CDKL5/Epilepsy Resources

  • The Charlie Foundation: An organization started in 1994 to provide information about diet therapies for people with epilepsy
  • Danny Did Foundation: the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths
  • Chelsea Hutchison Foundation: is a non-profit corporation formed to provide help and support to individuals, particularly children and young adults, who have epilepsy
Tools for caregivers:

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