Medical Advocacy
     Emergency Medical Situations
  » Sensitive Planning Information
  Educational Advocacy
  Community Advocacy
  Advocacy Resources

 Join IFCR Now!

IFCR Store

Partner Login

User Name:    Password: 

Glyn's Gift

The beginnings of CDKL5
Our Next Event

Natural History Study

Learn More

iPS Disease Modeling and Drug Development in CDKL5

Dr. Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has ... Learn More

GoodSearch: You Search...We Give!

Sensitive Medical Situations

The following topics are deeply personal, emotional and difficult to think about. We offer the information here so that if the unthinkable happens, you will have seen and considered the information well before you may ever need it. Read more

DNAR (Do Not Attempt Resuscitation)

It is important and worthwhile to consider your feelings and wishes in regards to a Do Not Attempt Resuscitation (DNAR) order or comparable legal document. This matter is best considered over a period of time with all significant information available, a clear and rested mind, along with an understanding of how the decision affects all parties (patient, parent, medical professional, rescue personal, etc.) involved. The Pediatric Intensive Care Unit, the ambulance, or the family room in the Emergency Department is not the ideal place to make this decision; the environment is already mixed with incredible stress, lack of sleep, confusion for some, and urgency for most parties involved. This matter is very personal and there are no correct or easy answers. The best time to consider the possibilities is when you have the gift of time to reflect on your family’s wishes, before the matter becomes urgent and unavoidable. Discuss questions with your Primary Care Physician such as the general success of CPR, the quality of life you wish for the patient (including the rest of the family), and the reality of the diagnosis the patient lives with.

Organ/Tissue Donation
“From knowledge will come a cure.”

The death of a child is tragic, and no parent wants to consider the unthinkable. When a loved one passes, their legacy can be the gift of hope to those who continue to struggle with CDKL5 and to future generations. Organ donation is a critical part of CDKL5 research and we honor the generous and selfless act of those who choose this path after a loved one has died.

The International Foundation for CDKL5 Research is collaborating with the International Rett Syndrome Foundation and the Harvard Brain Bank in order to allow autopsy samples to be safely stored for future investigation. While we hope and pray this never needs to be utilized, the time to consider this option is before you ever have to.

Please contact Katheryn Elibri Frame at or 630-926-1189 with any questions, or you may contact directly the Harvard Brain Bank at 1-800-BRAIN BANK.
© 2017