AFTD’s Partners in FTD Care is an on-going initiative to educate professionals about FTD and develop best practices in community care. Partners in FTD Care materials are developed by a committee of clinical nurse educators, social workers, and family and professional caregivers with contributions from specialists in speech-language pathology, occupational therapy, hospice. Partners in FTD Care has two elements:
- Introductory Educational Materials
- Quarterly e-newsletters featuring case studies in FTD
This is information that you can share with an MD as you are going through the diagnostic process if there is uncertainly on the part of the MD.
For more information go to http://www.theaftd.org/understandingftd/healthcare-professionals
On that channel is the second installment of the AFTD’s Educational Webinar Series which brings in experts to address issues important to all whose lives are impacted by FTD.
AFTD Education Webinar, January 12, 2017: A Care Paradigm for Persons with FTD
Presented by Dr. Alvin Holm, this AFTD educational webinar explores how FTD treatment benefits from an integrated and comprehensive approach. Learn how symptom-specific therapies, wellness management and environmental support can help caregivers manage FTD care more effectively.
Alvin Holm, M.D., FACP, is Founder and Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota. He has more than 25 years of experience in adult medicine and neuropsychiatry.
There are about 25 other videos on that channel as well, events, personal messages, a PSA and more. AFTD YouTube Channel.
An excerpt from the press release. Full release.
“Doctors often rely on biomarkers – objective, easily measured biological features that indicate underlying pathology— to support accurate diagnosis and treatment efforts. Blood pressure, for example, is a widely-used biomarker for cardiovascular disease. Today, no comparable measures exist for FTD.
After reviewing proposals from 23 leading researchers worldwide, an expert panel has selected five researchers for multi-year FTD Biomarker awards:
- Randall Bateman, MD, Washington University, St. Louis.
- Christian Haas, PhD, Ludwig Maximilian University & the German Centre for Neurodegenerative Diseases, Munich.
- Leonard Petrucelli, PhD, Mayo Clinic, Jacksonville.
- Jonathan Rohrer, MRCP, PhD, University College London, UK.
- Judith Steen, PhD, Boston Children’s Hospital.
Biomarkers will help doctors to diagnose FTD, track its progression, and evaluate potential treatments. These efforts could also benefit research targeting diseases like Alzheimer’s, Parkinson’s and ALS.”
Visit the AFTD site for more details about the FTD Biomarkers Initiative.
From the AFTD web site:
“Inspired by the day dedicated to love–Valentine’s Day–AFTD’s With Love campaign is an opportunity for you to honor or remember a loved one impacted by FTD. During the month of February,
you can share your story of love, spread FTD awareness and raise funds to support AFTD’s mission simply by creating a fundraiser. Over the past five years, this campaign has raised more than $247,000 to fight this disease. Will you choose to fight FTD, With Love?” More info. To Donate.
Would you like to connect with another FTD caregiver? No support group in your area?
The AFTD has a program where they can match FTD caregivers who are in a similar situation.
After agreement by both parties, they share a name and a contact number or email, but no other personal information. You take it from there.
To request a match or to register, contact the AFTD at email@example.com or toll-free 866-507-7222 for details.
The AFTD’s 2016 Annual Report “shares significant gains in our work to inform the public — and shape the evolving conversation around FTD! Read about our work this past year, and find gratitude and recognition for our philanthropic supporters.”
From the Partners in FTD Care Newsletter:
Dan is a middle-aged man from Ohio who has FTD. His symptoms have frustrated the efforts of his wife, Rita, to engage Dan in necessary self-care activities. Fortunately, occupational therapists are trained to overcome exactly these types of challenging behaviors.
This issue of Partners in FTD Care explains how Rita worked with a home-based OT — and, later, therapeutic recreation specialists — to develop an individualized plan based on Dan’s own unique behavioral patterns, needs and interests. This tailored approach has helped Dan to remain an active participant in his own life.
AFTD’s 2017 Education Conference will be held on May 5th, 2017 at the Sheraton Inner Harbor Hotel in Baltimore, MD.
AFTD’s Education Conference provides opportunities for all members of the FTD community – researchers, medical professionals, caregivers and persons living with FTD – to meet in person, share resources and learn about the latest developments in FTD research.
Online registration will open in January.
If you are like me, thinking about year end giving.
Here is a link to the AFTD site where you can donate online.
Meet others affected by FTD for an informal gathering of local families, friends, caregivers, community professionals and persons diagnosed with FTD on Saturday, 12/10. See the invitation for the details, who to contact with questions and to RSVP, space is limited.