Understanding
Okur-Chung Neurodevelopmental Syndrome
Our President Speaks at the California Rare Disease Caucus
Last week our President, Jennifer Sills, shared her daughter Jules’ story at the California Rare Disease Caucus at which assembly members were present. Thank you to CAL RARE and Angela Ramirez Holmes for giving her the opportunity to share how COVID is affecting those with rare disease. The hearing video is on their website:
www.calrare.org
You can hear our president at around minute 21.
Here is an excerpt from her testimony:
“She has to work hundreds of times harder than the average child to reach milestones in her 11th year of life that many children reach in their first year of life. For example, in the last year she has started to call me Mama. And as her Mama, I am here today to say that particularly in a pandemic we must work together to find a way to ensure our most vulnerable populations continue to have equal access to education and therapy services and do not become an afterthought. We need to make sure they continue to move forward and do not permanently go backward.”
#OCNDS #csnk2a1 #HopeIntoAction #strongertogether #raredisease