Researchers who want to learn what is going on in the brain of someone with Lesch-Nyhan disease can only learn so much from brain scans. Sometimes, they need to look into the brain directly. This has been made possible by people and their families who donated a brain for research. Of couse you can not donate your brain while you are alive! People who donate brains recognize that their very generous donation cannot help the person donating it, but might help the other people still living with the condition.
Any family considering this type of donation should talk it over with their child. It is surprising how many people with Lesch-Nyhan disease want to donate their brains when they learn that they might be able to help someone else even after they die. One boy said he thought he probably would not need his brain anymore after he died, and he did not want it to go to waste!
Any families who might want to plan for a donation to help find answers should contact the director of the Lesch-Nyhan Brain Bank for more information. This bank currently has three brains to help with research, and it is growing.