Educate family, friends and community about Dup15q syndrome.

Today, there are almost 1,000 families from around the world affiliated with Dup15q Alliance. Families and individuals with dup15q come from a wide range of backgrounds and are dealing with a variety of day-to-day issues.

This is our Story.

Our son, Jack, had his first of what would become many seizures on January 23rd, 2023. In that moment we had no clue there was something going on with Jack at a genetic level. With some medical intervention we fought to get Jack's seizures under control, to no avail. Our neurological team began to question if there was a genetic component to this newly diagnosed epilepsy. After conferring with a genetic counselor we found out that our sweet boy had a 15th chromosome duplication also known as Dup15q. Dup15q is the leading cause for the type of epilepsy (Infantile Spasms) that Jack was experiencing.

We were devastated by this news, not knowing what this meant for us or for Jack. In our despair we were introduced to the Dup15q Alliance. From the moment we met, the Dup15q Alliance wrapped us up in love and understanding. We were given access to a plethora of information and education on our son's diagnosis. We were immediately connected with people who "get it". It was as if someone had thrown us a life raft during the most treacherous storm of our lives.

From this point on we were in the fold and in the know. The Dup15q Alliance helped us to understand the challenges Jack may face while also providing support on how to deliver the best possible quality of life. As Jack struggled with his epilepsy and global development delay, we were constantly being checked on and taken care of by Dup15q Alliance professionals and other families of children with Dup15q. The Dup15q Alliance then afforded us the opportunity to go to their Believe in Nashville conference in July 2023. This is where we came face to face with other "Super Dupers" just like our Jack. Not only that, but we got to speak with their parents and caregivers about their own experiences. If that all wasn't enough, we were put face to face with the leading specialists for Dup15q. We were in the room where decisions are made. We were put in a position to be agents of change for our boy and this Dup15q community.

This is a debt we will never be done repaying. When you feel so alone as if your are drowning, you will never forget the people who throw you your first life raft. You will never be able to fully articulate the peace you feel hugging someone who knows the road you're on because they themselves are on it too.

As Jack continues to grapple with the ins and outs of how Dup15q effects him, we are empowered to give back. Please join us in honoring Jack and every person with a Dup15q diagnosis at Harvey's Garden in Syracuse NY, February 12th, 2024.