To love something with all your heart may also mean you have to let it go: The future of CASANA

By Laura Smith|April 13, 2017|Apraxia, apraxia blog, CASANA, Childhood Apraxia of Speech|

I’ve never been involved with non-profits until recently.  I mean, I had the couple that I liked and donated to and then went about my merry way.  Once I had Ashlynn and met Sharon Gretz, the founder of CASANA, knowing I could never repay her for the kindness and support she gave me, I turned to supporting CASANA 100%.  As a mother to a child with apraxia herself, Sharon automatically had 50% of my trust, and the other 50% was earned very, very quickly.  Sharon cared.  That’s the bottom line.  She has an incredible gift for bringing people together and getting people support. I cannot tell you how many times I thank God he gave this world a Sharon and her son Luke.

That’s why her stepping down announcement was shocking.  She said it was for the good of the non-profit, and she said these changes happen, so we all trusted her like we always have.  We meaning the base.  There is a base of CASANA supporters spread out across North America, and she connected with us on some level. That’s what made her special.  She lives in Pittsburgh but could make these sincere and genuine connections nationwide that made people like me want to give 100% in helping CASANA.

We all tried to take it in stride.  To say we were shocked and devastated was an understatement.  We all had no idea this was coming. We loved Sharon though, legit.  It’s weird to think you can love someone you have only met a couple times, but I guess as I said, that is her gift.

We waited almost with baited breath who the new interim director would be.  Let’s be clear, we all knew no one could replace Sharon.  No one.  It’s like a dad who says no man will ever be good enough for his daughter……that’s the kind of love we have for Sharon.  She’s just that important to us. However, when the interim director was announced there was no mention of apraxia.  No connection to it at all.  If you remember, I told you Sharon had my first 50% trust because of that alone.  The resume was impressive.  This woman knows non-profits, so that’s good…..we guessed.  We all tried to convince ourselves someone who has no connection to apraxia can fill Sharon’s hole, and then we all started to panic.  Silently at first, but then slowly we started whispering to each other.  In tandem, Sharon seemed to be pulling away.  She told people she wasn’t going to be at the apraxia conference or the apraxia walk. Things she had always done in the community now were leaving too.  We all didn’t understand.  Had we burned her out?  Was she done with apraxia once and for all?  How could she seemingly turn her back on us?

One apraxia mom and CASANA supporter told me reading about the new director was like meeting dad’s new girlfriend for the first time.  It’s funny, but unfortunately, there is nothing funny about that feeling.  We all started feeling hurt.  Would this still be the CASANA we once knew?  It felt like the heart was gone now, and with no heart, there isn’t much motivation.

I decided to bring it to Sharon.  I knew she would be hurt but sometimes when you love someone and you value the relationship with them, tough conversations have to happen.  This is true with a spouse, a mom, a sister, or a good friend. I have found that to avoid a tough conversation, in many cases means to avoid the truth.

This post does not need to outline every particular, but what it is meant to do is to let the base out there….our apraxia tribe know….you guys, we’re going to be okay.  Sharon’s heart is not out of apraxia.  In fact, it cares more than I ever thought possible.  Her decision epitomizes the saying, “If you really love something, you have to let it go.” Her decision is like a parent who must let their children fly on their own.  They cannot be successful their entire life under their parent’s watchful eye.  A child is reared to eventually leave and flourish on their own.  Isn’t that what we’re all trying to do with our children with apraxia?  Give them the tools to fly on their own?

Sharon sent me these two articles and if you, like me, had wondered how Sharon could seemingly cut all ties, these explain why.

Founder Syndrome can take down a non-profit

Strategies for Handling Charity Leaders

I didn’t know anything about non-profits before.  I didn’t know founders no matter how well-intentioned have ran their non-profits into the ground.  I didn’t know that even when trying to step away and do what’s right, there is still a risk of running it into the ground.  I just can’t imagine that would happen to CASANA, but that’s the problem and that’s why I’m not the founder.  Sharon did know, and that’s why she had to have the strength to let it go.  She had to dig deep and admit her own shortcomings, and she did this so CASANA would continue.

I should have trusted her like I always had, but I was sad and hurt, and it’s hard to think clearly in those moments.  Emotions take over.   How silly is it to think a woman who started a non-profit and dedicated 17 years of her life to it would just walk away without any doubt, worry, or honestly…agony.

Sharon’s vision has always been big, OBVIOUSLY.  We all love her so much because of her selfless and unending support to all of us and our kids.  Of course then it would only make sense that this decision too was selfless in nature.  To walk away from something you created  from the ground up in the hope that it will grow bigger and help more people takes a depth of character, strength, and humility not many people possess.  It should come as no surprise to us though, her base, that it was the driving force behind the decision.

I want to reaffirm my position as an apraxia advocate and CASANA warrior in spite of the big changes.  We are all working out here tirelessly so that CASANA will grow……and now we have to trust Sharon, as we always have, that this is the way to do it.  I’m happy to say I emailed the new interim director Michele Atkins, and she responded immediately and positively and seemed open to hearing from me.  I would encourage you all to do the same.

Sharon will still always be a driving force in my work on behalf of CASANA.  I will carry her support and love she showed to me and countless others every time I mention the name CASANA.  I ask you all to do the same.  CASANA is still the organization we believe in.  It still has a board of directors and staff that Sharon brought on who are apraxia warriors themselves.  I do admit in my sad moments it felt the heart left, but the heart was bigger than we could even imagine. The heart still beats for CASANA but recognized for it to grow it had to step aside.

I just want to take a minute to list anonymous quotes from the “base” spread throughout the US as to Sharon’s lasting impact on us all.  This list is compiled by not one, but many who she touched throughout North America.  Some were taken from FB comments and some were specifically solicited; however all are sincere and representative of Sharon’s lasting impact.

“A public shout out to an angel in my eyes…..I have learned amazing things from CASANA and it is now part of my soul.”

“Your accomplishments helped me win a proper education for my apraxia child.”

“You changed the world for children who struggle to speak.”

“I feel so blessed to have meet you and received such warmth, love and concern for our family.”

“Sharon thank you for paving the path you have to bring apraxia to the forefront.”

“Thanks a lot for you dedication! You have changed my life and children in Brazil who struggle to speak!”

“What a legacy you have created!”

“So beyond thankful that our paths crossed all those years ago. You have changed my life.”

“My family and I are so incredibly grateful for your vision and passion to help children families and clinicians.”

“CASANA has been an amazing place for me to find a home and friends when I needed them most and you are the reason for that.”

“Thank you. You have given my family and child a roadmap to giving my child a voice. I can’t thank you enough for that.”

“Thank you for EVERYTHING you’ve done to help our kids find their voices! I will be forever grateful that our paths crossed during my son’s apraxia journey. Your knowledge, empathy, and “light at the end of the tunnel” attitude always gave us such hope during times we felt so hopeless.”

“Thanks to your contributions, countless children have found their voices!”

“I always think of you as a pioneer. You have charted a new way of helping families deal with the tremendous impact of apraxia.”

“Thank you so much for choosing to devote your brilliant mind, your determination and your huge, huge heart to making the world a better place for children with apraxia.”

“YOU are one of my personal heroes and you will always be a part of my heart.”

“I trust you enough to let you go.”

“Sharon has been my gravity. Those times in this apraxia journey when I wanted to spin out of control Sharon would reign me in with her calm voice of reason and experience. She has given me direction using a strong enough nudge to get me started without pushing me away nor crushing me with her strength. Mine and my son’s lives have been forever been changed for the better thanks to the force that is Sharon Gretz. Thank you!”

“I wish I could give you a big hug and thank you in person for everything you’ve done, not only for us personally but for everyone. If it wasn’t for CASANA, I don’t know where we’d be. You will truly be missed. I wish you the best of luck and pure happiness in your future endeavors!!”
“How does one find the appropriate words to thank someone who has impacted their life on so many levels? Sharon, my life and my son’s life changed from one click on the computer and when I first met you I felt like I was “home”. You have been my anchor for 5 years and I would never be able to advocate for my son the way I do if it weren’t for you. Thank you for being such a wonderful person to have along side of our family during this journey”
“I know I’ve told you this a thousand times, but it will never be enough. Thank you, from the bottom of my heart, for all you have done for me and my family. I never knew how much one person could have an impact in so many lives until I met you. You truly are the Mother Teresa of Apraxia.”

“When I was floundering under water, you pulled me and countless others up for breath time, and time, and time again.  I will never for the rest of my life forget that kindness you showed me, and I am forever thankful God made a Sharon and a Luke for this world.”


To honor Sharon now is to honor her life’s work and achievement that has helped all of OUR kids and countless others, and that is to continue to support CASANA, because in the end what matters is that EVERY CHILD DESERVES A VOICE.




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