Delaware, Maryland, New Jersey, New York, Pennsylvania, Washington, D.C., Virginia, West Virginia
Frontotemporal Degeneration (FTD): The Dementia No One Knows About
Monday, March 14, 2016, 6:00 to 8:00 p.m.
Alzheimer’s Disease and Related Disorders, New York City’s Manhattan Office
360 Lexington Avenue, 3rd Floor (Between 40th & 41st Streets)
New York, NY 10017
Dr. Edward Huey, Assistant Professor of Psychiatry & Neurology, Columbia University and Jill Goldman, MS, MPhil, CGC, Senior Staff Associate & Genetic Counselor, Columbia University.
This event is co-sponsored by AFTD. Topics covered will include:
-Symptoms and behaviors of FTD.
-How FTD differs from Alzheimer’s.
-What healthcare professionals will look for to pinpoint the disease.
-The role of genetics.
The event is free, but registration is required. Call Alzheimer’s Alzheimer’s Disease and Related Disorders, New York City at 646-744-2900, or log on to www.alznyc.org/educationreg to register for these meetings.
An event flyer is available here.
Alzheimer’s Disease-Related Dementias 2016 Summit
March 29-30, 2016
The National Institute of Neurological Disorders and Stroke is sponsoring this summit of neuroscientists, physicians, and public and private stakeholders in discussions of key challenges and special opportunities in research on Alzheimer’s disease-related dementias (ADRD). The goal of the 2016 Summit is to review and assess the progress on the research recommendations developed by the 2013 ADRD Workshop, refine and add new recommendations based on recent scientific discoveries, solicit input, and update priorities and timelines for addressing the Alzheimer’s disease-related dementias. Registration is free, but online registration is required. Click here to access the summit’s main website page, which has links to information about the agenda and logistics. Click here to register.
Awareness and Support Opportunities
Alexa Fernandez painted a picture for her grandmother, who is diagnosed with FTD, to hang in her room at her nursing home. Alexa decided she wanted to use her art work to help fight FTD. She and her mother had her painting printed on t-shirts, bags, and other fund things, and they’ll donate $5 from each item sold to AFTD. Click here to order.
Bill’s Best BBQ Sauce Raises Money for AFTD: Bill’s Best BBQ, a company selling a homemade BBQ sauce created by Bill Fehon (now affected with FTD), will donate 10% of all sales to AFTD! It’s organic, sold on Amazon.com and at several other locations, and will soon be in Whole Foods! Check it out on Facebook.
AFTD’s regional coordinator volunteers are the “local” ambassadors for AFTD and the principal coordinator of volunteer activities focusing on awareness, fundraising and all other aspects of the mission in his/her region. They represent AFTD throughout their region and support the volunteers. Questions not related to volunteering should be directed to AFTD’s HelpLine at 866-507-7222 or [email protected] and an AFTD staff member will be happy to assist you.
Middle Atlantic Regional Coordinators
Nancy Cummings: Delaware, Maryland, New Jersey, New York, Virginia, Washington DC, West Virginia
Joanna Dauber: Pennsylvania
Alzheimer’s Disease Research Center at Mount Sinai Medical Center
Martha Stewart Center for Living & Klingenstein Clinical Health Center
1440-1450 Madison Avenue
New York, NY 10029
Director: Mary Sano, Ph.D.
Contact: Julia Diaz at 212-241-9382 OR 212-241-1844
Sergievsky Center, Taub Institute
630 W. 168th St., P&S Box 16
New York, NY 10032
Contact: Jill Goldman, CGC, at 212-305-7382 or [email protected]
NYU Silberstein Alzheimer’s Institute at Langone Medical Center
The Pearl Barlow Center for Memory Evaluation and Treatment
145 East 32nd Street, 2nd Floor
New York, NY 10016
Clinical Director: James Galvin, M.D.
Associate Director: Melanie Shulman
Drexel University College of Medicine
Memory and Cognitive Disorders Program
245 N. 15th St
Philadelphia, PA 19107
Johns Hopkins University
Johns Hopkins FTD Center
600 N. Wolfe St.
Baltimore, MD 21287
Contact: Mary Anne Wylie, M.S., RN, APN, at 410-502-2981
University of Pennsylvania
Center for FTD
3400 Spruce Street, 3 W Gates
Philadelphia, PA 19104
Contact: Christine Ray, at 215-349-5873
University of Pittsburgh
The Alzheimer Disease Research Center
4th Floor (Suite W-421)
3459 Fifth Avenue
Oakland, PA 15213
Denotes group is led by an AFTD affiliated leader who has participated in additional FTD training.
Note: Before attending your first group, please contact your facilitator for more details.
|DE – Rehoboth||Every other Tuesday, 4 p.m.–5:30 p.m.||Dr. Judith E. Pierson
|Henlopen Junction Mall
715 Rehoboth Avenue
Rehoboth Beach, DE
|DE – Wilmington
||Last Friday of the month, 12 p.m.||Carol Lovett
|Christ United Methodist Church
6 N. Clifton Street
|MD – Baltimore area||2nd Wednesday of the month, 11 a.m.–12:30 p.m.||Johns Hopkins FTD Clinic
1850 York Road, Suite D
Timonium, MD 21093-5143
|MD – Metro DC area
||4th Monday of the month; informal networking at 6 p.m. and meeting from 6:30 p.m.–7:30 p.m.||Elaine Rose
|Arden Courts Kensington
4301 Knowles Court
Kensington, MD 20895
|NJ – Southern Delaware Valley||4th Thursday of the month, 6:30 p.m.–8 p.m||Sidney Williams
800-272-3900 [email protected]
|3 Eves Drive
Marlton, NJ 08053
|NY- Albany area
||3rd Tuesday of the month, 5:30 p.m.–7:30 p.m.||Nancy Cummings
518-262-0800 [email protected]
|Standish Community Center (Eddy Village Green)
421 W. Columbia Street
|NY – New York City area||1st and 3rd Wednesday of the month||Jill Goldman, MS, MPhil CGC
|PA-Lehigh Valley/Upper Bucks Co.
||1st Thursday of the month, 7 p.m.–8:30 p.m.||Susan Miller Abbott
|The School House at Richland Friends Meeting House
Mill Road and Main Street
Quakertown, PA 18951
|PA – Hershey||3rd Thursday of the month, 6 p.m. –8 p.m.||Claire Flaherty Craig, PhD
(717)531-1804 [email protected]
|Hershey Medical Center
30 Hope Drive, Room 1019
Hershey, PA 17033
|PA – Philadelphia *(Young Adult)||3rd Wednesday of the month, 6:30 p.m.–8:30 p.m.||Gary Radin
|Ralston Penn Center
3615 Chestnut St.
Philadelphia, PA 19104
|PA – Philadelphia & Western Suburbs
||2nd Thursday of the month, 7 p.m.–9 p.m.||Sandy Karger
|Main Line Reform Temple
410 Montgomery Avenue
Wynnewood, PA 19096
|PA – Pittsburgh area||2nd Tuesday of the month, 11:30 a.m.– 1 p.m||Jim Rodgers
|Kings Restaurant (Room #2)
105 Vip Drive
Wexford, PA 15090
|PA – Royersford||1st Tuesday of the month, 2 p.m.–3:30 p.m||Riverview Adult Day Health Services
|Riverview Adult Day Health Services(Parkhouse Family Rm)
1600 Black Rock Road
Royersford, PA 19468
|VA – Fairfax
*(for youth of parents with dementia)
|1st Saturday of the month, 12:30 p.m. -2 p.m.||Stephanie Houpt [email protected]||Contact facilitator for details.|
|*(Phone-based for adult children affected by FTD)||3rd Thursday of the month from 5 p.m.–6:30 p.m.||Led and organized by University of California, San Francisco:
Jamie C. Fong, M.S., CGC
|National phone-based support group. Contact facilitator for access number.|