Good News about Brain Donations

Brain donations are vital for ongoing LBD research. They also help families obtain a confirmed diagnosis, and perhaps a better sense of closure. However, making a brain donation can be cumbersome, especially if you live in an area where there are no research centers. And even if there is a research center nearby that accepts brain donations, it may not be researching LBD.

The Brain Support Network (BSN) is a non-profit organization that helps LBD families in the USA by coordinating the complex arrangements involved in brain donation. The organization works closely with the Mayo Clinic to which most of the brains are delivered. Unlike many brain banks, Mayo has ongoing research into the causes and treatments for LBD. The 4/4/14 blog, tells how the Brain Support Network makes brain donations easier.

Making a brain donation can also be costly. Mayo does not require that the patient be seen in its clinic, but does require that families pay the cost of brain procurement, which can amount to as much as $1,000. However, Due to a recent charitable contribution targeting LBD research, BSN can now provide families who need assistance with a grant up to $500 for the brain procurement.

BSN staff states that they hope that these grants result in an increase in research into the cause, treatment, and cure for LBD. They are the first organization, and presently, the only one, to offer grants to LBD families for brain donations. Check out BSN’s website, http://www.brainsupportnetwork.org/, for information on the two main purposes of brain donation and for more information about the work that BSN does besides helping families make brain donations. For more information about the LBD brain donation grant, email them.

The Brain Support Network doesn’t just help with LBD brain donations. Nationally, they promote and facilitate brain donation for anyone diagnosed with any neurological disorder, including Parkinson’s, MSA, FTD, AD, vascular dementia and others. They also track the research that is done involving these disorders.

Locally, the BSN sponsors caregiver support groups in Northern California and maintain relationships with those neurologists in the area who specialize in the diseases that the organization tracks. The group also sends emails to everyone on their extensive database about upcoming events, research programs, relevant findings, and articles on caregiving.

If you want to be on their email list, contact them at the email address and explain your interest. For example, are you interested in knowing more about brain donations themselves, or are you more interested in research? Or perhaps, you live in Northern California and would like to attend their caregiver support group meetings.

Email the Brain Support Network: braindonation@brainsupportnetwork.org
The BSN website: http://www.brainsupportnetwork.org/

For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia

Managing Cognitive Issues in Parkinson’s & Lewy BodyDementia

Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.

The Brain Support Network Makes Brain Donations Easier

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.