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Issue: # 14 |
December 2013 |
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Give to AFTD This Holiday Season!
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"After calling your HelpLine, I feel like I am going to be better prepared for what I have ahead of me. Thank you for taking your time to educate, support and listen to me."
-- an FTD caregiver
For the past 11 years, AFTD has been the most comprehensive source of information and support for FTD caregivers, providing information, recommendations for medical professionals well-versed in FTD and a much needed sense of community for people dealing with a disease that can often leave them feeling isolated and lonely. This holiday season, please help AFTD to continue to provide these services, as well as educate the medical professionals caring for people with FTD. Help us to increase public awareness and understanding, and fund the research that will lead to treatment and ultimately a cure for FTD.
Please make your contribution today.
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What's New |
The McKeown Foundation Contributes to Caregiver Respite Program:
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Mike Chain, AFTD Executive Director Susan Dickinson and Joe McKeown |
The McKeown Foundation made a generous gift of $10,000 to AFTD for caregiver respite on November 19th. This is the third gift from the McKeown Foundation in support of this valuable program. The Association is grateful for the gift and looks forward to continuing the support of those who care for loved ones affected by FTD. For more information on how to apply for a Comstock Caregiver Respite Grant, click here.
New Support Groups: Two new FTD support groups have begun in Bayshore, NY and Salt Lake City, UT. Follow these links to AFTD's map of the United States and Canada and click on your region to find clinical centers, support groups and FTD-related events in your area. Know of a resource that is not listed there? Please let us know via info@theaftd.org, so we can share the information with others in your community. AFTD's Education Conference and Annual Meeting: Mark your calendars! AFTD's 2014 Education Conference and Annual Meeting will take place on March 14th at the Crowne Plaza in White Plains, NY. Online registration with AFTD will be up and running on the conference page in mid-December...so check back to reserve your spot at this informative day for those affected with FTD, caregivers and health professionals. |
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Caregivers' Corner
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Adjust and Enjoy the Holidays
"I am lowering the expectations of myself and letting people know to expect less of me," says Howard Glick in his FTD/Dementia Support Blog. "If you get one good hour at a holiday situation, that's a good thing. Enjoy the moment."
Howard, who himself is diagnosed with FTD, shares his strategies for how people with FTD can enjoy the holidays.
* Find a quiet escape. "Usually an hour or two is all I can take of the noise, smiles, overstimulation and holiday cheer before I start unraveling. I always make sure there's a quiet room I can escape to and lay down for however long it takes. People know I have FTD, and it's never a problem finding a safe room. I'm happy to be around friends, and it doesn't matter if I miss the meal."
* Contribute any way you can. "If you have FTD and can no longer cook or do everything you used to do, it's okay. We all want to feel useful and a part of something. Whether it's walking the dog or taking the dishes off the table, there will be a way to contribute. We have a tendency to beat ourselves up. It's the disease, not us. Be useful and don't mourn about what you can't do, find something you can do."
Howard encourages people to enjoy the holidays for "what they are now and don't push yourself--whether you are a caregiver or patient--to make it like past years. A couple of great hours is better than despair. Make the best of every moment."
Happy Holidays!
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Medical Momentum |
International Conferences Spotlight FTD
AFTD co-sponsored two important research conferences this November. The 8th Brain Research Conference: RNA Metabolism in Neurological Diseases was organized by Elsevier Publications in San Diego as a prelude to the annual Society for Neuroscience conference. This symposium was chaired by Fen-Biao Gao, University of Massachusetts Medical School and former AFTD Pilot Grant awardee Paul Taylor, St. Jude's Children's Research Hospital. Research scientists from 23 countries participated and shared the latest in cutting edge research into RNA biology and how it impacts diseases like FTD, ALS, Alzheimer's and more. This meeting brought about a truly international exchange of ideas and allowed scientists to share insights across neurological diseases. AFTD also lent its support to a historic clinical research meeting in San Francisco: Establishing Therapeutic Efficacy in Familial Frontotempora  l Degeneration. Adam Boxer of UCSF Memory and Aging Center was the meeting organizer. Clinicians from 21 countries participated, sharing their data with the goal of building an international network of familial FTD cohorts for clinical trials. Ten short years ago, patients and caregivers could only hope for a diagnosis and the chance to put a name to their illness. Now the FTD research community is discovering commonalities in the underlying biology of brain diseases and meeting to create action plans to forge an international network for future clinical trials. This is a huge step forward, due to an energized, committed network of patients, caregivers, volunteers, donors, clinicians and scientists. |
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The AFTD-Team
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Upcoming Events:
"With Love" Campaign 2014: This Valentine's Day, AFTD asks you to be part of our third annual "With Love" campaign.  Create your own "With Love" fundraising appeal page and link it to ours, right on AFTD's Givezooks! fundraising site. Let's make Year #3 the biggest and best yet!
We are also looking for people to match the gifts made through the With Love campaign. If you or someone you know would like to make a matching gift to fuel this campaign, please email pmcgonigle@theaftd.org or call 267.514.7221.
Tell your story...tell your family and friends why their gift to AFTD is so important...tell someone, who'll tell someone else about FTD. Tell them...with love.
More information on grassroots fundraising can be found on our website...simply click here.
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Words of enCOURAGEment | |
Frontotemporal Dementia Sucks
by Robin Albright
My name is Robin Albright. I'm a Visual Corporate & Life Coach and a speaker. I coach employees and individuals on topics such as fulfillment (for instance - Be Your Own Super Hero) and goal setting. I own a company called Zinger Zanger, Inc. and have been doing this since 2008. The reason I'm sharing my profession with you is because I spend time helping others choose perspectives that help them shift out of feeling trapped and frustrated. But last year, I felt both in the biggest way EVER.
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Robin Albright |
For the first half of 2012, my husband Dave, fought what we thought was low testosterone, depression and what I assumed was a big horrible case of mid-life crisis. He acted weird on so many levels. This all began "officially" in February, but now that I understand FTD, I can see signs and symptoms back a few years.
If you have words of enCOURAGEment that you would like to share in an upcoming issue of the Gateway, please email them to amaher@theaftd.org. |
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