For me, the highlight of this weekend’s Down Syndrome Affiliates in Action (DSAIA) conference was the presentation is was honored to co-present. For the first time in 18+ months since I first wrote about the racial health disparities that exist in the Ds community, I felt like we might be moving forward.
It has been difficult, as a mom and as an advocate, to keep writing and researching, sharing and asking for support without much response from the community. I have gotten responses from “I don’t believe you,” to “that’s just media spin to ignite race relations.” I’ve been accused of attempting to frighten parents when it’s not necessary. And, I’ve been asked several times to explain why I’m even interested in the subject.
This weekend, I got to stand up, in front of leaders in the Ds community, beside a respected researcher from the National Institutes of Health (NIH) and explain why research is important to me. Dr. Bardhan used the same graph that I’ve used in several blog posts to show the health disparities. She allowed me to explain that research is needed and how DsConnect is a great way to get started.
And, as icing on the cake, Dr. Harpold, the man who started us on this quest, Chief Scientific Officer of a leading Ds research group – LuMind RDS – was in the audience providing moral support.
I’m excited to say that we’ll continue this discussion with sessions at the upcoming 321 eConference.