Researchers have patented an innovative molecular test that can measure a genetic mutation linked to both FTD and ALS. Members of the Mayo Clinic’s Neurodegenerative Diseases Lab — led by Leonard Petrucelli, chairman of the neurology department at the clinic’s Florida location — received approval for the patent on September 20. The molecular test (also known as an immunoassay) is able to diagnose properties of the mutated gene C9ORF72, which causes the most common genetic forms of FTD and ALS. Dr. Petrucelli sits on the scientific advisory board of the FTD Biomarkers Initiative.
Actress Kimberley Williams-Paisley, whose mother passed away from PPA, is featured in the cover story of the October/November issue of Neurology Now. Williams-Paisley wrote a book about her mother’s FTD journey, Where the Light Gets In, published earlier this year (AFTD discussed the book with her this past April.) In the Neurology Now article, Williams-Paisley discusses the challenges she and her family faced while caring for her mother, the regrets she still feels about her mom’s final years and the importance of FTD education and awareness. Read the entire article here.
Peggy Plagemen, a Virginia woman who lost her husband to FTD, shared her story with WWBT-TV (Richmond) in a segment that aired October 12. Peggy told reporter Sarah Bloom that Wayne, her husband of nearly four decades, began to exhibit “rather bizarre behavior” — a hair-trigger temper, a lack of concern for personal hygiene, and an uncharacteristic tendency to sneak out of the house to see other women. Wayne’s behavior tore the couple apart. Finally, after multiple incorrect diagnoses, a doctor told him that he had FTD. Wayne died a little over a year ago, and, Peggy told WWBT, “I’m still grieving for him.” A veteran of AFTD’s Food for Thought campaign, Peggy shared her story to help raise awareness of FTD. You can watch the full story at the WWBT website.
To mark the second annual World FTD Awareness Week, two newspapers published op-eds written by people whose lives have been touched by FTD. On October 1, the Altoona Mirror in Pennsylvania ran an op-ed written by Cindy Odell, who was diagnosed with FTD five years ago. Odell maintains a blog documenting her FTD journey. Later, on October 6, the Delaware State News published an article by Eugenia Thornton, whose husband of 41 years has FTD. Thornton writes that her husband, a “career soldier [who] once was a leader of men,” is now almost completely reliant on the caregiving staff at the veterans’ home where he lives. Thornton writes that she marked World FTD Awareness Week by holding a Food for Thought event in Dover, Delaware.
Host: Tam Smith
Location: Tam’s Home
Event: The host will be having a garage sale where snacks (and their recipes) and FTD educational and awareness materials will be available.