Have you started your fundraising page for our biggest awareness and fundraising event of the year? If not, there is still time! Set up your page and help us to MOVE CDKL5 Forward! Follow the link below to sign up!
We are still accepting sponsorships as well! The form can be found here!
Thank you to the "Early Bird" participants for starting your pages! Your gift is on the way!
💚What is Move CDKL5 Forward? It is a month-long virtual movement, awareness, and fundraising event. A time for our CDKL5 community to rally together to spread awareness for CDKL5 Deficiency Disorder and to raise needed funds for the IFCR.
Throughout the month of June we will be sharing quotes and pictures submitted to us from Move participants and posting them on our social media. If you would like to share a quote about why you are participating, please email us at ifcr@cdkl5.com or DM us on social media. If you can also include photos and short videos of you, your team, and child MOVING for the campaign, that would be great! Please include your name and location (city or state).
(By submitting content you agree that IFCR can use your submission on our social platforms and promotions.)
Research Award for Dr. Tim Benke
Many of you know Dr. Tim Benke as a clinician and medical expert treating CDKL5 patients at our Denver Center of Excellence. But did you know he also has a lab dedicated to CDKL5 research? We are excited to announce IFCR funding for a project that will help Move CDKL5 research Forward!
DEEp Ocean Study: This study will evaluate bexicasering (LP352), an investigational product for the treament of seizures associated with developmental and epilepsy encephalopaties.
Lundbeck (formerly Longboard) is doing an amazing job of easing the burden on participating families and helping break down barriers to access, including travel support for up to three caregivers (nurse/family). They are also providing whole genome sequencing for interested participants.
NYU Seizure Classification Study:
Reminder: Dr. Devinsky's seizure classification study is now accepting submissions from a few families who only have video footage of seizures (without the video EEG confirmation). If you are interested in sharing your home recorded videos in a safe and compliant way to help this study on seizure classification, click the link below and select "NYU Lagone Health Study..." for more information.
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.
