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| CDKL5 Voices | September 2023 |
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On The Calendar!
There is a lot happening for CDKL5 this fall.
See what fits on your calendar! |
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California Family Meet Up! - Join the IFCR in Anaheim, CA, for our final CDKL5 Family Meet-Up of 2023! Happening Sunday, October 29, from 12-4 at Splitsville Luxury Lanes in the Downtown Disney District. Private lanes and gathering area, lunch provided. Click to RSVP for this free event by October 1. |
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Family Education Symposium hybrid (in-person and virtual!) free event is happening on Friday, October 6th at the WashU Med School Campus in St. Louis, MO. 3:00-6:00pm CT. Topics include multi-disciplinary care (with our own Dr. Benke!), finding caregiver wellness, and demystifying g-tube use. Click for details and registration information. |
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Join Marinus for an educational webinar about CDKL5 deficiency disorder (CDD) and ZTALMY featuring a healthcare provider and a caregiver of a loved one with CDD. These programs are designed to support the community by sharing information and fostering connections. Two opportunities remain to participate - Sept 28 and Oct 26. Click to register. |
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CDKL5 Asia conference is happening September 21 and 22 in Tokyo, Japan. In-person and virtual attendance possible. Registration required. Our board vice president, Rick Upp, is attending in-person on our behalf! |
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CDKL5 Researchers take note - the MDBR Pilot Grant Program LOIs are due September 15th! One $60,960 grant available! |
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Are you in the ICCRN Study?
First of all, thank you! This study is SO important for getting CDKL5 ready for the clinical trials of the future!
We know the Longitudinal Phase of the study is complex. Our community has worked hard to secure this $6 million dollar investment from the NIH! We celebrate your commitment to participating!
A few reminders: - Please work with your study coordinator to keep up with tasks related to the study. These include the study surveys and home videos. It is important to complete them in the required timeframe!
- We know traveling to a site can be taxing. We are pleased to have secured (limited) travel reimbursement. Your study coordinator has information about what may be covered.
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Longboard Pharmaceuticals has completed enrollment for their Phase 1b/2a PACIFIC Study for patients with Developmental and Epileptic Encephalopathies (DEEs), including CDKL5. Congratulations to the team for this milestone! |
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Are you interested in helping us spread awareness for CDKL5? We are looking for at least 5 caregivers to respond in short answer format to a few questions related to life with CDKL5. Email Marissa (by Oct 1) for more information - mbishop@cdkl5.com |
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September is our birthday month, and we are celebrating 14 years of service for CDKL5 with 14 reasons to give! Help us celebrate by making a donation of $14 (or more!) in honor of our 14 years for CDKL5!
See all 14 reasons in detail on our social media!
- You Know the Need is Real
- You Believe in Our Mission - to treat and cure CDKL5 deficiency disorder by funding scientific research, while helping affected individuals and their families to thrive.
- You Know Someone
- You're Team CDKL5 - You are proud to be on Team CDKL5 and support the IFCR however you can! We appreciate you more than you know!
- You Follow Us
- You Are Inspired - You see the challenges that living with CDKL5 deficiency disorder brings to those affected (like Skylar, Liv, and Ava who share a September birthday with us - see their faces on our social media!) and you want to do something to help.
- You Know Giving Feels Good
- You Want to Remember Someone Special
- You Want to Feel Empowered - None of us are powerless to make a difference. We can take action every day to create positive change in the world. Do it for CDKL5!
- You Want to Feel Connected
- You are Passionate
- You Care About Rare
- You Know we are Here for Families No Matter What! - We know what it's like to care for someone with CDKL5 deficiency disorder and we aren't going anywhere until our kids have all that they need!
- We Are IFCR - We are ready for another year of advocating for CDKL5 deficiency disorder, funding critical research, and supporting our ever-growing community of families!
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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 support volunteers who are available to offer a listening ear or resources that can help. Email FSR@CDKL5.com. |
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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 families receive direct communication about clinical trial opportunities for CDKL5 and other important information important for families. Join today! |
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