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Organ & Tissue Donation

The death of a loved one is tragic, and no parent wants to consider the unthinkable. When your loved one passes, an option exists to leave a gift of hope to those who continue to struggle with CDKL5 Deficiency in hopes of a brighter future for the next generations affected by CDD. Organ and tissue donation is a critical part of CDD research and we honor these generous and selfless acts by those who choose this path after a loved one has died.

The International Foundation for CDKL5 Research is collaborating with the Harvard Brain Bank to allow autopsy samples to be safely stored for future investigation. This process takes some time to arrange, please consider this option is before you ever have to to assure your wishes can be honored.

For questions, please contact:

Karen Utley or Heidi Grabenstatter
Email: or
Phone: 979-482-6252

Harvard Brain Bank