International Foundation for CDKL5 Research-IFCR

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International Foundation for CDKL5 Research-IFCR

IFCR is a 501(c)(3) nonprofit who is governed by an all-voluntary Board of Directors and a distinguished Scientific Advisory Board. IFCR also has a wonderful group of dedicated Regional Family Representatives who reach out and engage local families affected by CDKL5. IFCR is proud to say that over 93% of all donations go directly to research.

24/04/2026

It’s time to get moving… Registration for Move CDKL5 Forward is NOW OPEN! ✨

All June long, our global CDKL5 community will walk, roll, run, bike—any way you like to move—to raise awareness for CDKL5 Deficiency Disorder and critical funds for the International Foundation for CDKL5 Research. Last year, participants logged over 15,000 miles, and this year we’re aiming even higher!

Ready to join in? Register today, create your personal page, and invite your friends and family to move with you this June. Sign up today at the link in our bio and get ready to MOVE for CDKL5!

🔹https://cdkl5.com/move-cdkl5-forward

23/04/2026

✉️ Have you checked your inbox yet? The April edition of CDKL5 News is here, and it’s full of ways you can help MOVE CDKL5 forward.

Here’s a quick look at what’s inside 👇

💜Registration is OPEN for the 2026 MOVE CDKL5 Forward virtual campaign in June for CDKL5 Awareness Month – start or join a team, track your miles, share your story, and raise funds for research.

💚New tools to help you spread the word and opportunities for businesses to sponsor MOVE.

💜 A reminder that Early Bird registration closes April 30 for the 2026 CDKL5 Family Educational Conference in Philadelphia.

💚 A call to action to support the bipartisan Act (S.494 / H.R. 1189) and keep this critical legislation moving forward.

💜 And as always, our current and ongoing research opportunities so you can be a part of the science that will move CDKL5 forward - even from the comfort of your own home!

📬 Take a minute today to open your email, read the full newsletter, and jump into the opportunities that fit your family.

22/04/2026

⏳ 9 days left!

Early Bird ends April 30 and prices increase by $50 on May 1.

Join us at the 2026 CDKL5 Family Educational Conference - a powerful weekend to learn from experts, connect with families who truly understand, and be part of something unforgettable!

21/04/2026

💜 It’s National Volunteer Week, and we’re celebrating the incredible people who give their time, energy, and hearts to the CDKL5 community.

From board and committee members to event hosts, peer supporters, and behind‑the‑scenes helpers, your dedication keeps our mission moving forward for families around the world.

Because of you, we can fund research, share trusted education, and make sure no CDKL5 family feels alone. Today and every day, we are so grateful for you. 💫

Thank you for all you do for IFCR and the CDKL5 community.

20/04/2026

Every June, our CDKL5 community laces up, wheels out, and moves together to change the future of CDKL5 Deficiency Disorder. This year’s Move CDKL5 Forward event is a heartfelt opportunity for families, friends, and supporters of all sizes to get involved, and we’re inviting mission‑minded partners to stand with our families as sponsors.

When you sponsor Move CDKL5 Forward, you are fueling research, connection, and hope for children and adults living with CDKL5 around the world. Your support—whether as an individual, a small business, or a larger organization—helps us fund cutting‑edge science, host family meet‑ups, and provide trusted resources that families rely on every day.

If you or your business believes in community, inclusivity, and moving rare disease research forward, we’d love to talk. To learn about sponsorship levels and benefits, please contact us at [email protected]. Let’s Move CDKL5 forward, together. 💜✨

17/04/2026

The 2026 CDKL5 Family Educational Conference is so much more than a weekend of sessions - it’s a place where families experience a true sense of belonging.💜

A place where you don’t have to explain seizures or therapies or the rhythm of your daily life, because everyone already understands. It’s also one of the rare opportunities to sit directly with leading clinicians and researchers, ask meaningful questions, and learn from the very best in the field.

This year’s conference brings together the CDKL5 families, experts, and advocates - all committed to learning, connecting, and building a stronger future together.✨

Education, community, hope - It all happens here.

16/04/2026

Families deserve a voice in CDKL5
research!

📢Join Connect CDKL5 to:
- Get research & trial updates
- Join surveys & focus groups
- Help shape the future of CDD care

🧩Your data matters. Your voice drives change.
- Free to join, privacy protected.
👉 https://www.cdkl5.com/connect-cdkl5

15/04/2026

💬 Communication looks different for everyone.

Join us for an AAC & Communication session with Patricia A. Remshifski, PhD, CCC‑SLP, plus a hands‑on AAC device station led by Jamie Rosenstein, MS.Ed., CCC‑SLP—both from Jefferson College of Rehabilitation Sciences. Learn strategies and explore communication tools up close.

👉 Register now: https://cdkl5.com/conference

13/04/2026

💜Gear up and help Move CDKL5 Forward. Every Move tee, hoodie, hat, or tank you wear sparks awareness and fuels research and family support through IFCR.✨

Grab your Move merch now and get ready to run, walk, and roll with us at the end‑of‑year fundraiser at the link below!

🔹 https://www.bonfire.com/store/international-foundation-for-cdkl5-research/

10/04/2026

Have you registered for the CDKL5 Family Conference yet? You won’t want to miss this.👇

We’re hosting a powerful, honest session on gene therapy - starting with real talk about where the science stands, what risks exist, and what expectations are realistic.

Then we’ll move into a community risk/benefit workshop where every voice matters. Whether you’re eager to join a trial, unsure, or not interested at all, we need your perspective to understand the full picture of our community’s hopes and concerns.

Your voice shapes the future - We hope to see you there!! 💜✨

08/04/2026

🎤We’re thrilled to announce that Dr. Christine Roman-Lantzy, one of the nation’s leading experts in Cortical/Cerebral Visual Impairment (CVI), will be joining us as a featured speaker at the 2026 Family Educational Conference.

Dr. Roman-Lantzy’s groundbreaking work has shaped how families, educators, and clinicians understand and support children with CVI. Her research, practical frameworks, and deep commitment to empowering families have transformed the field - and we’re honored to bring her expertise to our community! ✨

07/04/2026

🌍 World Health Day 2026 ✨

Today, we join the global call to build a world where every person has access to quality care, support, and hope. At the International Foundation for CDKL5 Research, health means more than medical progress - it means community, connection, and compassion for every family affected by CDKL5 Deficiency Disorder.

Today we reaffirm our commitment to advancing research, empowering families, and ensuring that rare voices are heard in the conversation about global health. Together, we make wellness possible - not just for the many, but for the few who need it most. 💜

Address

Telephone

+13302945005

Website

http://www.cdkl5.com/, https://cdkl5.com/2026-conference-registration

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