Frontotemporal Disorders: Information for Patients, Families, and Caregivers

Resources

Federal Government

National Institute on Aging
Alzheimer’s and related Dementias Education and Referral (ADEAR) Center

P.O. Box 8057
Gaithersburg, MD 20898-8057
1-800-438-4380 (toll-free)
adear@nia.nih.gov
www.nia.nih.gov/alzheimers

National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20894
1-800-352-9424 (toll-free)
www.ninds.nih.gov/Contact_Us
www.ninds.nih.gov

MedlinePlus
National Library of Medicine
www.medlineplus.gov

Organizations

Association for Frontotemporal Degeneration
1-866-507-7222 (toll-free)
info@theaftd.org
www.theaftd.org

ALS Association
1-800-782-4747 (toll-free)
alsinfo@als-national.org
www.alsa.org

The Bluefield Project to Cure Frontotemporal Dementia
rodney.pearlman@bluefieldproject.org
www.bluefieldproject.org 

CurePSP
1-800-457-4777
info@curepsp.org
www.curepsp.org

FTD Disorders Registry
1-888-840-9980 (toll-free)
info@ftdregistry.org
www.ftdregistry.org

National Aphasia Association
naa@aphasia.org
www.aphasia.org

Caregiver Services

Eldercare Locator
1-800-677-1116 (toll-free)
www.eldercare.gov

Family Caregiver Alliance
1-800-445-8106 (toll-free)
www.caregiver.org/contact
www.caregiver.org

National Academy of Elder Law Attorneys, Inc.
1-703-942-5711
naela@naela.org
www.naela.org

Caregiver Support

Association for Frontotemporal Degeneration
www.theaftd.org/life-with-ftd/support-for-caregivers

FTD Support Forum
www.ftdsupportforum.com

PPA Support Group
www.groups.yahoo.com/group/PPA-support

Well Spouse Association
1-800-838-0879
info@wellspouse.org
www.wellspouse.org

Diagnosis, Treatment, and Research Centers

Columbia-Presbyterian Medical Center
Department of Neurology
New York, NY
1-212-305-6939
http://columbianeurology.org/patient-care/aging-and-dementia

Indiana University School of Medicine
Indiana Alzheimer’s Disease Center
Indianapolis, IN
1-317-963-5500
http://iadc.medicine.iu.edu

Johns Hopkins University School of Medicine
Frontotemporal Dementia and Young-Onset Dementias Clinic
Baltimore, MD
1-410-502-2981
www.hopkinsmedicine.org/psychiatry/specialty_areas/
geriatric_neuro/frontotemporal_dementia

Massachusetts General Hospital
Frontotemporal Disorders Unit
Boston, MA
1-617-726-5571
www.ftd-boston.org

Mayo Clinic
Department of Neurology
www.mayoclinic.org/frontotemporal-dementia

Rochester, MN
1-507-538-3270

Jacksonville, FL
1-904-953-0853

Scottsdale, AZ
1-800-446-2279

Northwestern University Feinberg School of Medicine
Cognitive Neurology and Alzheimer’s Disease Center
Chicago, IL
1-312-908-9339
www.brain.northwestern.edu

University of Alabama, Birmingham
Neurology Department, Division of Memory Disorders
Birmingham, AL
1-205-996-3679
www.uab.edu/medicine/neurology/clinical-programs/memory

University of California, Los Angeles
Behavioral Neurology Clinic
Los Angeles, CA
1-310-794-1195
www.ftd.ucla.edu/clinic

University of California, San Diego
Department of Neurosciences Movement Disorder Center
La Jolla, CA
1-858-657-8540
https://neurosciences/ucsd.edu

University of California, San Francisco
Memory and Aging Center
San Francisco, CA
1-415-476-6880
www.memory.ucsf.edu/ftd

University of North Carolina, Chapel Hill
Department of Neurology
Chapel Hill, NC
1-984-974-4401
www.med.unc.edu/neurology

University of Pennsylvania Health System
Penn Frontotemporal Degeneration Center
Philadelphia, PA
1-215-349-5863
http://ftd.med.upenn.edu

Washington University
Department of Neurology
St. Louis, MO
1-314-867-3627
https://neuro.wustl.edu

Acknowledgments

NIH thanks the following people for their contributions to the vision and creation of this booklet:

Darby Morhardt, PhD, LCSW
Research Associate Professor
Director of Education, Cognitive Neurology and Alzheimer’s Disease Center
Northwestern University Feinberg School of Medicine

Sandra Weintraub, PhD
Professor of Psychiatry and Behavioral Sciences
Clinical Core Leader, Cognitive Neurology and Alzheimer’s Disease Center
Northwestern University Feinberg School of Medicine

Jennifer Merrilees, RN, PhD
Clinical Nurse Specialist
Department of Neurology
Memory and Aging Center
University of California, San Francisco

Catherine Pace-Savitsky, MA
Former Executive Director
Association for Frontotemporal Degeneration

Susan Dickinson, MS, CGC
Executive Director
Association for Frontotemporal Degeneration

Fecha de publicación: Febrero 2017
Última actualización: Marzo 24, 2017