Anyone can start a support group... 

The history of CHERAB Foundation, and other groups

The first email is from Kathryn Rickard, who had the only support group for apraxia in NJ when my son Tanner was first diagnosed with apraxia when he was about 2.10 years old.  Only problem is that a few weeks after I found out about this support group for apraxia, it was "dissolving."  

I remember saying to Lauren Zimet, Tanner's Early Intervention Speech Therapist, "Oh great, my son is diagnosed with this rare disorder and the only group in the entire state of NJ dissolves a week later!"  I wrongly believed apraxia was rare since what was at the time the largest online international list for apraxia only had about 1,500 members.  Through my involvement in the challenged community, I met the founder of the Sarcoidosis Foundation, Sandra Conroy.  (amazing lady & story) Sarcoidosis is rare, but within 3 years Sandra had over 30,000 patients on her registry.  

Thanks to the encouragement of both Kathryn Rickard, who ran the support group that dissolved, and Lauren Zimet, Tanner's Early Intervention therapist, the first nonprofit, the Children's Apraxia Network support group was started.  It wasn't that overwhelming, and I didn't feel alone since I had the support.  Lauren even helped me get the room and the speaker for our first meeting from the Children's Specialized Hospital.  However since I was looking for friends for my son Tanner, I really was happy when a month later I met Sue Kanarek, who had a little boy just (mis)diagnosed with apraxia.  Two months after that, when Tanner started Early Intervention through the school, I met Lynette Pearson, who had a little boy with "dyspraxia, not apraxia" (she found out they are the same) who asked if she could help with our support group in any way.  

Sue had a friend who was a lawyer who said she can make us a nonprofit, so the three of us signed the papers to become a nonprofit.  Believing, at that time,  these were the only two people in my area who had children with apraxia, I was thrilled we could all work together while our children with apraxia played together...and that did happen, for about 5 months.  After that, the two moms who I believed were the "only ones in my area who have children with apraxia" were gone.  The one found out her son was misdiagnosed with apraxia-the other one just quit.  I now advise people starting organizations to give yourself a few months to know people before you decide who will do what position so you don't end up in situations like that!

Even though I was now alone running the first nonprofit, our group size "Qua-zippled," and I was slightly overwhelmed.  For that reason, I was thankful that professionals Cheryl Johnson, Lori Roth, Dr. Marilyn Agin, and other wonderful parents and professionals got involved and helped us to grow and expand even more so that we were able to help so many of you!  

Since then, because of our growth, I formed a partnership with Dr. Marilyn Agin, and we are excited to announce the following:

 We started a new nonprofit foundation called CHERAB Foundation Inc.  which stands for 

Communication Help Education Research  Apraxia Base   Foundation  

We realized the need for a nonprofit that was able to outreach anywhere in the world, and that could provide funding for a broader base of medical research and education projects that promote healthy language development, with a focus on verbal apraxia in children, and Early Intervention.  Our meetings/websites and email list will be held the same as usual, but they will now embrace the CHERAB Foundation Inc., and the professionals and parents who make it possible.  Some of the existing board will also be part of CHERAB, and news of what projects we are involved in will be available soon.

I will be posting "beginning" messages from other nonprofit, or support group leaders.  We hope these stories encourage someone, perhaps you, that you can start a group in your area.  You'll notice the road is not always smooth and easy, but it's always rewarding.  To all of you who believe that you can start a group in your area, remember: cream always rises, and you will too!

Lisa Geng, President CHERAB and Children's Apraxia Network

Lisa, 

I am glad to hear from you. I have been following the web site you set up and wanted to tell you how impressed I am with how you are doing. I think you are providing valuable information to families with children who need education about Apraxia and its treatment. I am happily surprised to see the help you have enlisted i.e. Children's Specialized Hospital, therapists,
doctors, toy companies. You have certainly taken the skills you use in the work place and gifted them to Apraxia Outreach in New Jersey. I think you are doing a wonderful job! Thank you for making so much for others our of a small beginning.

As for our beginning, I must tell you that for the same reasons you have jumped into the helping mode for your son, Tanner, I jumped for our daughter, Anne. Her son, Zane,  was 2 1/2 years old, not talking and unable to socialize with his peers. Anne was beside herself wondering what to do, how to help him and who to turn to. We enlisted the help of the Special Needs Unit at our local hospital, interviewed Speech Therapists and Occupational Therapy Therapists. Once decisions had been made and therapy started for our grandson, my goal was to help our daughter find
other parents who were experiencing similar speech problems with their children. As the grandma, I saw our grandchild getting help, but was sad that our daughter was alone. I needed to find a way to help. 

I asked Zane's Speech Therapist if I could start a parent's group. We discussed the issues involved with Apraxia, and she came up with a list of parents whose children had the same or similar diagnosis. The first meetings were held at the therapist's home. We provided a snack, she provided a safe place for our first meetings. Later, we began to meet in each other's
homes.  

After a few months, we realized there were more parents in our
area who might be interested in a group. When we decided to open the group to people we might not know, I decided we should meet in a public place rather than in our homes. I arranged with our borough Community Center that we could meet there for one night per month. We asked our children's therapists to be our speakers. We asked the school personnel to talk to us. We talked to each other. Whatever the parents were asking about, we tried to schedule the info for a future meeting. We met for special
activities. 

One month a picnic at a county park that had a working farm, another time a picnic at the community center. We did not have anyone to watch the children that were brought to the meetings because we never collected any money from the parents. I covered any costs of the meetings. I listed our meeting times in the free section of our local newspaper. I made a newsletter each month, mailing to parents who had come to the meetings, local therapists, hospitals and community centers.

Our grandson was released from OT and Speech Therapy, unclassified at the Public School and I decided to stop arranging meetings, etc. Through the newsletter, I asked for someone in our community who wanted to lead the group to step forward. You stepped and now you are running! Thanks to you, many families will be better equipped to help themselves and their children overcome Apraxia. My best to you and all who help you. You are
the best!

Kathryn Rickard

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