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CDKL5 Deficiency Disorder is a multi-system complex medical disorder that impacts virtually all aspects of the human body and condition.

While there are many promising treatments on the horizon, there is no substitution for the early introduction of a variety of therapies to help children develop skills and strength to aid in their growth and development.  It is firmly rooted in science and in our experiences that when a person is starting from a place of debilitation or weakness in areas of development, initiating therapies as quickly and as often as possible is vitally important to build a strong foundation.  This enhanced foundation will allow our children to be better positioned from a stronger vantage point for any of the pharmaceutical or gene therapies coming down the road.  

Think of it as athletic training in preparation for opening day!

Our core belief here at the CDKL5 collaborative is that intensive therapies offer the best chance at an improved quality of life.  What is intensive therapy vs conventional therapy?  Conventional therapy has been the standard of care for decades and consists of anywhere from 20-60 minutes per week or month.  Compare this with the intensive model of therapy that advocates for at least two to four hours weekly, and in some cases, daily for short bursts of time (example physical therapy).

What are some of the most important therapies children and adults living with CDD should consider?  (It is not feasible to do all at once, rather this list serves as a reference for choosing a few at a time to focus on, rotating as the need arises).

  • Sensory Therapy
  • Hippotherapy
  • Aqua Therapy
  • Massage Therapy
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