Viewpoints of FTD: Addressing Barriers to Diagnosis, FTD Care, and Research Participation Faced by Black/African Americans
In 2011, researchers estimated there to be 50,000-60,000 cases of FTD in the United States. Today, however, researchers believe this figure to be an undercount. One reason for this is a notable lack of representation of diverse populations in FTD research, such as the Black/African American community. Research on the experience of Black/African Americans on…
Read MoreFDA Grants Breakthrough Therapy Designation to Experimental FTD Therapy
The U.S. Food and Drug Administration (FDA) has granted a “breakthrough therapy designation” to latozinemab, an experimental treatment for FTD caused by a GRN genetic mutation. The drug is being developed by Alector in partnership with biopharmaceutical firm GSK. “With this designation, we look forward to continued productive conversations with the FDA, recognizing the unmet…
Read MoreUK Researchers Discover How to Block Toxic Protein Associated with FTD and ALS
Researchers at the University of Sheffield have discovered how to prevent the production of toxic repeat proteins that cause the death of nerve cells in neurodegenerative diseases like FTD and ALS. The study was centered specifically around FTD caused by a mutation in the C9orf72 gene, FTD’s most common genetic cause. In most people, the…
Read MoreDear HelpLine: What to Look for When Considering Facility Care for a Person with FTD
Dear HelpLine, We have reached the difficult decision to look for long-term facility care for my sister, and I feel overwhelmed because I don’t know what to look for or where to start. What things should I consider when trying to find a facility for her? The decision to begin looking for professional and…
Read More“The Longest Goodbye”: Montana Woman Shares Family’s FTD Journey in Interview
Krista Payzant of Montana characterized FTD as a thief that “strips the person of who they are” in an interview published in November by the news station KRTV3. Sharing the experiences of her FTD journey with her husband, Justin, Payzant highlights the challenges of diagnosis and living with FTD, as well as the need for…
Read MoreFebruary 26, 2024: In-Person Meet & Greet in Fresno, Calif.
Join and learn from others who understand the FTD journey at this AFTD Meet & Greet event, taking place in Fresno, California on Monday, February 26, starting at 6:00 p.m. PT. AFTD Ambassador Traci English will be hosting the event, which will take place in the Fig Meeting Room in the Fresno County Public Library…
Read MoreFresno, Calif. Meet & Greet
Join and learn from others who understand the FTD journey at this AFTD Meet & Greet event, taking place in Fresno, California on Monday, February 26, starting at 6:00 p.m. PT. AFTD Ambassador Traci English will be hosting the event, which will take place in the Fig Meeting Room in the Fresno County Public Library…
Read MoreAlzheimer’s Association Journey WA State Chapter Journey Conference
The Alzheimer’s Association Washington State Chapter is hosting its annual Journey Conference for care partners of persons with dementia. AFTD Ambassador Joanne Linerud will be hosting AFTD’s information table at the event. The conference will provide information and support to care partners of persons diagnosed with diseases such as FTD, Alzheimer’s disease, and other forms of dementia. Topics…
Read MoreNY State Senator Michelle Hinchey Introduces Bill to Create State FTD Registry
New York State Senator Michelle Hinchey introduced a bill on January 3 to create a statewide FTD registry that would document diagnoses. Senate Bill S7874 would require healthcare providers in New York to report diagnoses of FTD to the state Department of Health, which would then publish the collected data in the registry; the public…
Read MoreAlzheimer’s Association New England Family Conference
The Alzheimer’s Association is hosting a free virtual educational conference for those living with dementia, care partners, family members, and the general public March 1-2, 2024. Live translation to Spanish will be available on both days. The event offers the opportunity to hear from a panel of those living with dementia and care partners who…
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