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Washington Post: Crnic Institute Trials Helping Patients with Down Syndrome Regression Disorder “Wake Up”

For many families, the threat of Down Syndrome Regression Disorder (DSRD) feels harrowing and constant. Gratefully, two scientists are leading the charge to understand and treat this heartbreaking condition, and thanks to one relentless mom/advocate, they’re working together.

Crnic Institute Executive Director Dr. Joaquin Espinosa and Children’s Hospital Los Angeles Director of Neuroimmunology had no idea they had been developing complementary research on DSRD until mom Linda Roan of Boulder, CO connected the dots for them. The two scientists joined forces to create the first-ever randomized clinical control trial to treat DSRD and secure its funding through NIH’s INCLUDE initiative.

“You hear the phrase ‘it takes a village’ a lot,” says Linda, “Global has been the leader in the village that has put recognition, funding, and advocacy for Down Syndrome Regression Disorder on the map.  Global’s lobbying and funding for DS research has made all the difference.  Miah is doing well largely due to the Crnic Institute, and we wouldn’t have Crnic without the vision of Michelle Sie Witten and Global.  I can’t thank them enough.”

“So many people helped me get better,” Miah shares, “My mom says that Global, who puts on the dances I love, is the same group that has made a big difference in helping my brain.  I really want to thank them.”

GLOBAL is so proud to support this brilliant work that is helping so many of our loved ones finally “wake up” again after descending into regression. We are just as proud to fight for the continued funding of INCLUDE, which makes life-saving research and clinical trials possible.

Read the full Washington Post article.

Learn more about this groundbreaking clinical trial.

 

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