Join Our List to Receive The Gateway!
|
Quality of Life Grants
The new Comstock Quality of Life Grant is intended to help people diagnosed with an FTD disorder access services or supports that will improve their quality of life. AFTD is awarding a limited number of $500 grants as part of a pilot project. The grants will be awarded to individuals in the U.S. with a documented FTD diagnosis. Further information regarding Quality of Life Grants is provided
here
.
AFTD Young Adult Facebook Group
Have you seen the "secret" Facebook group for young adults in their twenties and thirties who have a loved one with FTD? To become a member of this group, email
[email protected] and include the email address you used to open your Facebook account. You will receive a group invite within a week.
May AFTD Webinar
Did you miss AFTD's May 2017 webinar, featuring Dr. Katherine Rankin? Dr. Rankin explored how researchers have identified specific patterns of nerve cell loss that lead to four distinct sub-types of bvFTD. Watch the full webinar
here
.
AFTD's Helpline
AFTD's most important direct service to people with FTD, caregivers and professionals, the HelpLine is reachable by phone or email, and is staffed Monday through Friday during AFTD office hours. Call 866.507.7222 toll-free, or
[email protected]
.
AFTD Twitter Feed
AFTD's Twitter feed offers research updates, information on new AFTD opportunities, and the latest in FTD-related news and information.
Click here to follow AFTD on Twitter.
We Value Your Insight
Through
The
Gateway
and other resources, AFTD will be sharing tips, troubles, triumphs and challenges from our community. Have some to offer?
E-mail
[email protected]
.
|
|
|
|
What's New
|
Hungry to Make a Difference?
AFTD's 5th Annual
Food for Thought Campaign is taking place September 24 through October 8. Do you have impressive kitchen skills you're ready to show off for a good cause? (Or maybe you just know how to order the perfect pizza over the phone!)
Hosting a FFT event can be as elaborate or simple as you want, just as long as it involves food and FTD education.
Trained FFT Volunteer Liaisons are here to help you plan your event.
Put your state on the map to show nationwide resolve against this disease.
Share your story, raise awareness and raise vital funds to support AFTD's mission. The funds you raise will help to improve quality of life for people affected by FTD and drive research to a cure.
U.S. Rep. Hinchey Announces FTD Diagnosis
In June, the family of Maurice Hinchey helped to increase
FTD awareness by announcing that the former U.S. Representative from New York is living with primary progressive aphasia.
"If revealing that he has FTD can raise awareness and prevent people from being misdiagnosed...then he continues having a positive impact on people's lives," said his wife, Ilene Marder Hinchey.
|
|
Care and Support
|
Research Summit on Dementia Care
AFTD is proud to be a co-sponsor of the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, taking place October 16-17 in Bethesda, Maryland. The summit is free of charge and open to the public. It will also be webcast.
The main objective of this research summit is to generate recommendations on accelerating the development of services and supports for persons with dementia, their f
amilies and their caregivers.
|
| Medical Momentum |
|
AFTD Educational Webinar: August 24th
 |
|
|
Dianna Wheaton, PhD |
Dr. Wheaton, the FTD Disorders Registry Director, will describe enrollment activity to date and provide information on how those interested can participate, share their experience, and contribute to the science. There will be ample time for questions.
DAY: Thursday, August 24th, 2017
TIME: 4 p.m. (EDT)
DURATION: Approximately 90 minutes
|
|
The AFTD-Team
|
AFTD-Team Races
The AFTD-Team has already competed in four races this season, bringing out approximately 160 people who laced up and trekked a total of 645 miles to fight FTD. If you're ready to take it to the streets, we have three more races in our AFTD-Team 2017 Races Season:
The AFTD-Team is returning as an Official Charity Partner of the Philadelphia Marathon, after a successful and fulfilling weekend last year. Teammates came from Maryland through New York to participate in this special weekend last year. Obviously the word got out, because bibs are going fast.
You can only earn a bib for the AFTD-Team by fundraising. Achieve the respective fundraising goal and receive a bib on the AFTD-Team for free (up to a $155 value!):
- Marathon -- $1,000
- Half Marathon -- $500
- 8K -- $250
- Kids Fun Run -- N/A
You'll also receive perks such as free bag check at our team tent on Charity Row, an AFTD-Team t-shirt to wear while you run, exclusive pre- and post-race food/drinks, and more.
Email AFTD's Grassroots Events Coordinator,
Bridget Graham, to get started.
|
|
Words of Encouragement
|
Mary Jane Virtue shares perspective on how mindfulness meditation aided her with FTD caregiving.
My husband Joe passed away on March 10th -- five years after his FTD diagnosis, but after per
haps 10 years
of observed behaviors that often precede a diagnosis. He died at home on hospice. It
was a beautiful and sacred time to witness. As a family we had much time to prepare and make his death meaningful.
As his primary caretaker I wore many hats and learned all that I could about the disease. Of course I cried often as my life had truly changed. Being a caregiver was the hardest job of my life. I realized I needed to learn to "be with myself" in a new way.
I became active in a Mindfulness Meditation practice and joined a weekly group. Using awareness of breath allowed me to empty my busy mind. I learned not to obsess about the past and not to be pulled into fear of the future. I was able to live in the moment.
Meditation truly saved my life during my years caring for Joe. I am grateful for this practice and want to pass it on to fellow caregivers as a method of self-care. It has taught me a great deal about myself and how to love someone unconditionally.
So carry on with the caregiving task at hand. There is a great deal of difficult work in the road ahead, but it is also filled with many unknown gifts that await you. My best to all of you who find yourself on this path.
|
|
Community Connection
|
Featured Volunteer Opportunity
Do you want to share your FTD journey with your local community, but don't know where to start? AFTD has a
tool to help you get started in your quest to raise awareness through your local media. Contact your
Regional Coordinator Volunteer today to get started.
New Regional Coordinator Volunteer
|
|
|
Rachel Castellanos |
AFTD is thrilled to welcome South Central Regional Coordinator Volunteer Rachel Castellanos! She joins Zoy Kocian in managing the region, and together they will make a great team. Rachel knows AFTD well and has volunteered in a variety of ways, including organizing a hugely successful Meet & Greet in Louisiana.
Regional Coordinator Volunteers are the principal coordinators of activities providing support and guidance to their volunteers, and they represent AFTD throughout their region.
If you are in the South Central Region, Zoy (who oversees Texas and Oklahoma)
and Rachel (Louisiana, Arkansas, Missouri and Kansas)
would love to talk with you about how you can volunteer to make a difference.
AFTD's Network of Support
AFTD offers ongoing training for affiliated volunteer support group facilitators, and are so grateful to all of you willing to share your time and talents to help caregivers gain much needed support and resources. Welcome -- we are honored to have you aboard!
We would like to introduce our newly affiliated support group facilitators:
|
Al Papesh
|
Des Moines, IA area
|
|
Ed Fargusson
|
Sacramento, CA
|
|
Lark Fiore
|
Newport, NC area
|
Find information on local support groups here. Thinking of becoming a support group leader in your area? Learn more by contacting our Support Services Manager, Bridget Moran-McCabe, at
[email protected]
or 267-758-8653.
|
|
|
|
|
