by Rachel Buerman

Every year, we pack up the family and journey to the NFED Family Conference.  We are not

IMG_2567
The Buerman Family

natural born travelers. In fact, when it comes to travel we might just be the next National Lampoons movie cast.

Despite our chaotic travel skills, one thing is certain, the NFED Conference is always worth the journey.

Our first Family Conference was in 2010 in Colorado.  For the first time, we met other individuals with the same syndrome as our daughter and their families. The Conference went by so fast. 

Due to our work schedules, we planned on leaving early the last day of the Conference so we could make the 15-hour drive home.  The Conference was so incredible that we decided we could make the drive with less rest than we originally planned. 

We had to use those last hours to say goodbye to all our new friends, so we skipped the planned naps. The trip went well until we were 14 miles from home and exhaustion hit us both so intensely that we had to pull over and take a nap in the truck.

IMG_4870
Jordan is affected by  Goltz syndrome.

In 2012, we set out to visit our NFED family and spend some time with Mickey and Minnie at Disney in Florida.  During the early part of the trip, we managed to have one of our cell phones borrowed (aka stolen).

The local police seemed to be intrigued by the tracking software we had available and tried to get our phone back but had no luck.  So down one cell phone we went to the Family Conference.

While at the Conference, Jordan and I were going down an escalator to meet some of the NFED families and we managed to fall. To this day, Jordan is still hesitant to get on an escalator.  At that very Conference, a conversation about Goltz syndrome sparked interest that turned into a research project that was published in the American Journal of Medical Genetics.

In 2013, the NFED Family Conference was in Texas.  The discussion that turned into research during the 2012 Conference had materialized into the largest gathering of individuals affected by Goltz syndrome ever and the first research project for Goltz syndrome in several decades.  The families even got to meet the actual Doctor Goltz!

Out of nowhere, my husband, Chris asks if Walgreens in Texas had walk-in clinics.  Over a matter of hours his hand swelled to twice its size and was burning and very painful.  While the girls and I went to the research events, Chris took the hotel shuttle to find the closest Walgreens.  The shuttle suddenly came to a stop and the driver pointed out the general direction of the Walgreens but refused to go the extra distance.  Chris had to walk the rest of the way.

By the time he got there, the clinic was closed. Then his cell phone died.

IMG_9413
Attending Conference is a family affair.

He was unable to contact the shuttle to pick him up and got lost.  Eventually, he found his way back to the hotel where the doctors attending the Conference were able to help him out.  It ended up being infected from a scratch from our new cat that Chris begrudgingly allowed our oldest daughter to have before leaving for the Conference.

From the moment we walked into our first Family Conference, we have gained support and knowledge unparalleled by any other source.  We have participated in research that educates the very doctors we go to for Jordan.

We have grown every year as a family and through our adventures, the NFED Conference has become more than an annual gathering, it has become our family reunion.

More posts you may be interested in:

 

4 comments on “NFED Family Conference: Our Family Reunion”

  1. 1
    Things to do in Chesterfield | National Foundation for Ectodermal Dysplasias on July 8, 2016

    […] NFED Family Conference: Our Family Reunion […]

  2. 2
    Taking Ectodermal Dysplasias to the Hill | National Foundation for Ectodermal Dysplasias on July 25, 2016

    […] NFED Family Conference: Our Family Reunion […]

  3. 3
    We Are Flying High! | National Foundation for Ectodermal Dysplasias on August 5, 2016

    […] NFED Family Conference: Our Family Reunion […]

  4. 4
    We Volunteer So Others Don’t Feel Lost | National Foundation for Ectodermal Dysplasias on August 16, 2016

    […] NFED Family Conference: Our Family Reunion […]

Leave a Reply

Your email address will not be published.