09 May Creating Community Connections – The Walk for Apraxia
Aly Taylor is an adult living with CAS and also serves on the Apraxia Kids Board. Aly started her journey with Apraxia Kids 11 years ago and was inspired to take on a larger role in Apraxia Kids and raising awareness after attending her first Walk for Apraxia.
How did you first find Apraxia Kids? How old were you?
I first discovered Apraxia Kids back in 2014, when it was still known as CASANA. I was around 20 or 21 years old at the time.
What was your experience like when you first met someone with CAS?
Maybe I came in a little too confident—but being 21 years old and having never met another person diagnosed with Apraxia really bothered me. For my 21st birthday, a group of amazing college friends and I decided to host an Apraxia Walk in Atlanta, Georgia, as a way to give back and create the connection I was missing. We didn’t have much to work with—we got a free park permit, gathered used crayons and recycled posters from around campus, and somehow raised $25,000 and organized over 200 t-shirts out of a tiny apartment. The first person I ever met with Apraxia was on the day of that walk. His name was Aiden, he was ~7 years old at the time, he loved Spider Man, and meeting him is what inspired me to keep going and continue giving back.
Why did you decide to join the Apraxia Kids Board?
After that first walk, I continued volunteering at events like walks and restaurant fundraisers each year with Apraxia Kids. In 2019, I officially joined the Board of Directors—as the youngest board member and the only one diagnosed with Apraxia. I joined because I wanted to represent the voices of those becoming young adults—those who had overcome or were still navigating life with Apraxia. In short, I joined to keep advocating alongside others who are just as passionate about this cause.
As an adult with Apraxia, what would you say would be different for you/your family if you were just getting diagnosed now?
One word: community. Looking back at the conferences, the walks, even the social media posts—I think having a true sense of community, and the tools to actually find that community, would have made a world of difference for me and my family. When I was first diagnosed in the late ’90s, my parents had almost nothing to go on. Their only resources came from a local college speech department and two articles shared on a Listserv. Now, there are countless groups, newsletters, research studies, and an interconnected community of professionals, parents, and individuals who’ve been diagnosed. It’s incredible how far we’ve come.
What connections have you made through Apraxia Kids?
Honestly, I don’t even know where to begin. Through Apraxia Kids, I’ve met more individuals with Apraxia than I ever thought possible. I’m now close friends with speech and occupational therapists—which my younger self would have never believed—and my family has built lasting friendships with other families in this community. The community I didn’t have as a kid, I’ve been able to help build, grow, and be part of as an adult which is truly a dream come true.
Anything else you’d like to add / share?
I’m excited about what’s ahead—not just for myself, but for the future of Apraxia advocacy. My experience growing up with Apraxia is very different from what kids experience today, and that’s a beautiful thing. But even as things evolve, the need for awareness, access, and connection will always remain. I hope to continue supporting the next generation of families and children so they never have to feel alone in this journey.
Aly Taylor is an adult living with CAS and also serves on the Apraxia Kids Board. Aly started her journey with Apraxia Kids 11 years ago and was inspired to take on a larger role in Apraxia Kids and raising awareness after attending her first Walk for Apraxia.
How did you first find Apraxia Kids? How old were you?
I first discovered Apraxia Kids back in 2014, when it was still known as CASANA. I was around 20 or 21 years old at the time.
What was your experience like when you first met someone with CAS?
Maybe I came in a little too confident—but being 21 years old and having never met another person diagnosed with Apraxia really bothered me. For my 21st birthday, a group of amazing college friends and I decided to host an Apraxia Walk in Atlanta, Georgia, as a way to give back and create the connection I was missing. We didn’t have much to work with—we got a free park permit, gathered used crayons and recycled posters from around campus, and somehow raised $25,000 and organized over 200 t-shirts out of a tiny apartment. The first person I ever met with Apraxia was on the day of that walk. His name was Aiden, he was ~7 years old at the time, he loved Spider Man, and meeting him is what inspired me to keep going and continue giving back.
Why did you decide to join the Apraxia Kids Board?
After that first walk, I continued volunteering at events like walks and restaurant fundraisers each year with Apraxia Kids. In 2019, I officially joined the Board of Directors—as the youngest board member and the only one diagnosed with Apraxia. I joined because I wanted to represent the voices of those becoming young adults—those who had overcome or were still navigating life with Apraxia. In short, I joined to keep advocating alongside others who are just as passionate about this cause.
As an adult with Apraxia, what would you say would be different for you/your family if you were just getting diagnosed now?
One word: community. Looking back at the conferences, the walks, even the social media posts—I think having a true sense of community, and the tools to actually find that community, would have made a world of difference for me and my family. When I was first diagnosed in the late ’90s, my parents had almost nothing to go on. Their only resources came from a local college speech department and two articles shared on a Listserv. Now, there are countless groups, newsletters, research studies, and an interconnected community of professionals, parents, and individuals who’ve been diagnosed. It’s incredible how far we’ve come.
What connections have you made through Apraxia Kids?
Honestly, I don’t even know where to begin. Through Apraxia Kids, I’ve met more individuals with Apraxia than I ever thought possible. I’m now close friends with speech and occupational therapists—which my younger self would have never believed—and my family has built lasting friendships with other families in this community. The community I didn’t have as a kid, I’ve been able to help build, grow, and be part of as an adult which is truly a dream come true.
Anything else you’d like to add / share?
I’m excited about what’s ahead—not just for myself, but for the future of Apraxia advocacy. My experience growing up with Apraxia is very different from what kids experience today, and that’s a beautiful thing. But even as things evolve, the need for awareness, access, and connection will always remain. I hope to continue supporting the next generation of families and children so they never have to feel alone in this journey.
Credentials:
Hours of Operation:
Treatment locations:
Address:
,
Phone:
Email:
Overall Treatment Approach:
Percent of CAS cases:
Parent Involvement:
Community Involvement:
Professional consultation/collaboration:
Min Age Treated:
Max Age Treated:
Insurance Accepted:
