Apraxia Kids’ Early History
As recently as the mid 1990s, little educational information was available for families whose children were diagnosed with Childhood Apraxia of Speech (CAS). While seeking information following the diagnosis of her son, Sharon Gretz became frustrated with the void of educational material on the subject of childhood speech apraxia. In 1997, she established the first parent support group in the US (located in Pittsburgh, PA) and began working with local experts to conduct educational training programs for speech-language pathologists.
Also in 1997, Ms. Gretz started the first apraxia email discussion group known as Apraxia-KIDS. A companion website evolved that was developed, overseen and managed by her and other volunteer parents. She recruited leading experts in the field of Childhood Apraxia of Speech to advise content for the website. The Apraxia-KIDS website became known for its comprehensive, accurate, and up-to-date information. However, the public need for information, education, and resources was unable to be managed solely by volunteers or without formal structure and funding.
Becoming a Nonprofit
With the support of parent activists and national experts, the Childhood Apraxia of Speech Association of North America (CASANA), a nonprofit 501(c)(3) public charity, was founded in 2000 with the exclusive mission of representing the needs and interests of children with apraxia of speech. Those programs known as Apraxia-KIDS were now operated under the auspices of CASANA. A generous operating partner, The Hendrix Foundation, helped to solidify CASANA’s programs for nearly five years, helping to assure a strong future for the organization. The foundation underwriting and partnership produced many exciting and very needed programs.
Hope for the Future
Since 2000, Apraxia-KIDS programs have grown to include not only the email discussion and website, but also messageboards for both professionals and parents, social media sites for apraxia on Facebook and Twitter, a popular online newsletter, an online Helpdesk, the first apraxia research symposium, multimedia educational DVD’s for parents and professionals and high quality professional and parent education workshops and conferences on apraxia offered throughout the United States and Canada. In 2006, CASANA launched its Apraxia Treatment Research Fund in order to advance what is known about effective treatment for children with CAS. In 2008, we started the “Walk for Children with Apraxia of Speech” as a means to heighten awareness and important funding for our apraxia programs and research. In 2010, CASANA marks its tenth anniversary celebration and the growth of walks to over 90 across North America. A lot has changed in a decade, but much remains to be done. CASANA is the only national nonprofit organization with the sole focus of Childhood Apraxia of Speech.
CASANA was incorporated in the state of Pennsylvania and is registered with the Department of State, Bureau of Charitable Organizations, and Certificate of Registration No. 30307. CASANA is designated as a 501(c)3 public charity by the Internal Revenue Service and as such relies on the donations of the public and those that it serves in order to survive. The Childhood Apraxia of Speech Association of North America may be obtained from the Pennsylvania Department of State by calling toll-free, within Pennsylvania, 1-800-732-0999. Registration does not imply endorsement.
Childhood Apraxia of Speech Association Federal EIN: 25-1858159