We were thrilled to host our 6th CDKL5 Family Educational & Awareness Conference this past June. Our theme, Keep Rockin', was a tribute to our host city of Cleveland (home to the Rock n' Roll Hall of Fame) and a salute to families living with CDD. It speaks to the resilience of our community and the intent to keep moving CDKL5 forward.
We have no choice but to keep rockin' - to keep learning, keep advocating, and keep loving our children every single day.
We welcomed attendees from eight countries and 21 different states! Many families came as a unit bringing their children to enjoy Sibling Camp or the hotel amenities. This was the first time that many families met others affected by CDD. They became fast friends!
Please have a look at our post conference summary and keep an eye on our YouTube channel where we will be uploading session recordings on a rolling basis.
Attendees, we'd love your feedback! You should have received an email last week with a post-conference survey. If you need it sent again, please email Marissa at mbishop@cdkl5.com.
New on the Blog: ICCRN Celebrates CDKL5 Family Participation in Critical Clinical Trial Readiness Work!
At the IFCR's 6th CDKL5 Family Educational & Awareness Conference, attendees heard Scott Demarest, MD, Children's Hospital Colorado, share the latest update on the important work being done by the International CDKL5 Clinical Research Network (ICCRN) through their NIH-NINDS funded U01 grant.
After being treated with ganaxolone for two
years, most patients continued to have fewer
seizures and fewer days with seizures,
supporting the idea that ganaxolone continues
to be effective over a longer period time.
There were no new safety concerns with the drug.
Exciting News for DEEs!
Congratulations to our friends at Longboard Pharmaceuticals! The FDA has granted bexicaserin Breakthrough Therapy designation for the treatment of seizures associated with Developmental and Epileptic Encephalopathies (DEEs). This is the first time the FDA has formally recognized DEEs as an indication. CDKL5 Deficiency Disorder is a DEE. Read the press release.
Come Chat with Us!
Join us on Wednesday, July 31 for a "CDKL5 Chat" in the evening hosted our Family Support Rep program. This is an informal, virtual gathering. Pop in and out as needed! We know how unexpected this life can be. We would love to see you!
We know how hard life with CDKL5 can be and we are here for you whenever you need us.
Would you like to speak with a fellow CDKL5 parent who knows what you're facing? We have peer caregiver support volunteers who are available to offer a listening ear or resources that can help.
Does your loved one with CDKL5 have a sibling? Request a "VIP Sibling" kit for them! This program helps celebrate rare epilepsy siblings for the unique experience they have.
Did you know? Our website is a great place to learn what clinical trials are enrolling for CDKL5!
There are opportunities for interventional trials as well as clinical research, including ways to participate in CDKL5 research from your home, anywhere in the world!
This information and even more can be found on our website. Check back frequently for updates as new opportunities emerge!
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