FTD Treatment Study Group (FTSG)

AFTD is dedicated to improving the lives of families coping with FTD and to advancing research into treatment and a cure. In 2010, in partnership with interested parties from industry and other nonprofit organizations, AFTD co-founded The Frontotemporal Degeneration Treatment Study Group (FTSG) to accelerate the development of effective treatments for FTD and related disorders by promoting scientific interactions and collaborations between academia and industry.

Upcoming Initiatives

Bethesda, Maryland, March 2016: “Building an Infrastructure to Support FTLD Therapeutic Development,” will be co-hosted by AFTD, through its FTD Treatment Study Group (FTSG), and the National Institute of Neurological Disorders and Stroke (NINDS). This conference will provide an opportunity for participants from academia, industry, and government to discuss issues of common interest in clinical trial design for FTD and learn about new resources for clinical investigators. In addition, representatives from the FDA will host a panel discussion to answer questions on the regulatory aspects of drug development and clinical trials for FTD.

The March 2016 FTSG Conference is made possible by support from the following sponsors:


The Arnow Family Fund

Platinum Sponsor


Gold Sponsors

Print FTSG Forum Small Paint
FTSG.Biogen FTSG.Merck_c
FTSG.Bluefield_logo_color FTSG GTauRx Paint

Silver Sponsors

FTSG.Cydan_logo_full FTSG.BMS301


2015 – 2016 FTD Treatment Study Group Steering Committee

Adam Boxer, M.D., Ph.D., Chair, UCSF
Susan Dickinson, M.S., AFTD Executive Director
Michael Grundman, M.D., Grundman Partners
David Knopman, M.D., Mayo Clinic
Rodney Pearlman, Ph.D., The Bluefield Group
Marg Sutherland, Ph.D., NINDS
Nadine Tatton, Ph.D., AFTD Scientific Director
Steve Whitaker, M.D., Omeros Corp

Prior FTSG Initiatives

Miami, Toronto and Indianapolis, 2010: A series of meetings were held to gauge the interest on the part of nonprofits, pharma, biotech and academic partners in coming together to better define and address the challenges in developing the first disease-modifying therapeutics for the FTD disorders. Toward the end of this year the FTSG was formed.

Las Vegas, March 2011: A workshop titled “FTD, the Next Therapeutic Frontier,” focused on pre-clinical aspects of FTD drug development. Sessions focused on animal models, tissue models, successful translational initiatives in other disease areas, federal resources, and the potential for developing animal and compound registries.

San Diego, November 2011: FTSG sponsored a companion meeting focused on clinical aspects of FTD drug development, which was held as a half-day symposium within the annual meeting, “CTAD: Clinical Trials in Alzheimer’s Disease.” Sessions covered epidemiology, clinical criteria, cognitive, functional and imaging outcome measures as well as biomarkers. A cogent case was made that FTD trials are feasible and have the potential to benefit a broader group of neurodegenerative diseases, including Alzheimer’s, ALS, Parkinson’s and other neuroinflammatory diseases.

Published Review

March 2013: The proceedings from these meetings were first published by Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association and are available at FTD – The Next Therapeutic Frontier Part 1 and FTD – The Next Therapeutic Frontier Part 2.