FTD Support Forum

Provides online support for sufferers and for caregivers through discussion forums, online chats and private messaging. There are currently over 3,800 members.

Mission Statement: The purpose of this forum is to provide a place for safe and secure communications for people who have been diagnosed with FTD and those who care for loved ones with FTD. Members are dedicated to supporting one another in a sensitive, respectful and sincere manner. This forum also encourages increased awareness of FTD within the medical community and the general public, with the belief that knowledge will bring improved access to support networks that are emerging on the internet and elsewhere.

FTD Support: Clinics & Meetings

FTD Support Group Los Angeles (The Greater Los Angeles Area) Meeting Date : Every other Monday Meeting Time : 7:30pm to 9:00pm Meeting Location : Contact the Facilitator for Location Facilitator : Joanne Sackheim Telephone # : 310-276-0347 E-mail Address : Supporting Organization : In partnership with UCLA Attendees: This group is mainly for spouses, but others are welcome.

FTD Support Group University of California at Irvine Meeting Date : First Wednesday of the month Meeting Time : 9:30am Meeting Location : Contact the Facilitator for Location Facilitator : Shirley Sirivong and Jean Moonilal Telephone # : 949-824-8135 Supporting Organization : Collaborative effort between UC-Irvine and Orange County Chapter of the Alzheimer’s Association Attendees: Open

Denver Adult and Child FTD Support Group (Denver Area) Denver, CO Meeting Date : Second Tuesday of the month Meeting Time : 5:00PM to 7:00PM Meeting Location : Cornerstone Baptist Church 9941 Lone Tree Parkway Located at the SW corner of Lone Tree Parkway and Lincoln Ave. Room 133 – for Adults Room 102 – for Children Lonetree, CO. 80124 Facilitator : Terencia Beauvais-Nikl, RN Telephone # : 303-985-2440 Attendees: Anyone

Caring for Individuals with Frontotemporal Dementia (FTD) or Primary Progressive Aphasia (PPA) Chicago, IL Area Meeting Date : Third Monday of the Month Meeting Time : 6:00pm to 7:30pm Meeting Location : Northwestern Memorial Hospital 251 E. Huron Chicago, IL Telephone # : 312-503-0604 Supporting Organization : Northwestern University Cognitive Neurology and Alzheimer’s Disease Center Attendees: Caregivers Website : Northwestern PPA/FTD Support Group, Caregiver Support Calendar for Northwestern University (pdf file) Other Information : All groups meet at Northwestern Memorial Hospital, but note variability in pavilion location and room each month. Please verify the location in the calendar link above.

FTD Support Group for Family Members & Caregivers (Baltimore-Timonium MD Area) Meeting Date : Second Wednesday Meeting Time : 11:00am to 12:30pm Meeting Location : Alzheimer’s Association 1850 York Road, Suite D Timonium, MD 21093-5143 Facilitator : Susan M. NewHouse, LCSW-C, Social Worker, FTD Clinic, JHMI Telephone # : 410-502-2981 E-mail Address : Supporting Organization : FTD Clinic at John Hopkins Medical Institutions The Eugene Feinblatt Family Stroke Fund The Alzheimer’s Association Attendees: Free and Open to the Public. For Family Members and Caregivers. Other Information : Find out the latest information on FTD. Share experiences, resources, questions & coping strategies. Click here for a flyer about this Support Group (Word Document) For Directions to the Meeting Place click here (Word Document)

Frontotemporal/Pick’s Disease Care Partner Group Grand Rapids, MI Meeting Date : Monthly, Fourth Wednesday Meeting Time : 6:00pm to 7:30pm Meeting Location : St. Mary’s Health Care Wege Center Room 14 300 Lafayette SE Grand Rapids, MI 49502 Facilitator : Karen Bugg RN LSW Telephone # : 616-913-1044 Supporting Organization : Greater Michigan Chapter – West Michigan – Alzheimer’s Association (616) 459-4558 Attendees: Open

FTD Support Group Marlton NJ Meeting Date : 4th Wednesday of each month Meeting Time : 6:30pm to 8:00pm Meeting Location : Alzheimer’s Association 3 Eves Drive Suite 310 Marlton, New Jersey 08053 Facilitator : Lisa Radin Telephone # : 856-797-1212 E-mail Address : Supporting Organization : Delaware Valley Chapter of Alzheimer’s Association Attendees: Open Other Information : Please call to be sure meeting is being held

FTD Support Group New York, NY Area Meeting Date : Twice Monthly, First and Third Thursday Meeting Time : 4:30pm to 5:45pm Meeting Location : The Alzheimer’s Association 360 Lexington Ave., 4th Floor New York, NY Facilitator : Jill Goldman, MS, MPhil, CGC Telephone # : 212-305-7382 E-mail Address : Supporting Organization : Under the auspices of Columbia University and the NY Chapter of the Alzheimer’s Association Attendees: Anyone Other Information : Anyone interested in attending must call Jill Goldman

FTD Support Group – Cary Meeting Date : 3rd Tuesday of each month Meeting Time : 7:00 pm Call for Meeting Location : Contact : Tayloire Queen Telephone # : 919-796-5752 E-mail Address : Call for more details.

FTD Support Group – Raleigh Meeting Date : 2nd Monday of each month Meeting Time : 7:00 pm Location : Alzheimer’s Association NC Office, 1305 Navaho Dr. Suite 101 Raleigh NC 27609 Contact : Brandi McCullough E-mail address :

FTD Support Group Bryn Mawr, PA Philadelphia Area Meeting Date : 3rd Thursday of each month Meeting Time : 7:00pm to 9:00pm Meeting Location : Bryn Mawr Presbyterian Church The Witherspoon Room 625 Montgomery Avenue Bryn Mawr , PA 19010 Facilitator : Lisa Radin Telephone # : 215-561-2919 x334 E-mail Address : Supporting Organization : Delaware Valley Chapter of Alzheimer’s Association Attendees: Open Other Information : Please call to be sure meeting is being held.

Houston, TX Area FTD Support Group We meet the second Thursday of each month at the United Cerebral Palsy office (located in the Neighborhood Centers, Inc. building). 4500 Bissonnet, Suite 350, Bellaire, Texas 77401. Contact: Angela Kimble, Telephone #: 713-851-9943 Meeting Time: 6:30-8:00 pm. *Please enter at the glass doors by the glass brick. Take the elevator or stairs to the 3rd floor, and follow the signs directing you to our meeting.

FTLDA strives to provide information on its website that is accurate, timely and useful.The Frontotemporal Lobar Degeneration Association website should not be considered medical guidance or professional advice. FTLDA, its affiliates or agents, or any other parties involved in the preparation or publication of this site are not responsible for errors or omissions in information provided on this site or any actions resulting from the use of such information. Corrections and additions to this site shall be made when necessary or as time permits.