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

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Quick Links
When Dementia is in the House
 
Dr. Tiffany Chow of Baycrest Ross Memory Clinic in Toronto and writer Katherine Nichols have teamed up to create a website to help children cope with a parent suffering from dementia.  The site has two segments: one for parents with tips on helping kids cope, and one for teens.

Click here to visit the When Dementia is in the House website. 
Request for Your Photos!
 
AFTD kindly requests pictures of our families, caregivers, patients and fundraisers!  Please send your high-resolution photos of you and your family to [email protected].  We're looking to feature some of our families and individuals in the upcoming annual report, our website, and future publications.  It's vitally important to put a face on FTD.  Please let us know the names of everyone in the photos and send them in .jpg format.  Many, many thanks! 
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Issue: # 3
February 2012
What's New
Penn Caregiver Conference: The University of Pennsylvania will host an FTD caregiver conference this Saturday, Feb. 4, 2012 from 8 a.m. - 5 p.m.  Conference details and a link to registration can be found here.

 

Northwestern Caregiver Conference: The Northewestern FTD and PPA Caregiver and Professional Education & Support Conference will be held on March 24, 2012 in Chicago, IL.  More details can be found AFTD's website.  Registration is open until March 1. 

 

AFTD Education Conference and Annual Meeting: AFTD's Education Conference and Annual Meeting will be held in Atlanta, GA on April 27, 2012.  The theme of the conference is "Charting a Course for Care and the Cure."  In partnership with Emory University, AFTD presents a day dedicated to the patients, families, and professionals who comprise our growing community. Dr. William Hu of Emory will be the Clinical Speaker, and CNN's Sr. Managing Medical Editor Tim Langmaid will give the Keynote Address.  

Join us!  Register for the conference and reduced-rate hotel rooms.

Do you work for or have contacts at a company based in Atlanta?  We are looking for corporate sponsors as well as individual sponsors for the conference to help keep the conference free for attendees. 

New FTD Caregiver Support Groups have recently been formed in Gainesville, FL; Dallas, TX and Annandale, VA--the first support group in the state of Virginia. 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, so we can share the information with others in your community.
Caregivers' Corner 

FTD and Potential Tax Relief

 

Every state government in the U.S. administers some type of Property Tax Relief Program to help protect people at risk of losing their home or residence because they cannot afford to pay property taxes. State and local governments throughout the U.S. use revenue from property taxes to pay for the services they provide, such as public education, law enforcement and emergency services, and maintaining public infrastructure such as streets and buildings. The quality of these public services is often reflected in the value of local residential properties, which directly influences the amount owners must pay to state and municipal governments in property taxes. However, residential properties do not generate personal income for the owner regardless of its value. When residential property values increase beyond what personal income allows owners to pay in property taxes, people are at risk of losing their home, and rental prices become unaffordable. This is particularlyhouse $ true for people with a low or fixed income, such as retirees and the disabled.

 

Every state in the U.S. offers a Property Tax Relief program to address this problem, and many states have multiple programs designed for a variety of needs. The rules and regulations of each program are set by state law and implemented by the local government agency administering the program. In some states, eligibility is determined solely by the ratio of income to property tax burden. Other states restrict participation to those who have reached retirement age or are unable to work due to a disability. The majority of programs are only for owners, though a few states make them available to renters as well. Some programs offer a complete exemption from property taxes while others set an upper limit on the amount that can be exempted or freeze the tax rate at a lower level regardless of increases in property values. Many states call these programs "property tax relief" or something along those lines, but they also often are  referred to as "homestead exemptions." To learn more about what property tax relief may be available where you live, contact the taxation or revenue department in your state. Please visit this website to get started: http://taxation.lawyers.com/income-tax/State-Revenue-and-Taxation-Department-Websites.html

  

Sheri RouseSpecial thanks to Sheri T. Rouse, an attorney at The Martin Law Group, LLC, ERISA Case Lawyers in Tuscaloosa, Alabama handling employee benefit claims for employees nationwide.  She shared the topic of property tax relief with AFTD.  Her husband was diagnosed with FTD in 2010 at the age of 43.  Additional information can be found at her website: www.erisacase.com

Medical Momentum

New FTD-specific Clinical Tests Ready to Launch 

 

In December, more than 60 clinical researchers from across the U.S. and Canada traveled to Las Vegas to participate in a training course for the new standardized FTD-specific testing that will be available soon for any of the National Institutes of Aging (NIA) Alzheimer's Disease Centers--a network of 30 centers throughout the U.S. The new module is designed to evaluate in a standardized way the various unique aspects of FTD and primary progressive aphasia, and may be administered in addition to standard dementia testing if FTD is suspected. The data collected from the different participating centers will be stored in a centralized database where it can be used to help investigators better understand all facets of the disease. This initiative, launched in collaboration with the NIA and the National Institute of Neurological Disorders and Stroke (NINDS), was first planned at a meeting funded by NINDS and AFTD, and the module itself is the result of more than two years collaboration on the part of clinicians from across the U.S. and Canada.

The AFTD-Team

Yeah...We're here to Fight This Disease.

 

It's not too late to help us celebrate Valentine's Day!  AFTD's "With Love" campaign is off to a great start, but there is plenty ofwith love logo room for more "With Love" letters.  If you're feeling adventurous, feel free to create your own to share with your family and friends.  Or maybe just send the link to our main "With Love" pageA generous donation has been made in honor of Alice Guiney, a friend to many who is currently suffering from FTD. To honor Alice at Valentine's Day, the donor has agreed to match donations up to $5000 in support of AFTD's "With Love" Campaign 2012.  Show a little love, send your donations to AFTD now, and Alice's donor will match up to $5000!  Your support is very much appreciated.

 

In other exciting "AFTD-Team" news...we currently have two walk/run fundraisers benefitting AFTD scheduled for May 20!  We encourage anyone in the Philadelphia or Baltimore-D.C. area to join us in one of these walks/runs.  The staff and friends of AFTD are raising money for the organization in King of Prussia, while the 3rd Annual Scoot for Scooter event will take place near Frederick, MD.  Send an email to [email protected] for more information on either of these events. 

 

Also, check out the RunningintheUSA website for your area.  There may be a walk/run that is happening in your area where you can raise money for AFTD, too!  

 

More information on grassroots fundraising can be found on our website...simply click here.

Words of enCOURAGEment

From Beverly Martling

 

I quit my full-time job in 2003 to care for my husband Ron, who was diagnosed with semantic dementia.  It was a long struggle for both of us.   He was going through the indignities of having his truck and driver's license taken from him when he was still cognizant of what was happening, and I faced a total role reversal in our marriage.  I am a natural born follower.  He was the innovator and planner of all things in our marriage, his business and beyond.  Ron passed on October 21, 2011.  Now...at the end of our long journey,  I can tell you this: I am a much stronger and better person than I ever would have thought possible.   

 

In the final years, he was totally dependent on me--unable to talk, feed or bathe himself.  I thought incontinence would be a deal breaker for me, but three years later, it was not.   I was certain of one thing: I wanted to keep him at home and give him as much

dignity as any human could have...with the caveat being as long as it wouldn't cause either of us any harm. 

 

Ron and Bev Martling
Beverly & Ron Martling

At my worst, I was a sane person living in a demented man's world.  At my best, I considered it an honor to help him in his transition to his next journey.  His language, reasoning, and logic left him many years ago.  When the end did come, I was ready to face it, not wanting him to suffer any longer.  I was ready as anyone could be in parting with the love of their life.  Sad as that realization was, I felt blessed to have been able to keep him at home with me.  What comforts me now is knowing that my husband is no longer shackled to a mind and body that failed him.   

 

To each of you who is just beginning your journey with FTD, please know you can do this...that you are strong.   Accept help when it is offered and ask for it when it isn't.  Remember, you are not alone...there are many wonderful people out there waiting to help.  And you have more strength than you know. 

 

If you have Words of enCOURAGEment that you would like to share in upcoming issues of The Gateway, please email them to [email protected] with "words of encouragement" in the subject line.

 

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