harassment encouragement, I entered the blogosphere to document the delightful (or otherwise) and unexpected moments of my younger daughter's life. Hannah was born in 1998. She surprised us with her extra chromosome, and continues to surprise us with her humor, intellect and obstinacy. She takes our breath away. As my elder daughter once wrote, when Hannah was born, our family went from ordinary to extraordinary.
March 1, 2009
Home Sweet Home
I didn't manage to post about my trip to the AIA Conference in Washington DC, so now I get to do it after the fact! I was sent to the conference by our local support group, The Down Syndrome Association of Greater Richmond. It was great! Some of my favorite researchers and Ds supporters were there--Dr. Bill Mobley and Dr. Brian Skotko, as well as lots of other presenters. The conference was for affiliate Ds groups to connect and communicate with one another--what's working, what isn't and what is coming down the line. The DS Guild of Greater Kansas City created the Affiliates in Action conference three years ago. This year it was sponsored by the National Down syndrome groups (Society and Congress), and my favorite, the DSRTF. The new Linda Crnic Institute for Down Syndrome (in Colorado) also sponsored the conference.
The big news is that the NDSS has changed its mission and strategy. The old mission was to support education, advocacy and research. Now it's "to be the national advocate for the value, acceptance and inclusion of people with Down syndrome." They are focusing on Public Policy. They have also produced some public service announcements that Regal Cinemas will be showing nationwide.
The other NDSS news is that they are revamping some of their policies regarding the Buddy Walk program. They will now have a licensing agreement that requires a 7% net donation to go directly to NDSS. I personally do not have any problem with this--but there were many at the conference who were infuriated. Keep in mind that many groups did comply with the "requested" 10-30% of net donations, but others would send NDSS only $500, or nothing at all. I don't want to get into arguments about this, but it seems to me that 7% is a reasonable amount.
I missed the most exciting part of the conference though--I couldn't get child care for Thursday, so I didn't get to go to the Capitol to meet Congressmen/women and Senators to discuss the Down syndrome Caucus and other issues relevant to the Ds community. By all accounts, those who went had great success.
The first evening I happened to walk past a line for hors d'oeuvres and someone saw my name tag and stopped me. It was my online friend Kathy R from the Michiana Down syndrome group (Northern Indiana and Southwest Michigan)! We had never met in person, but used to correspond about our kids with Ds. Her son, Danny, is the same age as Hannah, and they homeschool as well. It was fun to meet her in person. I met many other new friends, from all across the nation, and some from Canada as well. I went to dinner with new friends from the DSA of Charlotte, NC, and also hung out with one of the researchers from the DSRTF. It was a great experience.
I've been to many many Down syndrome conferences and symposiums. If you have someone in your family with Down syndrome, I highly recommend that you attend at least one national conference--you'll come away excited and energized (well, after a good night's sleep in your own bed).
I had been hoping to meet up with some of my old college friends who live in the DC area, but the timing didn't work out. I think I'm going to have to plan another trip to DC just hang out with them! And meet up with my legislators...
Labels: Down syndrome, DSRTF, NDSS
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Thanks for stopping by my site. I wish we could have met at the conference. What a small world. I didn't get home until late last night. I am going to post about my trip tonight. I will bookmark your site and stop by again. It was amazing and I am so glad that I was able to go.
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