Press

On Sunday, May 5, 2019, CBS’s 60 Minutes aired a segment about FTD titled “Frontotemporal dementia: Devastating, prevalent, and little understood.”

The 2019 Southeast Family Conference for patients, families, and caregivers faced with PSP, CBD, and MSA, will be June 6-7, 2019, in Raleigh, NC.

Free livestreaming of the the 2019 AFTD Education Conference will be available for those unable to attend the event on Friday, May 3, 2019, in Los Angeles.

CurePSP and Texas Health Presbyterian Hospital will host a Caregiver Retreat on Saturday, May 4, 2019, at Texas Health Presbyterian Hospital, Dallas. Sessions will be held from 11:00 a.m. until 3:00 p.m. Lunch is included in the retreat cost. Fee is $15 after April 1, 2019. Refunds may be made up to 1 day before the event. This…

Research opportunity seeks to better understand the metabolism of tau.

CurePSP will host an Education Day focusing on Parkinson’s Disease and Atypical Parkinsonisms with sessions for patients, caregivers, and healthcare professionals on Thursday, April 11, 2019, in the Cardinal Ballroom at The Cultural Arts Center at Glen Allen, Virginia. The Patient and Caregiver program will focus on PD and Atypical Parkinsonisms while the Healthcare Professionals portion will…

As we celebrate our second enrollment anniversary this week, we are grateful that those affected by frontotemporal diseases are helping advance the science through their involvement with the FTD Disorders Registry (FTDDR). Since the Registry launched on March 28, 2017, some 2,373 persons affected by this devastating disease have enrolled, which includes persons who have…

What began four years ago with AFTD and the Bluefield Project as a shared idea for a tool in the movement to create therapies and find a cure for frontotemporal diseases has grown into a database that on its second enrollment anniversary numbers more than 2,000 participants. Since our first goal-breaking day, the FTD Disorders Registry (FTDDR) has…

While the FTD Disorders Registry (FTDDR) would not be possible without our founding and supporting organizations, our true foundation continues to be the people who comprise the community that is working to end frontotemporal disorders. Each individual who enrolls, whether diagnosed person, family member, caregiver or friend, becomes a citizen scientist and contributes information. Researchers,…

The FTD Disorders Registry (FTDDR) is a shared vision between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to Cure Frontotemporal Dementia. A diagnosis of FTD can be isolating, so the Registry is meant to be a resource for patients and families to appreciate their place within the broader FTD disorders community and also apply their…