Empower Elise: Help Her Meet Her Tribe

Hi everyone. As I've disclosed recently, Elise has AEC Syndrome, a very rare genetic disorder. It falls under the umbrella diagnosis of Ectodermal Dysplasia (ED). The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders. In fact, it was an NFED article about AEC Syndrome that I stumbled upon before her diagnosis, and I instantly knew.

NFED holds an annual conference for those affected by ED and their families. My goal is to get us there this year. As Elise gets older, she is realizing her differences and that others are not always kind. The experience of being around others just like her can only serve to empower her, and I really want to give that to her. For the first time, she’ll see that she’s not alone—that there’s a whole community out there just like her.

There is also a wealth of knowledge waiting there for me as I'll get to speak directly with experts on her disorder and gain better insight into her condition. The experience will also be really important for her brother Gideon, too. I am hopefully that he will grow in empathy as he better understands her world.

The kids have never been on an airplane before, so this will be their first plane ride. The conference this year is in Minneapolis, MN - a city I have a soft spot for. I lived there for a time and worked on the rebuilding of the I-35W bridge after its collapse. Minneapolis is also one of the first places the Swedes settled upon their arrival in the US, and it is rich in Swedish history, which I'm excited to show the kids. Minneapolis is also the city where I became a cheese head ❤️

The conference is this summer, and here's a breakdown of my estimated expenses:

Flights for 3 - $1107

Bags - $70

Airport parking - $84

Hotel - $426

Rental car - $382

Total - $2096

I have been offered a scholarship from NFED covering the conference fees of $465. I have until Monday, April 28, 2025 to accept.