#5KforCDKL5: Supporting Families Affected by CDKL5 Deficiency Disorder
CDKL5 Deficiency Disorder (CDD) is a severe and rare neurodevelopmental condition that typically begins in infancy. It is caused by mutations in the CDKL5 gene and leads to a range of complex symptoms, including drug-resistant epilepsy and significant developmental delays. With an estimated occurrence of 1 in 40,000–60,000 live births, CDD is one of the most common genetic causes of epilepsy.
At FutureNeuro, researchers are investigating the biological mechanisms that underpin CDD and other genetic epilepsies, with the goal of developing more targeted, effective treatments. This work is deeply informed by the experiences of the families affected—and driven by a commitment to improving their quality of life.
To raise awareness and support for families living with CDKL5 in Ireland, FutureNeuro is launching #5Kfor CDKL5, a fundraising and awareness campaign that invites participants to complete a 5km run or walk virtually anytime between 23 June and 23 July 2025, or to join an in-person 5K event on 26 June at 3pm in St Stephen’s Green, Dublin.
All proceeds will go to CDKL5 Ireland, a small, parent-led charity that supports families affected by this rare condition. The organisation works to raise awareness, advocate for services, promote research, and build a stronger sense of community among those impacted by CDD across Ireland.
“My research focuses on understanding the cellular and molecular mechanisms of CDKL5 Deficiency Disorder and identifying new therapeutic targets,” says Dr Omar Mamad, a Funded Investigator at FutureNeuro who is leading the campaign. “But research isn’t just about what happens in the lab—it’s about the people behind the data. This campaign is a way to show solidarity with the CDKL5 community and to bring visibility to their journey.”
How to Take Part:
- Join virtually: Walk, run or roll 5K anytime between 23 June and 23 July and share your support using #5KforCDKL5.
- Join in person: Come along to our 5K event on Wednesday 26 June at 3pm in St Stephen’s Green—all welcome!
- Donate: Visit https://www.gofundme.com/f/5forCDKL5/donate?source=btn_donate to support the campaign.
Get involved and help move us closer to a future where individuals with CDKL5 and their families are better supported—through research, recognition, and community action.
