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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
Caregiver Study in San Francisco
Family caregivers interested in a research study aimed at improving caregiver quality of life can contact Judy Mastick, RN, Study Coordinator or Jennifer Merrilees, RN, Ph.D. in the Department of Physiological Nursing at University of California, San Francisco at 415-476-5503 or [email protected].
More details can be found on AFTD's website.
CME Course at Columbia University on Dec. 12
Tell your physician or neurologist about the opportunity to attend a one-day course at Colmbia University on December 12, 2011.  The course, Is It Alzheimer's Disease or Frontotemporal Degeneration? An Update on Diagnosis, Management and Research, is co-sponsored by Columbia University and AFTD.  Click here for complete details and registration.
Issue: # 1
October 2011
Welcome to The Gateway! 

Welcome to the first issue of The Gateway, AFTD's new e-newsletter designed specifically for caregivers!  We hope you will find this bi-monthly publication to be a valuable source of information and support. 

Our fundamental goal in all we do at AFTD is to create a community so that you know you are not alone. As frustrating, painful and Susan - headshotisolating as this journey can be, there are other people who are living the same reality-and still more who have survived it.  These people are available to you, through the growing number of caregiver support groups springing up across the US and Canada, through the one-on-one caregiver connections AFTD offers, through the "words of enCOURAGEment" that will be published in every issue of The Gateway. Our community's strength comes from the generosity and commitment of individuals working together to support each other. We are here to help you, and welcome your engagement in building a community that makes a difference. With your help, AFTD is Opening the gateway to help and a cure.
Susan's Signature
Susan L-J Dickinson, M.S.
Executive Director
The Association for Frontotemporal Degeneration
What's New
William SeeleyAFTD congratulates William Seeley, M.D., Ph.D. of the UCSF Memory and Aging Center on winning a 2011 MacArthur Fellowship "Genius Award" for his research on FTD.  Follow this link to watch a short video in which Dr. Seeley speaks about his research on the role von Economo neurons may play in the development of FTD.

A new initiative sponsored by AFTD provides tools and information to educate professional staff at long-term, assisted living, or day care facilities about FTD and how best to meet the challenges of their clients who are diagnosed with one of the FTD disorders.  Learn more about Partners in FTD Care, which consists of an introductory packet, a quarterly e-newsletter which presents patient scenarios, and an interactive online forum coming in 2012 on which staff can communicate with professionals experienced in working with FTD patients.

New FTD Caregiver Support Groups have recently been formed in Atlanta, GA; Dallas, TX; Melbourne, FL; Pittsburgh, PA; Twin Cities area, MN and Albuquerque, NM. 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 Awareness Cards


In an effort to help our patients and caregivers when in public settings, AFTD has created two sets of "awareness cards"--one for caregivers and one for patients--to present as situations warrant.
These cards let customer service people (wait staff, receptionists, etc.) know that language and behavior may be an uncontrollable
issue for an FTD patient.  The cards are available for download and use as appropriate.  They are set up in business-card-size format for conveniently carrying in a wallet.

Medical Momentum

Breaking News: Researchers find key mutation that causes FTD and ALS


Rosa Rademakers
Dr. Rosa Rademakers
In a landmark paper published in the online journal Neuron, a group of researchers report successful identification of a long-sought mutation that can cause both FTD and ALS. Found in a non-coding region of chromosome 9, this is by far the most common mutation for familial FTD and/or ALS discovered to date.  AFTD MAC member Rosa Rademakers, Ph.D., led one of the teams that made this discovery.  Also authors on her paper were five other MAC members and AFTD Postdoctoral Fellow Alexandra Nicholon, Ph.D. This is a major breakthough for FTD research.


The AFTD-Team

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


For families and friends of someone with FTD, raising awareness and funds for the disease may seem like a lonely task, since many people have never heard of FTD.  In an effort to create a sense of community among grassroots fundraisers all across the United States and Canada, AFTD has formed The AFTD-Team. AFTD Team logo


The AFTD-Team is comprised of every grassroots fundraiser, organizer and participant who steps up to raise awareness and funds for AFTD.  Fundraisers may be spread from Connecticut to California, but they are all driven by a common goal of funding research, care, treatment and ultimately a cure.  In addition, The AFTD-Team stands behind this declaration: Yeah...I'm here to Fight This Disease. 


To make fundraising efforts a bit easier, AFTD has designed The AFTD-Team fundraising toolkit.  It is 12 pages full of fundraising ideas; planning suggestions; a sample letter, thank you and press release; tips on handling expenses and donation information.  Fundraisers can download The AFTD-Team toolkit here


Upcoming issues of The Gateway will feature fundraising events happening around the country, thanks to members of The AFTD-Team.  More information on grassroots fundraising can be found on our website...simply click The AFTD-Team logo.

Words of enCOURAGEment

Suzanne KozloskieFrom Suzanne Kozloskie


Our kids were young when my husband was diagnosed, and I vowed that they would not lose both parents to this awful disease.  I made a concentrated effort to stay active, keep learning new and interesting things - sailing lessons, Indian cooking classes, knitting group. 

Twelve years into this, my husband is in a facility and I see so many other caregiving spouses who lost their identity while caregiving.  Fortunately, I hung on to 'me,' and I have been able to make the transition back into the real world.

Budget 'mental health' money for yourself - and use it!  Nobody likes a martyr.  Libraries, churches, recreation departments all have lots of cheap or free things going on.


AFTD offers Comstock Caregiver Respite Grants of up to $500 for full-time, unpaid caregivers to use in whatever ways that bring a bit of relief and rest to them.  For an application, click here.


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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