FTD in the News

Radio Segment Explores FTD’s Effect on One Father-Daughter Relationship

FTD took the ability to speak clearly from Arpiar Saunders, better known as Arpy. Leading up to his death in late 2014, Arpy was left with the ability to say just a handful of phrases, which he repeated endlessly in phone calls and voicemails to his daughter, Alice. In a recent radio segment, released as part of WBUR Boston’s Kind World series, Alice talked about how meaningful those handful of phrases were, and the special gift that lets them live on. Read and listen to Alice’s story at the WBUR website.

Cookbook Author Donating a Portion of Sales to AFTD

Starting in 1960, Adrienne Zausner and her husband, Martin, began to travel frequently to Europe in search of the continent’s most delicious meals, befriending chefs and learning their recipes along the way. After Adrienne developed primary progressive aphasia, her good friend and regular dining companion Joan M. Harper compiled those recipes, along with stories about her friend’s travels, into a book called Cooking with Adrienne: A Story of Friendship and Food (recently the subject of a short piece in the New York Times). Ten percent of the sales of this unique cookbook/memoir hybrid will be donated to AFTD. Cooking with Adrienne is currently for sale exclusively through Amazon.

Share Your Stories, Advance FTD Science with the FTD Disorders Registry

The FTD Disorders Registry, the first-ever online registry designed to bring together persons diagnosed with frontotemporal degeneration, their caregivers and family members, has officially launched. Accessible at ftdregistry.org, the Registry gives people affected by FTD the opportunity to teach researchers about the various FTD disorders by securely sharing their stories, thereby informing their work toward developing treatments and, ultimately, a cure. In return, Registry participants will receive recruitment notifications for upcoming clinical studies as well as research news updates. AFTD and the Bluefield Project to Cure Frontotemporal Dementia co-founded the registry with generous support from the Rainwater Charitable Foundation’s Tau Consortium program. For more information, visit ftdregistry.org.

AFTD 2017 Conference: 5/5/2017

AFTD’s 2017 AFTD Education Conference will be held on May 5th, 2017 at the Sheraton Inner Harbor Hotel in Baltimore, MD.

Keynote Speaker:

Halima Amjad MD, MPH, is Assistant Professor of Medicine in the Division of Geriatric Medicine at Johns Hopkins University. Her father was diagnosed with primary progressive aphasia when she was graduating from medical school in 2009. She shared her family’s journey and coping strategies in a prize-winning essay “Caring for Dementia: Returning to the Village” written for the John A. Hartford Foundation’s Better Caregiving Better Lives story contest in 2015.

Who Should Attend?

AFTD’s Education Conference provides opportunities for caregivers, persons living with FTD and healthcare professionals to meet in person, share resources and learn about the latest developments in FTD research. The program will offer new opportunities for participation by people living with a diagnosis of FTD, and more breakout session options than ever before.

Register today by accessing this link. Walk-in registration will also be available.

View the 2017 Conference Flyer and Agenda here.

Monty Python Member’s Family Speaks Up for FTD Awareness

The family of Monty Python member Terry Jones granted an interview to the British newspaper the Observer on April 16 to help spread awareness of FTD. Jones was diagnosed with PPA in 2015; today, his speech is limited to only a few words. His daughter, Sally, tells the newspaper that while her 75-year-old father loves spending time with old friends, “he no longer has the ability to tell them how pleased he is to see them.” One of those friends — fellow Monty Python member Michael Palin — recalled the early days of Jones’s diagnosis: “He was very matter of fact about it and would stop people in the street and tell them, ‘I’ve got dementia, you know. My frontal brain lobe has absconded.’” Click here to read the full interview.