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Former officer’s FTD diagnosis blindsides family

A former undercover officer and SWAT team member, Tom Niman declined dramatically as a result of frontotemporal dementia. “The progression was so rapid his daughter said her father had seizures where he would jerk or stutter and his short-term memory started a swift decline.” Read more here.

Single mother spreads awareness after her husband dies of rare disease

As Rare Disease Day 2015 nears, The Boston Globe interviewed Katie Brandt, who is AFTD’s New England volunteer coordinator and Massachusetts General Hospital’s FTD support group co-leader. Katie is working to raise awareness about FTD, which claimed the life of her husband, Mike Brandt, diagnosed at the age of 29. The article, available here, also talks about FTD symptoms, progression and associated challenges facing diagnosed persons and their caregivers. Learn more about Katie’s awareness-building campaign, Love Is Out There.

Research Study seeking volunteers diagnosed ALS with FTD

A long term research study sponsored by Northwestern University, Chicago on the Genetics of Familial and Sporadic ALS, (NCT00821132) is seeking volunteers who have been diagnosed as having ALS with frontotemporal degeneration. Please see the following link for details and study coordinator contact information: https://clinicaltrials.gov/ct2/show/NCT00821132?term=nct00821132&rank=1

Clinical Trial for PGRN Mutation Carriers

FORUM Pharmaceuticals announces dosing of the first patient in a clinical trial to evaluate FORUM’s investigational therapy FRM-0334, which is targeting PGRN mutations. For more information, read the press release. To learn more about the clinical trial, visit clinicaltrials.gov

“Still Alice” Rings True

The Philadelphia ABC affiliate produced a segment about the struggles associated with early onset dementia featuring a family affected by FTD