Links and Resources
Links to frontotemporal dementia research and caregiving organizations, as well as publications of interest:
UCSF’s Memory and Aging Center
A world center for frontotemporal dementia diagnosis, treatment and research. See video links for doctor and caregiver discussions about frontotemporal dementia.
The Association for Frontotemporal Degeneration
The first US organization dedicated specifically to improving the lives of families coping with frontotemporal dementia and advancing research into treatment and a cure. The AFTD staffs a toll-free Helpline and offers research and drug discovery grants.
A website created by FTD experts at University College London, providing short articles on recently published scientific papers or relevant dementia conferences.
The National Institutes of Health
The world’s largest funder of basic science and medical research. The National Institute of Neurological Disorders and Stroke is a division of the NIH focused specifically on neurological diseases like frontotemporal dementia.
When Dementia is in the House
A Canadian collaboration to develop educational materials for children and teens living with someone who has dementia.
FRONTIER Frontotemporal Dementia Research Group in Sydney, Australia
An frontotemporal dementia-focused research group in Australia. Produced a free, downloadable, 38 page booklet entitled “Younger Onset Dementia – A Practical Guide.”
Clinical trials information
Searchable database of clinical trials in the US and around the world. Information about a trial's purpose, who may participate, locations, and phone numbers for more details.
FTD Support Forum
An online forum for frontotemporal dementia patients and their caregivers to exchange information and find support.
Frontotemporal Dementia Caregiver Support Center
A repository of frontotemporal dementia-related articles and web links.
Pick’s Disease Support Group (United Kingdom)
A British support group for patients, families and caregivers.
CurePSP: Foundation for PSP | CBD and Related Brain Diseases
A foundation focused on progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) and related brain diseases.
The Family Caregiving Alliance
Provides a public voice for caregivers and champions their cause through education, services, research and advocacy. Comprehensive website includes the Family Care Navigator, a state-by-state list of available caregiver resources.
“What if it's not Alzheimer’s?” book by Lisa Radin and Gary Radin
An invaluable reference book with an introduction by the Radins who cared for a family member with frontotemporal dementia and subsequent chapters by over 20 leading specialists in frontotemporal dementia and related dementias.
The Neil L. Radin Caregivers Relief Foundation
Founded by the authors of the above book, this foundation provides financial relief to caregivers of individuals with frontotemporal dementia.
“The Sweetest Love” article by Elinor Lipman in The New York Times
A moving first person perspective written by the spouse of an individual affected by frontotemporal dementia.
"Little Known Brain Disease..." article by Thomas Curwen in The Los Angeles Times
This article highlights frequent challenges to obtaining a diagnosis of frontotemporal dementia and gives a genuine description of the daily life of one patient and his family.
Episode of the "Charlie Rose Brain Series" focused on FTD
CFR Investigator and Internal Advisory Board Member Dr. Bruce Miller and other leading clinicians and scientists discuss frontotemporal dementia and Alzheimer's disease.
"When Illness Makes a Spouse a Stranger" article by Denise Grady in The New York Times
This article beautifully portrays the challenges of caregiving for someone with frontotemporal dementia and also highlights UCSF-led research efforts for a cure.
"Studies Tie Abnormal Build-up of Protein to Dementia" article by Denise Grady in The New York Times
This article details a potential therapeutic for progranulin-deficient frontotemporal dementia studied by CFR Investigators Drs. Li Gan and Bruce Miller.
"50-50 chance: Does a rare form of dementia lurk in Amy Eissler's genes?" in The Oregonian
A moving 3-part account of one woman's decision to undergo genetic testing for frontotemporal dementia at UCSF.
This American Life radio programs
In Act IV (at 46:08 minutes, titled "One Brain Shrinks, Another One Grows" ) of NPR's This American Life, Julianne Hill describes her 6 year old son's struggle to understand his father's FTD diagnosis. Several years later, Ms. Hill recorded "Heart Shaped Box" (Act III, at 46:50 minutes), which describes her efforts to make her husband, Doug Hill, real to their then 10 yr old son, Nick, as Mr. Hill entered the final stages of his disease.
"Looks Like Laury, Sounds Like Laury"
A remarkable, must-see movie chronicling the experiences of one woman with FTD and her circle of family and friends.