Join Our List to Receive The Gateway!
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Volunteer for AFTD!
Are you ready to learn more about how you can help make an impact on the FTD community? Contact your regional coordinator volunteer to learn about AFTD's volunteer program and opportunities, by
accessing
Save the Date!
The 2016 AFTD Education Conference will be held in Minneapolis, MN on May 13th, and will feature experts such as Drs. Brad Boeve and David Knopman. The keynote speaker will be Nancy Carlson; an accomplished children's author and illustrator. Nancy is also caregiver to her husband Barry, who is living with FTD. Registration will be available in January. Remember: AFTD offers
Comstock Travel Grants
to defray the cost of travel, lodging, and conference fees.
Thanks to Our Community:
These
individuals and organizations
have played a crucial role in accelerating the fight against FTD. Thank you to all in our community for your support and collaboration.
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Issue: # 24
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December 2015
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What's New
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Make a tax-deductible contribution to AFTD today!
Since Tom Zaloudek's wife, Cordelia "Corky" Zaloudek, was diagnosed with FTD in 2013, the hardest part for Tom has been how quickly the disease has progressed, and how challenging it's been to maintain friendships while losing his best friend.
Fortunately, Tom was able to get some help through AFTD Comstock Respite & Travel Grants, which provide up to $500 to people impacted by FTD to take some time to re-energize.
Tom used one grant to host a gathering and surround himself with friends. A second grant allowed Tom and Corky to make a final visit to HealthFest in Hot Springs, Arkansas, a biking, hiking and social gathering they had attended every year for the past 27 years.
"I'm glad we were able to go because that was the last out-of-town trip before Corky went into assisted living permanently," said Tom. "I'm grateful and have fond memories of all the times we've spent together, but especially this one...."
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Caregivers' Corner
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Easing the Transition:
Residential Long-Term Care and FTD
Most individuals who are moving to long-term residential care are in the moderate or advanced stages of their illness. As part of the assessment prior to the placement, it is important to understand the reasons long-term care has been selected, and how the person typically responds to changes in routine. Time spent on planning and coordination can ease the transition for the resident, family and staff, and contribute to a positive experience in residential care.
Our recent Partners in FTD Care newsletter explored the benefits of individualized transition planning. The issue offered: ideas for care teams to consider during transition planning, such as visiting schedules and screen time; suggestions for navigating HIPAA regulations when managing concerns from other residents' families; and practical tips for minimizing relocation stress. Find the complete issue here.
Support Groups Update:
Finding Support In Your Region
 With the support of its Board of Directors and a generous Hearst Foundations grant, AFTD recently began rolling out a new initiative that seeks to connect support group facilitators to AFTD and with each other in new ways. Now, visitors to the website will see a re-organized listing of Support Groups on each of the seven regional pages:
New England
,
Middle Atlantic
,
South Atlantic
,
Midwest,
South Central,
Northwest
, and
Southwest
.
AFTD extends thanks to the facilitators who have completed the affiliation process. To date, 24 group facilitators from groups in 14 states have agreed and completed the affiliation process! The updated
In Your Region webpage offers access to
the growing number of support groups available in each region, and whether the groups' leaders are affiliated with AFTD.
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| Medical Momentum |
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FTD Disorders Registry
AFTD has partnered with The Bluefield Project to build an online FTD disorders registry. The data stored in this community resource will be collected on a voluntary basis from persons living with FTD, their caregivers and family members. Maintained via a secure web portal, the resource will help:
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 Researchers to analyze "big picture" trends in the development and progression of FTD;
- Health care professionals to coordinate care; and
- Individuals living with an FTD diagnosis and their families to learn about clinical trials.
AFTD will be encouraging caregivers and family members to assist individuals who are unable to sign up on their own, as well as encouraging all stakeholders to sign up themselves. After registering, participants will answer questions about their experience with FTD, including details about diagnosis. Any publications using registry data will be about group information and will not identify the individuals who volunteered their information.
The larger the database, the more valuable the registry will be; as a result, it will be important to enroll as many people living with FTD as possible, whether they have bvFTD, PPA, PSP, CBS or FTD-ALS. Helping the medical community learn more about life with FTD will improve understanding of the disease, and facilitate the development of effective therapies. Stay tuned for more details!
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The AFTD-Team
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New Grassroots Events Coordinator Joins the Team
AFTD is pleased to welcome Bridget Graham as our Grassroots Events Co
ordinator! A
graduate in Speech Communication from Millersville University of Pennsylvania, Bridget joined AFTD in October, bringing experience
in marketing and business administration to her role.
"I am beyond excited to be part of a team that strives each day to help the people living with FTD and their caregivers," said Bridget. With specific expertise in leveraging social media platforms, Bridget will assist the AFTD-Team in their efforts to host and promote volunteer-driven events.
She looks forward to meeting the members of our FTD community. As you are planning individualized fundraising and awareness-raising events, please reach out to Bridget at [email protected].
Who Do You Love?
AFTD invites you to learn more about a special social media campaign that will launch this winter. Anchored by a video recently produced for AFTD, the campaign seeks to raise awareness by sharing! To get involved in the planning, email AFTD Grassroots Event Coordinator Bridget Graham at [email protected].
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Words of enCOURAGEment
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'Call Me from Aisle 6...'
How to Accept and Utilize Offers of Help
By Christopher Yurkanan, Caregiver
With caregiving for my wife Chris, the offers of help I receive from friends are very, very sincere: "Call me if there's anything I can do; anything at all."
I have tinkered with ways to respond that are simple, rather than complicating things. I tell friends to call me when they are en route to the grocery store, or to call me from Aisle 6. "Aisle 6" is the code for being available to help.
How our friends help: run the errands, deliver the groceries and stay for a visit.
This has become a wonderful way to get critical help in a very easy manner:
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Have a collection of tasks that fit the lives and schedules of your friends.
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- Our friend Kay knows the drill: fruits, dried and fresh; chocolate of her choice; juices; tuna and chicken salads; cheeses; must not forget extra chocolates....
- When Kay's husband, Chuck, calls, his grocery list is shorter, but he goes to the cat food and litter store, owned by another friend James, and picks up the pet supplies. I've pre-paid by credit card over the phone to make things easy.
- Big George brings a number of prepared dishes and stays to talk politics.
- George the Frenchman brings crepes and lots of joie de vivre.
- Pam, Chris's friend since 3rd grade, brings a home-cooked meal that is enough for several dinners.
- Neighbors: Karen and her son drag brush piles to the street for free pick-up. Lynn brings the garbage cans in and gets the mail.
- Everyone offers to move boxes, change light bulbs or do whatever, when they visit.
As a caregiver, I get the value of their eyes on us, and their perspective on how we are doing (Chris in particular). Chris gets attention, affection and love.
All of this happens from the goodness of their hearts. It helps to have a collection of tasks that fit their lives and schedule. So make your list of helper tasks and when someone calls from Aisle 6, give them a list of groceries or drive-by errands, and open the wine, cheese and crackers for their arrival.
TELL US HOW YOU DO IT.
Through The Gateway and other resources, Christopher and AFTD would like to include tips, troubles, triumphs and challenges from our caregiver community. Interested in participating? E-mail [email protected]
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