I can think of at least a 100 reasons why you should attend the National Foundation for Ectodermal Dysplasias (NFED) Family Conference this summer. The first one is that I would love to either see you again or meet you for the first time in person! But I’m guessing you may want a better reason than meeting me and the NFED staff! So, here are the top five reasons that a trip to St. Louis on July 23-25 is worth it.
1. Find Your People…Because the Internet Can’t Give Hugs
When you come to a Family Conference, you find your FRamily…your support system of friends who become family. You’ll meet about 350 people who are on a similar journey as you.
It’s true that you can find an extraordinary amount of information on the NFED website. And if you’re on Facebook, you may have made friends in our private Facebook groups. And both of those are fantastic resources!
But, they still don’t compare to attending a Family Conference. And they can’t give you a hug when you need one. Of course, hugging is NOT mandatory at a Family Conference. But somehow, it’s exactly what happens spontaneously throughout – because you have found your people!
Old friends hug as they get reacquainted at registration. Little girls who look alike become buddies in Kays’ Kids Camp. Moms console each other when sharing a personal challenge. And then it’s always a hug fest when we depart as the Conference ends and we realize it will be a whole other year till we meet again.
2. Learn From Doctors and Dentists Who Know Ectodermal Dysplasias
Wouldn’t it be nice to spend three days with a team of doctors and dentists who know a lot about ectodermal dysplasias? They won’t just give educational presentations. You can sit with them at dinner and talk. Have a specific question? Schedule a meeting in Ask the Experts. Wondering if you have the right dental treatment plan? Schedule a dental evaluation. These professionals from our Scientific Advisory Council volunteer their time and expertise to be available to help you. And they truly care about NFED families.
And, you will teach them, too! While they do have experience, it’s impossible for anyone to know everything about the 50+ types. Dr. Clayton Butcher, who specializes in internal medicine and pediatrics, says, “We always say families teach us as much, if not more, than we teach them. Even though I wasn’t exposed to ectodermal dysplasias in training or frequently in practice, being here (at Family Conference) is a great opportunity to learn.”
3. Give Your Child A Sense of Belonging
When a child looks different because of a rare disorder, they can feel alone. They may be stared at, questioned, or teased at school. That can hurt their confidence and make them want to hide. But being at Kays’ Kids Camp and Teens Program with others who look like them, everything changes. They see others with similar smiles, hair, or medical needs laughing and having fun. What once felt “different” suddenly feels normal. They don’t have to explain themselves. They feel understood.
Camp doesn’t just give them fun memories from games, entertainers and crafts. It gives them self-acceptance. It gives them courage. It gives them a community. And for a child who maybe spent years feeling different, that sense of belonging can last a lifetime. And it can help their unaffected siblings better understand them, too.
4. Find Reassurance and Hope
A new diagnosis can be scary. You may feel nervous having more questions than answers. Your future may feel like there are so many unknowns. But do you know what we’ve learned from families after 42 Conferences? They tell us that when they left the Family Conference, they felt more assured that “everything was going to be ok.” They appreciated leaving with more knowledge and resources. But, most of all, they left with a true sense of hope that a vibrant, joyful life is ahead because they saw and met others who are thriving at every stage in life. They can exhale.
5. Have Fun
For the adults, conference days are jam packed with educational workshops and speaker panels. Adding to the information overload, you may feel all the feels. It can be a lot – but in a good way!
That’s why the evenings are designed all about fun. The pool party is the epic event at every Family Conference….how can we have an event for some people who can’t sweat in July without one?! You can cool off in the pool. Or, maybe you want to sit pool side with an icy cold drink (it will be July!) and watch all of the little and big kiddos splash and have a great time. Or, it’s the perfect time to chat with new friends and share your stories. You can play outdoor games, too! Whichever you choose, I guarantee you will laugh and have fun!
On Thursday night, get ready for a celebration dinner and ‘80s-themed dance party. We’ll celebrate that our NFED community is now 45 years strong! We’ll reflect on our progress, and recognize some folks who helped make it happen. But, mostly, we will celebrate you and us and all of us together. Break out your leg warmers, shoulder pads, neon colors and flashy accessories if you want to look totally tubular for the party! It will “fer sure” be a ton of fun as we dance the night away.
Are You Ready?!
Take the next step to join us in St. Louis. Sign up today! Keep in mind the fees are cheaper if you register by April 28.
Have a question or comment? Contact us.