Last year at the apraxia conference, we honored CASANA’s founder in a tearful sendoff. Throughout this past year, CASANA went through numerous more transitions, the main one being it’s no longer CASANA but renamed “Apraxia Kids” to reflect, no emphasize, the two most important things to the organization:
Apraxia and Kids.
Another major change was that Kathy Hennessey, long time director of education, also accepted a new position as executive director of a beautiful arts center in Wisconsin.
Change is always hard and I for one think I took it particularly hard. I watched this past year with skeptical yet hopeful eyes as an interim director gave way to the new executive director Angela Grimm. I was pleasantly surprised that she had reached out to me personally to introduce herself and she gave me a chance to tell her my story and why CASANA, now Apraxia Kids, was so important to me. That phone call meant a lot because I was able to tell this woman how myself and so many others in my community had benefited from the organization. I was able to tell her why I had decided to spend countless volunteer hours devoting myself to being a walk coordinator in Denver, and I was able to express that I wanted to make sure Apraxia Kids was still going to be an organization I could stand behind. It’s very important to me that when I get up on that stage and look out to the 400 Denver Walkers, that I still believe in my soul the mission of the non-profit I’m asking them to donate money to.
Facebook and social media was another area I watched closely. The founder and previous executive director Sharon, who is now my friend, literally built the base of the organization through social media. Sharon had a unique way of connecting people in the community and so many parents of newly diagnosed children, like myself, found facebook, posted their fears, and were met with the compassion, love, and advice that only Sharon could give. I wanted to make sure that whomever took over social media knew the importance of the role. During the transition period, David Hammer, Vice President of programs, and Ruth Stoeckel who is a member of the Professional Advisory Committee, both stepped in to make sure parents were welcomed and given the warm and compassionate welcome they needed. Soon, a new employee named Kara Bayer was hired to handle the social media aspects. I watched intently. Though Kara didn’t have a personal connection to apraxia, she made sure to welcome every parent and respond to questions with philosophies reminiscent of Sharon’s comments that were always rooted in evidence-based practice. During apraxia awareness month, Kara did something I had not seen done before. She made a calendar with suggestions on how to celebrate apraxia awareness all month via social media outlets. I absolutely loved the idea and participated! I noticed that those in the community were participating as well. The level of engagement was impressive and when you are trying to make an impact on social media, engagement is how you measure it! Kara has taken the position and ran with it and she’s doing a great job.
This year before the conference, Justin LeWinter, who is the director of fundraising and who had traditionally been the point of contact for all of the walks nationwide, organized a walk coordinator training along with his team. This was the first time walk coordinators had a formal training in an effort to uniform our walks and learn how to make our walks more successful. Connecting the coordinators in this way made our role seem more formal and more important than ever. The walks generate 2/3 of the revenue for Apraxia Kids! 2/3!! Without us, the programs that Apraxia Kids funds and of which I am grateful for and believe in, would not be possible. I was impressed with how much thought was put in the training and at how organized it was. I was also pleasantly surprised by something else, something much bigger.
I was impressed by the old AND many *new* faces of Apraxia of Kids that are the staff.
The entire staff, I felt, had a very real and deep understanding of just how much apraxia impacts the family. They were sensitive, caring, dedicated and passionate. They were all positive and had contagious energy. I am a sensitive one to energy. Energy, positive or negative, spreads. I couldn’t help but feel good about the future of this organization with new blood, new energy, and new enthusiasm like they had. They definitely re-energized me and come August I know I can confidently tell my community we are raising money for the outstanding organization we all found it to be to begin with. Yes, many old faces were missing and their presence, particularly that of Sharon’s was still felt by me very deeply. Sadly though what I realized, the old faces aren’t the future. As I met, talked with, and listened to all the new faces, I smiled because I realized these *new* faces are the future.
I was also able to talk to many *old* faces (I’m not calling any of you old, just need a word for comparison sake!) still around such as Mary Sturm, President of the Board of Directors, and Sue Frieburger, Board Secretary and the person who started the walk 15 years ago. I was able to listen to the stories and the legacies and I realized that though much had changed, the most important thing hadn’t changed at all. Apraxia Kids is still full of dedicated parents and professionals who come together, share stories, and who develop instant friendships from our shared experiences.
There was David Hammer, Vice President of Programs and international apraxia expert who introduced the keynote: 
There was esteemed researcher and clinician Jonathan Preston, who delivered the keynote: 
The next morning there was the panel of national and international apraxia experts that presented many of the various treatment approaches to all the attendees:
Then there were the new wave and faces of “bootcampers” present, who are graduates of the Apraxia Kids intensive training institute. I have so much respect and love for this group of amazing, dedicated and passionate professionals who have made serving kids with CAS and their families a top priority. This group below comprises two of the veteran faces, David Hammer and Ruth Stoeckel, among the faces of up and coming experts around North America, and I say North America because three of them are from Canada!
At one point I looked around at the buzzing open area and I took a deep breath and smiled. Sharon’s decision to step down was based out of selfless love for the non-profit she started. Though I didn’t understand it at first, I understood now. Apraxia Kids is still the organization it was. A group of passionate professionals and experts who come together to network with parents and to arm them with knowledge, community, and power. Though I personally felt Sharon’s loss, I now could be that same hope she had given to me and in turn give back like I always wanted to do. Michelle of Apraxia Mama Bear and Alyson Taylor of Girl With a Funny Accent were there also doing the same thing.
When I got to my hotel room that night, I called Sharon. The words of her friend and Apraxia KIDS president Mary Sturm were ringing in my head. Mary told me that Sharon said she knew she had to step down to advance the organization further; and Mary compared it to that of mother whose child leaves for college. You send them off knowing this is the next step to them becoming independent and successful adults despite the pain in your heart that wants them to stay. You do this because you know it’s the right thing to do, but you still watch with baited breath and an ache in your heart. You watch their every move and cheer them on every step of the way. I thought that analogy was amazing, so that night I told Sharon what Mary had said. I told Sharon I finally understood why she did what she did. I was so mad and sad and basically a hot mess when she told me she was stepping down; however I understood now. I understood because it was unfolding before my eyes.
Before we said goodbye, Sharon left me with these words,
“Hearing this makes me so happy. So this is life, this is us. You pass it on. I love you and all the others who have committed. I know you. I was you, and one day you will meet someone and you will have this mutual admiration and you will know that they are the future.”
Old faces, new faces, and the passing of the torch. The selfless individuals who had been there before were still there giving back like they always had and a new wave stood by their sides ready to continue the mission. I have so much respect and love for the past, and I’m so excited for the future!
The mission has never changed and was never about any one person. It’s about Apraxia and Kids.
Every Child Deserves a Voice.
Let’s see this mission continue to spread!
