Gather With Community
Events
2024
We hope you will join us in Cleveland (Akron), Ohio June 13-15!
Learn more and register at this link: https://www.cdkl5.com/conference
Held in-person for the first time since 2018, our CDKL5 community is thrilled to gather again to gain the tools and knowledge necessary to care for someone with this rare disease. Our community has grown incredibly since our last conference, and we look forward to educating and updating everyone.
The three-day event will begin Thursday evening with a meet-and-greet social as attendees begin to arrive at our venue – the Hilton Akron/Fairlawn in Akron, Ohio.
Friday is a full day of programming. Sessions are specially curated for families and include education related to common caregiving challenges, the latest in CDKL5 clinical care, and updates on the CDKL5 research landscape. Speakers are leading CDKL5 deficiency disorder researchers and clinicians as well as distinguished educators, therapists, and allied health professionals. Friday evening attendees will enjoy a plated dinner reception and we will continue the tradition of showcasing our children in a tribute video.
Saturday will be a partial day of programming including therapies, topic based panels, and living well with CDKL5 discussions. We will make time for attendees to learn more about our organization and possibilities to get involved as well as opportunities for families to gather.
Join us in June for our 4th annual Move CDKL5 Forward event!
We are encouraging everyone to get out and MOVE all June long. Whether walking, running, biking, or any other movement activity, if you can calculate the miles, it counts!
Last year our CDKL5 community MOVEd 53,000 miles! That’s twice around the world!! This year we have a $22,000 mile match sponsor! Help us MOVE 22,000 miles for $22,000!! We need YOU!
Event landing page coming in April! Stay tuned!
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. For the opportunity to learn more about the moments that matter, register today at this link: https://ztalmyevents.cmgp2p.com/
2023
Saturday, October 14th at Tiguex Park (1800 Mountain) New Mexico
Walk registration at 9:00am and walk begins at 10:00.
Music, food, games, special guests and much more! For more information or booth inquiries, email MUNOZ.CDKL5.NM@gmail.com
Family Education Symposium – This 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.
September 21-22, 2023: CDKL5 Asia “For the Advancement of Understanding and Treatment of CDKL5 Deficiency Disorder” (IRCN Director, Dr. Takao Hensch, IRCN Deputy Director, Dr. Kazuyuki Aihara and IRCN Principal Investigator, Takamitsu Watanabe) will be held at Sanjo Kaikan, The University of Tokyo.
This workshop will bring together scientists, clinicians, and pharmaceutical companies from around the world working on CDKL5 Deficiency Disorder (CDD), along with representatives from patient organizations and CDD families to meet and discuss the latest developments in the field and to advance towards treatments and cures.
Saturday, August 26, 2023
Join the Froy family for their 9th annual Toasting Tanner event in Woodstock, Georgia!
A fun night of dinner, dancing, drinks and raising money for a cure! Buy your (tax deductible) tickets at the link below. $100 per person or $150 per couple! Live auction so bring your friends and don’t miss out on some great items! http://www.tannersjourney.com/toasting-tanner.html
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. For the opportunity to learn more about the moments that matter, register today at this link: https://ztalmyevents.cmgp2p.com/
Save-the-Date: The Ralston family’s 15th Annual “Vivi’s Drive for the Cure” charity golf, BBQ & fundraiser will be held on Friday, July 21 at Chippewa Golf Club in Doylestown, Ohio. 9am Shotgun Start. 18 hole golf scramble. Dinner by Gridirne Cookery. Prizes & Raffle! This event has raised over $320,000 since it began! Not to be missed! Contact: rmralston629@gmail.com
The IFCR is excited to host our 3rd annual “Move CDKL5 Forward” fundraising and awareness event! We are encouraging everyone to get out and MOVE all June long. Whether walking, running, biking, or any other movement activity, if you can calculate the miles, it counts! Last year we had 176 participants move over 15,000 miles for CDKL5! This year, we have an 18,000-mile goal and a generous Mile Match Sponsor to push us to get there! Help us Move CDKL5 Forward and set up your personalized page today!
It has been too long since the IFCR has gathered families in person. Now that restrictions have been lifted, it is time to see each other once again! We are hosting CDKL5 Family Meet-Ups throughout the United States in 2023! We hope you will join us in Massachusetts (April 30), Colorado (June 3), Illinois (June 3), Ohio (July 19), Georgia (Aug 6), Texas (Sept 2), or California (Oct 29)! Information will be forthcoming in our newsletters and on social media!