We are excited to announce our Move event will be hosted on a new fundraising platform. We think you will find this platform, called Raisely, much easier to use. There were some challenges last year with the links to Strava, etc., and this should resolve those issues!
On April 30th, the information to create your fundraising page will be sent via email and shared on social media. Set your page up before May 15th to receive an early bird gift! We think everyone can enjoy the gift we selected this year!
💚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.
2025 Family Meet-Up Update
Thanks to all of you who responded to last month's newsletter expressing interest in the Family Meet-Ups! We are finalizing these events. Watch upcoming newsletters and social media for updates on dates, locations and registration information!
Meaningful Change Project Update!
We all want to see significant improvement in our kids' conditions. But when you ask CDD parents what meaningful improvement would actually be, you get a surprisingly wide range of responses. This makes it hard for clinicians, researchers, and regulatory agencies like the FDA to asses whether a given treatment is actually effective. In partnership with the IFCR, The Kids Research Institute of Australia recently embarked on an effort to help clarify what meaningful change means and what types of improvements parents value most. Click below to watch the short summary video by Kids Research Institute professor, Dr. Jenny Downs.
In December, Ed Fennel, lovingly known by many of us as "Poppy," shared an update on exciting work he was doing in the communications and technology field. We had promised a more detailed blog update, and we are happy to share it in this newsletter! Take a minute to read more about this work!
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:
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.
