The Gateway
In This Issue
What's New
Care and Support
Medical Momentum
The AFTD-Team
Words of enCOURAGEment

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Volunteers Needed

Do you want to educate facility administrators about AFTD as well as FTD and how it is different from other dementias?  You CAN by conducting awareness facility visits in your community. AFTD's Volunteer Manager, Kerri Barthel, will be offering a one-hour facility outreach training on-line, Thursday, September 15th at 8:30 (EST). As a volunteer, you will be provided with an interview guide, along with strategies for approaching facilities and a packet to leave with the staff you meet with. AFTD's volunteer orientation is required prior to scheduling visits. To learn more and to get involved, please contact your regional coordinator volunteer:  

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 .  

Openings in Telephone Support Groups

AFTD currently has space in two of our phone support groups. Our parents group, for caregivers that also have children under 18 in the home, as well as our group for male caregivers. Connecting with others who understand FTD can be a lifeline for emotional support, practical problem-solving and finding resources. If you would like to join the parent, or male caregivers group, please contact Bridget Moran, Support Services Manager at 267-758-8653 or  We know how isolating caregivers of loved ones with FTD can feel and how helpful it can be to talk to others experiencing similar situations. We hope you join us!

Issue: # 28
August 2016
What's New
Hungry to Make a Difference?

AFTD's 4th Annual  Food for Thought (FFT)  Campaign   is happening  from September 25th through October 9th, 2016. Whip, stir, or bake your way into hosting a food related  fundraising event... or just enjoy pizza with friends! What matters most is that you join with others in your community to   fight FTD.

Fill out this contact form today to host your own FFT event!

Care and Support
AFTD's Regional Coordinator Team Adds Four New Members!
AFTD is proud to welcome four new Regional Coordinators to the volunteer leadership team: Corey Esannason (Middle Atlantic Region), Sarah Beil (Middle Atlantic Region), Zoy  Kocian (South Central Region) and Kathy Urban (Southwest Region). All previous AFTD volunteers, each Regional Coordinator brings individual experiences and strengths to this important position.
Regional Coordinators are vital to the success of the volunteer program because of their work to support all volunteer efforts. We are grateful to our newest Regional Coordinator volunteers as they work to make a difference on behalf of the FTD community.
Kathy Urban, Southwest Regional Coordinator Volunteer said, " Contributing to the FTD community is important to me because navigating this rare disease can feel so isolating at times. I did not take advantage of many of the wonderful AFTD resources when I needed them and I don't want others to make the same mistake! Volunteering for AFTD is the least I can do give back to this community and raise public awareness of this disease."
To learn about AFTD's volunteer network and current opportunities, contact Volunteer Manager, Kerri Barthel at or 866-507-7222.
Grief and FTD...

After losing h er father to FTD in 2014, Christina Gebel, a young adult in her 20s, found herself belon ging to a club she didn't want to be a part of - a club of others like her that lost a parent at a young age. She realized she was now on the receiving end of advice that was not always what she wanted or needed to hear. She explains, "Losing a parent long before I ever thought I would has been one of the most jarring and difficult things I've been through in my life. Even though I have the best and most loving friends in the world, I felt lonely in my experience and struggled in managing my grief." She goes on to explain what many people may need in their time of grief, "If I could say one thing to someone supporting a grieving friend, it's that you just need to pay attention: They will show you what they need."
Read more advice from Christina on how to help a grieving friend in this insightful article.

Medical Momentum
Learn How You Can Participate in Research

Mike and Beth Walter, participants in research studies.
Participating  in a clinical trial or other type of research study is a way you can contribute to incr e asing our under sta nding of FTD  and support the search for effective treatments.  To help identify a study that's pertinent, accessible and manageable, t he AFTD website provides a regularly updated list of current clinical trials and studies. The most recent update is available  here  and  lists 12 new studies. 

These updates include new trials evaluating treatments that are not medications, trials focused on primary progressive aphasia, for progressive supranuclear palsy, or corticobasal degeneration and studies using PET or MRI imaging to track changes in the brains of individuals with FTD. Each description includes a link to the corresponding entry on , where you'll find additional information on the location of the study, who's eligible to participate, what's involved, and who to contact for more information.

Interest Mounts as FTD Biomarkers Grant Recipients are Decided...

The FTD Biomarkers Initiative, a new grant program focused on biomarker discovery and development, will award its first grant recipients later this year.  On August 15 and 16, the FTD Biomarkers Initiative Scientific Advisory Board will meet in New York to choose the "best of the best" from the first group of 23 proposals submitted to the program. "We are encouraged by the enthusiastic response from the research community to the FTD Biomarkers Initiative," notes AFTD Research Manager Debra Niehoff. "We're looking forward to the advisory board's recommendations and to awarding the first grants to support biomarker research."  
The AFTD-Team
Spotlight on Food For Thought Liaison, Erin Hopper

Erin's daughter and a friend at the family's 2015 Food for Thought event. 
While many people decide to host a FFT event to educate others about FTD, most have also been personally touched by this disease. Erin Hopper is no exception.

In 2013, she and her mother, Cheryl Johnson, co-hosted their first FFT event, an all you can eat brunch and raffle in honor of her step-dad, Doug. In 2014, Erin and her mom co-hosted their second FFT event and became volunteer FFT liaisons. In 2015, Erin again volunteered to be a liaison, while co-hosting her third FFT event.

" We felt very strongly that we needed to do whatever possible to help other families learn about FTD, so that maybe they recognize signs in their own loved ones and get them diagnosed earlier," Erin said . "The opportunity to network with other families and talk to people about the heartbreak of seeing someone you love become lost, and know that they understand what you've been through is so precious."
Erin's serving as a liaison for the third time this year, and co-hosting her fourth FFT event with her mom. 

Volunteers like Erin drive the fight against FTD.  If you're ready to serve up something special, click here to sign-up to host your very own event. Who knows, Erin might even be your FFT liaison!

Join the AFTD-Team in LA and Philly!

The AFTD-Team in Austin, TX in June.
If you're local to the Delaware Valley or Southern California, join the AFTD-Team in your community later this year. 

W e will be participating in the  Griffith Luau 5K & Kids 1K Run/Walk  (Los Angeles, CA) on August 13th and the  Philadelphia Marathon  (Philadelphia, PA) on November 19th and 20th. 

For the Philadelphia Marathon, AFTD has a limited number of marathon, hal f marathon and 8K bibs that we want to give to you, for   free   (that's up to a $140 value). Simply create a fundraiser on Crowdrise a nd raise enough money to qualify for a free bib. You've got plenty of time  to fundraise and train, so  fill out this form   to reserve your bib today!

Words of enCOURAGEment
Sarah Scheuermann in 2008.
Excerpts  from Song Without Words
By: Sarah Scheuermann
I want to go public with my Dementia. I kept it a secret for years. I remember the time when I first noticed something was wrong with my speech. I was reading to my fir st grade class when I struggled with pronunciation. I even remember what book I was reading. I thought, "What is going on?" I was in t raining for a new job, working with teachers in Early Literacy. I was going to teach a graduate level class. My speech was very important to my job and career - this was in 2001. I was diagnosed with Primary Progressive Aphasia (PPA) in 2003, but my speech was the only problem. They later changed my diagnosis to Frontal Dementia with Apraxia.

I have trouble with articulation. I have pens and paper scattered all over my house. My husband tries to understand me, but most of the time I rely on writing. I can understand conversation but I can't think of a reply. When I try to speak my brain is thinking about something else.

What Helps

A whiteboard with lots of markers, pens, and paper all at hand. I'm all for "low tech." When I write on my whiteboard, everybody in the group can read as I go along, except the one thing I have to learn is don't start out too big.  Another thing that helps is carrying cards that say: "Hello, I am Sarah Scheuermann. I have Frontal Temporal Dementia with Apraxia, which is a speech disorder that affects my oral language. It doesn't affect my listening, reading or writing. I am uncomfortable speaking, so if you will talk I will listen."

  • Plan ahead. Tell your family what you want when it comes time to decide about long term care.
  • Exercise and eat healthy.
  • Ask your closest friends to be your support group.
Although Sarah lost her battle to FTD earlier this year, she had written additional blog entries, poetry and verses. Her entire blog can be accessed here .

AFTD's Network of Support
AFTD Welcomes our Newly Affiliated Support Group Facilitators!
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:

Amy Almeida
Cambridge MA
Susan McEwan
Detroit area
Jim Dilmore
Pittsburgh, PA
Sandy Cournoyer
Hugo, MN 
Liz Johnston
San Luis Obispo, CA
Patricia Lombreglia
Florham Park, NJ
Stacy Rathbone
Tulsa, OK
Doug Seubert
Marshfield, WI
Tiffany Turner
Tulsa, OK
Sidney Williams
Southern Delaware Valley

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 at or 267-758-8653.    

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