June is CDKL5 awareness month. We would love to have you join Team Aiyana as we fundraise to help IFCR (International Foundation for CDKL5 Research) "Move CDKL5 Forward".

Our daughter Aiyana was diagnosed with the rare disorder, CDKL5 when she was 7 months old. There is currently no cure for this devastating disorder. Aiyana's beautiful smile hides the daily struggles that she's endured for the last 8 years. She struggles with daily seizures and has suffered more than 20,000 seizures in her life. She has had more hospital stays and procedures than most of us would typically have in our lifetime. Her days are often filled with therapies and doctors appointments. Through it all, Aiyana bounces back with a smile. Our goal has always been for Aiyana to have the best quality of life. Research is vital to hopefully seeing a cure one day, and every dollar raised will help not only Aiyana, but all other kids impacted by CDKL5!

Over the years our family & friends have hosted multiple fundraising events starting with Poker Tournament - Aces for Aiyana, Jamberry Nails - Let's NAIL this for Aiyana, and last four years with - I Golf FORE Aiyana , raising over $50,000 to support IFCR's efforts in research for cure and treatments.

Please help us reach our goal of raising $10,000 this month!

How does it work?

1 - It's easy to join us! If you don't want to keep track of miles, you can make a donation right here on my page. How much? Whatever amount you donate, large or small, please know that it will go a long way to help find a cure for this devastating disorder.

2 - If you love to be out and about, June is a great month to Get out and MOVE! Want to 5K? Great! Go for a bike ride? Awesome! Get out for a leisurely walk? It's all good! Please post your activities on social media with the hashtag #CDKL5Forward to help spread awareness!

IFCR has a goal of 5,000 miles moved and $50,000 raised for CDKL5 this June and it will take all of us to get there! Everything you need to know including links for a printable mileage tracker , event tshirt information and the mileage submission form is at CDKL5.com .

The top 10 fundraising Teams will be featured in real time on CDKL5.com. Please help us reach this milestone!

Thanks for supporting Team Aiyana and helping to Move CDKL5 Forward!