Joy Willard-Williford of NA USA write to us from Florida:
Some families, understandably, have difficulty making the decision to donate their loved one’s (or their own) brain tissue to science. It is unpleasant to think about. It reminds us of our mortality. We prefer to block out thoughts of such things, not to embrace them.
My husband Mark and I, however, have four very precious reasons to donate his brain tissue to NA research: Elizabeth, Christopher, Billy, and Emily. Four of our five grandchildren (I did not use their real names for privacy reasons) have the potential to carry the gene for McLeod’s Neuroacanthocytosis Syndrome (MLS). The boys haven’t been tested because of their young age, but there is the possibility that they may have the disease. We know for certain that one granddaughter is a carrier, and the other is a “maybe.” A beloved niece – Mary – is a carrier.
We do not want to see this vicious disease, which struck Mark in his late 40’s, carry on one more generation. We are determined to do all that we can to stop it in its tracks, by supporting research into its cause and treatment. Perhaps you feel the same way about your children and grandchildren, about your loved one who is living with an NA disease now, or about humanity in general. We must find a way to eradicate NA diseases.
Much of the promising research requires brain tissue. Making arrangements to donate is not hard to do; it’s mainly a matter of completing some paperwork giving permission ahead of time, and your loved ones calling the brain bank at the time of death. We did this in 2012 with my mother-in-law (an MLS carrier) when she passed, and more recently with my brother-in-law. My husband and I have signed the paperwork to donate his brain tissue, and the local funeral home has been given a heads up. In our case, we worked with Tamjeed Sikder, the coordinator of the Neuropathology Brain Bank and Research Core at the Icahn School of Medicine at Mount Sinai in New York City. Tamjeed has been most responsive, and easy to work with.
I am no expert on brain tissue donations, but if anyone wants to talk more about how we came to our decision, please email me at firstname.lastname@example.org