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| CDKL5 Voices | February 2024 |
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Conference Registration is Open!
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. |
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Congratulations Dr. Maurizio Giustetto, 2023 Million Dollar Bike Ride Awardee!
The Million Dollar Bike Ride (MDBR) is an annual event hosted by the Penn Medicine Orphan Disease Center (ODC). It is an incredible opportunity for rare diseases like CDKL5 Deficiency Disorder because the ODC matches funds raised by nonprofits like ours.
It was announced in January that $60,960 was granted to Dr. Maurizio Giustetto to continue his work on CDKL5. To learn more about the funded research, please click to read our latest blog.
We would like to thank IFCR's Team CDKL5 Riding for a Cure, led by CDKL5 mom Kristin Kozera, for their continued fundraising efforts for MDBR and for getting out to ride year after year. If you'd like to join the ride in June 2024 you can learn more at this Team link or email Kristin (kkozera@cdkl5.com). |
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GEMZ Study Video
"Overview of GEMZ Clinical Study in CDKL5 Deficiency Disorder"
The GEMZ Study is being conducted to learn more about patients with CDKLS deficiency disorder (CDD) and to find out if the study medication fenfluramine hydrochloride can reduce the seizures in patients who have a confirmed mutation in the cyclin-dependent kinase-like 5 (CDKL5) gene which is thought to be causing their disease.
You can hear about the GEMZ study in this video overview featuring Dr. Raj Rajaraman, clinical lead at our CDKL5 Center of Excellence at UCLA Mattel Children's Hospital. |
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Rare Disease Day 2024 is a special one because it falls on the rarest day there is - February 29! On this day, we raise awareness for the 300 million people living with rare disease worldwide, including our loved ones with CDKL5 Deficiency Disorder.
- If you would like your child's photo included in our Rare Disease Day 2024 video, please upload it here by February 22.
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Move CDKL5 Forward Sponsor Search is On!
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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