Gather With Community
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: email@example.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!
See you soon!