I was invited by the CT Chapter of the Alzheimer’s Association to meet with Rep. Jim Himes along with three other caregivers. The objective of the meeting was to help him understand the challenges of being a caregiver and raise his awareness and get his support for two pending pieces of legislation.
We all had some powerful stories to tell and I think we had some impact on him. He listened patiently and asked some good questions. After breaking, he continued to talk one on one with a couple of us. Two of us were FTD caregivers.
There are two bills in Congress that address the needs of caregivers that he recently signed on for as a cosponsor.
- Recognize, Assist, Include, Support, and Engage Family Caregivers Act of 2015 or the RAISE Family Caregivers Act – H.R. 3099
This bill directs the Department of Health and Human Services (HHS) to develop, maintain, and periodically update a National Family Caregiving Strategy. HHS shall convene a Family Caregiving Advisory Council to advise it on recognizing and supporting family caregivers. Read more.
- PCHETA: Palliative Care and Hospice Training Act – H.R. 3119
This bill amends the Public Health Service Act to require the Department of Health and Human Services (HHS) to award grants or contracts for Palliative Care and Hospice Education Centers. These Centers must improve the training of health professionals in palliative care and establish traineeships for individuals preparing for advanced education nursing degrees, social work degrees, or advanced degrees in physician assistant studies in palliative care. Read more.
We should all take the opportunity to speak to our representatives when they hold their town hall, community meetings, write to them, and make sure that caregiving is a topic that they hear about and understand.
Maplewood at Stony Hill in Bethel is hosting an educational seminar for both professionals and personal caregivers about FTD.
During this educational session you will learn about the differences between Frontotemporal Dementia (FTD) and other forms of dementia, the subtypes of FTD, common behavioral expressions and strategies for managing behaviors.
DATE: Tuesday, March 14TH, 4:30 PM – 7:00 PM
LOCATION: Maplewood at Stony Hill, 46 Stony Hill Road, Bethel, Connecticut
For more information or to RSVP, contact Eileen Duggan at 914-534-1126 or at email@example.com.
6th Annual Wine Tasting – The CT FTD Foundation will be hosting their annual wine tasting on March 11, 2017 at the DoubleTree Hilton in Bristol. They had a wonderful experience last year with the venue and are excited to have their event there again in 2017. Tickets are $35 ($40 day of event) which can be bought online
or by check. Please contact them with any questions, firstname.lastname@example.org.
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.
Registration opens up in mid-February. Caregivers are welcome to attend. There is a fee. Last year it was $60. I’ve attended it more than once and have found it to be very informative.
Great speakers and a variety of vendors displaying their products and services. There has been a session on FTD the times I’ve attended.
For professionals who attend, they can get continuing education credits.
It is held at the Radisson Hotel in Cromwell. Sponsored by the Alzheimer’s Association, CT Chapter. More info.
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.