2024 ASF Family Conference
The 2024 ASF Family Conference was a significantly different experience for our family. I wrote about our first ASF Family Conference two years ago. The excitement we felt going into the last conference was replaced by apprehension this time around. This is for a good reason; our Angelman child is no longer with us.
The last conference made such an impact on our family. We saw individuals with Angelman Syndrome of all ages, of all abilities, and we leaned on the knowledge of their parents to help make our daughter’s life better. That is why when Maddie passed, we asked that some of the money donated to the foundation be used to help families get to this year’s ASF Family Conference.
In total there were 200 individuals with Angelman Sydrome at this year’s conference and 100 of those individuals had some form of support from the foundation to get to Sandusky. There are people reading this, that have no connection to the Angelman Syndrome community execpt through Maddie. If that is you, just know you have touched the lives of people you may never meet.
Our apprehension was immediately met with the love of the Angelman community. When Nicole and I were heading down to registration, we reunited with some of the families that made the last conference so special. We felt the magic that we experienced the last time.
However, this conference was different. There was no reason for Nicole and I to attend the breakout sessions. We did take our niece to this year’s conference, and she had a blast at all of the different activities that the foundation put on for the siblings.
The crowning moment of the whole conference was the Glow Circus Family Reception. It was great to see a room full of families enjoying themselves. The dance floor was packed and I even got to dance with my number one girl, Tatyana.
The conference did have a negative effect. Seeing all of your Angelman children, made me wish mine was there to share in the fun. One of the biggest things with the conference is meeting new families, the easiest way to do that is to have a child going through the same things. We’ve been out of the day to day of caring for an individual with Angelman Syndrome for 11 months.
On Thursday afternoon, I was emotionally drained. I sat in my hotel room and had a good cry. I miss Maddie each and every single day. Those who have met her, know what a bright light she was. Those of you who haven’t met her, I wish you had. She was simply the best.
I don’t know if we will be at the next family conference. In our hearts we want to be there, but grief is a fickle beast. We will continue to raise funds for the foundation, and we will continue to ask that some of those funds are directed towards scholarships to get Angelman families to the conference. Our absence will not mean we have forgotten about any of you. We love each and every single one of you, even if we may never meet you. If we are at the next conference, come say hello. You might not be able to meet Maddie, but Maddie’s younger sibling will be here by then. I hope he or she carries the same light and kindness our daughter did.
-Written by Adam Birchmeier
