to see CDKL5 and the ICCRN's outcome measure study highlighted during the symposium presentation at the American Epilepsy Society's Annual Meeting earlier this month!
Dr. Walter Koroshetz, the director of the National Institute of Neurological Disorders and Stroke - NINDS (part of the NIH) recognized the ground-breaking work being done by the ICCRN team. We are so proud of how our clinical network is blazing the trail! Their study is the first of its kind supported by the NIH/NINDS in the field of developmental and epileptic encephalopathies!
We shared earlier this year that the study's initial phase ("1 of 200") has successfully been completed and the longitudinal phase is currently in progress. This is thanks to the dedication of CDKL5 families who travel to our Centers of Excellence to participate! Your efforts are truly making a difference for CDKL5!
Treatments, like gene therapy, need outcome measures to show if they are really helpful (or not). This is important work for CDD!
Some other highlights this year:
Thanks to generous sponsors, we hosted seven CDKL5 Family Meet-Ups around the US this year! Such fun was had!
Our community moved over 53,000 miles (twice around the globe!) during June for our annual Move CDKL5 Forward event, exceeding our mileage and fundraising goals!
We funded new research through our partnership with the Orphan Disease Center (details to be released soon!). Thanks to our Team Riding for a Cure for cycling for us!
We added two new CDKL5 Centers of Excellence this year, expanding where families can go for CDKL5-specific clinical care.
Planning has begun for our 6th International CDKL5 Family Education and Awareness Conference. Save the date of June 13-15. We will gather our CDKL5 community of families, clinicians, and other stakeholders in Cleveland, Ohio.
We are working hard to bring more good days to families facing CDKL5 deficiency disorder, but we cannot achieve our goals without the financial support we receive from you. If you have donated during this most recent season of giving, thank you. You are truly making a difference for CDKL5. If not, please make your end-of-year gift today!
From all of us at the IFCR, we hope you enjoy a safe and healthy holiday season, and we send you our warmest wishes for a happy new year!
