The Las Vegas Review-Journal published a story about 65-year-old Jacob Sobotka, a man affected with primary progressive aphasia. Read about the challenges between a functioning mind and a mouth that resists his efforts to make speech.
Randy Thomas has FTD. He is 63. His wife Denise faces the difficult decision of figuring out if, when and how to put him in a care facility. Read about this multi-part story from Kansas City.
Dr. William Seeley’s research about mapping the course of bvFTD is discussed in an article posted to the University of California, San Francisco website.
AFTD helped support two important research conferences this November. The 8th Brain Research Conference: RNA Metabolism in Neurological Diseases was organized by Elsevier Publications in San Diego as a prelude to the annual Society for Neuroscience conference. This symposium was chaired by Fen-Biao Gao, University of Massachusetts Medical School and former AFTD Pilot Grant awardee Paul Taylor, St. Jude’s Children’s Research Hospital. Research scientists from 23 countries participated and shared the latest in cutting edge research into RNA biology and how it impacts diseases like FTD, ALS, Alzheimer’s and more. This meeting brought about a truly international exchange of ideas and allowed scientists to share insights across neurological diseases.
AFTD also lent its support to a historic clinical research meeting in San Francisco: Establishing Therapeutic Efficacy in Familial Frontotemporal Degeneration. Adam Boxer of the UCSF Memory and Aging Center was the meeting organizer. Clinicians from 21 countries participated, sharing their data with the goal of building an international network of familial FTD cohorts for clinical trials. Ten short years ago, patients and caregivers could only hope for a diagnosis and the chance to put a name to their illness. Now the FTD research community is discovering commonalities in the underlying biology of brain diseases and meeting to create action plans to forge an international network for future clinical trials. This is a huge step forward, due to an energized, committed network of patients, caregivers, volunteers, donors, clinicians and scientists.
Stuart Zuckerman, aged 62 and affected with FTD, ran his last road race on November 23rd. A former marathoner, Stuart is now limited by his FTD. Stuart’s son and daughter, Eric and Jennifer, ran with him and raised money for AFTD as a way to honor him. Click here for the full article.