can start a support group...
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
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
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:
started a new nonprofit foundation called CHERAB
Foundation Inc. which stands for
Help Education Research
Apraxia Base Foundation
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
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:
always rises, and you will too!
Lisa Geng, President CHERAB
and Children's Apraxia Network
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,
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.
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.
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
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
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 CHERAB Foundation's free email list
Late Talker vs. Apraxia? NEW:
Find out live at our meetings, or on line at:
Click to subscribe to childrensapraxianet