By Sam Gansebom
My name is Sam Gansebom, and I am the National Foundation for Ectodermal Dysplasias (NFED) Advocacy State Lead for Colorado! I live in Lafayette, Colorado, located between Denver and Boulder.
Neil and I have two daughters, Olivia, 5, and Kira, 3, who has hypohidrotic ectodermal dysplasia (HED). She was clinically diagnosed at 13 months by a genetic specialist. Genetic testing has also confirmed her HED diagnosis.
THE IMPACT OF THE NFED
Since the day of Kira’s diagnosis, the NFED has been an invaluable resource to our family. Immediately leaving the genetic specialist’s office on the day of her clinical diagnosis, we began searching online for as much information as possible. We were relieved to finally have answers to everything that was going on with her, but our family was certainly going through a lot of emotions. We quickly found the NFED site and immediately knew this would be a lifelong resource for us.
One of the most important pieces for us were the family stories. We knew these would be new friends and a new community that we would have in our lives as we navigated this journey. We looked at pictures of the Family Conference and knew that this would be an event we would attend in the future.
The medical resources and insurance toolkits, to name a few, were invaluable from day one. In addition, the NFED was able to provide a list of providers within our state, as well as a list of families who have registered with the NFED. I noticed a family name on both lists – the Keene family.
Within a few days, we scheduled a consultation with Dr. Greg Keene because his son, Grant, also has HED. We wanted to understand their personal story, and what Grant’s dental journey had looked like. Dr. Keene was gracious enough to also offer his wife’s contact information and Jaimee and I met within a few weeks.
I felt an immediate connection with Jaimee because our families and our experiences were now intertwined. She told me about Grant’s story, his diagnosis, what his journey has looked like, and about their Crawfish Boil fundraiser for the NFED that they host every two years.
WHY DO I ADVOCATE?
I felt an immediate desire to get involved and make an impact in any way that I possibly could. I wanted to embrace Kira and everything she was and dedicate myself to making a difference in her life and all ectodermal dysplasias families. Jaimee and I kept in touch over the next year, and as soon as she was starting work for their Crawfish Boil, we reconnected.
I was so humbled by the amount of work and energy that the Keenes put into this event, between the silent auction, the planning, coordinating food, drink and activities for the kids. The Keene’s Crawfish Boil was a major success, raising over $25,000 despite rainy and cold weather!
At about the same time, the NFED was looking for a state lead for the Ensuring Lasting Smiles Act (ELSA) advocacy in Colorado, so I jumped at the opportunity to join the team. Together, Neil, Jaimee and I met with Senator Gardner’s office last May to educate his office on ectodermal dysplasia, and why ELSA was so important.
Kira and I were fortunate enough to receive a travel stipend to join the NFED Advocacy Day on Capitol Hill in Washington D.C. to meet with legislators and educate them on ELSA. This wouldn’t have been possible without fundraisers like the Keenes host.
We will keep fighting the good fight until ELSA becomes law. I will also graciously join Jaimee in her next round of planning for their Crawfish Boil, hopefully taking on a more lead role in making the event an even bigger success. We have been so fortunate to be a part of the NFED community, and I look forward to continuing to make an impact for Kira and all ectodermal dysplasias families.
She is our hero, every day.