Hello CdLS Family,
I was in beautiful Sienna, Italy, for International CdLS Awareness Day.
I presented at the Disorders of Chromatin & Transcriptional Regulation Symposium on your behalf on International CdLS Awareness Day. I shared with the scientists how important it is for them to share their findings with each other to help connect the dots. I helped them understand that real people and families were counting on them to work towards treatments that improve the quality of life for their loved ones.
I had a chance to share both the beauty of children and adults with CdLS and your challenges as parents and caregivers. The talks from me and the other parent advocates were well received. Researchers were in awe of your ability to navigate the terrain of rare diseases driven by your love for your children.
Thank you for all your efforts to help us continue to raise awareness about individuals with CdLS and this rare syndrome.
Many families that have contacted us in the last several years have children who are newborns to toddlers. This indicates that the diagnosis journey is getting shorter as families learn about the diagnosis earlier. It also shows that testing is becoming more available to families enabling them to get a diagnosis for their child earlier.
Your continued support in raising awareness and essential funds is heartwarming.
We thank you for sharing with us and the public at large. It all matters.
You are living the most extraordinary lives! The staff, sister CdLS organizations worldwide, and I are determined to stand with you and continue to amplify your stories.
With love & gratitude,