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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AFTD Webinar Series

Did you miss AFTD's January 2017 webinar, featuring Dr. Alvin Holm? Dr. Holm explored how FTD treatment options benefit from both integrated and comprehensive approaches.  Watch the full webinar  here .

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.

AFTD Closed Facebook Groups

AFTD offers a closed Facebook group here where members are invited to share their stories, and respond to discussion topics on the page. Medical questions should still be directed to the HelpLine at 
info@theaftd.org or 866.507.7222.

Comstock Respite and Travel Grants

Comstock Respite Grants help full-time, unpaid caregivers arrange short-term daytime or overnight care for loved ones diagnosed with FTD. Caregivers decide how to best use the funds based on their situation and needs.

Comstock Travel Grants provide modest financial assistance to make it possible to attend an FTD education conference. The maximum annual award for these programs is $500. Further information regarding Comstock Respite and Travel Grants is provided 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  info@theaftd.org .  
Issue: # 32
April 2017
What's New
Have You Registered for AFTD's 
2017 Education Conference?
 
AFTD's 2017 Education Conference is a quick month away, which means time is limited to make arrangements to attend! With engaging presentations from leading FTD clinicians and scientists, this year's agenda is sure to provide a full day of informative presentations and networking opportunities to all in attendance. 

In response to feedback from previous Conference attendees, we're offering a wider range of breakout session options than ever before, including more options for persons living with FTD. 

Travel grants and reduced hotel room rates are still available. Secure your spot at this year's conference: register today!
Care and Support

The FTD Disorders Registry has launched! This powerful new resource  relies on you -- persons diagnosed with FTD, their family members, caregivers and friends -- to advance the science of FTD research. 

All who join will receive periodic news and FTD research updates by email. Research participants will receive notifications to participate in surveys.

The first step is simple: Tell your story. 

Visit:   www.ftdregistry.org .

The Registry is open to international enrollment, but to participate in research today you must be a resident of the U.S. or Canada and 18 years of age (19 in those states and provinces where the age of majority is 19; Alberta, Saskatchewan, Newfoundland and Labrador currently excluded).

Partners in FTD Care Spring 2017 Issue
 
As a nurse, Anne L. made a career of helping others. So after she was diagnosed with bvFTD, it was natural that she and her husband Paul got involved in FTD research -- traveling frequently for neurological tests, PET scans, MRIs and more -- to help scientists someday develop an effective treatment for FTD.

The newest issue of Partners in FTD Care details the unique obstacles that FTD can present to families as they travel to research facilities and academic centers. Paul's story illustrates that, even though participating in research can be a challenge, it is a worthwhile one, helping scientists to gain a better understanding of this disease and foster future gains in diagnosis, treatment, prevention and a cure.
 
Read the entire Spring 2017  Partners in FTD Care here .
Medical Momentum
AFTD Announces 2017 Postdoctoral Fellowship Recipients 

An aspiring researcher's scientific training does not end after receiving an advanced degree. New graduates typically continue their education as a postdoctoral fellow in the lab of an established scientist. In addition to benefiting from the mentorship of a more experienced researcher, postdocs also learn new laboratory techniques and chart the course of their future research.

This year, AFTD was fortunate to be able to fund two Postdoctoral Fellowships. We're proud to announce the recipients:
Kathryn Bowles, PhD

Kathryn Bowles, PhD of the Icahn School of Medicine at Mount Sinai, awarded a fellowship for her proposal "Identification and validation of novel MAPT splicing factors and RNA-binding proteins," will complete her postdoctoral training under the supervision of Dr. Alison Goate. Dr. Bowles will seek to identify proteins that regulate the production of tau and could represent novel targets for FTD drug development.

Joseph-Patrick Clarke, PhD

Joseph-Patrick Clarke, PhD received a fellowship for his proposal, "Nucleocytoplasmic transport defects perturb granular flux in FTD." Dr. Clarke, who will complete his postdoctoral training at the University of Pittsburgh School Of Medicine under the supervision of Dr. Christopher Donnelly, will study neurons (brain cells) derived from FTD patients' induced pluripotent stem cells to identify protein transport defects that could be amenable to treatment.

The AFTD-Team
Walk/Run to #EndFTD  

If you're looking for an opportunity to raise funds and raise awareness of FTD, while combining the great outdoors, then search no further. The spring and summer seasons are home to our annual race-related campaigns. Whether you want to participate in a triathlon, marathon, half marathon, 5K, fun run or anything in between, the AFTD-Team wants you on our side!
 
Last season, 188 AFTD-Team volunteers covered 782 miles combined and raised more than $29,000! This season, our goal is to participate in races in 7 different cities and raise at least $60,000. The AFTD-Team will have a formal presence at these five races:
We are also exploring potential races in Boston, Los Angeles and Seattle. Keep the AFTD-Team in mind if you know of any great ones!

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 back for more races added as the season progresses either on our website or Classy page.

Thanks to all who made the 2017 With Love campaign a success! 

Through AFTD's With Love campaign, members of our community honor or remember a loved one impacted by FTD. This past February, 23 brave hosts shared their stories of love to raise FTD awareness and raise funds to support AFTD's mission. 

Through their heartfelt efforts, AFTD's With Love 2017  campaign raised $91,635 to support the fight against FTD.

The AFTD-Team would like to extend a huge thank you to everyone involved in this campaign's success: Two very generous campaign donors, Beth Walter and The Rainwater Charitable Foundation, made crucial matching contributions, and more than 439 campaign donors provided individual donations. And of course, thank you to our brave campaign hosts who shared their stories of love, spread awareness and raised important funds to advance AFTD's mission.

Words of Encouragement 
Lew's Rules for Survival

Lew Lorton offers perspective on staying afloat, despite the drastic changes that often come with FTD caregiving.

As my wife descended into the confusion of PPA, my life changed radically. She could no longer be left alone, and since we had no family or close friends living nearby -- and since she would not tolerate other caregivers in the house -- I was on duty 24/7. Most of my free time was replaced by new responsibilities, decisions and tasks that I felt very much unprepared for.
 
So I took steps to simplify our lives. I scheduled automatic payments of our bills and started cooking quick meals that my wife liked. I began using the shopping-list apps on my smartphone. I learned that laundry doesn't really need to be sorted into five different piles.
 
Yet as my wife's PPA progressed, my own mental condition deteriorated. I was getting more frantic and depressed by the day.
 
At this point, I began to investigate the functional guidelines of Buddhism, and I developed a set of rules based on its tenets. Now, I'm not advocating for any particular religious belief. These guidelines are extremely useful for me during difficult times:
  • Don't think you have control. You don't.
  • Yeah, life really sucks sometimes. But fairness has no place in the scheme of things... Accept how things are; don't cling to expectations of how they "should" be.
  • Let anger die quickly and hold onto any spark of happiness as long as you can.
  • Just make it through today the best way you can.
Yes, I still get angry or frustrated. I'm as human as everyone else. But these rules are my life preserver. I cling to them, and they keep me afloat.
Community Connection
Featured Volunteer Opportunity

AFTD volunteer opportunities offer a satisfying and rewarding experience that will meet your individual goals and make a positive impact on behalf of the FTD community. 

As one way to volunteer with AFTD, consider becoming a Facility Outreach Volunteer. You'll conduct awareness visits by sharing FTD and AFTD information with facility administrators in your community. AFTD will provide you with an interview guide to help shape your visit. The next training for this role will take place Tuesday, July 18th, 8:00pm (EDT). Contact your Regional Coordinator Volunteer here to learn more and sign up
 
Meet and Greets

Local to Bethesda, MD or the Pittsburgh area? 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.

Bethesda, Maryland

Please join Regional Coordinator Volunteer Sarah Beil and Volunteer Elaine Rose:

Tuesday, April 18th, 7:30-9:30 p.m.
8005 Connecticut Avenue
Chevy Chase, MD 20815

RSVP: Sarah Beil @  sbeil.aftd@gmail.com
Please include "MD Meet and Greet" when you RSVP.

Pittsburgh, Pennsylvania

Please join Regional Coordinator Volunteer Sarah Beil:

Saturday, April 22nd, 1:00-3:00 p.m.
1066 Washington Road 
Mt. Lebanon, PA 15228

RSVP: Sarah Beil @  sbeil.aftd@gmail.com
Please include "PA Meet and Greet" when you RSVP.

AFTD Telephone Support Groups
 
AFTD's online Regional pages can link you with support groups in communities across the country. 

Unable to find a suitable meeting in your area? AFTD also offers telephone support groups for those who may not have access to support otherwise. 

Led by experienced AFTD facilitators, these small groups meet monthly through a toll-free conference call, or through an easy to use web-camera platform, Zoom. 

For caregivers, each group has a different area of focus based on the main area of challenge: language and communication symptoms, behavioral symptoms, people caring for a spouse/partner who have children at home, an all-male caregivers group and those caring for people with FTD-ALS.
 
For persons with FTD, a mutual support group facilitated by AFTD staff meets monthly via the Zoom platform. 

For more information regarding these support options, contact  info@theaftd.org, or call 866-507-7222.

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