Detrás de cada diagnóstico hay una persona. Una familia. Una vida cambiada para siempre.
La DFT-MAPT no solo afecta a una generación, sino que se extiende por las familias, afectando a abuelos, padres, hijos y nietos. Estas son las historias de nuestra comunidad: Cuidadores que ven cambiar a sus seres queridos, portadores de genes que se enfrentan a un futuro incierto, defensores que luchan por tratamientos que aún no existen.
Estas historias son crudas, honestas y profundamente humanas. Hablan de la soledad, el dolor, los pequeños momentos de belleza y la feroz determinación de cambiar el futuro para quienes nos sigan.
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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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