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Rubinstein-Taybi Parent Group USA
P.O> Box 146
Smith Center, Kansas 66967
In 1984 Garry & Lorrie Baxter started a parent contact group for families who had children diagnosed with RTS. Their son was born on September 7, 1983 and diagnosed on September 22, 1983 with RTS. Through the
months after his birth they searched for information on RTS and other families to talk to. By July 1984 they had contact with 6 other families who all had children with RTS. That month they sent out their first list
of family contacts, questions and answers, and information that they had received on RTS. Through the next months they continued to send the list as it grew as well as questions and answers and information. As the
group continued to grow it became more and more difficult to keep up with and through 14 years has become a group of over 300 families searching for information, sharing, and help for their child and their family here in the
USA.
As Lorrie took on more and more requests from not only families but educators, doctors, therapists, universities, and families from around the world, trying to do a newsletter, group booklet, answer questions and share the
information accumulating became overwhelming. She continues to do all that she can to help anyone dealing with a child diagnosed with RTS and is available by phone, FAX, email, postal mail, etc.
The parent group has grown through the years because so many families need to share about their child. Finding support from someone “who has been there and done that” echos off the pages of correspondence and all
communications. Initially all that was available on RTS were journal articles from the 60s, 70s, and 80s, many being about instituionalized individuals with RTS. There was also contact available from Dr. Jack
Rubinstein and Dr. Hooshang Taybi and that contact has continued through the years to a point that nay family or indivudal may call or write and receive a response or help with a diagnosis, medical problem, or general concern
with their child. In 1990 Lorrie completed a basic pamphlet on RTS with Dr. Rubinstein’s help and that was printed to share with anyone who requested information on RTS. The parent group participates in many studies
with professionals and our participation in sharing about our children has been able to supply everyone with journal articles on specific areas in RTS, as well as the booklet “Rubinstein-Taybi Syndrome - A Book for Families” by
Dr. Cathy Stevens and Dr. John Carey. Journal articles come out from the 80s and 90s that are based on information assembled from families who care for their children in the home, have access to public education and
special education, and benefit from special services starting at birth.
Because the USA parent group has grown so large many areas have been lacking due to Lorrie not being able to keep up with it all. Chris Garavente of the Special Friends Foundation is heading the start of a regular
newsletter for RTS here in the USA. The Web Site created by Diane Wardlow of Arizona is an avenue where families can share about their child and find information quickly. Janet Estes of Canada started a List/Serve
for anyone wanting to communicate on RTS and all of the families from Canada that were included in the USA group through the years are now in their newly formed parent group in Canada.
From all over the world the list of families continue to grow and besides having a list for the families int he USA, Lorrie now has listings for all the countries that have contacted her through the years. More parent
groups are beginning all over the world and are being supported by families in search of another fmaily, doctors looking for information to help their patient, and individuals dealing with someone diagnosed with RTS.
Lorrie continues to help in any way that she can and she will continue to maintain the Rubinstien-Taybi Parent Group USA list for all our families as well as a listing of any other countries. Each time another country
starts a parent g roup Lorrie will have that groups main contact so that we may all share as information is gathered and things continue to happen with RTS. The group also has families here in the USA who are volunteers
to help the Spanish speaking families. We still need volunteer families for other languages, too.
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