Latest news with #AssociationforFrontotemporalDegeneration
Business Upturn
a day ago
- Health
- Business Upturn
The Association for Frontotemporal Degeneration Joins Lawmakers to Advance Dementia Awareness in California
Sacramento, CA, Aug. 18, 2025 (GLOBE NEWSWIRE) — The Association for Frontotemporal Degeneration (AFTD) and FTD advocates – including Emma Heming Willis, wife of actor Bruce Willis – will travel to the California State Capitol today to mark the passage of the state's second resolution recognizing Frontotemporal Degeneration (FTD) Awareness Week. State Senator Roger Niello introduced the resolution, and will present it on the Senate floor and recognize Willis, FTD advocate Terry Walter, and their families. The resolution's coauthors in the Senate are Sens. Jones, Alvarado-Gill, Dahle, Grayson, Ochoa Bogh, Seyarto, Strickland, and Umberg. In the Assembly, its co-authors are Assemblymembers Patterson, Alanis, Chen, Irwin, and Wallis. This is the second year the AFTD and advocates have gone to California's Capitol to draw attention to the unique impacts of FTD on patients, care partners, families, and public services. In addition to increasing awareness of FTD, they called on Governor Gavin Newsom to add an FTD seat to the California Alzheimer's Disease and Related Disorders Advisory Committee. 'This resolution is a powerful step toward the awareness and policy change needed for this devastating, underdiagnosed disease,' said Meghan Buzby, AFTD's Director of Advocacy and Volunteer Engagement. 'In California, the voices of families and individuals living with FTD are resonating louder than ever — and we will continue pushing for action from the Governor and policymakers to ensure those voices drive meaningful change.' Emma Heming Willis added, 'FTD robs people of their best years and places enormous strain on care givers and families. I'm so grateful to the California Senate and Assembly for making this issue a priority and standing with us to push for change.' FTD is the most common early-onset dementia, often diagnosed in people under age 60. Symptoms include personality changes, speech difficulties, and problems with decision-making. There is no cure, but research and clinical trials offer hope. The full text of the resolution: Relative to Frontotemporal Degeneration Awareness Week. WHEREAS, It is the custom of the Legislature to recognize official weeks that are set aside to increase awareness of serious health conditions that affect the lives of citizens of California; and WHEREAS, Attendant to that concern and in full accord with its longstanding traditions, it is the sense of the Legislature to memorialize and to proclaim the week of September 21 to September 28, 2025, inclusive, as Frontotemporal Degeneration Awareness Week in California, in conjunction with the observance of World FTD Awareness Week; and WHEREAS, The Association for Frontotemporal Degeneration (AFTD) reports that Frontotemporal Degeneration (FTD) is a terminal and incurable neurodegenerative disease affecting the frontal and temporal lobes, causing impairments to speech, personality, behavior, and motor skills that constitutes a major public health concern; and WHEREAS, It takes an average of 3.6 years from the initial symptoms to get an accurate diagnosis of FTD, with an average life expectancy of 7 to 13 years after the initial symptoms; and WHEREAS, FTD strikes people as young as 21 years of age and as old as 80 years of age, with the largest percentage of those affected being in their 40s to 60s, rendering people in the prime of life unable to work or function normally; and WHEREAS, FTD imposes average annual costs associated with care and living with the disease that are approximately double those of Alzheimer's disease; and WHEREAS, FTD is identified in the National Plan to Address Alzheimer's Disease as a related dementia and included as a priority in the goals and strategies of the plan to achieve the vision of a nation free of Alzheimer's disease and related dementias; and WHEREAS, The California Master Plan for Aging incorporates all 10 recommendations from the Governor's Task Force on Alzheimer's (Disease) Prevention and Preparedness to help people and families living with Alzheimer's disease and related dementia; and WHEREAS, FTD represents an estimated 5 to 15 percent of all dementia cases and is the most common form of dementia for people under 60 years of age; and WHEREAS, Approximately 40 percent of people with FTD have a family history of FTD or a related condition such as Amyotrophic Lateral Sclerosis (ALS), with about one-half of those found to have an inherited form accounted for by mutations in the Progranulin, C9orf72, Tau/MAPT and other rarer genes; and WHEREAS, FTD is often misdiagnosed as a psychiatric problem or other neurodegenerative disease because of the wide range of cognitive and behavioral symptoms and their young onset; and WHEREAS, FTD often affects a person's ability to express emotions and to show affection and empathy for loved ones; and WHEREAS, In the behavioral variant of FTD, a person's sense of social graces and appropriate behavior can be lost, and their personality may be significantly changed; and WHEREAS, Furthermore, in the language variants of FTD (primary progressive aphasia), a person may have trouble producing speech and understanding grammar, lose the meaning of words or become hesitant in their speech, and may eventually become mute; and WHEREAS, In the movement variants of FTD, a person may experience muscle weakness, falling, loss of balance, difficulty making speech, difficulty swallowing, or choking; and WHEREAS, While there has never been a global epidemiology study of FTD, it is estimated that more than 60,000 people are affected in the United States today; and WHEREAS, The AFTD is the leading national organization exclusively focused on the spectrum of FTD disorders with a mission to improve the quality of life of people affected by FTD and drive research to a cure; and WHEREAS, It is imperative that there be greater awareness of this serious disease, and more must be done to increase activity at the local, state, and national levels; now, therefore, be it Resolved by the Senate of the State of California, the Assembly thereof concurring, That the Legislature declares the week of September 21 to September 28, 2025, inclusive, as Frontotemporal Degeneration Awareness Week; and be it further Resolved, That the Secretary of the Senate transmit copies of this resolution to the author for appropriate distribution. For more information, visit Disclaimer: The above press release comes to you under an arrangement with GlobeNewswire. Business Upturn takes no editorial responsibility for the same. Ahmedabad Plane Crash
Miami Herald
15-06-2025
- Entertainment
- Miami Herald
Bruce Willis' wife Emma Heming Willis shares poignant message on Father's Day
Emma Heming Willis is sharing a poignant message on this Father's Day. Alongside a photo of one of the two daughters she shares with husband, actor Bruce Willis, hugging her father, Heming Willis wrote 'Happy Father's Day to all the dads living with disability or disease, showing up in the ways they can and to the children who show up for them.' Heming Willis continued saying that Willis teaches their daughters, Mabel and Evelyn, lessons that go 'far beyond words.' 'Resilience, unconditional love, and the quiet strength in simply being present,' Heming Willis wrote, noting that the pictured she shared of the father and daughter 'says so much.' 'Love deepens. It adapts. It stays, even when everything else changes,' the model and activist shared. 'But to be fair to myself, these symbolic days stir up a lot.' 'I'm profoundly sad today. I wish, with every cell in my body, that things could be different for him and lighter for our family.' In March 2022, the Willis family announced in a joint statement that the actor had been diagnosed with aphasia, a condition that affects his ability to communicate. A year later, in February 2023, the family shared another statement revealing that Willis received another diagnosis of frontotemporal dementia. According to the Association for Frontotemporal Degeneration, FTD 'represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain.' Willis has since retired from Hollywood and Heming Willis has become an advocate for her husband and caregivers. 'As they say in our FTD community, 'It is what it is,'' Heming Willis continued in her Father's Day message. 'And while that might sound dismissive, to me, it's not. It grounds me.' The mom of two says that saying 'helps me return to the acceptance of what is and not fight this every step of the way like I used to. Today, let's celebrate the bad*** dads, those who are here, and those we carry with us. Onward.' In addition to Mabel and Evelyn, Willis is also a father to Rumer Willis, Tallulah Willis, and Scout LaRue Willis with his ex-wife Demi Moore.
Mid East Info
15-04-2025
- Entertainment
- Mid East Info
Ariana DeBose Shines in OMEGA Constellation at $1.9M Hope Rising Benefit - Middle East Business News and Information
On April 3rd, our Friend of the Brand Ariana DeBose, wore an OMEGA Constellation timepiece to the annual Hope Rising Benefit, hosted by the Association for Frontotemporal Degeneration (AFTD) at The Ziegfeld Ballroom in New York City. For this special event, which raised $1.9 million, Ariana wore a 28 mm Constellation with a stainless-steel case featuring a unique meteorite dial pattern. The timepiece is adorned with diamond hour markers, a diamond-paved bezel and a Constellation star in 18K white gold. (131.15.28.60.99.001).
Web Release
10-04-2025
- Entertainment
- Web Release
Ariana DeBose, wore an OMEGA Constellation timepiece to the annual Hope Rising Benefit
Last night, our Friend of the Brand Ariana DeBose, wore an OMEGA Constellation timepiece to the annual Hope Rising Benefit, hosted by the Association for Frontotemporal Degeneration (AFTD) at The Ziegfeld Ballroom in New York City. For this special event, which raised $1.9 million, Ariana wore a 28 mm Constellation with a stainless-steel case featuring a unique meteorite dial pattern. The timepiece is adorned with diamond hour markers, a diamond-paved bezel and a Constellation star in 18K white gold.
Yahoo
13-02-2025
- Health
- Yahoo
Wendy Williams speaks out amid fight for freedom from court-ordered guardianship
Wendy Williams is opening up about her fight for freedom from her yearslong court-ordered guardianship. Speaking to "Nightline" co-anchor Byron Pitts recently over the phone from a New York care facility, the legendary talk show host said, "How am I doing? I'm still in prison, so to speak." Williams, who has been in a court-ordered guardianship since 2022, described where she has been living for the past few years. "As I said, because it's a fact, this is the memory unit. That's what this floor is called, the memory unit. And it is true that these people who live here don't remember anything," she said. "Look, I don't belong here at all. This is ridiculous." Williams' care team announced in February 2024 that she had been diagnosed with frontotemporal dementia and primary progressive aphasia -- a diagnosis Williams now vehemently disputes. Wendy Williams diagnosed with primary progressive aphasia, frontotemporal dementia "Frontotemporal dementia? Uh, how dare you. And I'm not saying you, because I've been accused of having that," she said. "And how do you prove it by keeping me locked here so that you can't… I can't see, look. I can't go out." Dementia is an umbrella term that describes "the impaired ability to remember, think or make decisions that interferes with doing everyday activities," according to the Centers for Disease Control and Prevention. Frontotemporal dementia is caused by degeneration of the frontal and/or temporal lobes of the brain, according to the Association for Frontotemporal Degeneration. It is the most common form of dementia for people under the age of 60 and there is currently no known cure. Primary progressive aphasia is "a neurological syndrome in which language capabilities become slowly and progressively impaired," according to the National Aphasia Association. The organization notes that, unlike other forms of aphasia, primary progressive aphasia does not result from a stroke or brain injury and instead is caused by the "deterioration of brain tissue important for speech and language." Now, in response to Williams publicly questioning her diagnosis, Williams' court-appointed guardian is asking the court for a new medical evaluation. In a previous statement to ABC News, an attorney for the guardian said that because the case is under seal, she couldn't defend herself from the multiple claims against her but denied all wrongdoing, adding that "...all of the court-appointed Guardian's activities are regulated and supervised by the Court." Further attempts by ABC News at obtaining a comment from the guardian have not been successful. A source tells ABC News that Williams' court-appointed attorney plans to file in court a request to terminate the guardianship. Williams hosted her popular eponymous talk show for 13 seasons between 2008 and 2022. Wendy Williams' niece shares glimpse into the life of her aunt in new doc The former queen of daytime's life was chronicled in the docuseries "Where Is Wendy Williams?" that aired in February 2024. It painted a dark picture of her reality. At the time it aired, Williams' niece, Alex Finnie, defended the docuseries and denied that it exploited her aunt as some critics have argued. The docuseries also resulted in a lawsuit, which is still ongoing, by Williams' guardian on Williams' behalf against A&E. "I will say this, first and foremost, my aunt is the executive producer of this documentary," Finnie told ABC News at the time. "And she said, 'Now is the perfect time, because I wanna take ownership of my story.'" "Impact x Nightline: What's Happening with Wendy Williams?" is now streaming on Hulu. Disney is the parent company of Hulu, ABC News and "Good Morning America." Wendy Williams speaks out amid fight for freedom from court-ordered guardianship originally appeared on
