Today, June 17, is World CDKL5 Day. It's a special day for our global CDKL5 community as we come together to spread awareness about our rare disease.

What makes June 17 special? That answer lies in our history.

Leita Boltwood was a founding member of the IFCR, and three of her children (two girls and a boy) have been affected by a CDKL5 mutation. It was her foresight and dedication to finding the underlying cause of their challenges that led to the discovery of the CDKL5 disorder. Her two daughters, Bree and Asha, are still living, but her son Glyn passed away on June 17th, 1997. Click to read their story.

Throughout June, our CDKL5 community works to raise awareness of CDKL5 Deficiency Disorder - the challenges faced, the need for improved treatments and supports, and the faces of our children who are so deserving of a brighter future.

But awareness only makes an impact when it is followed by action.

Will you take action for CDKL5 today? Please donate to our ongoing June fundraising event Move CDKL5 Forward. Better yet, make your page and help us fundraise! We are at $54,000 of our $100,000 goal. We need you!

We are working hard turning hope into action for CDKL5. Join us.