The Penn FTD Center, in collaboration with the University of Pennsylvania Center for Neurodegenerative Disease Research and the Association for Frontotemporal Degeneration, has created a booklet of current and reliable information on the role that genetics plays in FTD, the genes that have been associated with hereditary FTD, and genetic testing.
Published in 2013, this brand new booklet from the Association for Frontotemporal Degeneration helps individuals and their loved ones take a strategic approach to a diagnosis of FTD and prepare for the emotional, physical, and practical changes the diagnosis brings.
The Association for Frontotemporal Degeneration’s Task Force on Families with Children developed this booklet for parents with young children and teens. What About the Kids?is a sensitive, practical guide for parents to help their children deal with a parent who has FTD.
Developed by the National Institute on Aging (National Institutes of Health), this 30-page guide offers consumer-friendly information about Fronotemporal Degenerative spectrum disorders and their causes, symptoms, diagnosis, and treatment, including helpful advice for caregivers.
What if it’s Not Alzheimer’s edited by Lisa Radin and Gary Radin
This comprehensive guide, the first to deal specifically with frontotemporal degeneration, provides a wealth of information to both healthcare professionals and caregivers. Designed as both a resource and a reference guide, it contains twenty-five chapters full of practical information that every caregiver needs, beginning with medical facts exploring how FTD differs from Alzheimer’s, to clinical, medical and rehabilitation care issues. Updated and revised in 2008.
Publisher: Promethius Books, 2003
The Association for Frontotemporal Degeneration
Radnor Station Building 2, Suite 320
290 King of Prussia Road
Radnor, PA 19087
Helpline: 866-507-7222 (Toll Free)
Alzheimer’s Disease Education and Referral (ADEAR) Center
National Institute on Aging
P.O. Box 8250
Silver Spring, MD 20907-8250
www.nia.nih.gov/Alzheimers (Use keyword search “frontotemporal degeneration” or “frontotemporal dementia.”)
ADEAR’s web site will help you find current, comprehensive information and resources from the National Institute on Aging (NIA).
ALS Association (ALSA)
27001 Agoura Road, Suite 150, Calabasas Hills, CA 91301-5104
225 N. Michigan Ave., Fl. 17, Chicago, IL., 60601
800-272-3900 National Helpline
11350 McCormick Road, Suite 906, Hunt Valley, MD 21031
Support groups are available for families and caregivers of those with FTD, and a list of local support groups can be found at the AFTD website.
Examples of FTD support groups in the Philadelphia area:
FTD SUPPORT GROUP: Contact: Sandy Karger at or at 610-647-2842 or Sylvia Gentry at or at 267-323-2089. This group meets the second Thursday of each month at 7pm, Main Line Reformed Temple, 410 Montgomery Ave. Wynnewood, PA 19096.
FTD SUPPORT GROUP for adult children of persons with young onset dementia. This group is targeted to younger adult children in their 20s, 30s and 40s caring for a parent diagnosed with dementia under the age of 65. Under the auspices of the Delaware Valley Chapter of the Alzheimer’s Association. Every third Wednesday of each month, 6:30-8:30pm, Ralston Penn Center, Room 346, 3615 Chestnut Street, Philadelphia, PA. Help Line 1-800-272-3900.
Family members and caregivers may not live near an FTD support group, or there may be other impediments to attending a FTD support group. In these circumstances, there are phone-in support groups sponsored by AFTD that may meet your needs. Currently, phone support groups are running for people who face primarily behavioral symptoms, language symptoms, are parents caring for a spouse with FTD and have school age children at home, or have recently lost a loved one. For more information about one of the phone support groups contact .
Alzheimer’s disease is very different from FTD because memory is such a prominent impairment in Alzheimer’s disease but not FTD. Nevertheless, in underserviced areas of the country where there are few local resources for FTD, support groups sponsored by the Alzheimer’s Association may be available.
CurePSP Support Group for patients, families, caregivers and anyone affected by PSP, CBD, MSA and other Atypical Parkinsonian Disorders Contact Christin Salemno at 215-829-2347 or at . This group meets the third Thursday of every month from 1 to 3 pm in the 2nd Floor Conference Room of Penn Center at 9th & Pine Street, Philadelphia, PA 19107.
FTD Support Forum
This moderated on-line community is designed to provide a place for safe and secure communications for people who have been diagnosed with FTD as well as those who care for a loved one with FTD.
The FTD Support Forum also strives for increased awareness of FTD within the medical community and the general public.