Rare set of books to benefit DSI

By Guest Blogger Greg Johnson

Fall is here it is time for the Down syndrome Buddy Walk(R) and The Hunger Games Book 2 "Catching Fire" will be released as a movie in just a few short weeks. Somewhere on a branch in Emily's Family Tree is a leaf by the name of Suzanne Collins the author of The Hunger Games. Suzanne graciously signed a SET of The Hunger Games books (yes all three are signed!) specifically for Down Syndrome Indiana to be raffled off in December 2013. Visit: http://www.dsindiana.org/Raffle.php for a form you may fill out and mail in for a chance to win this very RARE set of books. Yes this set is extremely RARE not only because of the popularity of the series but also because the 3rd book in the series has very few true "Autographed" copies. During the national book signings of the release of Mockingjay Suzanne had an injury to her hand and had a special STAMP she used for signing the books. This set she signed for DSI is the Real Mccoy! If you are interested do a web search on Autographed Hunger Games Books and see if you can find a Mockingjay copy Autographed and not STAMPED. Here is a link to the first book The Hunger Games http://hunger-games.net/rare-first-edition-signed-copy-of-the-hunger-games-book-on-sale/ notice the price for 1 BOOK!!!!! Not all 3 and I guarantee the even more RARE Mockingjay is worth 2 times that! Oh and don't forget book 2. My math tells me this set is worth around $10,000.00! So for a small $10 chance you could be the lucky winner of a great set of books and help a great organization at the same time! Good Luck and "May The Odds Be Ever In Your Favor!"

 

PS Please forward this to your friends and family!

 

Greg, Claudia and Emily Johnson

2013 Buddy Walk Top 5 Teams

A huge and heartfelt thank you to all of the 2013 Buddy Walk(R) Teams! You created an incredible amount of awareness about Down syndrome in our communities. Thank you!


The top 5 fundraising teams for the 16th Annual Buddy Walk® are as follows:

5th Place – Ella’s Fellas
4th Place  – Team Aurora
3rd Place – Mallory’s Minions
2nd Place – Isaac’s Deputies
1st Place – 21 DreamS

Congratulations Top 5 Fundraisers!

From the bottom of my heart, I would like to thank you for working so hard to raise awareness about Down syndrome. This year's top fundraisers are:

5 – Brook Lawson
4 – Buffy Smith
3 – Jason Ellis
2 – Mallory Ellis
1 – Beckie Lehman

Congratulations to ALL fundraisers! Thank you again!!!!

Team Packet Pick up Today!

It always amazes me how quickly time flies when we are having fun… and the Buddy Walk® is just around the corner!

 

To make the day easier on your family, we suggest that you pick up your team materials (t-shirts, signs, etc.) and turn in donations at the Early Bird Registration, this Friday October 4^th from 3:00 – 7:00pm at the Down Syndrome Indiana office.

 

If you have any questions or comments regarding the Buddy Walk®, please do not hesitate to ask – I am happy to help however I can!

 

Please note our *new* office location address: 708 E. Michigan Street, Indianapolis, IN 46202

 

See you soon!

 

Jessica Hadsell

Event Coordinator, Down Syndrome Indiana

American Academy of Pediatrics Releases Parent Version of Healthcare Guidelines

The American Academy of Pediatrics has released a parent version of the Healthcare Guidelines for Individuals with Down syndrome. They are available at:
http://www.healthychildren.org/English/health-issues/conditions/developmental-disabilities/Pages/Children-with-Down-Syndrome-Health-Care-Information-for-Families.aspx

NIH Launches First National Down syndrome Registry

Registry connects families and individuals with Down syndrome to researchers

 

The National Institutes of Health has launched DS-Connect, a Web-based health registry that will serve as a national health resource for people with Down syndrome and their families, researchers, and health care providers.

 

"The Down syndrome community has voiced a strong need for a centralized, secure database to store and share health information. DS-Connect fills that need, and helps link individuals with Down syndrome to the doctors and scientists working to improve their health and quality of life," said Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), which funded and developed the registry.

 

Participation in the registry is free and voluntary. Individuals with Down syndrome, or family members, on their behalf, may sign up to create personalized profiles with information about their health histories, including symptoms, diagnoses, and medical visits. The website has been designed to ensure that all information remains confidential. The site will separate users' names from their health information, so that individuals may compare their health information with that of all other participants in an anonymous manner.  

 

If participants give permission to be contacted, the registry coordinator can inform them of research studies in which they may be interested. Results from these studies will help researchers better understand Down syndrome and how to treat its accompanying health problems across the lifespan.

 

"DS-Connect is for people of all ages, not just children," said Dr. Maddox. "Right now, we don't have much data on older individuals with Down syndrome, and that's been a problem. People with Down syndrome are living longer, and researchers and physicians will require information about the health issues and needs of these individuals to make recommendations about their health care."

 

The Down Syndrome Consortium, a public-private group established in 2011 to foster the exchange of information on Down syndrome research, will be a critical player in helping to disseminate information about the registry to the Down syndrome community. The consortium includes individuals with Down syndrome and their family members, representatives from professional societies and advocacy groups, and NIH scientists.

 

"We've been fortunate to have so many experts and advocates provide input on this effort," said Dr. Maddox. "The establishment of this registry is a tremendous step forward for Down syndrome research, and the resource will become all the more beneficial as more individuals join in the months and years ahead."

Is Your Child's School Inclusive?

Here are Indicators from the National Down Syndrome Society to help determine if your child’s school is inclusive:
 

1.      Your child attends the school that (s)he would have attended if (s)he did not have a disability;
 

2.      Your child is a member of an age appropriate general education classroom;
 

3.      Your child’s name is on all class lists, lists of groups put on the board, job lists, etc.;
 

4.      Your child’s related services are delivered primarily through consultation in the classroom;
 

5.      Your son or daughter receives the same or similar materials as students without a disability, with the needed supports (i.e. accommodations and adaptations as necessary);
 

6.      Your child passes classes with other students arriving and leaving at the same time;
 

7.      Your child has a locker/cubby alongside “typically developing” students;
 

8.      Your child rides the same school bus as his/her peers without a disability.
 

August is back to school month at DSI and with a new school year come new questions and concerns from parents about school inclusion for their child with Down syndrome. Based on a study published in 2008 and entitled,  “Membership, Participation and Learning in the general education classroom for students with Autism Spectrum Disorders who use AAC”  the indicators above can help you determine if your child’s school is inclusive or if there may be some areas where improvement can be made. 


Research has shown that there is a positive relationship between the amount of time that a student spends in the general education classroom and a student’s academic achievement, communication skills and social relationships.


An inclusive school/classroom is really important! 


There is an excellent webinar from the National Down Syndrome Society on this topic at:  http://www.ndss.org/Resources/Publications/Webinar-Series/.