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| CDKL5 Voices | March 2024 |
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Early-Bird Pricing Ends April 1!
Registration is NOW OPEN for our 6th International CDKL5 Family Education and Awareness Conference!
When: June 13-15, 2024
Where: Cleveland (Akron), Ohio
This event brings together our CDKL5 community of families, researchers, and providers from around the globe. Participants gather together under one roof to learn the most current information about recommended clinical care and therapeutic interventions, as well as the latest on the CDKL5 research landscape.
This in-person event is treasured by our community. There is nothing that can replace meeting face-to-face with CDKL5 experts, learning during the workshops, and spending time developing lasting relationships with other parents, attendees, and all of us at the IFCR.
Early-bird registration ends April 1 so register today! |
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New CDD Research Published!
Your donation dollars at work! New research from the ICCRN team, "Communication of individuals with CDKL5 deficiency disorder as observed by caregivers: A descriptive qualitative study" was recently published. The IFCR funded a subset of the ICCRN team to develop a CDD Communication Measure for clinical trial readiness.
"Understanding how individuals with CDD communicate improves understanding of the condition and will guide research to develop accurate measurement for clinical practice and upcoming medication trials."
There is emerging capability for disease-modifying therapies, such as gene therapy, for CDD and these will be tested in future clinical trials. A critical barrier to strong clinical trial protocols is the lack of a broad complement of validated outcome measures across the spectrum of symptoms. There is currently no validated measure for communication for CDD. |
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Our board president, Karen Utley, recently traveled to Washington DC for "Rare on the Hill" week and she shares her experience in a new blog post. Click to read.
Find previous blog entries under "News & Views" on our website. |
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Move CDKL5 Forward Sponsor Search is On!
Due May 1
Our 4th annual Move CDKL5 Forward event happens in June, but the search for event sponsors is happening now!
- Be an Event Sponsor: Levels start at $500 and your sponsorship is associated with our general Move CDKL5 Forward event.
- Be a Team Sponsor: New this year! Levels start at $250 and your sponsorship is associated with the team of your choosing from one of our CDKL5 Center of Excellence cities! If you are in the Boston, Cleveland, Denver, Houston, Los Angeles, Nashville, New York, Philadelphia, or St. Louis area this option may be for you!
Can you be a CDKL5 Ambassador and help secure sponsors? We have a toolkit for you! We need all the help we can get to make our Move CDKL5 Forward 2024 event as successful as possible!
Interested in sponsoring or helping secure sponsors? Email Marissa (mbishop@cdkl5.com) for details. Thank you for helping us Move CDKL5 Forward! |
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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. |
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Enrolling CDKL5 Clinical Trials
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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Have you joined Connect CDKL5?
Connect CDKL5 families receive direct communication about clinical trial opportunities for CDKL5 and other information important for families.
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