WebMD Staff Writer Shares His Experience as an ALLFTD Participant
WebMD staff writer Damian McNamara, MA, shared his experiences as an ALLFTD participant in a post published on the website’s blog. “I always figured I would stay a safe distance — write and summarize study findings and medical advances for Medscape and WebMD,” McNamara said. “Keep it professional, stick to the science, and report the…
Read MoreAviadoBio Begins Clinical Trial to Evaluate AVB-101 for Treatment of FTD
Today, AviadoBio announced the start of its Phase 1/2 clinical trial to evaluate AVB-101 as a one-time treatment for candidates who have the progranulin (GRN) genetic variant. AFTD applauds AviadoBio’s innovative approach to treating frontotemporal degeneration (FTD). AVB-101 is an investigational gene therapy that will be delivered using a minimally invasive neurosurgical procedure on the…
Read MoreAdvancing Hope: FTD Disorders Registry Deploying Upgraded Platform Under New Director
The FTD Disorders Registry is a powerful tool in the effort to discover treatments and a cure for FTD, leveraging the stories of persons diagnosed with FTD, their caregivers (both current and former), and family members to spur innovation. By sharing their insights and experience with the Registry, more than 6,200 people have already provided…
Read MoreCase Report Co-Authored by AFTD Board Member Highlights Varying Presentations of FTD-GRN
A case report recently published in the journal Clinical Parkinsonism & Related Disorders highlights how even between people with the same variant of genetic FTD caused by a GRN mutation (FTD-GRN), the presentation of the disease can vary greatly. The study was co-authored by AFTD Board member and assistant professor of medicine at Johns Hopkins…
Read MoreAFTD Webinar: Answering Questions and Providing Support — A Q&A with AFTD HelpLine Staff
Understanding and managing FTD can be overwhelming for those living with a diagnosis, their care partners, and healthcare professionals. The AFTD HelpLine is here to provide support. Last year, HelpLine staff connected more than 3,000 people with essential information, resources that aid in managing the disease, and ways to find further assistance. In this AFTD…
Read MoreU.S. Rep. Jennifer Wexton Announces Progressive Supranuclear Palsy Diagnosis
Representative Jennifer Wexton of Virginia announced last week that she would not be seeking re-election after receiving a diagnosis of progressive supranuclear palsy (PSP). In April, Wexton announced that she had been diagnosed with Parkinson’s disease (PD). At the time, Wexton was having difficulty speaking, walking, and keeping balanced. Yet as she navigated the challenges…
Read MoreWorld FTD Awareness Week Guest Feature: Advocating for the Future, Advocating for Love – Insights From a Lifelong FTD Journey
Despite the grief, frustration, and sadness that can affect families on the FTD journey, many have channeled those experiences positively, using them for motivation to create a better future for others affected by the disease. For Linde Lee Jacobs, her lifelong experiences with FTD and her love of her family helped shape her into a…
Read MoreAdvancing Hope: AFTD Holds Inaugural Research Roundtable Conference to Convene Stakeholders in FTD Research
The FTD Research Roundtable is a new initiative at AFTD to enable discussion and shared problem-solving across the biopharma companies developing treatments for FTD and the regulatory agencies that evaluate the benefit and risk of proposed treatments. The inaugural 2023 FTD Research Roundtable convened representatives from fifteen biopharmaceutical company members of the Roundtable, the Food…
Read MoreEmma Heming Willis and AFTD CEO Susan L-J Dickinson Interviewed on NBC’s “Today Show”
Emma Heming Willis gave updates on her family’s FTD journey and discussed the disease alongside AFTD CEO Susan L-J Dickinson, MSGC, in an interview broadcast on the Today show on September 25, the second day of World FTD Awareness Week. Heming Willis shared her decision to become an advocate to raise awareness of FTD and…
Read MoreStudy Assesses Machine Learning in Classifying FTD and Alzheimer’s in Underrepresented Groups
A study published in the medical journal The Lancet assessed the use of machine learning and clinically gathered data (such as cognitive and behavioral screening scores) to classify and discriminate FTD and Alzheimer’s disease (AD) in underrepresented groups. Diagnosing FTD and other dementias is complicated, with FTD taking 3.6 years on average to diagnose. As…
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