| President’s Message
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President’s Message
April 15th has come and gone. Hopefully the tax man didn’t take TOO
big of a bite. Spring is here and we are gearing up for a very busy summer.
Inside this newsletter you will find information regarding all of our upcoming
activities. Please make plans to attend any or all of the events, especially
the Police vs. Fire softball game at Driller Park. A portion of ticket
proceeds will benefit DSAT. I have it from an inside source that the Tulsa
Police team will be VERY motivated to beat to Firemen. Expect to see a
spirited and exiting contest.
We are also ramping up our activities with respect to the Buddy Walk,
which will be held on October 19th. We are really focusing on raising funds
at this time. We have received our first pledge for a Platinum sponsorship
($1,000+) from MESA Products, Inc. If you know of anyone who would be willing
to donate, please contact me and we can decide on the best way to approach
them.
Erin and I are always open for suggestions, ideas, comments or complaints.
If you have any or all of the previous, please let us know. We are here
to serve you and make DSAT what you want it to be.
No Regular
Meeting for May
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May 14th Caravan to Special Olympics for Opening Ceremony
Meet at Special Olympics Building at 5:15
Ceremony starts at 7:00 in Stillwater
Volunteer to help on Thursday, May 15th
Instead of our regularly scheduled meeting, we will be showing our
support for the Special Olympics. We will be meeting at the Special Olympics
building to caravan to Stillwater to watch the Opening Ceremonies on Wednesday,
May 14th. The Opening Ceremonies start at 7:00 with acts from kids and
young adults with Down Syndrome and then the actual ceremonies with the
parade start at 8:00 and end with a big fireworks display by 10:00. It
should be a really fun event. The kids will love all the activity!
We are going to meet at the Special Olympics building at 5:15 PM If you
are interested in caravaning, please contact Erin Paul at 355-0193 so we
don’t leave without you!
Opportunities
to Volunteer at the Special Olympics
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DSAT has volunteered to help with the staging events this year. This
is where all the kids check in before the event. We need lots of help!
We will be helping on Thursday, May 15th from 7:00 AM - 4:00 PM in Stillwater.
There will be 2 shifts. If you would like to help out, please contact Erin
Paul as soon as possible and we will get you signed up. They need so much
help to make it yet another successful event!
Driller’s
Night June 28th
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All we need to do is spread the word. Get your family and friends to
go to the Driller’s game that evening when they buy their ticket have them
say that they are supporting DSAT and we automatically get $1.50 for each
ticket. We will have advance tickets to sell at the June meeting or you
can contact Adam Paul at 355-0193 or ERIN-ADAM@prodigy.net and we will
get you tickets to sell to your friends!
5:00 PM local policemen are playing the firemen.
6:00 PM DSAT will have a picnic for all their members at the
tent located inside the Driller’s Park. There will be hamburgers, hot dogs,
chips, beans, etc. It will be a great time to connect with other DSAT families.
Picnic will be served until the beginning of the game.
7:05 PM Driller’s game starts. There will be a huge firework
display after the game. Stay and watch!!!
DSAT is paying for the picnic and game for DSAT members. If you are
planning to attend, please contact Erin Paul at 355-0193 or ERIN-ADAM@prodigy.net
so we can get a head count. Please encourage other family members and friends
to come to the game that night and support DSAT. Remember to tell them
they are supporting DSAT when they buy their ticket! We will all
be sitting together in general admission. Should be a great, fun, family
night.
Spirit Night
at Chick-fil-A
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Come to eat with other DSAT family members and help support DSAT! Dinner
at Chick-fil-A at Woodland Hills Mall anytime between 5 and 8 on Thursday
night, May 22nd.
Buddy Walk
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Our first annual Buddy walk will be October 19th at Whiteside Park
from 2:00 PM - 5:00 PM. We still needs lots of help to make this a successful
event. The committee meets the 3rd Monday of each month at the Mazzios
at the farm at 6:30 PM If you can’t attend a meeting, but would like to
help with the walk, please contact Adam Paul at 355-0193 or ERIN-ADAM@prodigy.net.
Please make plans to attend this 1st Annual Event!
Attention
all Golf Lovers!
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Links for Little Ones Golf Tournament benefiting Children of the Little
Lighthouse will be on Monday, June 2, 2003 . The entry deadline is Friday,
May 23rd. Call 918-664-6746 or mkelley@littlelighthouse.org to register
or to get more info, you can also stop by Little Lighthouse.
National Down
Syndrome Conference Top
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July 10-13, 2003
St. Louis, Missouri at the Adam’s Mark Hotel
There will be programs for parents, family member, teens and adults
with Down Syndrome and a program for siblings ages 13 and up. The conference
is entitled, Making a Difference Together. The focus of the 2003 conference
is working together to improve the lives of individuals with Down syndrome.
At the conference you can find out about the newest products, programs
and services, attend the Festival of the Arts, featuring the many talents
of people with Down syndrome, meet Chris Burke, learn about resources for
babies, children, adolescents and adults with Down syndrome. You can also
acquire the most up-to-date information on education, research and adovacy.
It will be a great event. To get more information or submit a registration
call 1-888-354-4694 or online at www.ndss.org Registrations must be postmarked
by June 23rd.
National
Down Syndrome Congress Conference Top
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August 22-24th
Philadelphia at Adam’s Mark Hotel
There are sessions available for youth and adults with Down syndrome,
a Brothers and Sisters Conference for ages 12-high school and then the
General Convention for parents and professionals. There will be several
highly respected speakers and much information given at this conference.
The general convention registration deadline is July 31st. The Brothers
and Sisters registration deadline is July 10th. If you are interested in
attending this conference call 1-800-232-NDSC or get on online at www.ndsccenter.org
Thank
You!
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Thank you to the following contributors. We couldn’t do it without
you:
Donations Chick-fil-A
Dues Paid
Don and Cris Fyler
Jason and Kelli Bennett
Kent and Jill King
Karen and Daughn Baker
Deena Rae Hughey
Patricia Bailey
Barry & Kay Marie Smith
Dora & Gary Durland
John & Lori Schultz
Tim and Shannon Pinney
Research
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They are looking for more volunteers to research possible benefits
of a new medication. An approved medication for patients with Alzheimer’s
Disease is being studied for possible benefits in improving cognitive and
global functioning in young adults with Down Syndrome. This medication
is widely accepted as the drug of choice for improving symptoms of Alzheimer’s
disease. It is now being studied for effectiveness and safety in persons
with Down Syndrome who may not yet exhibit any cognitive deficits but who
may be susceptible in the future.
Who: Young males and females with Down syndrome aged 18 to 35.
Each participant must have a reliable caregiver who has contact with them
daily, and can accompany them to each of the 4 visits.
What: This is a 3 month, double-blind clinical trial using one 5 mg
tablet daily of the study drug, or its matching placebo, for 6 weeks followed
by 10 mg daily for the next 6 weeks. Those who complete the trial
are eligible for an additional 3 month open-label extension of the study
drug. All study-related visits and medication are free of charge.
Where: Clinical Pharmaceuticals Trials, Inc. is located in the St. John’s
Doctors Building, 1705 E. 19th St. Suite 406, Tulsa, OK 74104.
For more information call 743-4374 and ask for the study coordinator,
Angela Corman, or Dr. Ralph Richter.
Calendar
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June 2nd
Links For Little Ones
Golf Tournament
Benefitting Children of the Little Lighthouse
June 19th
DSAT Meeting
Education Meeting
Ms. Deeann Brown, a teacher for 30 years,
will be discussing preparing your child for entering school and her
perspective as a teacher.
June 28th
DSAT NIGHT
at Driller’s Park
5:00: Policeman vs Fireman
6:00 Picnic
7:00 Driller’s Game
Fireworks after the game
Make sure to say you support DSAT
when you buy your ticket
and they will donate $1.50 to DSAT
July 10th to 13th
National Down Syndrome Conference
St. Louis, Missouri
July 17th
DSAT Meeting
Waivered Services & EPSDT
What are they? Who needs them? How do you qualify?
Come get your questions answered!
August 22nd to 24th
National Down Syndrome Congress Conference
Philadelphia
October 19th
DSAT Buddy Walk
Whiteside Park
2:00 PM to 5:00 PM
Newsletter Deadlines
Share with us your stories, good news and interesting facts. Have your
announcements, stories and information to Kendra Pennington 889-2954 or
KendraOT@hotmail.com by June 26th for the July newsletter. It is our hope
to provide the most current information.
Resources
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The Oklahoma Developmental Disabilities Council
(ODDC) has a resource library. The library features specialized information
related to developmental disabilities, sources of funding, and many other
topics. The publications and videos are available to be checked out at
no charge. It is also possible to access the internet at their library
and print copies of information from websites. ODDC is located in Oklahoma
City. For information about other services and programs available through
the ODDC, call 405-521-4984 or 1800-836-4470 or e-mail OPCDD@aol.com
Free Financial Planning Information from National Down Syndrome Congress
Possibilities: A Financial Resource Book for Parents of Children with
Disabilities is a 60-page booklet produced by the National Endowment for
Financial Education and PACER Center. This booklet provides suggestions
on organizing financial records, making a spending spends, saving programs
and estate plans. The National Down Syndrome Congress office has a limited
number of free copies of the booklet available to members while the supply
last. E-mail info@ndsccenter.org or call
1-800-232-6372 to request a copy.
Now Available Online:
Coping Tools for Parents of Children with Special Needs
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Coping.org is an online source of help for parents that covers a variety
of issues related to parenting, including raising a child with special
needs. The site makes available the book, “Tools for Parents of Children
with Special Needs”, written by James. J. Messina, Ph.D. Coping.org provides
this material free to as a public service. (Info provided by TARC)
“Juggling Down Syndrome .A Health Journal.”
Accurately record Down Syndrome medical history!
Journal Sections include a variety a topics: doctor’s visits, insurance
info, therapy sessions, hearing tests, dental and vision exams, etc. Journals
are 8 1/2 by 5 1/2 and spiral bound. For more information or to place
an order call 210-256-2177 or thelittleacorn1@yahoo.com
She also has a book entitled “The Courage Book” that is available that
you fill out for your child that shows all about how special they are to
you.
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. Top
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