DOWN SYNDROME ASSOCIATION OF TULSA
P.O. Box 54877
Tulsa, OK  74155                                                                                                                         DSAT Home Page
Contents May/June 2003
 
 President's Message
  No May Meeting
 Volunteering at Special Olympics
 Drillers Night June 28th
 Chick-Fil-A Spirit Night !
 Tulsa Buddy Walk October 19th
 Golf Tournament to Benefit Little Light House
 National Down Syndrome Congress
 National Down Syndrome Conference
 Thank You / Appreciations
 Calendar of Upcoming Events
 Research on Down syndrome \
 Helpful Resources
Disclaimer
 Officers/Volunteers/Contacts
 
President’s Message    Top of Page

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          Top of Page

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        Top of Page
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         Top of Page
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               Top of Page
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                Top of Page
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!               Top of Page
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 of Page
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 of Page
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!           Top of Page
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                 Top of Page
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          Top of Page           
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                      Top of Page 

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             Top of Page 
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 of Page
 

President: 
 Adam Paul   355-0193     email

Vice President:
 Erin Paul       355-0193 email
 

Secretary:
Kelly Johnston 

Treasurer:

Newsletter: 
Kendra Pennington    (918) 889-2954   Kendra's E-mail
Kim Wofford 

Calendar Coordinator

Scholoarship/Library Committee
Jill King 

Party Planner

New Parent Packets

Development Coordinator 
Erin Beach 

Web Master
 E-mail Tracey Wilson