The ASF Family Conference
The Angelman Syndrome Foundation Family Conference has come and gone. Without a doubt, this event has been the high point of our journey so far. All of the love, compassion, and understanding shown throughout the conference, reiterated the fact that every single family is in this struggle together.
What set the tone for me, was the day before the conference began. The research symposium started before the family conference. Our family got to the resort a day early. So we decided to wander down to the conference center to see if we could run into any Angelman families as well as check in a day early for the conference.
The very first person who greeted us in the conference center area was Amanda Moore, the CEO of the Angelman Syndrome Foundation. Amanda is a force of nature. I’m not sure how she does it. She introduced herself and asked for our names. The rest of the conference, she did not forget who we were. Amanda was like this with every single family. Not only does she get things done behind the scenes, she has the compassion and emotional intelligence to make every single person she comes across feel special.
Not only did we meet Amanda, she introduced us to Maddie’s doctor in Denver. We were explaining to Amanda that we were going to Denver in November to the Angelman specialty clinic. She immediately pulled out her phone and sent a text message to Dr Duis who was in the symposium. Dr Duis dropped whatever she was doing and came out into the hallway to meet with us.
This was the spirit of the conference. Whomever we ran across, whatever questions we had, there was someone there for us. Whether it was a scientist, a doctor, or another family. One striking thing about this conference was the belief that there is going to be a cure within our lifetime. We heard this over and over again. With the cutting edge research and dollars pouring into our community, a cure within our lifetime seems feasible.
The reason there’s such hope is because of the families that have come before us. The Angelman Syndrome Foundation was founded 30 years ago by a group of families. Every generation since, has spread awareness, raised money, and participated in clinical trials. We are so grateful for the families that have come before us. When it is our turn, we will do the same for the families that come after us.
Over and over again we heard from families of older children, that this is the best time to receive a diagnosis. That these resources that are available to us now, were not available 20, 30, 40 years ago. These families of older children are the reason we have the resources that we have today. Their struggles and perseverance paved the way to today. It’s still not an easy road, but it’s less bumpy because of them.
Not only did their struggles lead to the resources we have now, many of them were at the conference to befriend our family. I never like to share anyone’s name on this blog that hasn’t given me permission to. So I won’t call anyone out specifically. However there were families with older children from Wisconsin, Texas, Michigan, and I’m probably missing a couple more states that took the time out to get to know Nicole and I. They passed on some nuggets of wisdom to us, but most of all they were a source of laughter and friendship.
Not only did we meet families that had older children, we met families that have an angel close to Maddie’s age. It was so nice to be in a bubble of families that understood the struggles that we are going through. There’s a lot of places around the country that have an open door for us, and I hope that these families know our home is open to them as well.
I will sprinkle in the things that we learned at the conference as the weeks go on. However, I wanted to capture the spirit of the conference. The one session that stuck out to me, was the final session we attended. This session was on mental health of parents and family members.
The person who lead this session, is named Debi. I have asked for permission to share a snippet of her story. Debi took the time to fly down to Austin from Wisconsin. Her angel passed away. Not only did her angel pass away, her angel died in a murder-suicide at the hands of her husband. His reasoning was that the rest of the family would be better off without the burden of an Angelman diagnosis.
I highlight this story because it encapsulates the Angelman Syndrome Community. This diagnosis is hard on a family, no matter how strong your family dynamic is. Through her grief, Debi came to share her story so that others would have the conversation around the mental health portion of this diagnosis. So often we as parents put the needs of our angel well before our own needs. So often we ignore our feelings and stuff them down deep to attend to the needs of our angel. Thank you so much Debi, for opening up this conversation at the conference. This session had the most impact on me.
Through the tears, laughter, and numerous parents telling their angel “gentle”, the conference was a success in my eyes. It was emotional leaving the conference, we were in an Angelman bubble. There wasn’t a topic that wasn’t taboo, and there wasn’t a family that didn’t understand our struggle. We cannot wait for the next one.
-Written by Adam Birchmeier
