Care and Support
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Here to Help -- One Question at a Time
From our start in 2002, the AFTD HelpLine
has been at the heart o
f our mission to provide accurate information about
FTD
t
o those who need it
mo
st. Calls to the HelpLine were
initially fielded by volunteers, and 15
years later our HelpLine is staffed by six AFTD employees who have backgrounds in human services and receive ongoing training regarding the latest developments in FTD.
Last year, our staff responded to a record 2,452 calls, emails and letters -- an 11% increase over the previous year.
The conversations that take place through the HelpLine reveal important information about needs in the FTD community, and help to inform the evolution and development of the services we offer.
FTD can be an overwhelming and isolating diagnosis to confront, but you don't have to face it alone. If you or a loved one is in need of a listening ear, accurate information, relevant resources and access to existing avenues of support, we are only a phone call or email away: 866-507-7222 or
[email protected].
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Hope for the Future
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Biogen researchers are conducting a study concerning cognitive, behavioral and functional change in Behavioral Variant Frontotemporal Dementia (bvFTD).
Please note that although we've chosen to publicize this study for your information and/or participation, at no time does AFTD officially endorse or approve any external study or research opportunity.
There is much to learn about Frontotemporal Dementia, especially when it comes to finding the best way to measure its symptoms and impact on individuals' everyday lives.
If you have Frontotemporal Dementia, you may want to consider the FORWARD study.
What is the purpose of the FORWARD study?
This is an observational study designed to learn more about FTD and to find answers to important questions, such as "how do symptoms change over time?" Eligible participants will work with study staff over the course of a year to answer questions about their daily functioning, as well as participate in cognitive assessments.
Who can participate?
You may be eligible to participate in the FORWARD study if you:
- Are 18 to 80 years old
- Have been diagnosed with Behavioral Variant Frontotemporal Dementia (bvFTD)
- Other criteria may apply
To find out if you may be eligible to participate, please contact one of the currently recruiting investigative sites near you listed below. Additional information can be found on clinicaltrials.gov by navigating to this page:
https://clinicaltrials.gov/ct2/show/NCT03088956
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The AFTD-Team
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With Love
AFTD's seventh annual With Love campaign is
gearing up to kic
k off the New Year on a strong note. Last year more than 20 people shared their stories to raise funds -- let's make this year bigger than ever!
Inspired by the day dedicated to love, Valentine's Day, this month-long campaign takes place throughout February. This is a special opportunity to honor or remember a loved one impacted by FTD, without leaving the comfort of your home -- it's a completely virtual campaign.
If you're ready to share your story about a loved one affected by FTD, while raising awareness and funds to support AFTD's mission, email Bridget Graham at: [email protected].
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Words of Encouragement
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Therapy Dog to the Rescue
By Eugenia Thornton, Delaware
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Gene's husband, Don with their Vizsla, Dolly
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Although he had lived in the nursing home for more than a year, when I visited my husband, I would still tear up at least once -- on a good day. On bad days, I fled his ward and burst into tears in the hallway. Too frequently, I sat in my car until my sobs abated and I could drive away safely.
But once I began taking my dog along on those visits, the crying jags were replaced with a sense
of purpose that revolves around helping others rather than wallowing in sorrow.
My dog supports me physically and emotionally: I take her for a long walk before entering the building as a calming measure. My preoccupation with her allows me to focus on others -- first forcing a smile, then genuinely feeling a reason to smile.
If I go and my husband is asleep or not feeling up to a visit, I'll walk the dog down the hall to meet some other residents or cheer up the staff. Petting a dog releases the "love hormone," oxytocin, which alleviates pain and improves mood. No visit is ever wasted!
Many organizations offer a certificate suitable for framing once you've documented a certain number
of visits with your dog. Looking at my dog's American Kennel Club Therapy Dog Title Certificate (earned for 100 visits), I smile. I no longer dwell on what I've lost to this disease, but instead focus on the joy that ensues when my dog wags her way through the nursing home.
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Community Connection
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Upcoming Meet and Greet
If you live in the St. George, Utah area, please
join AFTD Board Member and Vice
 Chair Bonnie Shepherd on Monday, Dec. 11th for an informal gathering to meet others in the area whose lives have been affected by FTD. Special guest and former AFTD Board Member, Lisa Radin, will be in attendance to present on her book,
What If It's Not Alzheimer's?, and discuss how it can help the FTD community. All are welcome! To learn more,
download this flyer.
New Year's Resolution =
Volunteer Opportunities
With 2018 around the corner, have you decided on your new year's resolution yet? If not, how about taking on a rewarding and valuable experience as an AFTD Volunteer?
To see our full list of volunteer opportunities,
click here
.
The first step to accomplishing your new year's resolution is to complete the Volunteer Information Form and return it to Volunteer Manager Kerri Keane (
[email protected]). From there, your Regional Coordinator Volunteer will follow up with you directly.
2018 Volunteer Orientation Schedule
AFTD's Volunteer Orientation Schedule for 2018 is now up on the website.
Click here to view.
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:
Mike Dircksen
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Sioux Falls, SD
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Jerry Horn
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Mobile, AL |
Mary Karkala
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Fargo, ND
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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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Don't Miss...
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- VJ & Chuck, Joe Becker's new film, which draws on the experiences of people living with FTD.
- Last week's webinar about transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) with Dr. Roy Hamilton.
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This short story about how your generous support enables us to provide crucial connections and services to families like the Zengers.
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