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

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Join us on  May 13th in Minneapolis!

Registration is live for AFTD's 2016 Annual Conference. 

Information on Comstock Travel Grants for attendees, as well as opportunities for individual and corporate sponsorships, is now available. The keynote speaker, accomplished children's author and illustrator, Nancy Carlson, will share her personal journey with FTD as caregiver to her husband, Barry. Download a  conference flyer
 for more information about the program, as well as an agenda for the day.

Check  here  for more information, and to register.

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
kbarthel@theaftd.org.

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  info@theaftd.org.  
Issue: # 25
February 2016
What's New
With Love

February has arrived, and AFTD's  With Love campaign has begun!

We are seeking volunteers to join us in a show of force --the force of love -- against FTD. There are multiple ways to take part:

1. Share your story: Raise a wareness and funds to support AFTD's mission. Visit  our  campaign page on Givezooks , click on  Create a Fundraiser , and share your love story.
 
2. Share a video: Beginning on February 8th, volunteers across the U.S. will join us to release a special awareness video created by a student team at Boston University. You can participate by sharing the video through your social media groups!

3. Share our page: Share campaign information with your email and social media contacts to spread the word! Simply share this link:  http://bit.ly/1PL51Yc

4. Donate:  click here to read the stories our campaign participants have shared, then make a donation! Every campaign listed supports AFTD.

Email  bgraham@theaftd.org for more information on these options. You can learn more about this year's With Love campaign and the ways you can participate  here.
Caregivers' Corner 
PPA: Maximizing Communication Success

Primary Progressive Aphasia (PPA) causes a gradual decline in the ability to communicate, resulting from the degeneration of speech and language networks in the brain. The last 5-10 years have seen an improvement in diagnosis as well as the management of symptoms of PPA, especially with the support of Speech-Language Pathologists (SLPs) as a critical member of the care team.

The latest issue of  Partners in FTD Care features the case of Ben M., as he progresses through the stages of nonfluent/agrammatic PPA.Changes in his communication over time, and the efforts of his care team to rebuild lost function, supplement verbal communication with nonverbal modes of expression and train communication partners are discussed. Read the entire newsletter here.

Make Sure Your Voice is Heard: Participate in AFTD's Economic Burden Survey!

AFTD announced in January that a new study, created to measure the economic burden that FTD imposes on a family, is now available to all current caregivers and those who have been caregivers within the past twelve months. This study, offered through a confidential and secure survey, is the first of its kind, and serves as a unique opportunity to share insights into the path of the FTD diagnosis and beyond. Conducted by Dr. James Galvin, the results of this study will be used to advocate for better and more appropriate services, secure additional research funding and to make measurable improvements to the quality of patient care.

Input from US-based families impacted by all variants of FTD, including behavioral variant FTD, primary progressive aphasia, progressive supranuclear palsy, corticobasal syndrome and FTD-ALS is needed. Please spend an hour to complete this important survey  to ensure your experiences with this disease are counted toward the results. You can access the survey here:
 

If you do not meet the criteria for this survey, know that your experience is essential to our understanding of FTD. We welcome any anecdotal information you can provide to advance our understanding in this area, and you are encouraged to provide that by emailing us at: info@theaftd.org.
 Medical Momentum
AFTD Announces 2015 Pilot Grant Recipients

Sandra Almedia, PhD
AFTD is pleased to profile our 2015 Pilot Grant award recipients:

We awarded  Dr. Sandra Almeida our 2015 Basic Science  Pilot Grant for her proposal, "Reducing repeat toxicity in iPSC cortical neurons of C9ORF72 FTD patients." is an Assistant Professor of Neurology at the University of Massachusetts Medical School. Her project will involve "reprogramming" skin cells from patients with the C9ORF72 gene mutation (the most common mutation in FTD) to generate stem cells. These stem cells can develop into brain cells (neurons) with the same C9ORF72 mutation found in the patients' own brains. Using genetic engineering techniques, Dr. Almeida will attempt to correct some toxic effects of the C9ORF72 mutation in the laboratory-grown neurons.
  
Roy Hamilton, MD
We awarded the Susan Marcus Memorial Fund Clinical Research Pilot Grant to Roy Hamilton, MD, an Assistant Professor of Neurology at the University of Pennsylvania. His research project, "Transcranial direct current stimulation (tDCS) as a treatment for Primary Progressive Aphasia," will test whether a painless form of brain stimulation can improve language abilities in people with PPA. The results of several small studies of tDCS in PPA have been encouraging, but more research is needed to draw firm conclusions about the treatment's effectiveness. If Dr. Hamilton's study confirms earlier results, tDCS could become a noninvasive therapy with the potential to improve the lives of individuals with PPA. Learn more about AFTD Grants Awarded here.
The AFTD-Team

Like to run or walk in 5Ks? Join us to raise awareness and funds to fight this disease!  

As spring approaches, we're digging out our running shoes, and AFTD staff and volunteers may be converging in your region for an upcoming event! Dates confirmed so far are: 

Mar 12: Watertown, CT 
May 22: King of Prussia, PA
June 5: Cambridge, MA
June 25: Austin, TX

Email bgraham@theaftd.org  for information on registration. We would also love to hear about events near you, as we plan our spring calendar. Get in touch if you would like us to target an event in your area!

Bridget Graham
Grassroots Events Coordinator
Words of enCOURAGEment


I am Susan, a person with a diagnosis, PWD.

I look back on the early days and m
ont hs of being diagnosed with FTD. There was a list of "must do's" given to my family, as if I had already exited the functional category :

1. Get your affairs in order.
2. Stop driving.
3. Stop working.

And the real oxymoron, stay social!

I can adamantly say, after nearly 4 years post diagnosis, that in hindsight and in my case, I believe family and doctors should be learning from those 
living with the diagnosis. 

My experience as a PWD, as kind as our families and care partners intentions may be, disengagement can feel isolating and depressing. Unless I cannot engage in discussions, plans, etc., I know how important my engaging is to being understood and understanding.

We ALL learn by sharing and bringing the lived experience of the person with the diagnosis to the table, thus shedding light on the quality of life for everyone involved.

Susan Suchan
EOA/FTD/PPA/Movement Disorder

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