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SCN8A Brain Tissue Trust

Your Child Can Leave a Legacy

The loss of any loved one with SCN8A is unimaginable. We all wish there were more we could do to help end the suffering that comes with this diagnosis. We want to tell you about one incredibly important way families can leave a lasting legacy for their SCN8A child – brain tissue donation.

We are partnering with the Maryland Brain Bank, an NIH NeuroBioBank site, to build a brain tissue donation bank for SCN8A. The precious donations in this bank would allow prestigious researchers to do cutting edge research.

Watch Dr. Frances Jensen explain the importance of brain tissue donation for research. Dr. Jensen is the Chair of the Department of Neurology at the Perelman School of Medicine, University of Pennsylvania, and Co-Director of the Penn Medicine Translational Neuroscience Center.

Hear Angie Weaver’s brave story to donate her SCN2A Warrior daughter Amelia’s organs and tissue after she passed away at the age of 12, so Amelia can continue to fight on for a cure.

To learn more about brain tissue donation, please watch this webinar from our sister organization, DEE-P Connections.