This year is a special one! Why? Because we have two anniversaries to celebrate!
The 20th anniversary of the discovery of the CDKL5 gene! CDKL5 was first identified in 2004. In separate case studies by Drs. John Christodoulou and Vera Kalscheuer, CDKL5 genetic mutations were linked to a neurodevelopmental disorder with a phenotype that overlapped with Rett Syndrome.
The 15th anniversary of the IFCR! The IFCR was incorporated as a nonprofit organization in 2009. Our mission? To treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.
Take a look at all we have accomplished for CDKL5 by visiting the "About Us" section of our website! We look forward to what 2024 has in store for our CDKL5 community and cannot wait to gather in person in June!
Save-the-Date for Conference!
The 6th International CDKL5 Family Education and Awareness Conference is happening June 13-15, 2024 in Cleveland, Ohio! Stay tuned for registration and hotel information.
Many thanks to our Conference Planning Committee volunteers for their time and efforts in putting together an unforgettable program for our CDKL5 community!
New Resource: "Get to Know" Template
Our Family Support Program Committee volunteers have put together a new resource for CDKL5 families. This "Get to Know My Child" presentation template is intended to help families share pertinent information about their child to audiences such as their school, medical or healthcare providers, case manager or other key partner in the child's life.
This editable template is available by request. Please contact Paul (pmiller@cdkl5.com) for more information on how to receive your customizable copy. Please know that our Family Support Reps (FSRs) are available to help customize presentations with your family as needed.
Thank You!
We met the match! So much gratitude to the generous donors who helped us to meet the $25,000 end-of-year matching gift last month and to all who gave above and beyond to help us end the year strong!
Special thanks to the fundraisers who encouraged their networks to give! We can't do it without you!
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.
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 CDKL5 families receive direct communication about clinical trial opportunities for CDKL5 and other information important for families.
