AFTD  Continuing Education for Support Group Facilitators

Advancing Treatment and Research for Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation and Familial Frontotemporal Dementia Subjects (LEFFTDS)

February 10, 2016

Howard Rosen, MD, Associate Professor in Residence, UCSF Department of Neurology Memory and Aging Center 

This presentation discusses two research studies, ARTFL and LEFFTDS, which explore potential new treatments for behavioral variant FTD (bvFTD), primary progressive aphasia (PPA), corticobasal syndrome (CBS) and progressive supranuclear palsy (PSP).  Dr. Rosen also discusses the benefits these studies will have on our FTD-community.

To see to the archived webinar click here.

The Importance of Genetic Research in FTD
May 19, 2014
Jill Goldman, CGC  and Nadine Tatton, PhD

This presentation by Jill Goldman, CGC, Columbia University and Nadine Tatton, PhD, AFTD Scientific Director, provides an overview of the genetics of FTD and the research advantages involved for developing treatments and medications. It will also demonstrate the importance of people with FTD and their families participating in research to move the field closer to a cure.

To listen to the archived presentation click here.   To see the slides click here.

Creative Approaches to Self-Care Problems: A Conversation with Geri Hall, Ph.D., ARNP
February 24, 2014
Geri Hall, Ph.D., ARNP and Matt Sharp, M.S.S.

Self-care issues in FTD — especially bvFTD — differ significantly from those encountered in Alzheimer’s disease (AD). Trying to adapt care from books or lectures on AD, caregivers soon realize the needs are different, yet there are few FTD specific guides available. While care planning follows some basic goals, it is largely the results of trial, error, and suggestions from knowledgeable allied health professionals and other families dealing with FTD. The purpose of this presentation is to have a dialogue about common questions posed by participants, offering suggestions for self-care, and understanding why they might or might-not work.

To listen to the archived presentation, click here.  To see the slides, click here.

Advocacy and the FTD Family Caregiver – An Important voice in National Public Policy Discussions
September 23, 2013
Ian Kremer and Matt Sharp, M.S.S.

FTD families know the impact of public policy decisions in healthcare, entitlement programs and research funding but may not feel empowered in the discussions.  This webinar highlights the importance of caregivers’ perspective on national healthcare policy and provide strategies for them to become part of the conversation. An overview of the National Alzheimer’s Project (NAPA) is provided and efforts underway at AFTD are discussed as well as potential opportunities for caregivers to become more involved at the state or federal level.

Click here to listen to the archived webinar presentation.
Click here to download the slides and AFTD Guidance on State Plans.

FTD Clinical Trials
May 13, 2013
Susan Dickinson, CGC, M.S. and Jill Shapira, Ph.D., RN 

As we enter a promising new phase in FTD research there is good reason for much hope. But decades of drug development for other diseases demonstrates that the path to effective treatments will most likely be neither swift nor straight. Progress will require that people with FTD and their families understand and participate in emerging trials of potential disease-modifying treatments. The goal of this session is to educate and empower people with FTD and their families as they face increasing opportunities to participate in research that will lead to the first approved drugs for FTD.

To listen to the archived webinar presentation, click here.

Click here to download the slides and additional material.


Administration on Aging Webinar Series on Dementia

Webinar 4 of a 5-part series from the National Institute on Aging and the Administration for Community Living speaks to the topic of younger onset dementia.

Click here for: Slides   Audio   Transcript  References


The Dr. Lawrence Albert Memorial Webinar Series on PPA

The Cognitive Neurology and Alzheimer’s Disease Center (CNADC), The National Aphasia Association (NAA) and The Association for Frontotemporal Degeneration (AFTD) collaborated to form the Speech Language Pathologist (SLP) Primary Progressive Aphasia (PPA) Education Coalition. This webinar series seeks to improve understanding and treatment approaches for SLPs working with persons with Primary Progressive Aphasia.

This webinar series is possible because of a generous sponsorship by Kathi and Peter Arnow, the family of Larry Albert, who battled PPA until 2011.

Webinar 1:  The ABCs of PPA for SLPs: Clinical Attributes, Biology and Care of Primary Progressive Aphasia

Sandra Weintraub, PhD
May 1, 2013

Dr. Sandra Weintraub, Professor of Psychiatry, Neurology and Psychology at Northwestern University CNADC, describes dementia and the specific clinical syndromes that can be identified early in the course of illness. The underlying neuropathologic diseases that cause each of these dementia syndromes are identified and discussed. PPA symptoms including decreased speech fluency and difficulties with word finding are reviewed in the context of treatment options.

To listen to the archived webinar presentation, click here.   To download the slides, click here.

Webinar 2: Treatment for persons with PPA: An adaptable communication support approach

Melanie Fried-Oken, Ph.D., CCC/Sp

Maya L. Henry, PhD, CCC-SLP
June 27, 2013

This presentation describes principles of speech-language treatment for individuals who present with PPA. A communication support approach is emphasized, with multi-modal restorative, compensatory and environmental techniques implemented over time. Three clinical pathways are identified for treatment: Phase I uses a multi-modal restorative approach with unaided techniques for individuals with mild PPA; Phase II uses a balance of restorative and compensatory techniques for adults with moderate PPA; and Phase III uses compensatory techniques with significant environmental input from communication partners and settings. Documentation of successful outcomes will be discussed with examples of measurable goals. Video and case studies of individuals with PPA at each of the three stages will highlight the value of a flexible communication support philosophy during all phases of treatment.

To listen to the archived presentation, click here.

Webinar 3:
Living with Primary Progressive Aphasia: Challenges Experienced by PPA Patients and Families and How SLPs can Help!
Darby Morhardt, MSW, LCSW
Jamie Reilly, Ph.D

While the recognition of Primary Progressive Aphasia is growing, it is vital the education and treatment for patients and families keeps pace with this knowledge. PPA typically begins in the 50s or 60s; therefore, the younger age of onset presents patients and families with unique environmental, developmental and financial issues and stressors. Challenges include finding services and support networks sensitive to those with language symptoms while also being appropriate for younger individuals and families. This Webinar will identify available services and interventions the SLP and other members of the care team can use to support the person with PPA and their family.

To listen to the archived presentation, click here.  To download the slides, click here.

CME Course by Columbia University
December 21, 2011

To see the program and files from Columbia’s CME course entitled “Is It Alzheimer’s Disease or Frontotemporal Degeneration?  An Update on Diagnosis, Management, and Research,” please click here.  Scroll down the page, then click “show program” for the .pdf files.  (CMEs were available for those attending on December 12 only.)