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CDKL5 Voices | April 2023

Additional Location for Biomarker Study!

The ICCRN's clinical trials readiness work includes a biomarker study that examines evoked potentials using a painless cap system placed on the head. They have been collecting this information from patients at three CDKL5 Center of Excellence sites (Boston, Philadelphia, and Denver) and now they are able to enroll patients in this biomarker study at the Texas CDKL5 Center of Excellence as well!

Reach out to the study team about participating!

Clinical Trials Readiness Study Update!

Grab your popcorn and settle in for a short video update and live Q&A about the ICCRN's NIH-NINDS funded UO1 study "Multi-site validation of biomarkers and core clinical outcome measures for clinical trial readiness in CDKL5 Deficiency Disorder."

You'll hear an update from the study's Principal Investigators about the initial phase: "1 of 200"
And you'll learn more about the longitudinal phase of the study (enrolling now!)

Please register to attend.

Click to Register

Million Dollar Bike Ride (MBDR)
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!

The Orphan Disease Center (ODC) CDKL5 Registry Update
The CDKL5 Registry was recently upgraded to a new platform and they are looking for feedback from CDKL5 families. Click to read more.

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Educational Opportunity: "Navigating Prescription Medication Access & Patient Support Programs"
Cure Epilepsy is hosting an online forum entitled Navigating Prescription Medication Access & Patient Support Programs on Thursday, April 20, from 3-4 CST. Registration is required.

Upcoming CDKL5 Support Group
Thursday, April 25 - 7:00 ET

The IFCR is here for you. We know what it's like to parent a child with CDKL5 because we are parents too. We offer virtual support groups led by our trained Family Support Reps (FSRs). These are informal, come as you are, gatherings for families. Drop in and out as needed. We understand how unexpected this life can be!

Topic: Divorce and CDKL5

Click to Register

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

IFCR FAMILY SUPPORT

ONGOING CDKL5 CLINICAL TRIAL OPPORTUNITIES

MAKE A DONATION

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