June is CDKL5 Awareness Month: Spreading Rare Disease Awareness

The month of June is recognized as CDKL5 Awareness Month, a time set aside to spread awareness about CDKL5 deficiency disorder among the general public and the medical community. June 17th is also recognized as Worldwide CDKL5 Awareness Day. This year, the International Foundation for CDKL5 Research (IFCR) has compiled resources that can help people get involved in spreading awareness.

About CDKL5 Deficiency Disorder

CDKL5 deficiency disorder is a genetic disorder which is characterized by intellectual disability, seizures, and developmental delays. As the name suggests, the disorder is linked to mutations of the CDKL5 gene which usually occurs spontaneously and is not inherited from a person’s parents. Symptoms become noticeable in the first few months of life. Females are affected more frequently than males, but males tend to have more severe symptoms. These symptoms can include seizures (1-5 per day), constipation, distinctive facial features, reflux, teeth grinding, and problems with feeding and sleeping. Treatment options for the disorder are limited and are primarily focused on minimizing symptoms. Some patients may require a feeding tube. There is a serious need for new and more effective therapies to treat this disorder. In order to learn more about this disease, click here.

A mother named Leita was a founding member of the IFCR and her son Glyn, who was affected by the disorder, died in June 17, 1997. Thus, the dates were selected in honor of his memory.

The IFCR has several ways that you can take action and start spreading awareness about CDKL5 deficiency disorder this month:

  1. Has your area started to open back up? Then give a talk at about the disorder at your local community center or school.
  2. Contact local media about CDKL5 Awareness Month and spread the word. This media toolkit can help you get started.
  3. Ask the governor of your state to issue an official proclamation recognizing the event. Click here to learn more.
  4. Do you know other families affected by the disorder nearby? Get together and support one another.
  5. Do you already have a plan on how you’re going to spread awareness this month? Send some pictures to the IFCR and they will share them on the organization’s Facebook page.

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