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Bruce Willis family FTD advocacy and research efforts

Updated 3 times since CLSTR started tracking revisions of this situation.

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2026-08-26 13:43 UTC → 2026-09-01 18:45 UTC · added removed

The family of actor Bruce Willis has engaged in public advocacy and scientific contributions regarding frontotemporal dementia (FTD). Following Willis’s diagnosis of aphasia in 2022 and FTD in 2023, his daughter Rumer Willis utilized genetic testing to assess her own Alzheimer’s risk, noting that access to such information provides a “sense of power.” Partnering with the health service Function, Rumer Willis underwent an APOE genetic test to assess her risk of developing Alzheimer’s disease. She described the process of seeking answers as “terrifying” but emphasized that “information is power,” noting her results indicated an “average” risk level. She also highlighted the need for increased public conversation regarding FTD, which affects language, behavior, and mobility. In addition to her genetic testing, Rumer has spoken candidly about the emotional toll of her father’s condition, expressing grief for the “different version” of him she once knew while striving to remain supportive as his neurological condition progresses. In Recent updates indicate the disease has progressed to include anosognosia, a move condition that can prevent a person from being aware of their own illness. Emma Heming Willis noted that because Willis has FTD rather than Alzheimer’s, he remains able to recognize loved ones and maintain emotional bonds. To further medical understanding, the Willis family—including his wife Emma Heming Willis and Willis, ex-wife Demi Moore—has Moore, and his five daughters—has decided to donate his brain to scientific research. Emma Heming Willis described the choice as “emotionally difficult, but scientifically necessary.” This decision aims to study the cellular changes associated with FTD, a condition that currently has no cure. Emma Heming Willis has also established a research fund and caregiver support program FTD to support those affected by the disease. improve disease detection and develop future treatments.

Versions

  1. 2026-09-01 18:45 UTC Bruce Willis family FTD advocacy and research efforts
  2. 2026-08-26 13:43 UTC Bruce Willis family FTD advocacy and research efforts
  3. 2026-08-25 09:50 UTC Bruce Willis family FTD advocacy and research efforts
  4. 2026-08-24 21:31 UTC Bruce Willis family FTD advocacy and research efforts

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