| President’s Message
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Summer is really flying by. We had some good meetings in June and July and our meeting in August promises to be top notch as well. We will be meeting at a different location in August though so take note. We will be meeting at Asbury United Methodist Church located at 5838 S. Sheridan Road in Tulsa. The nearest major intersection is 61st and South Sheridan. The reason for the change is the anticipated larger attendance. Dr. Lawrence G. Leichtman will bring his 20+ years of experience to Tulsa on August 15th so make plans now to attend the August meeting. We try to provide our membership with a wide variety of information at our meetings and because of this, it is possible to have some topics controversial in nature. I remind everyone The Down Syndrome Association Of Tulsa does not promote, recommend or endorse any service, professional or organization. Decisions regarding the use of any service, professional or organization are the sole responsibility of the family or guardian. At our last meeting Rebecca Reifsteck updated us on the 2003 calendar project along with some sample photo shots. It promises to be as delightful as each of our previous calendars. The next time you see Rebecca please communicate your appreciation for all that she has put into this project. Several folks have expressed interest in gathering for an informal picnic or pot luck of some kind. Well we are planning one for September 21st at our house. Look for more details later in the newsletter. Several folks attended the National Down Syndrome Society Conference in Nashville last month and have lots to share I’m sure. We hope to hear more about their trip at the picnic and at other meetings. Another project for this fall is our sponsorship of a Special Needs Educators Conference for October 26th. Dianne Craft has a Master’s Degree in Special Education with over 25 years experience working with children and teenagers. She has presentation topics in areas like Teaching Strategies for the Right Brain Child, Overcoming Developmental Disabilities, and Nutrition and a Child’s Development. We encourage everyone to communicate this to your child’s teachers as well as other parents of children with disabilities. This date does not conflict with any of the O.U. football games so dads can plan to attend as well. Next Meeting August 15th at Asbury
United Methodist Church
Remember to mark August 15th at 7 PM on your calendar. Asbury United
Methodist Church
Mom’s Support
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Teen Forum
Family
Picnic
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Sharing
Our Joy Conference 2002
Dianne has a Master’s Degree in Special Education, with 25 years experience
working with children and teenagers. She also holds a Certified Natural
Health Professional License. She has pioneered methods of assessment and
interventions, based on the way the brain processes information. Her workshops.
“Brain Integration Therapy for Children,” ,”The Biology of Behavior,” and
“Teaching Strategies for the Right Brain Child,” have been given to professional
educators, speech therapists, occupational therapists, teachers, and parents
for the past ten years. Her manual, Brain Integration Therapy for
Children is sold throughout the United States. She is a regular speaker
at conferences, and author of articles on children and learning. Session
topics include:
Session topics:
“The first change I noticed in Adam, after giving him a mineral supplement
was that his spatial awareness, balance, behavior and focusing really improved.
He used to hate reading, and is now excited about it. He’s even taking
a book to bed to read at night!”
“Three days after starting the program Dianne gave us Timmy started
calming down. After 6 weeks I could read his math papers well enough to
grade them. His handwriting is 1,000% better.”
“Following your approach, Stephen (age 6) has learned all his numbers
and letters, and can write his first and last name without any reversals,
misplaced letters etc.. He can now recall stories we’ve read and his fear
of learning is fading away.”
Registration Fees
Plan to attend this conference and communicate to teachers, home school moms, and other education professionals. Buddy
Walk
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One Hour
Of Time
The little boy quietly went to his room and shut the door.
“Are you asleep son?” he asked.
Then, reaching under his pillow, he pulled out some more crumpled up
bills. The man, seeing that the boy already had money, started to get angry
again. The little boy slowly counted out his money, then looked up at the
man. “Why did you want more money if you already had some? “ the father
grumbled.
“Daddy, I have $20.00 now. Can I buy an hour of your time?”
CALENDAR
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August 22nd
August 23rd - 25th
September 21st
September 29th
October 26th
Newsletter Deadlines
Sharing Our Joy Conference
2002 Top
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Ambrotose and Down
Syndrome
Ambrotose® was developed in 1996 by the Mannatech company. Ambrotose is described by Mannatech as “a blend of specific plant saccharides that provides support for the immune system. These saccharides are necessary for the body’s creation of glycoforms, the structures on cell surfaces used to ‘talk’ to other cells.” Mannatech’s promotional materials go on to state that Ambrotose provides 8 sugars necessary in glycoproteins: glucose, galactose, mannose, fucose, xylose, N-acetylglucosamine, N-acetylgalactosamine, and N-acetylneuraminic acid. Mannatech does not promote Ambrotose for any specific disease or condition, but claims on its website and promotional materials that it promotes better working of the immune and endocrine systems of the body. Mannatech’s products are not sold in stores, but is handled by a group of individuals in a Multi-Level Marketing setup (the most well known MLM is Amway). The “associates” actually selling the Ambrotose are free to directly state that the product is useful in a wide variety of conditions. On the internet and through phone call “seminars,” Mannatech associates are claiming that Ambrotose can help fibromyalgia, diabetes, attention deficit disorder, multiple sclerosis, AIDS, colitis, neuralgia, chronic infections, and wound healing. Recently Down syndrome has been added to that list, with claims ranging from improvement of the immune system and attention span to eliminating the typical facial features of DS. Some parents have even been told by Mannatech associates that Ambrotose will “cure Down syndrome.” Since there is no research that has been done specifically on Ambrotose and children with Down syndrome, I will address the theories behind the product as presented on the website glycoscience.com. First, some quick background: most proteins in cell membranes and proteins secreted by cells contain carbohydrates. The act of adding a carbohydrate to a protein is called glycosylation, and this makes fundamental changes to the physical traits of the protein. These combinations are then called glycoproteins. These special proteins play a major role in the immune system, especially in cell recognition. People who wish to sell Ambrotose point out correctly that we are learning more and more about how these glycoproteins contribute to disease. (An article in the July 2002 issue of Scientific American has a very good review of the subject.) However, what they don’t tell you is that these diseases and conditions have not been shown to be due to dietary deficiencies. For instance, it is true that more and more infants are being diagnosed with disorders with protein glycosylation, but these are due to genetic mutations in enzymes involved in the process. In some conditions of faulty glycosylation it may be possible to treat these with certain sugars, but only in a correct ratio tailored for each individual condition. Ambrotose merchants respond that the Ambrotose isn’t designed to treat any condition, but to provide the body with “necessary building blocks” so the body can repair itself. This argument is based on one supposition: that we don’t get enough of these sugars in our diet. Of the eight sugars present in Ambrotose, Mannatech claims that only glucose and galactose are found in the foods we eat; the other “rare” sugars are no longer in our diet due to overworking of the soil, overprocessing of foods, etc. I have yet to find any facts that back up this assertion. But even if it were true, as long as we eat carbohydrates in a varied diet (fruits, vegetables and grains), our bodies can take these complex sugars and convert them to the other forms we need. Ambrotose merchants often respond to this point by claiming that relying on our normal metabolism to create the necessary compounds instead of eating them increases the risk of metabolic errors, but I find no scientific evidence that this is a problem. On the glycoscience.com website, there are many references offered to give credence to the arguments given for using Ambrotose. In looking at these references, I find many that have not been published in peer-review journals, and most of the studies that were don’t actually back up the claims made. I’ve found general, sweeping statements made about biochemistry being referenced to a study that really doesn’t apply to the statement, or quotes taken out of context of the referenced article. This alone fails to inspire my faith in this product. With any supplement, parents should also be concerned about side effects, just as they should be with medications. Ambrotose given in large amounts can overwhelm the digestive capabilities of the intestinal tract, causing cramping and diarrhea. Phytobears, a gummy-candy form of Ambrotose, can adhere to teeth and increase the risk of tooth decay the same way regular gummy candies can; and bacteria in the mouth that produce cavities thrive on sugars such as those in Ambrotose. When you add all these concerns to the absence of specific research
on Ambrotose and Down syndrome, I cannot
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Program Committee
Sharing Our Joy Calendar Committee
Building Committee
New Parent Packet/Video Committee
Young Adult Program Committee
Newsletter Committee
Please consider becoming involved
Thank You!
FOR SALE
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DISCLAIMER:
The Down Syndrome Association Of Tulsa does not promote, recommend or endorse
any service, professional or organization. Decisions regarding the
use of any service, professional or organization are the sole responsibility
of the family or guardian.
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| President:
Tracey Wilson (918) 288-7719 or (918) 488-4060 Top of Page Fax (918) 288-7897 E-mail Tracey Wilson Co-Vice Presidents:
Secretary:
Treasurer:
Newsletter:
Calendar Coordinator
Scholoarship/Library Committee
Party Planner
New Parent Packets
Development Coordinator
Web Master
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