Join Us for Our 7th Family Educational Conference
June 18th-20th, 2026
Igniting a Revolution
in CDKL5 Research & Care
Philadelphia, PA
About
Igniting a Revolution in CDKL5 Research & Care
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.
From early diagnosis and childhood care to the complexities of adolescence and the critical transition to adulthood, our sessions provide expert guidance across medical, therapeutic, and daily care needs. You’ll also hear the latest scientific updates, discover new tools for day‑to‑day caregiving, and engage directly with industry partners. Opportunities to participate in focus groups and biosample collections help move the field forward—giving families a direct role in accelerating progress.
We also have a fun sibling camp planned again this year for siblings ages seven and older! Siblings will enjoy a fun day together that’s all about them! On Friday morning, they will spend time socializing as a group and get to know each other. Then it’s off to Funzilla for 3 hours of active fun, including Go Karts, Ninja Obstacles, Air Bag Jump, Arcade Zone and more! Round trip transportation and lunch are included, thanks to our Sibling Camp Sponsor, UCB! Chaperones will be with the group to ensure the day is safe and fun for all.
What to Expect
Agenda
Thursday morning and afternoon: Prior to the official start of the conference, some industry partners will be holding focus groups to hear directly from families about lived experiences and priorities. These focus groups are invitation-only. You can express your interest in participating when you fill out the registration form.
Thursday Evening: Registration opens; Welcome Reception
Friday: Sessions, Sibling Camp, and Evening Tribute Dinner
Saturday: Sessions; conference close around 3pm
Getting There
Location
The 2026 CDKL5 Family Educational Conference will be held in the Philadelphia area at the Sheraton Bucks County Langhorne, located just 35 miles from the Philadelphia Airport (PHL), 25 miles from downtown Philadelphia, and 10 miles from Trenton Mercer Airport.
Rooms are available at a discounted rate as part of the IFCR room block when booked by May 19, 2026.
Sheraton Bucks County Langhorne
- 400 Oxford Valley Rd, Langhorne, PA 19047
- A link to reserve your room will be included in your registration confirmation email
- Rate: $160.95/night
Register
Pricing
IFCR has prioritized making 2026 CDKL5 Family Educational Conference as affordable as possible for families. Individuals with CDKL5 and children under 18 are free. There are several ticket options available to fit your family’s needs.
Register by April 30th to take advantage of early bird pricing.
*Full Registrations include all conference activities, all meals, and snack breaks*
Full Registration Caregiver/Family Member $150
Full Registration Professional/Provider (non-family, clinician, researcher) $175
Full Registration Industry Representative $300
Tribute Dinner Only Registration $50
Meals Only Registration $100
Grant
Scholarship Opportunity
Did you know many Medicaid Waivers will pay for educational conferences. Please check with your program for this option.
If you are in need of financial assistance, the IFCR provides a limited number of Hope Scholarships. The details and application can be found below in the FAQ’s.
FAQs
Our CDKL5 community will come together for a three‑day in‑person conference designed to support families at every stage of the CDKL5 journey. This event brings families, clinicians, researchers, industry partners, and advocates into one space to learn, share, and strengthen collaboration across the field.
Hosted at the Sheraton Bucks County Langhorne
400 Oxford Valley Road, Langhorne, Pennsylvania 19047,
the conference offers a welcoming environment focused on practical knowledge, scientific updates, and meaningful connection.
Thursday: Partner Engagement & Community Welcome
The conference opens with invitation‑only focus groups where industry partners hear directly from families about lived experiences and priorities.
That evening, all attendees are invited to a relaxed meet‑and‑greet reception as the community gathers and reconnects.
Friday: Full Day of Community‑Focused Programming
Friday provides a complete day of sessions designed to meet the needs of CDKL5 families. Attendees will hear from experts across clinical care, research, therapeutics, and family support. Conversations will highlight emerging insights, practical guidance, and opportunities to engage with professionals throughout the day. The evening concludes with our traditional tribute dinner honoring our children.
Saturday: Continued Learning & Conference Close
Programming continues on Saturday—with sessions running until approximately 3 p.m.—offering additional opportunities to learn, connect, and engage with speakers and fellow families. The day includes time to understand organizational initiatives and gather as a community before closing the conference together.
Sheraton Bucks County Langhorne
400 Oxford Valley Road, Langhorne, PA 19047
Phone: (215) 547 4100
Link to register for the negotiated $145 (+taxes) room rate will be included in your registration email.
Located directly across from Sesame Place and close to a variety of restaurants, shopping, and family‑friendly attractions, the Sheraton Bucks County Langhorne offers comfort and convenience for conference attendees. Guests can unwind in spacious rooms featuring Sheraton Signature Beds and in‑room refrigerators, and enjoy amenities such as a heated indoor pool, 24‑hour fitness center.
Nearby attractions include Oxford Valley Mall, Parx Casino, Washington Crossing Historic Park, and Shady Brook Farm, all within a short drive.
All rooms include refrigerators.
Will there be a private area to change my child?
Yes, a private changing area will be available on site.
If members of my family are not attending sessions, what is available for them to do?
Details on sibling activities will be provided, and the hotel’s proximity to Sesame Place, shopping, and local attractions offers plenty for families to explore. Visit the hotel website to learn more.
Travel by Air
Airport shuttles are not available.
- Trenton–Mercer Airport (TTN) – approx. 9–10 miles from the hotel
- Philadelphia International Airport (PHL) – approx. 34 miles from hotel
Travel by Car
- Parking: Complimentary on‑site parking is available
Full registration unlocks the complete conference experience, giving you access to every event, activity, and session, along with the tools and resources that help you stay informed and make the most of your time with the CDKL5 community.
- Access to all official conference events, including:
Thursday evening’s social & networking reception, Friday sessions, the Friday Tribute Dinner, and Saturday sessions - All meals and snacks throughout the conference
- Exclusive log‑in credentials for our mobile conference app—your hub for schedules, updates, reminders, and real‑time notifications
- An attendee welcome bag
Can I buy extra meal tickets for family members who are not attending sessions?
Yes.
- Children under 18 eat for free.
- Non-Registered adult guests or travel companions may dine with us by purchasing guest meal tickets (attendee meals are included with a full registration).
Are guest tickets needed for the Tribute Dinner?
Yes.
- Guest Tribute Reception tickets are required for anyone not registered for the conference.
- Children under 18 who do not prefer the kids’ plate option will also need a purchased guest ticket.
- Diagnosed children are our guests at all meals, the Thursday Welcome Orientation, and the Friday Tribute Reception.
Can my spouse and I share a single registration badge?
Yes.
Caregivers may share one badge if they plan to rotate attendance.
However, anyone consuming conference-provided meals will require their own meal ticket.
IFCR has prioritized making 2026 CDKL5 Family Educational Conference as affordable as possible for families. Individuals with CDKL5 and children under 18 are free. There are additional ticket options available to fit your family’s needs.
Register by April 30, 2026, to take advantage of early bird pricing.
*Full Registrations include all conference activities, all meals, and snack breaks*
Full Registration Caregiver/Family Member $150
Full Registration Professional/Provider (non-family, clinician, researcher) $175
Full Registration Industry Representative $300
Tribute Dinner Only Registration $50
Meals Only Registration $100
Scholarship Opportunity
Did you know many Medicaid Waivers will pay for educational conferences. Please check with your program for this option.
If you are in need of financial assistance, the IFCR provides a limited number of Hope Scholarships.
With generous support form UCB, we are hosting Sibling Camp again this year for siblings ages 7 and older. These kids deserve some time dedicated for them, and we are excited to make this available.
Friday morning, they will spend time socializing as a group and get to know each other. Then it’s off to Funzilla for 3 hours of active fun, including Go Karts, Ninja Obstacles, Air Bag Jump, Arcade Zone and more! Round trip transportation and lunch are included, thanks to our Sibling Camp Sponsor, Camp chaperones will be with the group to ensure the day is safe and fun for all.
The registration for this is part of the main registration form.
We warmly welcome families and recognize that many attendees may need to bring their child with CDKL5 to conference events. We want everyone—families, clinicians, researchers, and industry partners—to feel comfortable and supported throughout the meeting.
To help maintain an environment where presenters can be heard and sessions can be recorded clearly, we kindly ask:
- If your child becomes vocal or distressed during a session, please feel free to step out temporarily. We completely understand that this is a normal part of caring for children with complex needs, and there is no judgment at all.
- All sessions are being recorded, so you will be able to revisit any content you may miss while attending to your child.
- Quiet waiting areas will be available nearby if you need a moment before re‑entering.
Thank you for helping us create a welcoming and accessible experience for all participants. Your presence—and your child’s—is an important part of this community.
Hope Scholarship – Applications due by April 1st, 2026
The Hope Scholarship will cover 1 registration (including registrant’s meals) and 1 hotel room (double occupancy) for 2 nights. There are also limited travel stipends available.
To qualify for the scholarship, please complete the application at this link. This form may be completed by any CDKL5 family member or caregiver who wishes to attend the conference and needs financial assistance to do so. There are a limited number of scholarships available, and priority will be given to applicants who have not previously received a Hope Scholarship. Awardees will be determined by the IFCR’s Board of Directors and information provided will be kept in strict confidence. The IFCR will notify you of your application status upon review of all applications and available funds.
Only one submission per family please.
Deadline: April 1, 2026
**Please note that Medicaid waivers often provide support for caregiver education funding for caretakers of children under 18 years of age. Reach out to your case manager for more information on this benefit.
Attendees have access to the conference program and agenda as well as other important conference related event information in the app!
Thank You to Our Sponsors
Champion
Hope
Advocate
Friend
2026 Conference Agenda
Preliminary Schedule Subject to Change
Registration table will be open starting at 4pm on Thursday and all day Friday and Saturday
Friday and Saturday mornings will be general interest sessions (all of us together in the large ballroom). In the afternoons, we will have breakout sessions to better accommodate varied interests
Thursday Afternoon/Evening
5:00pm
Family Meet-and-Greet Reception
Friday
7:30-8:15am
Breakfast
8:15-12:00pm
- Welcome
- Industry Updates – the latest updates from companies developing CDKL5 treatments
- CDKL5 Science and Research Update – new information about the science of CDKL5
- ICCRN Panel – your favorite doctors tell what our Centers of Excellence have learned about keeping our CDKL5 loved ones as happy and healthy as possible.
12:00-12:45pm
Buffet style lunch together
1:00-4:45pm
Break-out sessions for deeper dives into various topics. Presenters and topics being finalized.
The evening will include a group picture and the very popular Tribute Dinner to honor the families!
Saturday
7:30-8:15am
Breakfast
8:00am-12:15pm
- Welcome and morning kick-off
- Industry updates – more updates from companies developing CDKL5 treatments
- Back by popular demand to help us learn the importance of caring for ourselves and the entire family unit: Brad Thompson
- Gene therapy segment
- Experience story from Nate Plasman, father of a child diagnosed with Duchenne Muscular Dystrophy with gene therapy experience
- Gene Therapy Session and Workshop: This is for EVERYONE! This workshop is about risk benefit and decision making. We need everyone’s perspective on this topic. It is important to include those excited about gene therapies, as well as those who may know they will not choose this type of treatment. This will be a research effort and provide important insights for the community, our industry partners, and provide evidenced based learning for regulatory bodies, like the FDA. Please join us for this important work!
Buffet Lunch
1:00-2:45 pm
Break-out sessions for deeper dives into various topics. Presenters and topics being finalized.
2:45pm-3pm
Closing remarks
Afternoon Break Out Sessions: Break Out topics across both days will include: Clinical Trials: What to Expect, Keto and Nutrition, Sleep, Behavior, Physical Medicine and Rehabilitation, Respiratory/Pulmonary, Smaller sessions with Brad Thopmson, GI topics, CVI, advocating pointers, and so much more! Day and time of individual sessions tbd.
Also back by popular demand, Katie Angione, an amazing genetic counselor, will be providing sessions for families. Times will be available throughout Friday and Saturday.
Additionally, there will be time and opportunity to socialize and learn from one another!