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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

Billionaire Invests in Brain Research

Diagnosed with a degenerative brain disease in 2009, Richard Rainwater “has poured more than $50 million into a research effort known as the Tau Consortium…. The project is named after the tau protein, which is believed to malfunction and be at the core of various brain diseases….” Click here to read the full article.