CDKL5 Awareness Day

Floor Speech

Date: June 17, 2013
Location: Washington, DC

Mr. WENSTRUP. Madam Speaker, I stand before you today to tell you about a rare disorder known as CDKL5.

Today, June 17, is CDKL5 Awareness Day. This genetic disorder was discovered by genetic markers in 2004. Those impacted usually suffer from seizures and rarely, if ever, walk or talk.

My niece, Catie, is one of only 600 known cases in the world. When Catie was born just 5 years ago, only 200 children had been diagnosed with CDKL5 disorder. Due to the recent discovery of this condition, and its resemblance to Rett Syndrome, epilepsy and autism, it's likely that there are many children who have been undiagnosed or misdiagnosed.

Families are forced to turn to the Internet and the community of parents because even doctors know relatively little about CDKL5. Unfortunately, at this time there's no cure, only hours of therapy, and for many, traveling long distances to specialists. Fortunately, CDKL5 research is taking place.

The children impacted with CDKL5 disorder cannot talk to you about their condition, so the responsibility falls to us to raise awareness.

My family learns something from Catie every day. It's my hope that we can continue to learn more for Catie and the other young people impacted by CDKL5 disorder.