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The second international family conference on Rubinstein-Taybi syndrome (RTS) has been held and was well attended by families and those interested in RTS throughout the world. I was very pleased to have been asked to be a
part of this conference and hope that everyone attending was able to come away with something to help them throughout he coming months and years. I have come to know what Rubinstein-Taybi syndrome means since the bird of
our son on September 7, 1983. Our family has grown each year of our child’s life in knowledge, in support, and in the searching for more answers about RTS. The questions never stop. The answers continue to be
found slowly, one-after-another, through sharing from the many physicians, professionals, families, and caring individuals interested in RTS.
Organizing an international conference is a monumental task, and having Dr. Rubinstein, his staff, and personal friends carry out such a meeting goes beyond generosity and caring. I speak for all of us who attended the
conference or are receiving the proceedings when I say “Thank you and God bless you: to Dr. Jack Rubinstein, Mrs. Rubinstein, Mark Shannon, and your whole crew. To all presenters, volunteers, and support staff we also say
“thank you.” Your dedication to Dr. Rubinstein and RTS is a blessing to all of us.
When our son was diagnosed with RTS in 1983 we had never heard of Rubinstein-Taybi syndrome. We searched for information to help us care for our son, we searched for other families to contact, and we tried to find anything
to help us as a family deal with our son and his many disabilities. The initial information given to us of his diagnosis was very general and told us more of what all would be wrong with him and what he wouldn’t be able
to do, than where we might find more information or how the children all vary in how they are affected by the syndrome. Through our searching we were able to find Dr. Rubinstein and Dr. Taybi, we found articles on various
aspects of RTS, we found other families searching for some of the same things, and we found a way that we could help others. In July 1984 we started the Rubinstein-Taybi Parent Group here in the USA. That group has
included families from Canada until this year when the Canadian families organized their own group. We have received requests from all over the world for information and help. The sharing of information about our
children from family to family has helped everyone. Our group has also been able to assist many doctors and professionals in research studies so that new information will be available to everyone. Being able to let
a family know that they are not alone in this new adventure when their child has been diagnosed with RTS is the strongest reason to continue this work.
There are many new ways available now to find information on RTS. In addition to providing individual contacts to families, our group has expanded into a busy lot of volunteers who have taken on the tasks of providing
additional resources through web sites, list/serves, various foundations, related research studies, and so much more - all int he name of our children diagnosed with RTS. The blessings we all receive shine in our
children’s smiles. Thank you to everyone who plays a part in providing information and direct contact to so many.
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