Association for Frontotemporal Dementias

AFTD Job Opening

sdenny — Tue, 09 Mar 2010 19:27:56 +0000

The Association for Frontotemporal Dementias is accepting applications for the position of Director of Communications and Marketing. Click on the job description for more details and information on how to apply.

Catch us on CNN

mleahy — Mon, 01 Feb 2010 16:20:01 +0000

CNN featured FTD throughout the day on Monday, December 14, 2009 in several pieces that highlighted the broad impact of the disorders on patients and families. AFTD is grateful to the Sparks family, Dr. Murray Grossman and all those who made possible this important opportunity for public awareness. View the full story any time on CNN.com

Caregiver profiled on public radio

sdenny — Thu, 21 Jan 2010 17:41:01 +0000

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.

Manitoba TV features AFTD Volunteer

sdenny — Mon, 11 Jan 2010 15:03:17 +0000

Susan Gustafson, AFTD Regional Coordinator for Canada’s Western Provinces, was featured in a local television spot in Winnepeg, Manitoba on Tuesday, Janauary 5, 2010. Susan was interviewed as part of the kick-off of Alzheimer’s Awareness month in Manitoba. The piece describes some of the symptoms of frontemporal dementia and the challenges caregivers face. View the video archived on Shaw TV.

Fall Newsletter Available

sdenny — Mon, 23 Nov 2009 15:36:23 +0000

AFTD’s Fall 2009 newsletter is now in the mail to postal recipients and posted on the website. To read all about the latest happenings in research, support for caregivers and FTD awareness click here. Be sure to register with AFTD via the link on our home page to receive your copy of the newsletter three times each year.

The Role of Palliative Care in Dementia

sdenny — Mon, 16 Nov 2009 20:18:54 +0000

An October 20, 2009 New York Times article points out that “The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness.” In later stages of the disease life prolonging treatments may increase symptoms of confusion and anxiety, and fail to address pain adequately.

Understanding the course of progression and the physical impact in later stages can guide family decisions about life prolonging treatment vs. palliative care. Read the article for more information.

Ft. Myers Article Raises Awareness

sdenny — Mon, 16 Nov 2009 19:12:57 +0000

The November 8, 2009 edition of the Fort Myers News-Press included an article of the Willin Family’s experiences with frontotemporal dementia and Ryan’s death September 10, just shy of his 40^th birthday. Tia Willin’s account of the challenges they faced getting a diagnosis and advocating for resources will be too familiar to many FTD caregivers. Her generosity in sharing their story publicly increases others’ awareness of these needs and informs the public about AFTD as a resource.

For the full article click here. The last page has two photos that accompanied the article.

Dallas paper puts FTD on page one

mleahy — Mon, 12 Oct 2009 14:02:32 +0000

AFTD Board Member Bill Brown and his family share their experiences with FTD with a reporter from the Dallas Morning News. Michelle Brown, Bill’s wife and mother to their three children, was diagnosed with FTD in 2006. The family openly discusses the impact of the disease on their lives to raise awareness of FTD. Their story was featured on page one of the Saturday, October 10, 2009 edition. Click here to read the entire article.

FTD-Foods that Delight Cookbook

sdenny — Thu, 08 Oct 2009 17:38:49 +0000

Raise money for FTD research by supporting the recent publication of a very special cookbook, FTD – Foods that Delight. “Our purpose is not to just raise funds for much needed research, but to bring an awareness to FTD,” said Terry Walter, who spearheaded the project for the Walter Charitable Fund.

The book includes favorite recipes solicited from local chefs, FTD families and friends and features personal accounts of several families who have confronted these devastating disorders. It is available through the Walter Charitable Fund for $20.00 with shipping included. All proceeds will support AFTD’s research initiatives. Use this form to order the cookbook. For more information about the Walter Charitable Fund and to order online visit their website www.aftdgolf.com.

AFTD Travel Grants

sdenny — Thu, 01 Oct 2009 19:12:13 +0000

The Association offers modest financial assistance for caregivers intereseted in attending an FTD caregiver conference. The grants may be used to defray the cost of travel, lodging, conference fees and/or respite for your loved one in order to attend. For more information see the application materials.