Join Our List to Receive The Gateway!
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National Volunteer Week: April 10th - 16th
AFTD thanks each of our volunteers who has signed up to make a difference. Your investment of time and talent for this cause is a key part in our ever-growing success.
Thanks to more than 250 of you who have engaged with AFTD over the past year. Your work is ensuring that the journey will be a little easier for families to come. Be sure to watch a special thank you video from AFTD Executive Director Susan Dickinson.
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
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?
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What's New
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Have You Registered for the 2016 AFTD
Education Conference?
AFTD's Annual Education Conference is a quick month away, which means time is limited to make arrangements to attend. Designed to bring you thoughtful and engaging presentations given by 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 addition to the educational content offered, the Conference will also feature new breakout sessions for those diagnosed with FTD, and supportive material for families navigating the complexities of life with this disease. Travel grants and reduced hotel room rates are still available. Secure your spot at this year's conference: register today!
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Care and Support
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The Future of FTD Research
Having a centralized location of recorded personal experiences is crucial to understanding how a disease affects a patient and their family. Yet one does not exist for FTD.
The FTD Disorders Registry is a secure electronic database that collects information from people diagnosed with any one of the FTD disorders, and from their caregivers and family members. The Registry will launch its first phase in mid-May, and participants will be able to join and get FTD research updates. Participants will be notified when the first Registry research surveys will be available, anticipated in late June 2016.
Input from Registry participants will lead to better understanding of the impact of the disease on individuals and their families. It will also fuel future research, including studies by scientists to learn more about the natural history of FTD by following participants over time, or to develop and test new therapeutics.
Look for an official announcement in May.
"Lost for Words," an article by Ed Yong from
The Atlantic
AFTD supporter and friend Joanne Douglas was diagnosed with PPA at the age of 47. At the time of diagnosis, she was an Assistant Professor at the University of Alabama, and in the prime of her career. Columnist Ed Yong from The Atlantic interviewed Joanne and discusses his impressions of her as she moves through the various stages of PPA, and how she manages to cope on a daily basis in
this poignant article
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| Medical Momentum |
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AFTD Launches New Funding Opportunity to Identify Biomarkers
 Biomarkers are biological features that can be measured objectively and reliably. Physicians use biomarkers to detect disease, track disease progression, and evaluate the response to treatment. Biomarkers are also crucial to researchers, who use them to identify patients who meet the criteria for clinical trials and to assess the effectiveness of new drugs.
Doctors and scientists currently have no FTD biomarkers to guide them, a problem that delays diagnosis and constitutes a major barrier to drug development. Fortunately, AFTD is now able to address the urgent need for FTD biomarkers, thanks to a $5.75 million donation from the Samuel I. Newhouse Foundation. The new FTD Biomarkers Initiative will provide grant funding over the next five years to support innovative research on biomarker discovery and development.
The Initiative's Scientific Advisory Board met in December to discuss the parameters for applications, and Letters of Intent are due April 15. Multi-investigator teams, working in either academia or industry, will be considered.
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The AFTD-Team
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The AFTD-Team needs YOU to join an upcoming walk in your community. Take part in an exciting opportunity to connect, raise awareness, and raise funds to support AFTD's mission.
Join us in your area this spring/summer:
May 22 - King of Prussia 10 Miler 5K Walk/Run (PA)
June 5 - Cambridge 5K - Freedom Run (MA)
June 25 - The Fit Foodie (Austin, TX)
July 16 - Humana Rock 'n' Roll Chicago (IL)
August 13 - Griffith Luau 5k & Kids 1k Run/Walk (Los Angeles, CA)
Email AFTD's Grassroots Events Coordinator Bridget Graham at:
bgraham@theaftd.org to sign up for one of these events, or find out about ways to represent the AFTD-Team in YOUR community today!
Thanks to Our Supporters, the 2016 With Love Campaign was a Success!
This February's With Love campaign was the most successful yet. This year, community members provided $60,782 in donations, including more than $15,000 during one 48-hour period! We also released a special awareness video, titled "Who I Love", directed by a student-led team at Boston University. Currently, the video has more than 7,500 views, and you can watch it
here. We would like to say thank you,
with love, to all who made this year such a success: our two generous donors, Beth Walter and The Rainwater Charitable Foundation, who matched the first $20,000 raised; the 12 hosts who shared their love stories and raised funds through Givezooks; participants who shared "Who I Love;" Boston University; and everyone who made a donation.
Food for Thought 2016
This year's Food for Thought campaign will span two weeks, from September 25th through October 9th, 2016. The time to start planning is now! This year, we are targeting having all 50 states on the map with events planned by July 1! Sign up to host an event
here.
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Words of enCOURAGEment
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Pressing Forward In Life
By: Catherine S. Montgomery
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Catherine and her son, Peter.
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All through life, I have experienced new challenges and opportunities that I never would have searched out myself. One I did not expect was becoming a full-time caregiver to my husband of 54 years, Robb.
Until then, we shared the many responsibilities of life. Receiving the diagnosis of an illness with unknown and changing symptoms meant we were both facing an uncertain future.
It was apparent that I would soon be making difficult decisions for us both. That meant I had to let go of trying to provide medical care and carry-out household duties on my own and let others help when and how they could. Two years before his diagnosis was confirmed, Robb had made clear what his end-of-life wishes were. When we were confronted with his diagnosis in 2010, I had no idea how his preparation would end up becoming the blueprint to follow. This freed me to weather the silent and lonely hours, and the uncertainty of our future. I learned how to ask for help when perplexed about a problem, which resulted in a place of deep calm within me.
2012 proved to be one of several mountains of unexpected earthly sorrow and decisions for me and my family. It seemed that once we'd solve one, another was put in our path. FTD can take so many unexpected twists and turns in a person's health and behavior. Throughout those times of uncertainty, I was reminded of mountain climbers who link themselves together to reach the top of a summit. Each one depending on the other - the weaker person relying on the stronger to pull them up. There have been slips and slides and times when our "rope" gets frayed and we all stop, everything stops, until a fresh piece is added to the problem and then we can carry on.
In December 2012, Robb entered the Cornerstone Hospice of Lake/Sumter County in Florida. Their program and staff welcomed us and offered many avenues of help. Because I could spread my concerns over many experienced shoulders as I was trying to care for Robb, we gained the courage to face what lay ahead.
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AFTD's Network of Support
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AFTD Welcomes our Newly Affiliated Support Group Facilitators!
In order to provide the support our community needs, 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!
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Mark Allshouse
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Men's phone group |
| Carli Atkinson |
Albany, NY |
| Doris Booth |
Dallas, TX |
| Nancy Cummings |
Albany, NY |
| Ed Fitzgerald |
Fairfield Co., CT |
| Sylvia Gentry |
Philadelphia and western suburbs |
| Sandy Karger |
Philadelphia and western suburbs |
| Rona Klein |
Winston-Salem, NC |
| Paul Lester |
Raleigh/Cary, NC |
| Barbara Loewy |
Georgetown, TX |
| Carol Lovett |
Wilmington, DE |
| Sandra Lutz |
West Palm Beach, FL |
| Andrea Maga |
Ft. Collins, CO |
| Robin Mansfield |
Metro DC area |
| Phillip Myers |
San Francisco, CA |
| Deb Nash |
Mason City, IA |
| Shana Nissen |
San Antonio, TX |
| Angie Phelon |
Richmond, VA |
| Barbara Pickels |
Richmond, VA |
| Gary Radin |
Philadelphia, PA |
| Mary Revels |
Columbia, SC |
| Robin Riddle |
San Francisco, CA |
| Meghan Roscoe |
Farmington, CT |
| Elaine Rose |
Metro DC area |
| Marise Rowell |
Parents Phone group |
| Lorene Schlie |
Chicago area, Downers Grove, IL |
| Catherine Sharpsteen |
Salt Lake City, UT |
| Bonnie Shepherd |
Salt Lake City, UT |
| Tam Smith |
Kansas City, KS |
| Missey Toomey |
Ft. Collins, CO |
| Mary Anne Upham |
Tampa, FL |
| Doreen Putnam |
East Providence, RI |
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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