Join Our List to Receive The Gateway!
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Quality of Life Grants
The 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
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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.
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]
.
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]
.
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What's New
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Urging the World to #ThinkFTD
This week, actress Martha Madison (
Days of Our Lives
) is the latest to share her story in a powerful video,
part of AFTD's "
Think It's Alzheimer's? Think Again
" campaign. These videos were produced with assistance from Discovery Communications and Image Factory DC
.
The #ThinkFTD campaign continues. Keep sharing your own videos and stories on social media, and share the materials we post using the campaign hashtag as well. We can't end FTD until we get the world to #ThinkFTD.
AFTD's New Economic Burden Study
Last year, we asked our community to take part in a survey about the impact that FTD has had on their financial lives. More than 670 of you responded, and we thank every one of you for sharing your stories.
Again, our thanks go out to everyone who participated in the survey to make this study possible.
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Care and Support
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When the Diagnosis Doesn't Fit
In his mid-40s, Mr. P began exhibiting uncharacteristic behaviors, including apathy toward his family, reckless financial behavior and a penchant for taking long walks without telling his wife, Jane, where he was going. A psychiatrist diagnosed Mr. P with depression, and he was placed on antibiotics. But Jane was skeptical -- the diagnosis didn't seem to fit.
The
latest issue of
Partners in FTD Care details the long, frustrating path separating symptom onset and an accurate FTD diagnosis. Information from this issue, including a detailed list of the early warning signs of FTD, can be shared with health care providers who are unfamiliar with FTD and the difficulties involved in confirming diagnosis.
Click here to read this newest issue of
Partners in FTD Care, and sign up to receive additional issues by sending an email to
[email protected]
.
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| Medical Momentum |
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AFTD Educational Webinar: The FTD Registry
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Dianna Wheaton, PhD |
On August 24, Dr. Dianna Wheaton discussed the mission and objectives of the FTD Disorders Registry in the latest installment of the AFTD Educational Webinar Series. Dr. Wheaton, the registry's director, describes the concept of a patient registry and how it helps to support research.
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The AFTD-Team
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The Philly Marathon Is Just Around the Corner!
The
AFTD-Team 2017 Race Season continues! We've participated in five races across the country so far, covering 781 miles in the fight against FTD. But we're not done yet.
AFTD is returning as an official Charity Partner of the
Philadelphia Marathon on November 17-19. Join us for a weekend of friendship and spreading FTD awareness
You can only earn a bib for the AFTD-Team by fundraising.
Send an email to AFTD Grassroots Events Coordinator
Bridget Graham
to get started. Bibs are going fast, so act quickly if you want to take part.
Quest for the Cure Golf Tournament
 The seventh annual Quest for the Cure Golf Tournament, hosted by the Robert M. Hatfield Foundation, is set to tee off on November 17, 2017 in Largo, Florida. All proceeds will benefit AFTD!
Download
the official tournament flyer, and click here to register.
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Words of Encouragement
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Anne Fargusson shares how she turned her FTD diagnosis into a chance to reinvent her life.
When I was 48, I found myself in the UCSF Department of Neurology, nervously talking with a doctor. I'm a registered nurse with a BS degree, but I had been fired from my last two nursing jobs, lasting just three months in each. I was in denial about what was happening, but not for long. That day, the doctor confirmed that I had FTD.
This wasn't my first trip to UCSF. About 10 years earlier, I accompanied my parents on the day my father was diagnosed with FTD. After the appointment, we ate in the hospital cafeteria. My father was barely responding as I fed him; food dribbled out the side of his mouth.
And now I have the same disease? What do I do? The doctor gave me three to five years to live.
But I've surpassed that projection -- earlier this year I celebrated my 60th birthday. If you have been given this death sentence and it didn't turn out as expected, I want to encourage you to "reinvent" your life. That's what I did.
Rediscover yourself and what you are still able to do. I can no longer work as a nurse, so now I volunteer at a local library. And I started writing books -- my latest is in publication! Maybe you can get involved in art or music. Join an internet group or a prayer chain or maybe a book club. Focusing on helping others instead of worrying about yourself will make a difference in your "reinvented life." Good luck!
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Community Connection
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A Phone Support Group for Men
"Men tend to be fixers, trying to solve everything ourselves," says Matt Dineen of Ottawa, whose wife, Lisa, was diagnosed with suspected behavioral variant FTD in 2013. "But this disease can't be fixed. You have to admit to yourself that you need help."
For over a year, Matt has been a regular participant in AFTD's phone-based support group exclusively for men who have loved ones with FTD. "As a group of men we can be blunt and frank and not hold back from what we have to say," Matt says.
The support group, which meets by phone on the third Wednesday of each month, is led by Mark Allshouse, who works to cultivate a safe environment in which support group members can confidentially share their thoughts and experiences.
To any husbands, fathers, sons or brothers who have a loved one with FTD but don't know where to turn, Matt encourages them to give the men's support group a try. "You do have to let your 'man-guard' down," he notes, "but know that you won't be judged or ridiculed. Joining this group is a bold step in the right direction."
AFTD Online Community Coordinator
AFTD is stepping up its presence on social media. We've brought aboard our first Online Community Coordinator, Lauren Gauthier, to interact with members of our community on Facebook and Twitter. AFTD is also newly active on Instagram, so be sure to follow us there as well.
And if you or a loved one is living with FTD, consider joining our closed Facebook group. There, you will find a community of people who share your experiences and can offer support, advice and comfort.
Upcoming Meet & Greets
Over the next several weeks, AFTD will be hosting informal Meet & Greet events in
New Jersey,
Virginia and
Kansas.
Join others in your community whose lives have been affected by FTD to connect, learn, discover and share. Persons diagnosed, caregivers, professionals, family members and friends are welcome to attend.
October 14: Lawrenceville, NJ (
download flyer)
Nov. 11 Facility Outreach Volunteer Training
Informing and educating residential care facility administrators about FTD and AFTD is an important and valuable role for volunteers. You can join a team of dedicated volunteers across the country making a difference by conducting awareness visits at facilities throughout your community. AFTD will provide you with steps, resources and helpful tools to assist you as you prepare for your short visits.
The next AFTD Facility Outreach Training is scheduled for Saturday, Nov. 11th at 11 a.m. (EST) and will be presented by one of AFTD's Middle Atlantic Regional Coordinator Volunteers, Sarah Sozansky Beil.
Contact your Regional Coordinator Volunteer to learn more and register.
AFTD's Network of Support
AFTD offers ongoing training for affiliated volunteer support group facilitators. We are so grateful to all of you who are willing to share your time and talents to help provide caregivers much needed support and resources. Welcome -- we are honored to have you aboard!
We would like to introduce our newly affiliated support group facilitators:
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Martha Allergi
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Mobile, AL area
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Mary Ann Buckley
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Kensington, MD
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Miki Paul
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FTD/ALS phone group
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Marianne Sanders
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Beachwood, OH |
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.
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