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

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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.
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Issue: # 2
December 2011
Danis Challenge Supports Caregiver Respite
This holiday season caregiver Lee Danis will match each donation designated to "Caregiver Respite" dollar for dollar up to $5,000.  Help us reach this goal by December 31st!
Two-and-a-half years ago, Lee's wife of 41 years, Susan, was diagnosed with FTD.  Lee understands first-hand the challenthe Danisesges that go along with being a caregiver and wants to do his part to lessen that burden for others.  "When Susan was diagnosed, our lives changed and we began the journey of living with this devastating disease.  As a caregiver, I know how great the demands of caring for someone you love."
The holidays are known as a time for giving and we ask that you, like Lee, support the caregiver respite program here at AFTD with your tax deductible contribution.  This matching gift opportunity will DOUBLE your donation to caregiver respite. Gifts can be made online here (make sure you specify caregiver respite under type of donation) or by sending your donation to AFTD.
Thank you in advance for joining Lee and Susan in making a difference in the lives of those affected by FTD.
What's New
Save the Date - Penn Caregiver Conference: The University of Pennsylvania will host an FTD caregiver conference on Saturday, Feb. 4, 2012 from 8 a.m. - 5 p.m.


Save the Date - AFTD Annual Meeting and Caregiver Conference: AFTD's Annual Meeting and Caregiver Conference will be held in Atlanta, GA on April 27, 2012.  Online registration will open early in the new year.
New FTD Caregiver Support Groups have recently been formed in Northern New Jersey (Hackettstown), San Antonio, TX and Reno, NV. 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 the Holidays


The winter holiday season offers time for families to be together. Sometimes caring for someone with FTD means time together is difficult rather than joyful. The following are some tips compiled from caregivers to help families enjoy the season in light of their current situation.  

Consider your loved one's current abilities and limitations, and adjust expectations accordingly. For example, invite your family member to assist in the holiday preparations but break large tasks into small manageable steps that he/she can accomplish. It might take a little longer, but it will enable him/her to participate and take part in the family traditions. Likewise, spend time with family and friends but set limits as needed on the number of people at one time or the duration of visits and according to what your family member can enjoy or tolerate.  

Search for a balance between maintaining your regular daily routine, including your loved one in seasonal traditions and celebrations as much as is possible and observing traditions that are important to you even if your loved one cannot participate. It may be painful to celebrate traditions without him/her, but creating a festive and positive environment can benefit everyone; so play your favorite holiday music and dance or sing along even if your family member can't join you. You can still build precious memories of this holiday season even if they are tinged with sadness.  


For many, the winter holidays are a celebration of love for family and friends. Caring for a loved one with FTD is year-round act of exactly what the holidays are all about, so grant yourself permission to be on the receiving end of the season's gift giving traditions -- you deserve it, and there is no better gift you can give to your family than caring for yourself. 

Medical Momentum

Research Focuses on Basic Mechanisms and Drug Development 


The month of November was a busy one for FTD research, with major meetings on conducting clinical trials, accelerating therapy development, and on the basic science of FTD.  Things kicked off November 5th in San Diego with the "Clinical Trials in Frontotemporal Dementia and Related Disorders" session at the annual Clinical Trials in Alzheimer's disease (AD) meeting.  The goal of this session was to convince both AD investigators and representatives of biotech and pharmaceutical companies in the audience that FTD is a good prospect for drug development.  The argument was made that much of the research done in FTD could be applicable to Alzheimer's but that the studies would be easier to conduct in FTD.  AFTD Medical Advisory Council members Ian Mackenzie, M.D., Howard Rosen, M.D., and David Knopman, M.D. were speakers along with Drug Discovery grantees Adam Boxer, M.D., Ph.D., and  William Hu, M.D., Ph.D. 

Following the session on clinical trials in FTD, the FTD Treatment Study Group (FTSG) held its fifth official meeting.  Composed of academic researchers, clinical investigators, industry representatives and funding organizations, this group meets regularly to share ideas and advance joint projects to accelerate the development of new treatments for FTD.

On November  10th and 11th, the 6th Brain Research Conference in Washington, DC focused on "RNA Binding Proteins in Neurological Disease," a topic that is very relevant to FTD.  Several of the proteins that have been found to be mutated or misformed in FTD (TDP-43, FUS and possibly the newly discovered C9ORF72 protein) have the ability to bind RNA, the intermediate step between genes and proteins.  TDP-43, FUS and C9ORF72 have also been linked to Lou Gehrig's disease or amyotrophic lateral sclerosis (ALS) and there were many ALS investigators at the sold-out conference.  As ALS and FTD investigators join force to study these common mechanisms behind two very different diseases the potential for developing new treatment approaches for both disorders also increases.

The AFTD-Team

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


One of the exciting additions to AFTD's fundraising tools is called Givezooks!, an online peer-to-peer fundraising platform.  Anyone who wishes to host a grassroots fundraiser can now create their own fundraising webpage, email their family and friends from the webpage, and collect donations online for their event.  It's a great, easy way to raise money for AFTD.  Creating a webpage takes about 15 minutes and AFTD staff is available to help.  Click here to access AFTD's Givezooks! page.


Help us celebrate Valentine's Day!  AFTD will host an online campaign called "AFTD's With Love with love logoCampaign 2012," where supporters can create a "With Love" fundraising page to tell their own FTD story and engage their circle of family and friends in supporting AFTD.  It will be a great way to celebrate Valentine's Day and honor loved ones.  The campaign will be introduced in mid-January, but in the meantime, be thinking about what your "With Love" letter would say.  


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 here.

Words of enCOURAGEment

From Valli Haines


I lost my husband, Tom, near the end of summer this year. As I reflect back now, I was thankful that I remembered to just be a wife to my husband now and again.  I had become a full-time caregiver, and sometimes I forgot to be a wife.


The week before Tom died, I took a day off and spent it with him. I had to plan ahead, but I was able to take him to a mall and go to his favorite place to eat. We had a nice afternoon together. Valli Haines


I had gotten so caught up in changing him, feeding him, cleaning up after him, etc. When I had a minute, I would try to get some sleep or do something for myself.  I needed that, but we needed to be a couple once in a while, too.  I'm so grateful that I took a day out of my schedule to just be with him.


So don't forget to be a couple...even if it's just going out to eat. Tom couldn't talk to me, but I could see that he enjoyed himself, and he had that look in his eyes that he loved me.


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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