Katie Brandt of West Bridgewater was an evaluation specialist for child abuse prevention programs. But the 2012 death of her husband, Michael, 33, from frontotemporal degeneration, which causes progressive damage to the brain’s frontal lobes, pushed her in a new direction.
Since July, she’s been the community resource specialist at the Massachusetts General Hospital Frontotemporal Disorders (FTD) Unit, working with director Dr. Brad Dickerson, the physician who led her husband’s care. She works with FTD caregivers, runs a support group, educational and awareness programs, gives presentations on the disease, and plans fund-raisers.
“My love for Mike was the beginning of this,” said Brandt, mother of the couple’s son, Noah, 7, and caregiver to her father, who has Alzheimer’s disease. “My real passion is about Noah, letting him know his dad’s life was important, figuring out a way to keep him present in his life.”
One of her biggest efforts as community resource specialist was spearheading a gala with a volunteer committee that raised $100,000 for Dickerson’s FTD research and care. Following her husband’s death, Brandt donated his brain to the FTD unit for research.
Her main goal is providing support and resources for caregivers of those suffering with FTD, she said.
“There is no treatment to slow or stop FTD,” Brandt said. “For now, it’s terminal. But as far as the loneliness and the isolation of caregiving, we know how to fix that.”
FTD affects 50,000-60,000 Americans, according to the Association for Frontotemporal Degeneration, and is relatively rare, Brandt said, adding that Alzheimer’s affects some 5 million Americans.
Brandt is also co-chairwoman of “Rare Disease Day” at the State House, scheduled for Feb. 29. For more information on FTD, visit www.ftd-boston.org and her website, www.katiebrandt.org, which is dubbed “Love is Out There,” an education and awareness campaign for frontotemporal degeneration, caregiving, and “taking the power back from rare disease.”
“I know how hard it was to be so alone without support,” she said. “I’m very lucky to do what I can to help change that for another family.”
Paul E. Kandarian can be reached at firstname.lastname@example.org.