Forward to a Friend

Having trouble viewing this email? View as a web page.

CDKL5 Voices | March 2023

Ultragenyx Webinar Replay Available

Last month we were pleased to welcome Ultragenyx for an update on their upcoming Investigational New Drug (IND) filing for UX055 gene therapy. You can now watch the recording, including the follow-up Q&A, on our YouTube channel.

Click to Watch

Move CDKL5 Forward Sponsor Search!

Our 3rd annual "Move CDKL5 Forward" event is coming up in June and we are looking for sponsors to help make it a success!

Individual
Family
Corporate

Please click to view our Sponsor Flier and email questions and interest to Marissa (mbishop@cdkl5.com). Due April 1.

We are pleased to share that we have secured a Mile Match sponsor!

RSVP - Let's Meet Up!

It has been too long since the IFCR has been able to gather families together in person. Now that restrictions have lifted, we are excited to get together again!

We have "CDKL5 Family Meet Ups" planned around the United States in 2023! Hosted by dedicated IFCR volunteers, we are pleased to gather families together for fun and camaraderie. After all, there is absolutely nothing like being together with other families who "get it."

We are gathering RSVPs for Meet Ups in Massachusetts, Colorado, and Illinois. Stay tuned for Michigan and Texas RSVPs coming soon!

Click to RSVP

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!

---------------------

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!

Upcoming CDKL5 Support Group
Thursday, March 30 - 1:00 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: CDKL5 check in - how are you doing?

Click to Register

PARENTS, JOIN CONNECT CDKL5

IFCR FAMILY SUPPORT

ONGOING CDKL5 CLINICAL TRIAL OPPORTUNITIES

MAKE A DONATION

Would you like to forward this email to a friend? Click here.

Forward to a Friend

Preview