One way you can help the cause for LBD is to donate your loved one's brain to research. Post-mortem brain tissue analysis provides the only sure diagnosis of most neurological diseases, including LBD, at this time. Knowing exactly what a loved one had may help families know more about their own genetic expectations. Since comparing past symptoms to autopsy results helps to develop better diagnostic protocols, donating families can feel they are helping others—that their loved one has not died in vain. It is also the way we will finally get a cure. For brain research to go forward, researchers need an ongoing supply of brains to study.
Yet, families often find the donation process difficult and confusing. It happens at a time when families are already stressed. They are grieving. The death of a loved one often brings drastic changes for the caregiver. There is usually a deadline after which the brain would not be useful.
The Brain Support Network (BSN) doesn’t remove those stresses but it makes the donation process it self easier. It provides complete, detailed brain donation arrangements tailored to the specific person and diagnosis, and support the entire way. The BSN is unique. No other organization provides this extent of services. That is, BSN staff have the knowledge and expertise to find and set up the right arrangements for each family—and then walk the family through the whole process. Each family and each situation is different.
Since 2007, the BSN has helped over 170 families donate the brains of loved ones. The founder, Robin Riddle, did all they work until recently when the group became a non-profit and hired two part-time staff. Robin says that each brain donation takes about 15-25 hours of staff time and costs the BSN about $500. The group does not charge for their services but they do let families know that a donation will let them help the next family.
Donating a brain isn’t something you do at the last minute. The BSN requests that you contact them before death is imminent, although they will do their best to help even then. Contact them when a family member has received multiple, conflicting diagnoses, has been placed on hospice, or has been recently hospitalized with pneumonia or a major fall. Families who like the idea of helping others with brain donations that support research can contact the BSN at any time as well.
To find out more about this wonderful organization or to make a donation--or both, check out their website or download their brochure.