Medical InformationBereavement

COPING WITH GRIEF & LOSS

Losing someone you love or care about, particularly a child, is very painful. You may experience all kinds of difficult emotions and it may feel like the sadness you are experiencing will never go away. These are normal reactions to the loss of a loved one. Remember that there is no right or wrong way to grieve, but there are healthy ways to cope with the pain.

 

It is important that you take care of yourself and get support and/or professional help to work through the emotions you are feeling. Make certain your surviving children understand that you recognize their loss and grieving and that you love them. Open communication will help the entire family through the grieving process.

 

SUDEP Global Conversation

Epilepsy Bereaved

Child Bereavement UK

SUDEP Aware

COPE Foundation

 

 

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Tissue Donation

The vision of Dravet Syndrome Foundation is to help researchers find ways to one day prevent or cure Dravet syndrome and related ion channel epilepsies so that future generations do not have to face the devastation of these diseases.

 

Dravet Syndrome Foundation supports Dr. Alica Goldman and her colleagues at the Department of Neurology at Baylor College of Medicine in their establishment of a seizure disorder tissue bank, the SUDEP Tissue Donation Program (STOP SUDEP). This project is funded by The National Institutes of Health (NIH)/The National Institute for Neurological Disorders and Strokes (NINDS). Investigators are collecting blood and/or tissue samples from individuals who have passed away as a result of a seizure disorder. We ask that you consider pre-registering for tissue donation once a clinical diagnosis has been made.

 

We understand that tissue donation occurs at a particularly emotional time for loved ones and that it is a personal and difficult decision that will not be right for everyone. By making this generous donation, you improve the chances of finding a cure and better treatment options for these diseases. If you or your loved ones have questions about the donation process, please contact Dr. Alica Goldman.

 

Below are links to brief videos that help explain the tissue donation process:

What is a tissue bank?

How can my child participate in the tissue registry?

What type of studies are the tissue samples used for?

What benefit is there to the family to make a tissue donation?

What is the STOP SUDEP program and where can I learn more?

 

Tissue donation is a very special gift, but is one about which you may have more questions about. We seek to address some of these questions here