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CDKL5 Voices | February 2023

Happening Soon: Webinar Update with Ultragenyx

Please join us as we welcome Ultragenyx for a webinar update on their potential 2023 IND (Investigational New Drug) filing for their UX055 gene therapy program for CDKL5 on February 13 at 2:00ET. Registration is required.

In case you missed it: Click to read the latest community update from Ultragenyx.

Ultragenyx Webinar Registration

Upcoming Ztalmy Educational Opportunity

Marinus Pharmaceuticals, the organization that brought ZTALMY®️ (ganaxolone) oral suspension CV to market in 2022, will host an educational webinar answering community questions in March.

Please submit any questions you have to connect@cdkl5.com by Feb 14.

Grant Awardee Announced!

We are happy to partner with the Million Dollar Bike Ride for Rare to to fund "Choroid plexus disruption in CDD."

Special thank you to our board member, Kristin and the Kozera family for leading this special fundraising effort for us!

Seizure Action Plan Awareness Week

February 13-20 is Seizure Action Plan Awareness Week. Does your loved one have an updated Seizure Action Plan? They should!

A Seizure Action Plan is an important tool for anyone living with epilepsy. With seizures as complex as those found with CDKL5, an updated Seizure Action Plan helps everyone caring for your loved one understand what "normal" seizure activity looks like and how to respond appropriately.

Our website has information about seizure action planning in our Resource Library. Click to visit.

Move CDKL5 Forward Sponsor Search!

June will be here before we know it and our Fundraising Committee is already hard at work planning the 3rd annual "Move CDKL5 Forward" awareness and fundraising event!

We are looking for:

Individual
Family
and Corporate

sponsors to help us make the event a success! Do you want to help Move CDKL5 Forward? Let us know! Email Marissa (mbishop@cdkl5.com).

Sponsors due April 1.

Sponsor Flier

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 for CDKL5 families. Join today!

PARENTS, JOIN CONNECT CDKL5

IFCR FAMILY SUPPORT

ONGOING CDKL5 CLINICAL TRIAL OPPORTUNITIES

MAKE A DONATION

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