2020 AFTD Education Conference Breakout Sessions


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Clinical Issues (1:00 p.m.)

It Takes a Team
Maya Lichtenstein, MD
Geisinger Medical Center, Wyoming Valley

This session will discuss the roles different types of physicians and specialists can play in treating FTD symptoms and how to develop an effective clinical team even in less medically resource-rich locations.

Brain-Behavior Connections in Behavioral FTD
Lauren Massimo, PhD, CRNP
FTD Center, University of Pennsylvania

The cognitive and behavioral symptoms of FTD result from disease-related changes in the brain. Understanding the connection between brain and behavior can lead to care that is compassionate as well as more effective.

Current and Emerging Therapeutic Approaches to FTD
David Irwin, MD
FTD Center, University of Pennsylvania

This session will examine symptom management using medications that act on neurotransmitter systems effected in FTD. It will also explore emerging nonpharmacological interventions and approaches to potential disease-modifying therapeutics.

Understanding PPA
Maya Henry, PhD, CCLP
Moody College of Communication, University of Texas at Austin

This session will provide an overview of primary progressive aphasia, including the clinical features that distinguish the three forms of PPA, the regions of the brain affected in PPA, and the range and progression of symptoms.

Genetics of FTD
Jamie Fong, MS, CGC
Baylor College of Medicine

This session will provide an overview of the genetics of FTD, the role of genetic testing, and the benefit of knowing your family genetic status.

Care Strategies (2:00 p.m.)

A Positive Approach to bvFTD: A View from the Inside Out
Melanie Bunn, RN, MS
Positive Approaches to Care

Behaviors we interpret as disruptive or challenging are often a sign of an underlying problem or unmet need. This session will focus on understanding the individual behind the unmet need and using person-centered/directed approaches to reduce the frequency and intensity of challenges related to behavioral variant FTD.

Advocating for Care and What I Wish I Knew
Jennifer Pilcher, PhD, CMC   Clear Guidance
Katie Brandt, MM   
Massachusetts General Hospital, Frontotemporal Disorders Unit

Knowing what questions to ask and where to go for help is a big part of the challenge faced by people living with FTD and their families. Two professionals experienced in coordinating care will discuss ways to navigate the complex issues brought on by FTD.

Developing Communication Strategies
Maya Henry, PhD, CCLP
Moody College of Communication, University of Texas at Austin

Communication is key to maintaining quality of life. This session will discuss practical strategies and tools for people with PPA and other forms of FTD and their care partners to maximize communication with each other throughout the disease.

Approaches to Care in ALS/FTD
Beth Rush, PhD
Mayo Clinic Florida

The overlap of FTD and ALS causes particularly complex care challenges and support needs. This session will discuss strategies and resources for managing the physical and cognitive symptoms while caring for the care partner as well.

Apathy and Grief
Lauren Massimo, PhD, CNRP  FTD Center, University of Pennsylvania
Matt Sharp, MSS   

This session is a moderated conversation for people with FTD to discuss their experience of apathy and finding motivation to stay active and engaged.

Support and Networking (3:20 p.m.)

Questions & Discussion for Care Partners
Halima Amjad, MD   Johns Hopkins University School of Medicine
Chuck Anastasia   
AFTD Support Group Volunteer, former care partner

This facilitated forum will provide care partners and caregivers an opportunity to ask questions, share lessons learned and network with each other around shared experiences.

Questions & Discussion on Research
Murray Grossman, MD   FTD Center, University of Pennsylvania
Jamie Fong, MS, CGC   
Baylor College of Medicine

This session will provide an opportunity for people to ask questions and talk about FTD research advances, the ALLFTD network, current studies, and future opportunities to participate in clinical trials.

Questions & Discussion for People with FTD
Chiadi Onyike, MD
Johns Hopkins University, FTD/YOD Clinic

This session will provide an opportunity for people diagnosed with FTD to ask questions and talk about their experiences living with FTD.

Online Platforms for FTD Networking
Lauren Gauthier   AFTD
Sharon Denny, MA   

This session will feature members of the AFTD community who have used online platforms to support one another and spread awareness. The discussion will offer an opportunity to share ideas, inspiration, and the positive contributions of online networking.

Finding Hope in Loss: A Discussion for Former Caregivers
Bridget Moran McCabe, MPH   | AFTD
Ann Schoonover, MSW   

This session will provide an opportunity for those who have lost someone to FTD to come together and discuss where they are in the journey, and talk with AFTD staff about their current needs.

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