The article by Staff Writer Tom Avril (Philadelphia Inquirer, June 28, 2010) highlighted research, funded in part by AFTD, that is studying inclusion body myopathy associated with Paget’s disease of bone and frontotemporal dementia (IBMPFD). The article included comments from AFTD grant recipient J. Paul Taylor, MD, PhD, and AFTD Medical Advisory Council Members Virginia Lee, PhD, and John Trojanowski, MD, PhD.

This three-part documentary on Frontotemporal Dementia (FTD) shows how the lives of three patients have changed  and how this has affected the people around them. Klaas Jansma is a psychologist involved in the Dutch National Steering Committee for Young People with Dementia. Pieter Wolswijk is a geriatric psychologist and freelance filmmaker. This documentary is an initiative of the Intercollegiate Group of Geriatric Psychologists in the Arnhem Region, the Netherlands. Read a description or view a movie trailer at http://www.youtube.com/watch?v=KVOnX4uGk0s.

Price: $27 inclusive of shipping and handling. For each copy sold in the USA and Canada, $3 will be donated to AFTD.

Available through:   Klaas Jansma via email at krjansma@hotmail.com

Published: New York Times
April 9, 2010

“Disease could have turned Bob violent. He had it another way.”

Elinor Lipman is an acclaimed writer of essays, newspaper columns and eight novels, one of which, Then She Found Me was adapted into a feature film in 2007 that was directed by and starred Helen Hunt.   Five years ago she wrote a series of columns for the Boston Globe that revealed the daily adventures of married life with her love,  Bob.  In a recent article in the New York Times,  Elinor Lipman writes of her husband again.  Her description of his struggle with frontotemporal dementia reveals a love that will touch every reader, especially those who see a reflection of their own experiences with the disease.

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Read more about the ADDF-AFTD Drug Discovery Partnership and prior year awards.

photo by Jessica Kourkounis

Sadness drove Barry Vernick into bed for nearly six weeks after his wife’s death in November 2008 from complications of FTD. Then a friend convinced him to visit Manna, an organization in Philadelphia, Penna. that prepares and delivers meals to people with life-threatening illness. They needed volunteers. The head chef invited him into the kitchen and said, “You should cook.”

And cook he did. Recently, Vernick’s story was profiled in an audio slideshow produced by WHYY public radio in Philadelphia in which he describes the value of volunteering in the process of healing after his wife’s death.  According to Vernick giving back to others through working at Manna has “saved my life” and gives him a way to honor his wife’s legacy.

Visit WHYY’s Coming of Age page and click on Barry Vernick’s photo to view this moving audio slideshow.