Behind every diagnosis is a person. A family. A life forever changed.
MAPT FTD doesn't just affect one generation, it ripples through families, touching grandparents, parents, children, and grandchildren. These are the stories of our community: Caregivers watching their loved ones change, gene carriers facing an uncertain future, advocates fighting for treatments that don't yet exist.
These stories are raw, honest, and deeply human. They speak to the isolation, the grief, the small moments of beauty, and the fierce determination to change the future for those who come after us.
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At 30, Ansel carries the MAPT gene. He traces how FTD took his mother's creativity and made the difficult decision not to have biological children. A meditation on living with genetic risk.
Three generations of FTD. As a child, Catherine saw her grandfather as a "forgetful pirate." After watching her father fade and learning she's a carrier, she turned pain into purpose.
Erin's husband went from corporate counsel to needing full-time care. Misdiagnosed as Parkinson's, then FTD. A story of teamwork, disability battles, and choosing love through profound change.
On November 18th, Cure MAPT FTD co-founder and advocate Linde Jacobs spoke movingly at UCSF to a group of researchers on genetic FTD. Linde spent years supporting her mother, who carried a MAPT FTD gene. Now at risk of developing FTD herself, she is a powerful advocate for change in the scientific community.
Linde watched FTD take her grandmother, then her mother. Four weeks after her mom's death, she learned she carries the gene. Now she leads research advocacy and fights for her daughters' future.
Life was perfect until FTD "beamed an alien" into her husband Rob. Over nine years, Marian learned to let go of fixing and focus on loving. Sometimes accepting help is the most loving choice.
After generations of FTD in her family, Susan tested positive at 64. The news hit "like a landslide." Now 67 and still asymptomatic, she's grateful for every birthday her mind stays intact.
Tanya's husband Bob, a beloved teacher, died at 58 from MAPT FTD. A car accident he fled, completely out of character, marked the turning point. Now she fights stigma and advocates for a cure.
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