Newsletters

Jesus Gonzalez Appointed Inaugural Executive Director of IFCR

We are thrilled to welcome Jesus Gonzalez to our team as Executive Director!

Since our start in 2009, the IFCR has been led by passionate and dedicated CDKL5 parent volunteers. From a small group of families to now a global community of affected patients that continues to grow, it is time for the IFCR to keep growing as well. The hiring of our first Executive Director is an exciting step!

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CDKL5 Alliance Membership Update

The IFCR has been proudly serving the CDKL5 community since 2009. As a nonprofit organization, we have a duty to fulfill our mission – to treat and cure CDKL5 Deficiency Disorder by funding scientific research, while helping affected individuals and their families to thrive.

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The Lancet Neurology Publishes Review of Clinical Features, Diagnosis and Management of CDKL5 Deficiency Disorder

Quality of life of caregivers and patients, as well as future direction of research, are discussed in detail for this rare and extremely severe disorder

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Gene Therapy: A Conversation With Drs Benke & Ultragenyx
Many of us have questions about future CDKL5 treatment options, especially concerning gene therapy. Come learn about genetic therapy approaches in CDKL5 Deficiency Disorder.
We invite you to join us for a webinar on November 16 at 4 PM PT/7 PM ET with Drs Tim Benke, from the University of Colorado, and Ultragenyx. Together they will expand on the presentation “Preclinical Evaluation of AAV9-CDKL5 Gene Therapy” given this past June during the CDKL5 Family Conference which was hosted by the CDKL5 Alliance.

Register now!

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Marinus Expanded Access Program for Ganaxolone

We asked Marinus to tell us more about their new Expanded Access Program (EAP) for ganaxolone.

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2020 IFCR Highlights

Last year at this time we were contemplating the promise that a new year brings and to say 2020 presented obstacles we couldn’t anticipate is redundant, yet we found the silver lining in opportunities lost to regroup and refocus on our mission. This year we find ourselves contemplating our future in a much different light, asking propelling questions and making tough decisions. Given the constraints that most rare disease communities face, how can we best use limited resources? How can we partner with others to realize timely progress? How can newfound opportunities in telemedicine and video-based applications afford new potential directions for rare disease communities to connect or share data with scientists?

Reflecting on past years, it is remarkable how fast science is moving. Genetic therapies are under early development for CDKL5 Deficiency Disorder. We must prepare for any future we are afforded to trial disease-modifying treatments. To be ready for clinical trials…

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