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

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Lead Volunteers Wanted

As the cornerstone of AFTD's volunteer program, regional coordinators support volunteers in helping them achieve their individual volunteer goals, connect with people impacted by FTD, coordinate volunteer activities and represent AFTD. You can help make a difference in your region by joining AFTD's volunteer leadership team. To learn more, contact Kerri Barthel, Volunteer Manager at 
(267) 758-8652 or

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!

Will You Support Caregiver Respite?

Support from our donors helps more caregivers each year to benefit from Comstock Respite Grants. Whatever the donation, every dollar counts, Will you  support caregiver respite  today?
Issue: # 27
June 2016
What's New

Lauder and Newhouse Foundations Invest $10 Million in FTD Research

Click  here  to find press coverage in  USA Today  and other publications, and to read the full press release.

Care and Support

The 2016 AFTD Education Conference was a Success!

AFTD's annual Education Conference was held in Minneapolis, MN on Friday, May 13th, and we  would like to thank all who took part. From the heartfelt, poignant and funny keynote address given by author Nancy Carlson, to the engaging and interactive breakout sessions for people diagnosed, it was a great day for our entire FTD community. 

The Conference this year saw close to 270 attendees, making it the largest to date. It facilitated many firsts, including a welcome video from Susan Suchan who is diagnosed with PPA, as well as FTD Through Our Eyes, a video created by kids and teens of diagnosed parents. Attendees heard from clinicians from the Mayo Clinic, and other respected researchers and health professionals. 

If you or would like to reference the presentations from the day's agenda, click   here to access them, as well as the   program booklet . We will add additional materials as they become available.

AFTD Program Director, Sharon Denny, notes: " For AFTD staff and our community, time spent together face-to-face is incredibly valuable . We appreciate the opportunity to share growing momentum in our work each year." 

Save the date: Next year's Education Conference will take place on   May 5th, 2017, in Baltimore, MD!

FTD When There Are Kids in the Home: Creating a Village of Support

AFTD's spring issue of Partners in FTD Care focused on how families can think strategically when one parent has been diagnosed with FTD while children still live at home.  

This latest issue  explores the case of David S. It describes how he and his family managed his bvFTD diagnosis at age 45, including measures he and his wife put into place early on to decrease the level of stress on the family later. It also  outlines strategies and resources for residential and facility care staff to help the entire family cope throughout the FTD journey.

The education sheet  What to Do About... offers tips on how to manage stress by building a village of support, while also effectively responding to the children's needs. 

You can read the entire spring 2016 Partners in FTD Care newsletter  here.

Medical Momentum

FTD Treatment Study Group Meeting Offers a Promising Future for Drug Development

Left to right, Marc Diamond, Jonathan Rohrer, William Seeley and Chiadi Onyike at the FTSG Conference Reception.
"Optimistic." That's the word the 94 participants in the FTD Treatment Study Group (FTSG) workshop, held March 31 - April 1 in Bethesda, MD, used to describe the tone of the conference and their conclusions about prospects for FTD drug development. "The speed and breadth of developments in science have been staggering," said Michael Gold, Vice-President of Neuroscience Global Product Development at PPD. 

AFTD has long recognized that progress in FTD research will require the collective efforts of researchers from diverse settings, a realization that led to partnering with like-minded individuals in industry and other nonprofits to establish the FTSG in 2010. The Bethesda 2016 meeting, co-hosted by AFTD and the National Institute for Neurological Disorders and Stroke (NINDS), was the latest in a series of FTSG workshops focused on promoting international communication and collaboration to develop FTD therapeutics.

The availability of new tools and resources to support drug development research (e.g., the FTD Disorders Registry), insights from initial clinical trials and efforts by industry and regulators to find common ground also contributed to conference goers' belief that the search for FTD treatments is poised to take significant steps forward. Finally, Gold cited the critical role of AFTD's advocacy: "By raising money and awareness, AFTD is helping to move the ball downfield."

The AFTD-Team

Walk to #EndFTD  

The AFTD-Team in King of Prussia, PA on May 22, 2016.
The AFTD-Team wants YOU to walk or run alongside us at one of our upcoming races. Before the race, create a fundraiser and raise $250 or more to receive a free The AFTD-Team performance t-shirt to wear proudly during the race. We're excited to announce that AFTD is an official charity partner of the Humana Rock 'n' Roll Chicago race and the Philadelphia Marathon. Contact AFTD's Grassroots Events Coordinator, Bridget Graham at, to find out how you can earn free bibs to either race. Sign up for one of our upcoming races today:
Food for Thought 2016 - Let's See Events in All 50 States!  

Thirty people signed up to host Food for Thought events during AFTD's 2016 Educational Conference.
It's time to begin preparations for Food for Thought 2016! This year we've extended the traditional one week to two. Food For Thought events will take place from September 25th through October 9th, 2016. 
During those two weeks, host a fundraising event, large or small, that combines food/drink to promote FTD awareness and education. Planning an event is easy and AFTD staff and volunteers are here to help. Share your story while educating others in your community about FTD and raise vital funds to support AFTD's mission. Put your state on the map! Email Bridget Graham at , or fill out this form to get started. 

Words of enCOURAGEment

Dementia, an Open Letter
By: Sara Rice
Sara, mother to four children and daughter to Elizabeth, age 55,  finds healing through writing about how FTD has changed her mother in a series of blog posts called, On the Wrong Foot. In the below post, she describes how FTD has transformed her mother into someone she doesn't recognize :
Dear Dementia,
Sara's mother, Elizabeth, with Sara and her brother as babies.

Thank you for gracing us with your presence over the last few years. You have come when we least expected it, and always seem to give us so many surprises. I do have a few things that I would like to
talk to you about. I am having a slight issue with you hanging around. I do not remember asking for you to come in the first place, and now that you are here, you seem to linger far beyond anyone's desires. Least of all, my mother's desire. She knows that something is not right inside her brain, and I think it's rude that you mess with her thoughts and emotions, causing her to fear her own worldly outlook. You are a jerk. Let's all face it, the issues she is having are all your fault, and the intense anger many of us feel inside is also your fault.

However, despite all your efforts, this family is remaining strong. We have managed to fit seven people into our home, and will continue to do so as long as we can. My husband is a hard-working, loving, religious man who has taken on a responsibility that he never dreamed of taking on. Our older 2 children, despite their adolescent faults, have a unique view of the world. How many children will learn the love and responsibility that they will be learning, helping family the way it was intended to be? This is my duty as a daughter, and I take joy and pride in this. This is my mother's given right, to have her children take care of her, and we do.

Yes, you thief, no thanks to you, I am learning that life is fragile. I am learning that you cannot take advantage of the one's you love. Sure, my mother is around on a daily basis, but she is not my mother. She is not the woman that I knew growing up, and that makes me so angry. What the hell were you thinking, choosing her? What is your problem? I am broken-hearted, but I am strong. You were unexpected and unwanted, but we will work through this. I still wish you'd just go away, but let's face it, you're not going anywhere. 

Until our next correspondence...

~A Determined Daughter
You can access Sara's complete blog here.

AFTD's Network of Support

AFTD Welcomes our Newly Affiliated Support Group Facilitators!
AFTD and support group facilitators work together to find creative ways to serve our community's needs. With this initiative, our hope is to achieve a network of volunteer support group leaders who are well informed about FTD and continue to learn about meaningful applications of best practices specific to FTD groups. 

These individuals have the support and backing of each other, as well as the information hub of the community: AFTD. Thanks to each of you for sharing your talents by providing this invaluable resource. By working together, we are able to offer the most up-to-date resources and information available to our FTD community. We are honored to have you on board! 

Katie Brandt
Newtown, MA
Dionne Coston  
San Antonio, TX
Deborah Dolan  
Eden Prairie, MN
Susan Miller-Abbott  
Quakertown, PA 
Steve Fenoglio
Austin, TX

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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