adults who can advocate for themselves and their siblings. It makes me so proud of our Family Conferences because they have played a part in making this happen.

I can still remember coming to our first conference in St. Louis in 2006. Jim and I were scared, apprehensive, nervous, and excited. We were finally going to meet people who had the same issues as our family. Well, we sure did!

One of the first families we met was the Olsen family. Our daughters, Christina and Jade were the same age and both had Goltz syndrome. This was an amazing moment for our family.

We discovered that our daughter was not the only one affected by Goltz syndrome and we made lifelong friends. We discovered that we were not alone.  We met many other families that year but since it was our first conference, it was all a blur.

The most exciting conference we ever attended was in Houston in 2013. We had the opportunity to gather with at least 17 other families affected by Goltz syndrome. This was truly amazing. What a difference from our first conference when there was only one other family.

Jimmy Kluzek (back row, third from right) has  made his own group of friends, too, at Conferences.

Over the years, we have gotten to know many of these families better and now I feel we are all one big NFED family. Both of my children have made forever friends through the NFED Family Conference.

My only regret I have from our first conference was, we didn’t take any pictures. We never even thought to bring our camera and this was before we owned a smart phone. Thank goodness for Jodi and her trusty camera!

Since then, we have attended conference almost every year. We have met so many wonderful families and made a ton of friends. Over the years, we have gotten to know the amazing NFED staff and all the fabulous doctors and healthcare providers. We consider all of them part of our family now. We are so blessed to have so many great people in our lives – all because of Family Conference.

Jim Kluzek prepares Family Conference packets.

Through the years, Jim and I have become more involved with the NFED. We have had various fundraisers at our schools and hosted a regional conference in Chicago.

I have been on two previous Family Conference committees, and even our son, Jimmy, has been on a family panel at conference. Our family wants to give back to the NFED and help other families, too. We want all new families to find the same kinship and comfort we found.

I couldn’t have been more honored and excited when I was asked to chair the 2016 conference. I want to make a positive impact on my fellow attendees. I hope we deliver the programming that all the families are looking for and the social opportunities for the parents and kids to connect with each other.

Our Family Conference Content Committee (Kelley, Rachel Buerman, Kris Steele, Dr. Tim Fete, and I) spent many evenings discussing the numerous things our families have requested for conference topics. I believe we developed an interesting and comprehensive program.

Then, our Family Conference Planning Committee was formed and together, we are making the magic happen! First, Lisa Jonak found our hotel in Chesterfield. Then, we have Kristin Matus-Kelso planning the teen activities, Bethany Richter planning the kids’ activities, and Kris and Lindsey developing the marketing plan.

Jean and Jenny are working on endless details.  I am working with the childcare and bus companies.  Jim is assisting with hotel meals and logistics.  And of course,

Christina Kluzek (second from left) enjoys meeting other girls with Goltz syndrome each year at the Conference.

our fearless leader, Kelley, is guiding us through the whole process.

So, with everyone’s hard work, this is going to be an amazing conference! I hope you can all join us this summer and be a part of this wonderful experience. It’s going to be fun and informative for all.

I can’t wait to see all the veteran families and reconnect. Most of all, I am looking forward to meeting all the new faces joining us this year. It will be so nice to welcome them into the fold and see our NFED family grow. I really hope you can “Meet Us in St. Louis!”



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