The Family Meet-Ups in 2023 were such a hit, we are planning to do them again this year! There is nothing like meeting in person and having time together as a CDKL5 Family!
We are in the planning stages now, and if you would like to host or attend please register at the link below!
In 2023 we had variety of events and venues, including minor league baseball games, bowling, Top Golf, Great Wolf Lodge, Morgan's Wonderland, and a beautiful park! We cannot wait to see where the events will be this year!
Our 5th Annual Move CDKL5 Forward event happens in June, and the search for sponsors is on! This is our biggest fundraising event of the year and a great way for you to participate in raising funds and awareness for CDKL5 research and treatment!
In our next newsletter we will give you information on how to create a personalized page on our new fundraising site, where you can prepare to collect donations and log miles. But right now we are looking for "ambassadors" to help us secure local sponsorships for this amazing virtual event! Sponsorships can come from individuals, families, or small businesses.
Do you want to be an ambassador and help? We have a toolkit to help you identify and sign up sponsors! You can download and print the toolkit from the link below.
As always, feel free to reach out to us at fundraising@cdkl5.com with any questions! We need help from everyone to make the 2025 Move CDKL5 Forward event a success! Thank you for helping us Move CDKl5 Forward!
Dr. Tim Benke was kind enough to spend some time with Karen and provide a brief update to the ICCRN U01 Study. The ICCRN Team and all of us at the IFCR know this clinical trial readiness project would not have been possible without the participation of the wonderful families in our community. Take a minute to read the short blog and listen to the update at the link below!
Please visit our website at the link below to learn about current research opportunities. These range from clinical trial opportunities for medications to observational studies designed to advance knowledge and treatments for CDKL5 Disorders.
