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

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The FTD Disorders Registry

Launched in March, this powerful new resource relies on persons diagnosed with FTD, their family members, caregivers and friends -- to advance the science of FTD research.  Click here to visit the Registry.

AFTD Young Adult Facebook Group

Have you seen the "secret" Facebook group for young adults in their twenties and thirties who have a loved one with FTD? To become a member of this group, email youngadults@theaftd.org and include the email address you used to open your Facebook account. You will receive a group invite within a week.

AFTD's Helpline

AFTD's most important direct service to people with FTD, caregivers and professionals, the HelpLine is reachable by phone or email, and is staffed Monday through Friday during AFTD office hours. Call  866.507.7222 toll-free, or  info@theaftd.org .

World FTD United Facebook Page

Not a resource from AFTD, but a Facebook page where AFTD, other international organizations, and advocates around the world unite to raise FTD awareness and fight this disease! Visit here.

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  

Issue: # 33
June 2017
What's New
AFTD Webinar:  Exploring Distinct Subtypes of Behavioral Variant FTD
Katherine Rankin, PhD

Presented by Dr. Katherine Rankin, the third installment in the AFTD educational webinar series explores  how researchers have identified specific patterns of nerve cell loss that lead to four distinct sub-types of bvFTD. This webinar can help individuals, families and healthcare professionals better understand how people with a bvFTD diagnosis can present 
so differently; it also suggests new perspectives on managing FTD.  
 
Dr. Katherine Rankin is a neuropsychologist and professor in the UCSF Department of Neurology, specializing in the neuropsychological, neuroanatomic and genetic underpinnings of human socioemotional behavior. 

Watch the webinar here.

Care and Support

2017 AFTD Education Conference Highlights

AFTD's annual Education Conference was held in Baltimore, MD on Friday, May 5th, and we  would like to sincerely thank everyone who attended. From the powerful and heartfelt keynote address given by Dr. Halima Amjad, to the engaging interactive breakout sessions for persons diagnosed, it was a memorable day for our entire FTD community. 

Chiadi Onyike, MD
The Conference this year saw more than 320 attendees, making it our largest to date. The day began with an insightful presentation by Dr. Chiadi Onyike, who discussed the FTD clinical spectrum, diagnosis, care, and treatment development.  During lunch, a Young Adults Networking Session allowed a younger crowd to share their experiences and offer different perspectives on how they are navigating a loved one's FTD diagnosis. 

A total of 15 breakout sessions gave attendees the opportunity to listen to clinicians and researchers from Johns Hopkins University, The University of Pennsylvania and Thomas Jefferson University.

If you would like to reference the presentations from the day's agenda, click   here to access them, as well as the   program booklet .

Save the date: Next year's Education Conference will take place on  April  13th, 2018 in Chicago, IL!

AFTD Quality of Life Grants

Starting in July 2017 AFTD will pilot a new Quality of Life grant for persons diagnosed with an FTD disorder, as part of the Comstock Travel and Respite Grant Program.

For the pilot, AFTD will award 20 Comstock Quality of Life Grants and collect feedback to help us make future improvements. Each pilot grantee will be given a pre-paid debit card containing $500 to offset the costs of health care (medication, therapy, insurance co-pays), communications tools (smartphones, iPads), transportation (such as rides in taxis or accessible vans), grooming and cosmetic services (such as haircuts, manicure/pedicures, etc.), and other services that improve quality of life for the person diagnosed.

Pending the results of the pilot, the Quality of Life Grants will be incorporated into AFTD's overall Comstock grant program. Anyone living in the U.S. and Canada with a documented diagnosis of an FTD disorder will be eligible for one Comstock Quality of Life grant per fiscal year.

For more information, contact the AFTD HelpLine at 866-507-7222 or by emailing info@theaftd.org.

Medical Momentum
Case Western Reserve Investigator Receives 2016 Drug Discovery Award
Xinglong Wang, PhD

AFTD, in partnership with the Alzheimer's Drug Discovery Foundation, is proud to announce the first of two recipients of the 2016 Accelerating Drug Discovery for Frontotemporal Degeneration awards. Xinglong Wang, PhD, an assistant professor in the Department of Pathology at Case Western Reserve University, will recieve the award for his proposal "Mitochondrial TDP-43 as a Novel Therapeutic Target for FTD."

Over half of cases of FTD are characterized by the abnormal accumulation of the protein TDP-43 in neurons (brain cells). Normally localized to the nucleus, in FTD, TDP-43 collects in the mitochondria, cellular structures responsible for generating the energy needed to carry out activities essential to survival. The wayward TDP-43 disrupts energy production - with catastrophic consequences for the neuron. A drug able to keep TDP-43 out of mitochondria could have beneficial effects in FTD by preventing the toxic effect of TDP-43 on mitochondrial function.

A pilot study by Dr. Wang showed that a peptide (protein fragment) able to block TDP-43 localization to mitochondria prevented dysfunction and cell death in mice with a disease-causing TDP-43 mutation. Dr. Wang will use his Drug Discovery award to screen over 700 additional drugs already shown to be safe in humans for their effectiveness in suppressing TDP-43 effects on mitochondria. Such drugs could ultimately be repurposed to treat FTD. 

The AFTD-Team
Walk/Run to #EndFTD 

The AFTD-Team's 2017 Race Season is off to a great start! Just in the month of May alone, the AFTD-Team had a formal presence in three races: Colfax Marathon (Denver, CO), Fit Foodie 5K (Austin, TX) and King of Prussia 10 Miler 5K (PA). Combined, our 115 teammates raised more than $9,000 -- but the season's not over yet. Here is a list of the upcoming races that the AFTD-Team is participating in:
Visit our official AFTD-Team 2017 Race Season page for fundraising opportunities, and the chance to run for free by supporting AFTD's mission. 

Be sure to check our Classy page for more races as the season progresses.

Food for Thought 2017

Food for Thought 2017 will be held September 24th through October 8th and the time to start planning is now! One rewarding way you can partake in Food for Thought is by being a volunteer liaison. For more information on becoming a Food for Thought Volunteer Liaison, please email AFTD's Grassroots Events Coordinator, Bridget Graham: bgraham@theaftd.org

Words of Encouragement
Sheryl Whitman offered encouraging words as the opening speaker of the 2017 AFTD Education Conference, adapted here for The Gateway.

Sheryl Whitman
Four years ago, when I was 50, I was diagnosed with logopenic primary progressive aphasia, the speech/language variant of frontotemporal degeneration. I feel blessed to have the Association in our corner. They are the only organization solely focused on FTD.   Seeing the event grow really shows how much we can do when we all work together.

For those of us diagnosed, the annual conference is a learning experience. It's a teaching experience. It's a time for those newly diagnosed with FTD to meet others on the same journey. And it's a chance for a lot of us to actually meet other people diagnosed with FTD, face to face, for the first time.

It doesn't matter if you have difficulty with speech or behavior, we're all in this together. We understand and we're here to help. The camaraderie, the love, and the chance to just be ourselves with no judgment -- there is absolutely no feeling in the world like it! For me, personally, I can be myself; I can spend time and share struggles and good times and laughter with my "FTD family."

On behalf of persons diagnosed, I would like to thank AFTD for bringing us together to advocate for the good of all. I'd also like to thank AFTD for continuing to keep us involved in carrying out the organization's mission. It means so much to all of us.

Community Connection
Featured Volunteer Opportunity

Stimulating greater public FTD awareness and understanding across the country is important and you can help by becoming an AFTD Community Awareness Representative Volunteer. Find a community or wellness event, health fair or other event. in your neighborhood where you can represent AFTD and share FTD information. AFTD will provide you with suggestions of where to look for possible opportunities in your area. To learn more, contact your AFTD Regional Coordinator Volunteer today!

New Regional Coordinator Volunteer! 

Joanne Linerud
AFTD would like to welcome Northwest Regional Coordinator Volunteer Joanne Linerud! She joins Amy Eissler Parker in managing the region. Joanne oversees Washington, Idaho, and Wyoming. Amy is responsible for Oregon, Alaska and Montana. Regional coordinator volunteers are the principal coordinators of activities providing support and guidance to their volunteers, and they represent AFTD throughout the region. If you are in the Northwest Region, Amy ( aeisller.aftd@gmail.com) and Joanne ( jlinerud.aftd@gmail.com ) would love to hear from you to talk about volunteer opportunities.

Meet and Greets

Local to Columbia, SC; Boise, ID; or Richland or Spokane, WA? We invite you to join us for informal gatherings of local families, friends, caregivers, persons diagnosed with FTD and community professionals to connect, learn, discover and share.

Boise, Idaho --  Flyer link  

Today, please join AFTD Support Services Manager Bridget Moran-McCabe:

TODAY -- Wednesday, June 7th, 2017 at 4:30 p.m.
199 N. 8th Street 
Boise, ID 83702

RSVP: Please contact Bridget Moran-McCabe at bmoran@theaftd.org


Please  join AFTD Support Services Manager Bridget Moran-McCabe :

Thursday, June 8th, 2017 at 4:30 p.m.
606 Columbia Point Dr. 
Richland, WA 99352

RSVP: Please contact Bridget Moran-McCabe at
Columbia, South Carolina --  Flyer link

Please join AFTD's South Atlantic Regional Coordinator Volunteer, Michelle Grant:

Saturday, June 24th, 2017 from 2 p.m. - 4 p.m. 
Lutheran Homes of South Carolina 
91 Finley Road 
Columbia, SC 29223

RSVP: An RSVP by June 21st would be appreciated to ensure we can accommodate all interest in this event. To RSVP, please contact AFTD's South Atlantic Regional Coordinator Volunteer, Michelle Grant, at mgrant.aftd@gmail.com.

Spokane, Washington --  Flyer link

Please  Join AFTD's Northwest Regional Coordinator Volunteer, Joanne Linerud:

Saturday, July 1st, 2017 from 10 a.m. - 12 p.m.
Argonne Library 
4322 N. Argonne Road 
Spokane, WA 99212

RSVP: An RSVP by June 28th would be appreciated to ensure we can plan for and accommodate all interest in this event. To RSVP, please contact Joanne Linerud at jlinerud.aftd@gmail.com.
 
AFTD's Network of Support

AFTD offers ongoing training for affiliated volunteer support group facilitators, and is grateful to those willing to share their time and talents to help caregivers gain valuable support and resources. To our newest support group facilitators, we are honored to welcome you! 

Rachel Castellanos New Orleans, Louisiana
Alyssa Radcliffe
Phone Group for Parents
Lauren Brasse Cleveland, Ohio
Jim Fenske Milwaukee, Wisconsin
Jamie Gordon Salt Lake City, Utah
Sarah Lunnborg-Vance 
Eden Prairie, Minnesota
Steph McLain
Georgetown, Texas
Lisa Radin Las Vegas, Nevada

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  bmoran@theaftd.org or 267-758-8653.  

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