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

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Meet Volunteer Manager, Kerri Barthel Keane

Please join AFTD Volunteer Manager Kerri Keane for an informal gathering of local families, friends, caregivers, persons diagnosed with FTD and professionals. Connect with others in the area whose lives have also been affected by FTD, and learn more about AFTD events, programs and resources. 
 
Des Moines, Iowa
Monday, October 17, From 6-8pm
Java Joes Coffee House: 214 4th St., Des Moines, IA 50309
 
Papillion, Nebraska (Omaha area)
Tuesday, October 18, From 6-8pm
Pizza Ranch: 8810 S. 71st Street, Papillion, NE 68133
 
Lomira, WI (North of Milwaukee)
Thursday, October 20, From 6-8pm
Bublitz Restaurant and Ale House: 580 East Avenue, Lomira, WI 53048
 
A private room has been reserved for each gathering and a light dinner will be provided.  

An RSVP to Kerri
at:  kbarthel@theaftd.org by Thursday, October 13th would be appreciated. Hope to see you there!

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 .  

Openings in Telephone Support Groups

AFTD currently has space in three of our phone support groups: our parents group, for caregivers that also have children under 18 in the home; our group for male caregivers; and our FTD/ALS support group. 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 any of these groups, please contact Bridget Moran, Support Services Manager, at 267-758-8653 or or
bmoran@theaftd.org
We know how isolated 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!

AFTD in the Media

This past August, AFTD's Executive Director, Susan L-J Dickinson, was featured on "30 Minutes with Rick Anthony," a Philadelphia-area broadcast that reaches approximately 90,000 people. In the interview, Susan explains FTD and the impact it has on the person diagnosed and their family. The full interview can be seen here.
Issue: # 29
October 2016
What's New
Benefit Brings Hope for the Future

From left to right: Danny Hedaya, Kathy Newhouse Mele, Donald Newhouse, Gail Andersen and Susan Dickinson.

On September 29, AFTD held its inaugural benefit in New York City. The  Hope Rising benefit   honored David Zaslav, President and CEO of Discovery Communications, who received the Susan Newhouse & Si Newhouse Award of Hope. Through Mr. Zaslav's generosity, AFTD's ability to raise awareness has expanded dramatically. With his help, our first publicly-aired PSA has reached more than 12 million viewers since August 2016.

More than 400 people attended.  Paula Zahn graciously emceed the evening, and Tony-Award winning performer Kelli O'Hara sang for the evening's guests.  Olivia Goldring and Susan Suchan powerfully shared their personal perspectives on how FTD impacts individuals and families, and their hopes for the future.

So far, the event has drawn press coverage in  The Huffington Post , New York Social Diary  and a host of other publications.  

Many countries... one hope to #endFTD

The second World FTD Awareness week has drawn to a close - but not before advocates around the globe held events and convened on social media to raise unprecedented levels of FTD awareness. You'll find a growing collection of highlights, including links to event pictures and flyers, New York Times awareness advertisements and the FTD segment that aired on NBC's "Today Show" on AFTD's website .

Anchoring these efforts is AFTD's Food for Thought campaign. From September 25 through October 9, Food for Thought events in 35 states, and countries including the UK and Canada, are raising funds and raising critical awareness of FTD. From restaurant giveback nights to golf outings, hosts are holding events big and small, all involving food and FTD awareness.

As just a few highlights: Returning FFT host, Lucy C. of Nashville, TN held the 1st Annual "Pig Out for a Cure" in collaboration with House: A Social Eatery and Porter Road Butcher. Guests purchased a delicious open pit pork plate and drink, with proceeds benefiting AFTD. Online, Brian Rose issued a "Game of Cones" challenge (see both the campaign and an  epic ice-cream video).

With event results still pouring in, it's not too late to support the campaign, and it's never too late to host your own AFTD grassroots event. Simply email AFTD Grassroots Events Coordinator Bridget Graham, bgraham@theaftd.org. Hosting an event? Be sure to share pictures and highlights. 

Care and Support
AFTD Sponsors 10th International Conference on Frontotemporal Dementias

AFTD was a proud sponsor of the 10th Interna tional Conference on Frontotemporal Dementias in Munich, held 8/31 - 9/2. The conference saw more than 600 participants, who joined 11 sessions and 80 lectures. Past recipients of AFTD research funding presented prominently!  During the scientific meeting, Dr. James Galvin reported on the first FTD economic burden study, conducted with AFTD's assistance. Galvin's study drew prominent coverage in Alzforum , which reported extensively on the Conference overall. 

S haron S. Denny, AFTD's Program  Director, presented a support group poster. The poster, titled "Unity with Creativity: A new model to leverage rare disease advocacy organization expertise into high-quality local support for FTD caregivers," outlined the development of AFTD's affiliated support group network.
 
In the Unity with Creativity Model, affiliated leaders embody AFTD's mission, while retaining local diversity and existing collaborations. Leaders receive training and support from AFTD Support Services Manager Bridget Moran, MPH, and can access knowledge and resources regarding medical advances, research, support and advocacy. Regular collaboration with each other will build a vibrant network of leaders prepared to best meet the needs of group members.   

AFTD's network of FTD support group leaders is the only one of its kind. The poster presented the methods used to develop this network and introduced it to researchers and caregivers from other countries. Future goals include assessing the effectiveness of the model and developing best practices for FTD-specific support groups through feedback received over time.

Medical Momentum
New RFP Spotlights Clinical Trials

In an effort to stimulate FTD drug development, AFTD, in partnership with the Alzheimer's Drug Discovery Foundation (ADDF), released a Request for Proposals for the Treat FTD Fund in September. This 10-year initiative will award $10 million to support FTD clinical trials. The RFP casts a wide net, accepting proposals testing both novel and repurposed drugs for either symptomatic or disease-modifying therapies. Individual investigators as well as multi-investigator teams at nonprofit and for-profit institutions, both public and private, worldwide are eligible to apply. Proposed budgets between $500,000 and $2 million, for trials spanning one to three years, are recommended. Applicants are encouraged to submit proposals that utilize innovative trial designs; include novel endpoints or biomarkers; or take advantage of existing clinical networks, biological sample repositories and patient registries. Letters of intent should  be submitted via www.alzdiscovery.org by November 15, 2016.  The deadline for full applications is February 15, 2017.  For more information, click here .

The Third Drug Discovery Award Goes To...

In 2015, a generous donation to AFTD, matched two to one by the Alzheimer's Drug Discovery Foundation, enabled us to fund three vital projects in drug discovery. AFTD and ADDF are pleased to announce that Keith St. Lawrence, PhD, of the Lawson Health Research Institute, joins Mari DeMarco, PhD, DABCC, and Edward Huey, MD, as the recipient of the third 2015 Drug Discovery award.

Dr. St. Lawrence's project will examine a novel brain imaging technique for measuring cerebral blood flow. He will utilize arterial spin labeling (ASL), an MRI-based method that allows doctors to spot changes in brain structure - like structural MRI - and measure brain activity - like PET, but without the use of a costly radioactive tracer - in the same imaging session. 

He'll be optimizing and validating an ASL protocol developed in his lab with the goal of obtaining an imaging procedure suitable for routine clinical use. To learn more about AFTD's funding opportunities, click here .
  
The AFTD-Team
Plan an Independent Event This Fall!

If you have been unable to take part in Food for Thought this year, consider hosting an independent event any time during the year.  Pla nning and facilitating your own event allows you to tailor it to what works best for you and to your interests and/or hobbies. For inspiration, here are two independent events coming up this fall: 
 
The 2nd Annual John Baumgartner Golf Tournament will be held at Ballantrae Golf Club in Pelham, AL on October 11, 2016, beginning at 9:00 a.m. with a shotgun start. The tournament is hosted by the John Baumgartner Foundation to benefit AFTD's research for a cure for FTD.
 
The 6th Annual Quest for the Cure Golf Outing will be held at Pasaden a Yacht and Country Club in Gulfport, FL on November 4, 2016 at 1 p.m., also with a shotgun start. The outing is hosted by the Robert M. Hatfield Foundation benefiting AFTD's research for a cure.
 
Local to Philly? Join the AFTD-Team this  fall by participating in  The Philadelphia Marathon the weekend of November 19, 2016. Distances include: Marathon (26.2 miles), Half Marathon (13.1 miles) and Rothman Institute 8K (4.9 miles). Fundraise on Crowdrise prior to the Marathon to earn a free bib.
 
For more information on independent events or for more ideas on how you can raise awareness and funds to support AFTD's mission, contact Grassroots Events Coordinator Bridget Graham, at bgraham@theaftd.org .

Words of enCOURAGEment
Carin Hawkins with her mother, Linda.
What My Mother Taught Me
Written by: Carin Hawkins, in honor of her mother, Linda Howerton

My mother began showing definite signs that something was wrong with her in 2004 at the age of 56. Through a long and arduous process, she was diagnosed with FTD in 2007 at the age of 59.  Many of the caregivers reading this are at different stages in the FTD journey, and I am sure that all of you are getting bombarded with plenty of medical, legal and financial recommendations. 

The "to do" list never ends and quickly becomes overwhelming. However, after being on the caregiving journey with my mom for at least 12 years, the single most important piece of advice that I would give to you, especially those just beginning the process, is to take the words "always" and "never" out of your vocabulary. Many of us have found ourselves saying things like:

"I would never put you in a nursing home,"
"I will always keep you home,"
"I would never seek out another life partner or companion,"
"I will always tell you the truth," 
"I could never get divorced,"
"I could never declare bankruptcy."
 
Along this journey, this disease will challenge your spirit. It tests marriages and other relationships, making you confront a person who takes on a different personality. It can strip your finances and threaten your own health.
 
Many will not realize the power of those two words, "always" and "never," until later in the disease. You may be confronted with the reality that the promises you made in the beginning cannot be kept. No matter what, the journey is hard, but avoiding these two words decreases at least SOME of the heartache, guilt, judgment and resentment that can occur. For self-care and the optimal care of your loved one, the only "always" that a caregiver can promise is "I will always provide the best care possible with the knowledge and resources that are available to me at the time." The only "never" should be, "I will never hesitate to ask for help when needed."  

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, welcome! We are honored to have you aboard: 

Robin Albright
Sarasota, FL
Deanna Baker
Tremont, IL
Vickie Bope
Newark, OH
Katrina Hellman
Tremont, IL
Sharon Hall Cumming, GA
Charles Elligson Matthews, NC
Dan Moser Ft. Myers, FL

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

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