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CDKL5 Voices | May 2023

IFCR Adds Two New CDKL5 Centers of Excellence!

Funding CDKL5 clinical research and care is at the core of our mission for CDKL5.

Our CDKL5 Centers of Excellence (COE), located throughout the United States, offer families multidisciplinary care that they cannot find anywhere else, and COE clinicians lead the field in understanding our rare disease.

We are thrilled to announce the addition of two new CDKL5 Centers of Excellence, bringing the total of COEs in the United States to ten!

Welcome Monroe Carell Jr. Children's Hospital at Vanderbilt and The Children's Hospital at Montefiore Medical Center!

Click to read the news release.

Get Ready to Move CDKL5 Forward!

June is CDKL5 Awareness Month and we are ready to Move CDKL5 Forward for the third year in a row!

We need YOU to help us reach our goals:
Move 18,000 miles as a community!
Raise $100,000 for CDKL5!
Move CDKL5 Forward is the IFCR's largest annual fundraising event and we are thrilled to share that we have a Mile Match Sponsor (thank you, Koenig family!) who is matching our 18,000 miles. That means $18,000 for CDKL5!

How can you help? Make a page!

Throughout June we need you to get out and MOVE, SPREAD AWARENESS, and FUNDRAISE for CDKL5. We cannot reach our goals without you!

Click to watch a quick tutorial of how to set up your page.

There are prizes!

Early Bird - Create your page by May 15
Move 30 miles
Raise $1,000+
Top 10 Movers and Top 10 Fundraisers earn special prizes!

Thank you to our event sponsors!
Our Platinum Sponsor is Marinus!
Mile Match Sponsor - the Koenig Family
Ultragenyx
UCB
Cure Rare Foundation
NuMotion Foundation
the Reynoso Family
in memory of Graziano Graziani
Julie Hubbell Real Estate
Georgetown Psychology
Duffy's Bar & Grill

Create Your Page!

Oportunidad Para Los Clínicos

Clínica Integral de Epilepsia y Neurodesarrollo presenta curso de actualización “Síndrome por deficiencia de CDKL5.”

Fecha: 24/06/2023
Modalidad: Virtual
Idioma: Español
Valor: Gratuito

Gracias a nuestros amigos de CDKL5 España por colaborar con nosotros en este programa.

El Programa

Enrolling Now - Get CDKL5 Clinical Trial Ready!

The ICCRN is enrolling for the longitudinal phase of their CDKL5 Clinical Trials Readiness study! Help CDKL5 researchers in this important work and learn what you can do to participate!

Click to watch the study update video!

Learn More

Million Dollar Bike Ride (MDBR)
Ride with "Team CDKL5 Riding for a Cure"
June 10, 2023

MDBR brings over 600 cyclists and volunteers to Philadelphia to ride either 10, 32, or 70 miles for research dollars. "Team CDKL5 Riding for a Cure," led by IFCR board member Kristin Kozera, has been participating in this incredible event since 2016!

The Orphan Disease Center (ODC) will generously match up to $30,000 raised, and 100% goes towards CDKL5 research!

Want to ride? Register today or reach out to Kristin (kkozera@cdkl5.com) for more info!

Click to Ride!

Family Support Program

We know how hard life with CDKL5 can be and we are here for you whenever you need us.

Would you like to speak with a fellow CDKL5 parent who knows what you're facing? We have peer support volunteers who are available to offer a listening ear or resources that can help. Email FSR@CDKL5.com.

FOR FAMILIES

Enrolling CDKL5 Clinical Trials

Did you know? Our website is a great place to learn what clinical trials are enrolling for CDKL5!

There are opportunities for interventional trials as well as clinical research, including ways to participate in CDKL5 research from your home, anywhere in the world!

This information and even more can be found on our website. Check back frequently for updates as new opportunities emerge!

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Have you joined "Connect CDKL5"?
Connect families receive direct communication about clinical trial opportunities for CDKL5 and other important information important for families. Join today!

PARENTS, JOIN CONNECT CDKL5

MAKE A DONATION

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