Move CDKL5 Forward

Move CDKL5 Forward

Posted 1 week ago

International Foundation For Cdkl5 Research

International Foundation For Cdkl5 Research

The IFCR is committed to funding research that will bring about treatments and a cure for CDKL5 Deficiency Disorder. We strive to raise awareness of this rare condition and to help CDKL5 families by providing them the resources they need to thrive. CDKL5.COM Hope | Love | Cure

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Support CDKL5 Awareness Month

Move CDKL5 Forward is a month-long fundraising event to support the International Foundation for CDKL5 Research (IFCR), one of the leading organizations solely focused on finding a cure for CDKL5 Disorder.  

CDKL5 deficiency disorder is a rare developmental epileptic encephalopathy caused by mutations in the CDKL5 gene, and this can manifest in a broad range of clinical symptoms and severity. The hallmarks are early-onset, intractable epilepsy and neurodevelopmental delay impacting cognitive, motor, speech, and visual function. 

Stella's Story

Our precious Stella was born on November 7th, 2019. In April of 2020, at about 5 months of age, Stella exhibited her first seizures. After extensive testing, we were informed that Stella has a very rare neurological genetic disorder known as CDKL5 Deficiency Disorder (CDD). There are currently no definitive drugs or treatments available to manage her seizures to give her a break. There is such a wide range of development success rates that there is no way of knowing where Stella will land on the spectrum--meaning we don’t know if she will ever walk or talk. 

Team Stella Strong is putting our miles and dollars on betting that Gene Therapy is our golden ticket to curing CDKL5 and stopping the seizures for Stella and all other kiddos impacted by this terrible disorder.

Share with Friends

Forwarding the Move CDKL5 Forward fundraising information to at least 5 of your contacts to raise awareness and stressing the importance of finding a cure for genetic diseases like CDKL5.

Support Our Work

Ask your employer if they have any funds left in their budget for the year to contribute. No matter what the amount they can spare, every little bit helps to get to this year’s goal of $50,000!

Join Our Events

Dedicate your workouts to CDKL5 on June 17th, International CDKL5 Awareness Day! Post "Today is World #CDKL5 Day and I’m dedicating my workout to help @TeamStellaStrong #MoveCDKL5Forward – CDKL5.com”

Dedicate your workouts to CDKL5 on June 17th!

Learn More

June 17th is International CDKL5 Awareness Day. You can support us by posting on your various social media accounts something as simple as “Today is World #CDKL5 Day and I’m dedicating my workout to help @TeamStellaStrong #MoveCDKL5Forward – CDKL5.com”