FTD in the News

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.

AFTD Support Group Leader Profiled in Illinois Newspaper

Katrina Hellman and her husband, Darren, who has FTD, were the subjects of an article published in the Pantagraph on April 7. Darren, just 51 years old, began showing symptoms of FTD as early as 2010; he frequently forgets words, ignores social cues and no longer understands humor. Dr. Tom Ala, Darren’s neurologist, points out that FTD is “not a new disease but people are becoming more aware of it.” Dr. Ala adds that Darren’s case seems atypically mild, and that “he has many good years ahead of him.” Katrina is the leader of an AFTD-affiliated support group that meets monthly in Tremont, Illinois. Read the full article on the Pantagraph website.

AFTD to Congress: Reject Genetic-Information Bill

In a March 17 letter (pdf) to four key members of Congress, AFTD Executive Director Susan L-J Dickinson spoke out against a bill that would require employees to divulge genetic information before joining employee wellness programs. The Preserving Employee Wellness Programs Act (H.R. 1313), if passed, would “impose harsh new penalties on employees who refuse to make this private [genetic] information public to their employer.” As Dickinson points out in her letter, genetic mutations are the likely cause of an estimated 15 to 40 percent of FTD cases. “While it aims to expand workplace wellness programs to improve public health outcomes,” Dickinson writes, “this legislation would significantly undercut patient privacy protection for employees at high risk for workplace and societal discrimination given the nature and severity of their illnesses or risk of illness.” Read the whole letter here.