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CDKL5 Voices | June 2023

CDKL5.COM Has A New Look!

"This is the website you need to go to." When board member, Miriam's, son was diagnosed with CDD, her provider told her to go to www.CDKL5.com.

We are pleased to share that we have updated our website! You'll find it adheres to best practices in accessibility, and is structured so as to be easily translated into a variety of languages thanks to modern browser technology!

Have a look around the new site and send any feedback to media@cdkl5.com.

We Are Moving!!

Moving CDKL5 forward that is! June is CDKL5 Awareness Month and our Move CDKL5 Forward event is off to a great start!

We've hit $50,000! Halfway to goal!

Haven't made your donation yet? Donate today!

Want to get in on the action? We need YOU to help us:
Move 18,000 miles as a community!
Raise $100,000 for CDKL5!
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.

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!

CDKL5 Database Newsletter is Out!

If you are enrolled in the International CDKL5 Disorder Database (ICDD) then you will have received this newsletter about the impact of your participation.

Family participation in the ICDD is so important to understanding our rare disease and we are thankful for the participation from families in the United States, United Kingdom, Australia, Canada, France, Russia, Germany, Brazil, Japan, Italy, and others who have enrolled since 2012.

Over a decade of patient data is so powerful! Get included!

Upcoming Events!

Midwest CDKL5 Family Meet Up is happening July 19th at Great Wolf Lodge in Sandusky, Ohio. Come for the day or spend the night with us! This event is free for families who register. RSVP by June 19.

I will be there! RSVP Link.

CDKL5 Virtual Paint Night June 28th 7:30 ET. Join CDKL5 mama, Danielle, for a fun virtual evening of easy painting! Bring your own materials (listed in the link) and BYOB if you wish! Get those creative juices flowing with us! Learn more at the link.

Danielle is offering this paint night opportunity as a fundraiser for the IFCR! Thank you, Danielle!

I'm in! RSVP Link.

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

Family Support Program

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

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

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