DSAGSL at the Affiliates in Action conference

Learning is the beginning of wealth. Learning is the beginning of health. Learning is the beginning of spirituality. Searching and learning is where the miracle process all begins.

Jim Rohn

DSAGSL was fortunate enough to send two representatives to this year’s Affiliates in Action conference in Cincinnati. Aside from what the city itself had to offer – Skyline chili!  Graeter’s ice cream! – we walked away with a wealth of information, not to mention a great impression on the health of DSAGSL.  (And to Cardinal Nation, I assure you that we didn’t step within five blocks of their baseball stadium.)

Dance party time at AIA! A great time was had by all of the attendees on Saturday night during the conference.

Our delegation attended sessions throughout the three-day event, and gained a ton of insight about how we can work more effectively with our members and how we can be a part of what’s happening nationally to benefit individuals with Down syndrome. If there were several themes among everyone we spoke to, they were:

  • Progress – As we’ll share below, a number of groups are making strides in research and contributing to longer, more productive lives among the Ds population.  It’s a great story so far, but of course we have a lot of work left to do.
  • Collaboration – The good news is that there are many “doers” in the Ds community. The bad news is that we’re often duplicating our efforts, or in conflict about which method or idea is best. It seems several organizations are stepping up to bring people together and focus solely on making progress, which is definitely a good thing.
  •  Advocacy – Research is great, as are communication and idea sharing. But we all recognize there is more to do, and that is made possible by groups like DSAGSL and people like you continuing to raise awareness and pushing for more awareness, funding and support for Down syndrome.

Below is a sampling of the people and information we encountered. In addition to these presentations, there are a couple dozen others that we have at our office.  Contact us if you see a topic not covered here – we would love to share what we know and help you learn more!

  • Diagnosis to Delivery – Outlines many of the prenatal resources available to families to ensure the best possible information as a family begins its journey.  (Note: There is much discussion right now about which book is best or which philosophy is best. DSAGSL maintains a commitment to finding the BEST information for a family and for an individual, knowing that the best info may mean something different to each family.) See the presentation – click here
  • Seeking Home for Children with Ds – The rate of families who forge ahead with their child after learning of a diagnosis is increasing.  Groups like the National DS Adoption Network are also doing great work to ensure bright futures for children blessed with an extra chromosome. See the presentation – click here  
  • Research – As mentioned earlier, several organizations are stepping to the forefront.  DS Research and Treatment Foundation shared very good information on cognition, and the Global Down Syndrome Foundation also shared their latest findings regarding research and especially the connection to Alzheimer’s. See the presentations – Down Syndrome Cognition Research / Connection Between Alzheimer’s and Down Syndrome
  • Health Care – As the landscape of health care changes, in large part due to the Affordable Care Act, it’s important to know how it affects you. This presenter, based in Wisconsin, notes the impact of ACA on a national scale in addition to his home state. See the presentations – click here
  • Advocacy and Outreach – So many great presentations on this front! From NDSS sharing about governmental advocacy, to learning more about reaching minority populations, to tips on speaking to your child’s classroom, there is much to learn about using your voice to make sure people are truly aware and informed about Down syndrome. See the presentations – Make a Difference Through Advocacy / How To Talk To Classrooms of All Ages / Strategies for Outreach to the Hispanic Community

In looking back at the quote that started this post, the process of searching and learning was extremely productive and we’re glad to put this information to work for you.  Our staff is always glad to help you or take part in a presentation in your community, or to connect you with a resource that helps other to be more aware and appreciative of Down syndrome.  Most importantly, we’re excited to use what we’ve learned to improve how we serve the many miraculous and inspiring individuals with Down syndrome in our area.

PS – Two quick commercials if you’ve read this far:

  1. Please take the time to join us on Saturday for our 2013 Family Conference.  Our volunteers and staff have brought in our best speaker lineup yet, and it’s a great time to learn more about transitions – no matter what age your loved one may be.
  2. Registration for the 2013 Step Up for Down Syndrome walk is now open!  We have a VERY big goal in our sights and we need your help to get there!  Team leaders are encouraged to join us at the St. Louis Arc (1177 N Warson Rd, STL 63132) at 7:00pm on March 13 to learn more about this year’s walk and how your team captain can be a TV star in this year’s SUDS commercial.  See you there!

Jeremie Ballinger
DSAGSL, Executive Director