Advocacy around research is important, especially because Down syndrome is the least funded genetic condition by the National Institutes of Health (NIH).
When bad things happen to good people, we have two choices. 1) Get angry, condemn the perpetrator and move on. 2) Take a hard look at the systemic problems that allowed the perpetrator to get away with it in the first place and work to create change.
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.
Today we celebrate the 50th birthday of a pioneer in Down syndrome advocacy. Chris Burke became famous with his role as “Corky” in Life Goes On – but he didn’t stop there. His music and his message have been a source of hope for so many – especially those in the generation that grew up with him.