The Gateway
In This Issue
What's New
Caregivers' Corner
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

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Are you ready to learn more about how you can help make an impact on behalf of the FTD community? Contact your regional coordinator volunteer to learn about AFTD's volunteer program and opportunities, by  accessing 
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New York Times Ad
A full page FTD awareness ad ran in Sunday's New York Times. Visit this web page to see the design for the ad, which was created by AFTD volunteer Jody Zorn. 
 
  Young Adult Facebook Group
AFTD has a young adult Facebook group for people in their 20s and 30s who have a family member or loved one with FTD. This "secret" Facebook group was established to offer a supportive environment where people can feel comfortable sharing their feelings and experiences. If you meet the age criteria and wish to join this private group, please email youngadults@theaftd.org  and include the email address you used to open your Facebook account. Please note that AFTD will not use your email address for any reason other than to invite you to join the group. 
Issue: # 23
October 2015
What's New
World FTD Awareness Week Is Here!

Stakeholders around the world are making their voices heard this week in the fight against FTD - from conferences in Australia and The Netherlands, to a concert and art gallery in Spain, to a citywide proclamation in Canada! World FTD Awareness Week (October 4-11) will see events in more than 10 countries in its inaugural year.
Here in the U.S., an event hosted by AFTD at One World Trade Center in New York City on October 1st kicked off participation in the global effort, and also marked the beginning of AFTD's Food for Thought grassroots campaign. Now in its third year, Food for Thought facilitates our community's annual concerted effort to raise funds to fight FTD, while also raising awareness.
 
Nearly 70 Food for Thought events in 36 states are taking place this week to spread FTD awareness!  A full listing of public events is available on AFTD's website by clicking on your area from the Get Involved, In Your Region pages, which are all listed on this World FTD Awareness Week page.
 
So, how are you going to join the global effort? We need your help to spread the word about FTD! Tell us about your plans on our  AFTD-Team Facebook page .
Caregivers' Corner 
Connecting Supports; Facilitating Community

Pictured: The goals for AFTD's support services.
AFTD has secured a three-year grant to expand and deepen its existing support services for those impacted by FTD.

The $225,000 grant, provided by the William Randolph Hearst Foundation, represents the first multi-year award from a major national foundation in AFTD's 13-year history.

"AFTD provides resources and support to improve the lives of people living with FTD and their caregivers," said AFTD Program Director
Sharon S. Denny, M.A . "The Foundation's support is enabling AFTD to advance its strategic goal of providing every person diagnosed and their caregivers with access to accurate information, resources and support."

The grant is allowing AFTD to expand the ways that it provides accurate information, compassionate guidance, and opportunities for members of its community to connect with each other.

We will: i ncrease the capacity of AFTD's HelpLine, which answers more than 2,000 calls annually; address the need for supports for persons diagnosed; and expand the Comstock Respite & Travel Grant program.  

Through efforts led by our Support Services Manager, Bridget Moran, AFTD is also rolling out an initiative that seeks to identify, connect and assist FTD support group facilitators. Through this work, we will establish a network of AFTD-affiliated support groups across the U.S.  We look forward to sharing more details on these efforts in forthcoming issues of The Gateway.
Medical Momentum
AFTD Announces Initiative Targeting Diagnosis and Treatment

AFTD is pleased to announce it will lead an  FTD Biomarkers Initiative supported by a generous $5.75 million gift from the Samuel I. Newhouse Foundation, Inc. 

lab_worker_woman.jpgMedical professionals regularly use biomarkers for diagnosing patients and measuring a treatment's effectiveness. For example, in heart disease, blood pressure and cholesterol are used as biomarkers. Effective biomarkers for FTD, however, have not yet been identified, and the lack of such biomarkers is a major hurdle for diagnosis and designing drug trials, as well as determining qualified participants and measuring outcomes.

The Newhouse Foundation's gift and the resulting initiative were formally announced Thursday night, October 1, at AFTD's kick-off event for World FTD Awareness Week, held at One World Trade Center.

" The FTD Biomarkers Initiative is a sound and promising start on the quest for FTD biomarkers, one which will garner attention for FTD, promote collaboration among medical and research professionals, and lead to the accurate diagnosis and effective treatments that our patients and their families deserve," said Susan Dickinson, AFTD's Executive Director. "We see this initiative as one that will generate additional industry investment, making this a hopeful time in FTD research."

The Initiative will focus on two types of biomarkers that are of critical importance: diagnostic biomarkers and progression biomarkers. These same biomarkers could then be used in clinical trials to measure efficacy of a drug being tested.

AFTD has recruited an expert panel from across the field of neurodegenerative diseases to guide this Initiative. In late 2015, the panel will also develop a multi-round, multi-year grant award program and Request for Applications. AFTD anticipates awarding half of the available funds in 2016 and issuing a second, equivalent round of funding two years later, depending upon the number and quality of applications.
The AFTD-Team
It's Not Too Late:
Take the 'A Bite to Fight FTD' Challenge!

Brian Rose developed this social media challenge that you can join as easily as making a PB and J! Raise FTD awareness by asking friends, family and colleagues to video-record themselves describing what's on their favorite sandwich, taking a bite, and then challenging a friend to do the same. Accept Brian's challenge with your own post, using hashtags #ABitetoFightFTD and #AFTDTeam ! To date, more than $6,000 has been raised. AFTD's own Kirstie took the challenge with aplomb. 
 
John Baumgartner FTD Golf Tournament
John Baumgartner, who was recently diagnosed with FTD, will join with family and friends to host an inaugural Golf Tournament in the Birmingham, Alabama area October 12, 2015. Donations will support AFTD's efforts to fund FTD research. Follow this link for more about John's story, and to learn how to join in the event.
 
Marathon-for-Dad
Russell, pictured with his father, Paul, who lived with FTD.
Russell Zomback is running in another marathon to benefit AFTD, in memory of his dad, Paul. Russell is raising money not only to help find a cure for FTD, but also to help the families/caregivers of those afflicted with this terrible disease.  The race is in Atlantic City on October 18, 2015. Please visit his fundraising page here .

Words of enCOURAGEment
By Christopher Yurkanan, Caregiver

My wife Chris has had PPA since 2006.  I, Christopher, have had Parkinson's disease since 2009. Brain disease caregiving has become my unintended specialty. Thus I have collected "caregiver miles" like "frequent flier miles." People often ask me, "How do you do it?" I have some answers and opinions to offer in response to that question that I want to share with you.

Long ago I unscrewed my head from my body, turned it upside down and shook it repeatedly to get all the attitudes, assumptions and expectations out. Good music to do this by is Bruce Springsteen singing "Twist and Shout. "
 
There are no reasons for this disease. It just is. So quit searching for reasons. Quit searching the card table for the puzzle piece that fits, because it's not on the card table, nor is there even a picture of the puzzle. So quit searching.

Your loved one absorbs your emotions. You are in the driver seat of what they feel. So smile, don't frown if you want a happy patient. Frustration comes from not getting the result you want. Give up your need for that want and just provide a calm, peaceful and happy environment. 

Play music. Dance a little. Wiggle a bit. Use gestures to convey what you want. Use sounds to convey what you want. No words will cause Chris to take a shower. Yet, she will undress when she hears the shower turned on. The same is true with the sound of bathwater. Draw a bath and Boom! Wife undresses and wants bubble bath crystals.

Essentially, don't fight, force, urge or insist. But rather charm and finesse your loved one. If you want them to go somewhere with you, offer your arm not your hand. Escort them. Don't lead them. Use humor. Do not hurry.

Be an observer of your loved one rather than an anticipator of them. This will cause you to see behavior and symptoms rather than speculate about them. It will also slow you down so you can actually see rather than guess.

Experiment. FTD patients often won't drink Ensure or Boost because these drinks taste like chocolate paint. Put it in a mug, microwave it, add dinky marshmallows and Poof! You have hot chocolate. Be funny. Say chocolate like the Nestles commercial - "chaaw-col-ate."

You want them to laugh. You want them to love. You want them to be safe. So be calm, cool and collected.

TELL US HOW YOU DO IT. 

Through 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 info@theaftd.org

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