When my son, Tanner, was first diagnosed with apraxia at about 2.10 years old, Kathryn Rickard, had the only support group for apraxia in New Jersey. The only problem is that a few weeks after I found out about this support group for apraxia, it was dissolving!
I remember telling 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 New Jersey dissolves a week later!” I (wrongly) believed apraxia was rare, since the largest international membership group for apraxia, an Internet group, only had about 1,500 members. Because I sometimes assist in the challenged community, I know the founder of the Sarcoidosis Foundation, Sandra Conroy (an amazing lady with an amazing story). Sarcoidosis is rare, but within three years, Sandra’s registry had a membership of over 30,000 patients.
Thanks to the encouragement of both Kathryn Rickard, who ran the support group that dissolved, and Lauren Zimet, Tanner’s Early Intervention therapist, our first nonprofit, the Children’s Apraxia Network support group, was started. It wasn’t an overwhelming amount of work, and it helped me to feel less alone, knowing I know had support. Lauren helped me to get a room and the speaker for our first meeting from the Children’s Specialized Hospital. One of my objectives was to find friends for my son, Tanner, and I was happy when, a month later, I met Sue Kanarek, who had a little boy recently (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.
Sue had a friend who was a lawyer and willing to initiate the paperwork to make the nonprofit official. The three of us signed the papers. Believing, at that time, that 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 played together…and that did happen for about five months. After that, the two moms who I believed were the “only ones in my area who have children with apraxia” were gone. One found out her son was misdiagnosed with apraxia; the other one 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!
Now on my own running the first nonprofit, our group size “qua-zippled,” and I became slightly overwhelmed. I was thankful that professionals Cheryl Johnson, 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 that time, due to 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. Cherab stands for
“Communication Help Education Research Apraxia-Base”
We realized the need for a nonprofit that was able to outreach anywhere in the world, one that could provide funding for a broader base of medical, research, and education projects to 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 the Foundation possible. Some of the existing board will also be part of Cherab, and news of what projects we are involved with will be available soon.
When you read “beginning” messages from other nonprofit, or support group leaders -we hope their 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 of both nonprofits, Cherab Foundation and Children’s Apraxia Network
Cherab Foundation initiated and hosted the First Apraxia Conference and still assists with conferences to help and raise awareness about our children with communication challanges today. Check our partner site Speechville.com for upcoming events.
Cherab Foundation grew quickly from a grass roots support group with free monthly meetings with well known medical, speech, or educational professionals hosted at both the Children’s Specialized Hospital in Mountainside, New Jersey, and St. Barnanbas Ambulatory Center for over three years. Monthly meetings had members that flew in -or drove for up to six hours one way just to atttend! The meetings had an average of 70 to 100 members (room size limit) per meeting!! All of this making Cherab Foundation the largest grass-roots support source for communication help anywhere in the world.
Consumers United for Evidence-Based Healthcare (CUE) is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare (EBHC).