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Personal Stories
Stories of FTD Genetics Featured in “Brain & Life” Magazine
Brain & Life magazine recently told the stories of two people whose lives have been affected by FTD, and who participated in the March 5 AFTD-hosted Externally Led Patient-Focused Drug Development (EL-PFDD) meeting. Hannah Mackay, a police officer from West Sussex, England, and Wanda Smith, who lives in San Diego, were…
AFTD Founding Board Member Talks about Creation of FTD Caregiver Resource Book
AFTD founding Board member Lisa Radin shared her journey of being an FTD caregiver during Massachusetts General Hospital’s “Community Forum Friday” conversation series. Radin was a guest on the March 24 livestream hosted by Katie Brandt, MM, Director of Caregiver Support Services…
AFTD Volunteer Living with PPA Interviewed on “Rodger That” Podcast
AFTD volunteer Jennifer Lee discussed how her life has changed since being diagnosed with primary progressive aphasia (PPA) on the Rodger That podcast. In the 30-minute episode entitled “Living with Frontotemporal Dementia: Jennifer Lee,” Lee, 44, recalled noticing her FTD-related symptoms a year before receiving…
“Atlantic” Magazine Highlights Person Diagnosed with FTD
An article published in The Atlantic details the lives of persons diagnosed with dementia amid the COVID-19 pandemic, including one man diagnosed with FTD, and how the pandemic is impacting their health and lives. The article, published March 24, tells Joe Licata’s story of his rapid decline in performing independent tasks, his difficulties with impulse…
Persons with FTD Advisory Council Member Shares Story of Advocacy and Volunteerism
Katie Brandt (left), Amy Shives (center), and Sharon Denny AFTD volunteer Amy Shives, MEd, discussed her experience of being diagnosed with FTD and the ways in which AFTD’s mission is informed directly by persons diagnosed on the latest Massachusetts General Hospital-led “Community Forum Friday” conversation. Shives and AFTD Senior…
UK Woman Shares Husband’s Journey with Young-Onset Dementia
Michelle Macadangdang mistook her husband’s sudden change in temperament to be a sign that their marriage was in trouble, but instead, she learned that her husband was experiencing symptoms of young-onset dementia. Macadangdang, who lives in England, shared her story with Yahoo! Style…
Giving a Hand to Our Helping Hands! AFTD Volunteer Marc Toles
A former caregiver to his wife, Marc Toles (MI) wanted to give meaning to what he and his family went through during their FTD journey. After his wife passed away, he resolved to help others facing FTD – and begin…
Giving a Hand to Our Helping Hands!
AFTD Volunteers: Kati Woodford and Marlene McKian AFTD offers a young-adult Facebook group for people in their 20s and 30s who have a family member or loved one with FTD. This group is “secret,” meaning it cannot be found through…
Giving a Hand to Our Helping Hands!
AFTD Volunteer: Amy Almeida AFTD volunteer Amy Almeida and her family used AFTD’s resources for care partners throughout her mom’s FTD journey. She was inspired to become an AFTD volunteer for two reasons. First, she wanted to give back after…
Giving a Hand to Our Helping Hands!
AFTD Volunteer Nanci Anderson As care partner for Gary, her husband of 38 years, AFTD Volunteer Nanci Anderson of Minnesota feels she has a renewed purpose – to support her husband, family and others on the FTD journey. She says…