MEDIA

AFTD 2022 Education Conference plenary session "Navigating the Uncertainty of Familial FTD." Upon diagnosis, families may wonder whether FTD could run in the family. And in approximately 40% of cases, it does. The emotional journey of knowing or not knowing one’s potential risk can be a rollercoaster ride. This session addresses the specific challenges caused by the potential risk of inheriting FTD by examining the range of feelings that accompany a diagnosis. It will also consider the factors that affect one’s decision-making regarding genetic testing. Moderator: Esther Kane, MSN, RN-CDP Presenter: Laynie Dratch, ScM, CGC

Over 10 million people in the US have a neurodegenerative condition. Half of these people have Alzheimer's Disease making it the most common neurodegenerative condition in the US. Among the remaining, a large population suffer from frontotemporal dementia (FTD). However, FTD and Alzheimer's are very often misdiagnosed for each other and even the terms are used interchangeably. In reality, they are two different diseases that have varying effects on behavior. It is important to differentiate between the two so that patients and families can know what to expect and receive targeted therapies. Join us as we discuss FTD and Alzheimer's Disease, their similarities, differences, risk, diagnostic tests, progression stages, treatments and clinical trials with Dr. Murray Grossman and Dr. David Wolk from the University of Pennsylvania. #Alzheimer’s #Dementia #FTD #brainhealth SUBSCRIBE! https://www.youtube.com/c/CureTalks?sub_confirmation=1 LET'S CONNECT! Website: https: https://www.curetalks.com/ Facebook: https://www.facebook.com/CureTalks Instagram: https://www.instagram.com/cure_talks_tx/ Linkedin: https://www.linkedin.com/company/curetalks/?viewAsMember=true Twitter : https://twitter.com/curetalks Pinterest: https://in.pinterest.com/trialxcuretalks/_saved/

English and Spanish captions are available with this video. Para subtítulos en español, ve a configuración en el menú del video, selecciona subtítulos y luego español. Familial or sporadic ALS/MND, the importance of genetic counselling and testing can´t be emphasized enough. Join us for this scenario-based discussion which will look at real situations ranging from an ALS/MND asymptomatic carrier to someone whose parent had ALS/MND, but has not done genetic testing. Panel: Laynie Dratch – Genetic Counsellor Ashley Crook – Genetic Counsellor Jean Swidler - Confirmed C9orf72 mutation carrier Jessica Mabe – Daughter of PALS, no genetic testing done to date Moderator: Cathy Cummings - The International Alliance of ALS/MND Associations

Frontotemporal degeneration (FTD) is a debilitating neurodegenerative disease that dramatically affects the lives of both the patient and their loved ones. Hear the stories of three dedicated FTD caregivers and their experience with the Penn Frontotemporal Degeneration Center. MORE INFO BELOW: For more information, visit: https://ftd.med.upenn.edu Watch Diane's full story here: https://www.youtube.com/watch?v=0WkpMF6aWhc Watch Sandy's full story here: https://www.youtube.com/watch?v=aG8zuYNyX2Y Watch Jamie's full story here: https://www.youtube.com/watch?v=t-OGt4laINo Learn more about FTD research and care happening at Penn through our Virtual Tour of the Penn FTD PPG and Penn FTD Center: https://www.youtube.com/watch?v=4G6cnk-G1kE&t=3s

Murray Grossman, MD, director of the Penn Frontotemporal Degeneration (FTD) Center introduces the virtual 2020 FTD Caregiver Conference with an overview of FTD. Due to the ongoing Covid-19 pandemic, the Penn FTD Center's 2020 Caregiver Conference previously postponed until November 13, 2020 has been canceled. Please stay tuned for further updates.

Lauren Massimo, PhD, CRNP discusses decision making in advanced illness in Frontotemporal degeneration (FTD). Due to the ongoing Covid-19 pandemic, the Penn FTD Center's 2020 Caregiver Conference previously postponed until November 13, 2020 has been canceled. Please stay tuned for further updates.

Brain donation is crucial in advancing the science of FTD. But navigating the donation process can be complicated. How does a person donate their brain, and to whom? When is this decision best made? And why is the brain such an important resource for FTD researchers? In this Perspectives in Research Webinar, presented jointly by AFTD and the FTD Disorders Registry, Dr. David Irwin and Dr. Lauren Massimo of the University of Pennsylvania join other experts to answer these questions and more. They also explain how brain donation helps move FTD research forward, and guide you through the donation process. This Perspectives in Research Webinar was made possible through the generous support of Alector. By watching this webinar, you will: - Understand how brain donations make strides toward new FTD treatments. - Recognize the importance of discussing brain donation early in the FTD journey. - Identify the options available for pursuing brain donation. - Learn the important steps in the brain donation process.

The symptoms of behavioral variant FTD (bvFTD), the most common FTD disorder, include impaired executive functioning and social comportment. Caregivers of persons with bvFTD face a unique set of challenges, including young age, competing life demands such as work and raising children, lack of public awareness about FTD, and limited supportive resources. After a diagnosis, nurses and social workers play a critical role in supporting families to navigate and adapt to the ongoing challenges. This one-hour educational program features Cynthia Clyburn and Dr. Lauren Massimo of the Univeristy of Pennsylvania. It provides healthcare professionals and persons affected by FTD with a clear understanding of the most common bvFTD behaviors, their impact on families, and person-centered interventions to manage behaviors and improve quality of life for persons diagnosed and caregivers. Learners will be able to: - Describe at least four symptoms that are common in persons with bvFTD. - Recognize the psychosocial impact on families of persons with bvFTD and describe recommendations for support. - List three effective person-centered approaches to respond to challenging behaviors.