Gather With Community
Events
2026
The 2026 CDKL5 Family Educational Conference is a transformational three-day event hosted by the International Foundation for CDKL5 Research—bringing together families, clinicians, researchers, industry partners, and advocacy leaders from across the globe. Built for the realities of life with CDKL5 Deficiency Disorder, the conference supports the entire lifespan and the entire family, recognizing the unique needs of CDKL5 families at every age and stage, from the youngest newly diagnosed children to adults navigating long-term care.
Read more and see the details here.
Ready to register now? Click here!
Your loved one may qualify for participation in this clinical trial if they
- Are 2 through 65 years old
- Have received a diagnosis of a DEE caused by genetic mutation and/or syndrome diagnosis (This includes CDKL5 genetic diagnoses)
- Have at least 4 motor seizures (seizures that involve movement) in the 4 weeks prior to screening
To learn more, you can read the study flyer here.
Additionally, you can visit the study website.
Join us for a Rare Disease Day webinar: ELJ-101 update for CDD 💙✨
CDD families & caregivers are invited to “Update on ELJ-101: A gene therapy for CDD” — a live virtual Zoom webinar with the latest on the ELJ-101 gene therapy program, including what’s coming next.
This is Webinar 1 in our 3-part 2026 series: “From Science to Hope: Walking the Path towards CDKL5 Gene Therapy,” created with the Global CDKL5 community.
🕒 Time
• UTC: 2:00–3:30 PM
• Regional:
o US/Canada Eastern (EST): 9:00–10:30 AM
o LATAM: 9:00–10:30 AM Peru (PET) | 11:00 AM–12:30 PM Brazil (BRT)
o UK (GMT): 2:00–3:30 PM
o Europe (CET): 3:00–4:30 PM
o MENA (GST): 6:00–7:30 PM
o APAC (SGT/HKT): 10:00–11:30 PM
✅ Register here.
The Global CDKL5 Community Webinar #1 – Update on ELJ-101: A gene therapy for CDD
⏳ Registration closes: Feb 28 at 9:00 AM (UTC)
🌐 Translated captions: available (36+ languages)
🎥 Recording: posted online one week after (link to be sent to all registrants)
❓ Webinar questions: submit in advance via the registration form, or ask during the live Q&A.
📩 Registration/access questions: email ifcr@cdkl5.com
2025
We are so excited to be planning family meet-ups again this year! We want to thank our generous donors for making this possible without the use of any hard-earned fundraising dollars! We also want to thank our host families who are putting these together. We’re still finalizing details on some of these, but full information will be sent to anyone who registers. Each meet-up will include time for fun, socializing, and food to eat!
We will be hosting meet-ups in the following states:
California, Colorado, Florida, Georgia, Ohio, Texas
*Continue to watch for updates, as details will be added along with possible additional meet-ups.
Click here to learn more about the individual events and register today!
We are excited to offer the 2025 From Surviving to Thriving as a 100% virtual workshop! One of the highlights of the IFCR’s family conference last June was Brad Thompson’s session focusing on self-care and mental well-being. Due to the overwhelmingly positive response, we have partnered with the Child Neurology Foundation and Brad to offer a full-length version of his workshop, exclusively for CDKL5 families. This 100% virtual training will take place over six weeks, with some work at your own pace activities and three virtual sessions for discussion.
- Registration fee $10
- Limited to 30 participants, so do not delay in signing up!
We are excited to offer these meaningful opportunities and look forward to continuing this journey of thriving together in 2025!
Click to see a detailed description, and register below!
Key Dates For the Workshop:
Week of January 20th: participants complete Module 1 “on your own” activities
Week of January 27th: participants choose one, live Zoom session to attend from the list below
Monday, January 27th at 7:00 ET
Tuesday, January 28th at 8:00 ET
Wednesday, January 29th at 1:00 ET
Week of February 3rd: participants complete Module 2 “on your own” activities
Week of February 10th: participants choose one, live Zoom session to attend from the list below
Monday, February 10th at 7:00 ET
Tuesday, February 11th at 8:00 ET
Wednesday, February 12th at 1:00 ET
Week of February 17th: participants complete Module 3 “on your own” activities
Week of February 24th: participants choose one, live Zoom session to attend from the list below
Monday, February 24th at 7:00 ET
Tuesday, February 25th at 8:00 ET
Wednesday, February 26th at 1:00 ET
*If the registration fee is prohibitive, please reach out to us at IFCR@CDKL5.com)
Let us kick off the new year together as a CDKL5 family! Join us for a virtual gathering where we can celebrate and connect. Bring your favorite cocktail or mocktail, a snack or recipe to share, and feel free to share any tips or activities you and your family use to unwind and navigate the challenges of living with CDKL5. This event is all about having fun and relaxing together –silly hats are encouraged, but not required. Mark your calendars for 8pm ET, January 8th!
2025 CDKL5 Conference will be in Rome, Italy
Click to see event flier. The organizers will cover the cost of meals and 40% of the price of the rooms. Once they receive your intention to join, they will send you more details. Remember that 2025 will also be the year of the Jubilee for the Catholic Church Rome and it will be very busy so they suggest you decide as soon as possible whether to attend the conference and proceed with booking your trip.
If you plan to attend, please complete this form no later than September 30, 2024.
This event is organized by CDKL5 Insieme Verso la Cura (Italy) in collaboration with CDKL5 Middle East and North Africa – MENA
2024
Join the Froy family for the 10th Annual Toasting Tanner Fundraiser! $100 for 1 ticket or $150 for 2. Each ticket includes and evening of dinner, dancing and drinks. Special wine tasting event! Silent auction!
Saturday August 24th, 2024 | 7-11pm
Hungry? Stop by Big Boy for sliders, sides, & more! Tell them you are there for the fundraiser and Big Boy will donate 15% of your bill!
When: Wednesday, August 21, 2024 | 4pm to close
Where: 37123 6 Mile Road, Livonia, MI
Stop by Fairway Farms Swim Club on Sunday, August 18 from 11:30-4 and get some yummy baked goods to help support the International Foundation for CDKL5 Research-IFCR in honor of Evie!
Beat the Heat: The Wizard of Oz – Head on over to the Athena Cinema for a showing of this true classic of American cinematic history! Admission is a monetary donation to the IFCR. This event is being held in honor of Reid Berger ❤️ Click to learn more.
Saturday, June 29 | 3:00pm
Athena Cinema (20 S Court Street, Athens, OH)
Are you in the Arlington Heights, Illinois area and want to meet up with other families? Join in for a CDKL5 awareness walk around beautiful Lake Arlington. Come walk (and roll!) for all the children who need a cure.
When: Saturday, June 29, 2024 | 1:30pm
Where: Lake Arlington, Arlington Heights, IL (look for the green balloons)
Join the Ralston family for Vivi’s Drive for the Cure! their annual charity golf, bbq, & fundraiser at Chippewa Golf Club, Doylestown, OH. Gift basket raffle! Now in it’s 16th year, this amazing event has raised over $330,000 since 2009!
9:00 Shotgun Start (check-in by 8:30 – donuts / coffee / $5 bloody Mary bar)
18 hole golf scramble
Lunch & beverages provided at the turn
BBQ Dinner by Gridirne Cookery
Event held rain or shine
For more information contact Ron & Melissa Ralston (rmralston629@gmail.com)
Bounce House! Ice Cream! Magician! Face Painting! Music and more!
Come walk a mile on the track and hang out and have some fun! Hosted by two local CDKL5 families, if you are around the Massachusetts area you don’t want to miss this opportunity to meet up!
When: June 22, 2024 | 1-4pm (walk is at 1:30)
Where: Grafton High School athletic field (24 Providence Road)
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!
We have BIG GOALS! 22,000 miles moved and $100,000 raised!
We have a $22,000 mile match sponsor! Help us MOVE 22,000 miles for $22,000!! We need YOU!
What: Dine-In and Donate (April 16) and Family Meal Fundraising Week (April 14-21)
Where: Positano Restaurant and Pizzeria – 245 Berdan Ave, Wayne, NJ, United States, New Jersey
Many thanks to the Grossman/Villatoro family for organizing these two delicious fundraising opportunities!
April 16 – 20% of all orders placed will be donated directly to the IFCR. Can’t make it to dine on that day? Order a family meal for pick-up or delivery any day from April 14-21 and mention Skylar/CDKL5!
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!