Nothing Can Replace the Human Connections and Interactions

By Kristin Matus-Kelso

I first attended the NFED National Family Conference in 2006 when my youngest daughter, Ally, who is affected with EEC syndrome was just 1 1/2 years old.  I remember questioning myself that year as to whether I should attend, was this really “necessary” since she was so young and wouldn’t remember it anyway, and would I really learn anything more about her condition beyond what I could find online or in printed materials from the NFED?  Despite my apprehensions, I decided to attend.  I guess my desire to travel to meet the people (NFED staff) with whom I’d spoken to on the phone and to possibly connect with other families who had similarly affected children “won out” over the questions that had been going through my head.  The conference did not disappoint.  In fact, it exceeded any and ALL of my expectations!  My family has attended every conference since then (except 2007 due to medical treatments at the time) and I have every intention to faithfully attend every Family Conference as long as it’s possible for us to get there.

So, why do I speak about Family Conference attendance with such conviction?  It’s the people.  P-E-O-P-L-E.  There is nothing that can replace the human connections and interactions that you experience at conference.  I can guarantee that you WILL meet someone who either looks like you or your child, has walked down the same road of medical treatments, has encountered the same school or sports challenges, that you can connect with because of ectodermal dysplasia.  In a world where this condition affects 7 out of every 10,000 individuals – we are no longer the minority, but the majority at Family Conference.  There are no other means technologically or otherwise that can replace the face-to-face conversations, sharing of joys and triumphs, lamenting of challenges, and possibly shedding tears with someone who “gets it” that come from being together at the conference.

In 2006, we met the Huxman family, who at that time, had one son affected by EEC syndrome.  We met the night of the 25th Anniversary Gala and spend the next four days sharing, laughing, and connecting with one another.  Our families blended together seamlessly and everyone became “mom”, “dad”, and “grandma” to one another’s kids.  Over the past six years, we have planned our family’s summer vacations with the Huxmans in conjunction with the Family Conference location.  Without having attended that Family Conference in 2006, the paths of my family from Virginia and the Huxmans from Kansas never would have crossed.  While my daughter’s condition is something I would have never wished for, I am grateful that because of her, I have met wonderful people through the NFED and at the Family Conference that have touched my life more than I could have ever hoped.  One of my mother’s favorite quotes is by Edwin Markham which says, “There is a destiny that makes us brothers, No one goes his way alone; All that we send into the lives of others, Comes back into our own.”  Whether ectodermal dysplasia is your “destiny” or something that you’re just coming to terms with, the Family Conference will assuredly reinforce that none of us goes his way alone in this journey.

Hope to see you in Orlando this week!

We Were NOT Treated as Just a Number…We Were Treated as Valued Individuals.

By DeAnn Huxman

As I anticipate the 2012 National Foundation for Ectodermal Dysplasias National Family Conference in Florida, I’m filled with excitement for the time together with this group, our other Family.  My family attended our first national conference in Kansas City in 2005.  We had been interested in attending previous years, but were concerned about the overall expense.  In 2005, it was within driving distance and we decided it was time to go.

As I was anticipating the event, I thought of the numerous “national” events I’d gone to and the number of people there.  I still remember the thoughts and feelings I had as conference was approaching:

• “it’s a national conference so we’ll just be a number in a huge group”
• “hopefully we may learn a thing or two about EEC to feel more educated
• “maybe our son, Tyler, will meet someone else his age with EEC”.

I almost tear up as I think back to approaching the registration table that first day and hearing, “Oh, you must be the Huxman family.”  I looked to see if we had our names anywhere on our clothing and we didn’t.  These people working for this “national organization” knew who we were before we even introduced ourselves, because they cared enough to take note of the information we’d provided them about our family.  At that moment, I knew there was something special about the NFED and staff.  I felt it throughout the whole conference and knew that this was going to become an “every year” event for our family.  We learned so much that first year about EEC, ectodermal dysplasias, and felt a connection with the organization and staff.  We were NOT treated as just a number amongst thousands; we were treated as valued individuals.

That first conference, Tyler did not have a chance to meet another child his age with EEC.  He did meet two incredible role models with EEC that both happened to be over the age of 50, Jack and Norma.  Looking back, it may have been a true blessing that we were able to see two examples of how fulfilling life can be.  Thanks Jack and Norma, for setting an incredible example for others to witness and follow.

Our second conference, in 2006, is where Tyler was able to meet others his age and younger with EEC and other ectodermal dysplasias.  He now refers to his “best friends” that he looks forward to spending 3-4 days with each year at conference.

The same is true for us as parents, we love going to conference each year and reuniting with our NFED friends.  We usually go a few days before or stay longer after to spend more time together.  The connections, relationships, and lifelong friendships we’ve made at conference have had a very positive impact on our entire family, not just those affected by ectodermal dysplasias.  In a sense, travelling to conference each year is like attending a “family gathering”.  Florida this year will be our 8^th conference in a row.

As a family, we’ve made a decision to incorporate our vacations with conference.  This way we can all benefit from the connections we’ve made through the NFED as well as enjoy family time together in different parts of the US each year.  Each year, the goodbyes at the end of conference are very difficult, but as a dear NFED friend of mine often says, “Don’t cry because it’s over, smile because it happened.”  The memories we make each year keep us going until the next year when we’ll see everyone again.  Each year I look forward to going back and meeting new families and making new connections.

Hope to see you in Florida.

Family Conference is sort of like a Wedding.

By Jack Kriz

Hello out there! The 2012 NFED Family Conference is on its way this July in Orlando Florida, Yes!! as in Walt Disney World! I am Sooooo EXCITED!!! Seeing Minnie, Mickie, and Goofy (my fav) will be cool, so my 8 year old self says, but really, I am most excited to once again be with my NFED family. That’s right, the family I was born into way back in 1952, yet never met until the Family Conference of 2002 in Salt Lake City, fifty years later. From what I hear coming from the folks planning this year’s exciting conference, there will be all the things happening that have made previous conferences memorable for so many, as well as some new events that should pique your interest as well. Sort a like, well, a wedding, some things old, some things new, some things borrowed, and some things blue….but you don’t have to bring presents or listen to the “Here Comes the Bride”….more like “You’ve Got a Friend in Me”!

Things blue will be there such as the bright blue Florida sky and the blue hues of the NFED logo. Both will be quite visible throughout the conference. Borrowed? The expertise of the many professional researchers and medical practitioners that will be there to conduct research and consultations. Borrowed too, is the comradery and good will of everyone attending, to be returned the next time and place you see them. As for those new things, there is a bundle. There will be a Princess and Pirates Party for the kids during the clinical research session. New too, this year, will be Buddy Program that will pair first time attendees with veterans, to give them a hand at this new adventure of the NFED Family Conference! Other fresh activities include an Extended Family session and an emphasis on Young Adults. As for some things old? How about the old friends you’ll get to re-connect with, right where you left off last time? Don’t forget the wonderful NFED staff (not that they are old, mind you!) that every year puts together a conference better than the last!

 I certainly look forward to meeting each and everyone of you there, new comer and old timer alike. Look for me, I’m the bald almost 60 year old with a smile of happiness from year to year, I mean, ear to ear, ready to give you a high three! Now come on, let’s show Mickie, Minnie, and the gang how to have a good time!

Conference Means Knowing My Son is Not Alone

by Jennifer Hagerty

With the National Family Conference fast approaching, I find myself reflecting and thinking about how much fun it would be to attend. Joshua is almost four years old and already knows that he has ectodermal dysplasia/AEC syndrome. He does not quite understand it but he knows it makes strangers gawk, point, whisper, and ask questions. Oh and lots of medical appointments!

Going to conference would mean a chance for him to feel like he is not alone. Having the chance to build new friendships and strengthen ones made online and over the phone with people who live, face, and overcome the same challenges we do.

We have been fundraising like crazy so we can afford our airline tickets. We started a www.chipin.com page, we have sent letters to family and friends asking for donations instead of holiday or birthday gifts, and have even scheduled a Pampered Chef Party where percent of the purchases will be donated to our travel costs. We are one of the lucky families who were awarded scholarship to attend making it a lot easier to achieve our goal.

I have a feeling that this may just be the year we get to attend!! We have got our fingers crossed and hope to be meeting and seeing everyone in July at conference as we find the magic inside all of us!

A Sense of Belonging

By Lindsey James

 
Last year, my son, my sister and I attended our very first NFED Family Conference and what an incredible experience it was! I had many reasons for wanting to attend – I wanted to go and absorb as much information about HED as I possibly could. I also wanted my son to meet others like himself and make him aware that he is not alone. The conference was everything I had hoped for and so much more -  I was not prepared for it to be such an emotional experience. Meeting other NFED families seemed much more like becoming reacquainted with long lost cousins. We didn’t really know each other, but we weren’t exactly strangers and in just a matter of minutes it seemed as though we’d known each other forever.

For me, there is a great sense of family at the conference… a sense of belonging. Keegan also made a few new friends who he still talks about and loves looking at the photos that we took of them together. He also talks about a few of the young adults he met who made a big impression on him. For him to still be talking about the conference and the people he met nearly a year later, there’s no question that he felt the same sense of comfort and belonging. We can’t wait to go back and reconnect with everyone we met last year and make new friends as well!