At just two days old, Leita’s son Glyn started having infantile spasms. For the next sixteen years, Glyn’s seizures worsened. Leita also had two other children – twins named Asha and Bree – who also developed abnormal symptoms. It took 23 years of searching for answers before Leita was told that her children had a CDKL5-related disorder. Her first child, Glyn, passed away on June 17, 1997 – which is why June 17th now marks World CDKL5 Day. Read more about Glyn’s story here.
World CDKL5 Day sits right in the middle of June – CDKL5 Awareness Month. As described by the International Foundation for CDKL5 Research, the purpose of this awareness month is to educate others on what CDKL5 Deficiency Disorder is, spur potential research, and share the stories and experiences of those within this community.
So how can you help? Take a look at some of our suggestions on how to get involved and raise awareness.
Taking Action, Raising Awareness
If you’d like to participate in raising awareness for CDKL5 Awareness Month (and World CDKL5 Day), here are some thoughts on where you can get started:
- Amplify stories on social media. We understand that those affected by CDKL5 and their families are the experts – so if you’re part of this community, post on social media! Use hashtags such as #CDKL5Awareness, #CDKL5, and #WorldCDKL5Day to find and share stories. If you are not personally affected, still consider sharing content to raise awareness of others’ stories.
- Helpful Hint!: If you’d like to see a full list of eligible hashtags, get an awareness month profile frame, or learn how to talk about this condition, take a look at this comprehensive Awareness Packet from the IFCR!
- Get in touch with the media. Want to raise awareness by contacting your local radio or TV stations? Check out these helpful tips and templates.
- Hold a fundraiser. Fundraising efforts can help spur research and support organizations such as the IFCR. Your fundraiser can be anything from a lemonade stand to an auction. If you’d like some ideas on how to effectively fundraise, head here.
- Contact your governor about a proclamation. The ICFR explains what a proclamation is and how it can be essential to spreading your cause. Getting your politicians involved can also help spread awareness on a larger level.
Do you have other ideas for raising awareness? Send us a message – or shoot us a tweet at @patientworthy, to tell us more!
About CDKL5 Deficiency Disorder
Normally, CDKL5 plays a role in producing a protein which supports brain health and development. But CDKL5 gene mutations prevent the production of this protein. As a result, brain development is altered. Inherited in an X-linked dominant pattern, individuals must have a mutated gene on just one X chromosome to develop CDKL5 Deficiency Disorder. Typically, this mutation occurs in sperm and egg formation, or during embryonic development.
Approximately 90% of those with CDKL5 deficiency disorder are female. Males with this condition typically have more severe developmental delays. This disorder usually manifests as seizures in infancy; these seizures, which are often treatment-resistant, may appear within 1 week to 3 months following birth. Other symptoms and characteristics associated with this condition can include:
- Large, deep-set eyes
- A high, broad forehead
- Widely spaced teeth
- Sleep disruptions
- Irregular breathing
- Feeding difficulties
- Constipation
- Gastroesophageal reflux
- Teeth grinding
- Intellectual and developmental delays
- Language difficulties
- Difficulty walking, standing, or sitting independently
- Repetitive hand movements, such as clapping or hand-licking
- Scoliosis
