10/16 Conference Call/Webinar: Update on DS Cognition Research & Clinical Trials

Register today! Wed, Oct 16, 2013  1:00 pm ET/10:00 am PT Cost: Free This webinar brought to you by: Down Syndrome Affiliates in Action and Down Syndrome Research and Treatment Foundation The Research Landscape: Update on DS Cognition Research and Ongoing Clinical Trials Available to Nonmembers!  Down syndrome cognition research holds enormous potential for people with Ds — but have your members heard? This webinar will give affiliate leaders and members of the Down syndrome community the information families need about how science is working to deliver increased opportunity, independence, and fulfillment to individuals with Down syndrome. Researchers are making great strides towards delivering improved learning, memory and speech, and towards preventing the additional cognitive decline people with Ds experience as they age. Find out about this progress, including ongoing clinical trials, when we detail recent significant advances in the field of Down syndrome cognition research in this free online discussion. This informative, accessible presentation is designed specifically to prepare you with accurate, up-to-date information, and will cover: How to communicate the latest research advances and their significance for individuals with Down syndrome in enhancing their daily lives; How the Down syndrome community is essential to achieving successful new therapies, and what you can do to get involved; How participation by individuals with Down syndrome benefits not only people with Ds but also benefits those in the broader community; How working together to leverage support can significantly increase funding for Down syndrome research, and speed the development of safe, effective therapies to improve quality of life for people with Ds. We hope you will join us for this free webinar to help you learn more about the significant advances and exciting progress that is currently underway.  Register today:  https://dsaia.clickwebinar.com/The_Research_Landscape/register?lang=en

Help Gaps in the Map and get a chance to win an iPad2!

Down Syndrome Affiliates in Action (DSAIA) has partnered with the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) to create the Gaps in the Map Project which is designed to ensure that all families have access to support and information from a local Down syndrome affiliate. And, to raise funds for this amazing project, we're holding a contest to win an iPad2.   Here's how you can win... Give at least $21 to GapsInTheMap (http://www.crowdrise.com/GapsInTheMap) and you'll automatically be entered to win the iPad2.  It's as easy as that. Every donation, large or small, can make all the difference in helping all families to realize that they are part of a supportive down syndrome community so please give what you can.  To help even more, please forward this email to everyone you know. The contest goes from May 6th to June 3rd @ 11:59pm EST. I think that covers it. Thanks so much.   Gaps in the Map Committee Click here for all the tedious rules.  Special thanks to Down Syndrome Today magazine and James McFadden for the donation of the iPad!

Down Syndrome Affiliates in Action P.O. Box 2122 Bismarck, ND 58502 701.425.7129                           info@dsaia.org                      www.dsaia.org Copyright © 2013 Down Syndrome Affiliates in Action

Episode #17 – DSAIA with Deanna Tharpe!

from the Down Syndrome Radio Podcast:
Remember last episode when we told you how great Down Syndrome Affiliates in Action (DSAIA) was as a resource a resource for you local DSA?  Well we went and got Deanna to join us for this episode to tell you more!

The short version is that Deanna has two sons.  When the second one turned out to have DS, she started a local Down Syndrome Association.  Three years later that DSA was winning awards.  Now she shares her talents with ALL DSAs through DSAIA.
DSAIA is sort of a trade association providing centralized support to all DSAs across the country.  This means better sharing of ideas across the country and results in better lives for individuals with DS!
Their big thing is their conference which is coming up in a few weeks.  This is not really a conference for individuals, but one for DSA board members to come and get trained.  We talked about it quite a bit and the organization and programming of this conference is amazing.  Sort of a Mecca or rite of passage for DS Board Members.  Not only are there very relevant topics by amazing speakers, but there is plenty of opportunity to network and we all know how important that is!  My wife, Kim, is going and so is Rick.  We will get the report when they come back!
DSAIA also does webinars to keep board members current throughout the year.  They also have a big push called ‘Gaps in the Map’.  Check it out on their website at www.dsaia.org
Thanks for joining us Deanna!
Mark
Download Down Syndrome Radio, Episode #17.
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The Next Chapter Book Club

from The Next Chapter Book Club (NCBC):

The Next Chapter Book Club (NCBC) offers weekly opportunities for people with developmental disabilities (DD) to read and learn together, talk about books, and make friends in a relaxed, community setting.  A program of The Ohio State University Nisonger Center, NCBC was established in June 2002 to provide adolescents and adults with DD – regardless of reading ability – the chance to be members of a book club.  NCBC has become the preeminent program of its kind.  Today there are NCBC programs in over 100 cities across North America and Europe.

Individual Next Chapter Book Clubs usually consist of five to eight people with disabilities and two volunteer facilitators, some of whom also have disabilities.  The clubs meet in local bookstores, cafés, and similar gathering places to read aloud and discuss a book for one hour each week.  Much like members of any other book club, NCBC members choose the book they want to read and howthey would like to structure their club.  NCBC members read adapted classic novels (i.e. Little Women and Treasure Island) as well as current, popular literature.

Get Involved in the Next Chapter Book Club
Do you live in Central Ohio?
Is there an NCBC Affiliate in your city?
How can I bring the NCBC to my community?

Jot It Down is a writing club for adults and adolescents with intellectual and developmental disabilities. Following the model of the Next Chapter Book Club, Jot It Down promotes social interaction and full community inclusion for its members. Members of Jot It Down work individually and collaboratively to write stories, poems, letters, MadLibs, and other projects.

Chapters Ahead, Inc. is a nonprofit organization providing training, consultation, and a variety of materials to promote lifetime learning, social interaction, and full community participation for individuals with intellectual and developmental disabilities. We are particularly interested in developing practical strategies and solutions that allow persons with disabilities to become valued and productive members of the community. Chapters Ahead grew from our experience developing and disseminating the Next Chapter Book Club, an internationally recognized literacy program for adolescents and adults with disabilities.

Indy Makes It Easy To Advocate

from DSAIA Digest September 2012: Advocacy Made Easier: 

Down Syndrome Indiana (DSI) is making the most of their 5,000 person attendance at their annual walk to help their supporters become effective advocates. Lisa Wells, DSI Executive Director, started the process by creating a postcard addressed to one of their U.S. senators with information about the A.B.L.E. Bill. "Public policy can be scary if you have never taken action before!," explained Wells. "I thought if the overall goal is to get a congressmen to sign on to a piece of legislation, how can we break that down into a series of baby steps that if taken could have a real impact?"

National Down Syndrome Society's (NDSS) Sara Weir, Vice-President of Advocacy & Affiliate Relations, worked with DSI on the language for the postcards which will be available at the walk for attendees to sign and enter their contact information. "This postcard campaign is a great way for members of Congress to hear from the Down Syndrome community about the importance of passing the ABLE Act!", said Weir. "The ABLE Act remains the highest federal legislative priority for NDSS, so it's important that members of Congress hear from the Down syndrome community about the importance of supporting this legislation. This is a simple way to have your walk participants get involved."

DSI has also included articles in their e-newsletter and on the website, as well as on social media outlets. Wells reported that some volunteers are requesting the postcards in bulk to distribute at their schools, workplaces, and to their family and friends. The group will also have postcards at other upcoming events in which the organization participates. Wells reiterates Weir's sentiments that "it is an easy way for people to take action and make a positive difference." 

Groups who would like to utilize the template can download it here. For more information about the ABLE Act and the postcard campaign, click here.

Gaps in the Map Survey Released by DSAIA, NDSC & NDSS

National organizations partner to help ensure access to support and information 

Down Syndrome Affiliates in Action (DSAIA), the National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) have partnered to ensure that all families have access to support and information from a local Down syndrome affiliate through the "Gaps in the Map" Project. The project's goal is to locate and document all Down syndrome support groups in order to identify what areas are not being served and then explore ways to provide that support to the "gap" areas.

We need YOUR help to make this project a success by doing the following:

1. Complete this BRIEF survey before July 31, 2012 by clicking here.
2. Forward this newsletter to all your friends in the Down syndrome community nationwide! Encourage them to fill out the survey!
3. Tweet and share the survey link with other group leaders via social media!
4. Talk about this project with at least one organization in the Down syndrome community today.
5. Be creative! The more we share this project, the more families will receive the support and information they deserve!

Stay tuned for a variety of fun and cool ways to share this project with your friends and friend organizations. Click here for all the latest project details or visit us on Facebook!

For more information, contact Deanna Tharpe, DSAIA Executive Director, at director@dsaia.org or 701-425-7129 or Allison Wixted, DSAIA Gaps in the Map Chair, at dsagrstepup@yahoo.com or 804-920-9643.