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Partners in FTD Care #24: An Evolving Understanding of ALS with Frontotemporal Degeneration
This AFTD publication focuses on ALS with FTD, an especially complicated and challenging form of FTD. It tells the story of Cathy R., a woman in her 60s, who increasingly shows symptoms of both conditions; her husband Michael, however, is…
A Genetic Perspective on ALS and Frontotemporal Degeneration
Partners in FTD Care Spring 2018 Approximately 40% of affected individuals with FTD have a family history that includes at least one other relative diagnosed with a neurodegenerative disease. Their FTD is said to be familial, or hereditary. Hereditary FTD…
Common Presentations of ALS with FTD
Partners in FTD Care Spring 2018 ALS can present in myriad ways, with weakness in any segment of the body. Roughly 75% of patients present with limb weakness, 25% present with bulbar weakness (trouble speaking or swallowing), and a small…
A Shared Genetic Mutation
Partners in FTD Care Spring 2018 The discovery in 2011 that the C9orf72 gene mutation can cause both frontotemporal degeneration (FTD) and amyotrophic lateral sclerosis (ALS) has transformed a long-held belief that ALS is purely a neuromuscular disorder and that…
What to Do About… ALS with FTD
Partners in FTD Care Spring 2018 Over the last ten years, there has been increasing recognition of a continuum between ALS and frontotemporal degeneration (FTD). Up to half of people with ALS also show symptoms of FTD, while up to…
A Caregiver’s Perspective…on Slow-Developing ALS with FTD
Partners in FTD Care Spring 2018 by Miki Paul, PhD, psychologist, former caregiver of husband who had ALS with FTD, and facilitator of the AFTD phone support group for caregivers of loved ones who have ALS with FTD I lost…
An Evolving Understanding of ALS with Frontotemporal Degeneration
Partners in FTD Care, Spring 2018 Download the full issue (pdf) Amyotrophic lateral sclerosis (ALS), also called “Lou Gehrig’s disease,” is caused by the death of motor neurons, nerve cells that control voluntary muscles. Doctors and researchers are increasingly recognizing…
AFTD News: Spring 2018, Vol. 15, Issue 1
In this issue: Find Help and Share Hope Via AFTD’s New Website…; Advancing Research: FTD Treatment Study Group Meets in Washington D.C.; AFTD Welcomes Five New Staff; AFTD Webinar: Genetics and Genetic Counseling; International Conference on Frontotemporal Dementias to Be…
For Families Like Ours
After Joanne Linerud’s mother Sylvia was diagnosed with FTD, AFTD offered information, access to a growing national network of support, and Comstock Respite grants. Joanne was about to “piece together a team of support” for her family’s journey. Joanne chose…
AFTD Volunteer Profile: Dr. A. Brandt Henderson
For more than three years, AFTD volunteer Dr. A. Brandt Henderson has used his professional background as a public speaker to be a voice and an advocate on behalf of our community. He and his wife Marie have participated in…