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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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 Volunteer Program Logo Contest

 

Are you creative? Are you a graphic designer? Do you recognize the importance of volunteers and the impact they can make? If so, then why not put your skills and passion to the test and enter AFTD's Logo Contest. We are looking for an inventive logo that captures the essence of the volunteer program. To learn more, go to the contest page of AFTD's website. The deadline is July 1st.

 

Issue: # 10
April 2013
What's New

Managing a New Diagnosis: AFTD has a new publication called NewlyDxCover "The Doctor Thinks it's FTD. Now What? A Guide for Managing A New Diagnosis."  This booklet helps individuals and families take a strategic approach to a diagnosis of FTD.  It reflects the cumulative experience of thousands of individuals and families who have faced FTD and the professionals who work with them.  It can be downloaded from the website or hardcopies ordered via [email protected].

 

Telephone Support Group for People with FTD: AFTD is developing a pilot project to explore support for people diagnosed with FTD.  The group will be limited to 6-7 people who are interested in sharing mutual support.  It will meet monthly via toll-free conference call.  For more information contact [email protected].

 

New Support Groups: A new FTD support group has begun in West Palm Beach, FL.  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 

Resources You Can Trust

 

AFTD's mission spans both "Care and Cure" with equal attention to research for the future and the needs of people affected today. The Association offers an array of resources to help families understand FTD and provide loving care.   If you are not familiar with these core services, check them out today:

 

AFTD's Website - Log on to www.theaftd.org to find a wealth of information about the subtypes of FTD, care management issues, options for support and more.

 

AFTD's HelpLine - Contact us by phone or email with questions.  Staff will provide individualized, accurate, and timely responses.  Contact the HelpLine at [email protected] or 866-507-7222.


Caregiver Respite Grants - Full-time family caregivers may be eligible to receive a $500 grant annually to defray the cost of respite care.  You decide what type of service fits your needs.  Download the application here.

 

Support - Sharing support with other FTD caregivers can be a lifeline.  AFTD will help you to find a vehicle for support that fits your style and need from face-to-face FTD groups, phone groups, online options and informal individual caregiver connections.  Visit the resources page of the website or contact the HelpLine.

Medical Momentum

M. Catarina Silva, Ph.D. wins AFTD Postdoctoral Fellowship

 

A committee of AFTD's Medical Advisory Council members has awarded the 2013 - 2015 AFTD Postdoctoral Fellowship to M. Catarina Silva, Ph.D., a molecular biologist training in the lab of Stephen Haggarty, Ph.D., at Massachusetts General Hospital (MGH), Department of Neurology, Harvard Medical School.   Dr. Silva emerged at the top of a very competitive field of 18 applicants who vied for the award.

MC Silva
Dr. M. Catarina Silva


Dr. Silva will be working with skin cells from an actual FTD patient and transforming them into induced Pluripotent Stem (iPS) cells, which can be grown in the lab and differentiated into patient-specific neurons, then used as powerful cellular models of the disease. With experience studying neurodegeneration in other model systems, she is particularly excited to be collaborating with clinical colleagues at MGH who are working with FTD patients. Dr. Silva will use these cells to help address fundamental questions about the underlying disease process in FTD. This includes understanding how mutant tau protein accumulates in the brain of patients and identifying risk factors and early events at the molecular and cellular levels that precede late onset symptoms. This strategy hopefully will point the way to potential diagnostic tools and preventive measures. This patient-derived cellular model will also allow testing of new small-molecule probes that revert or prevent protein tau-associated toxicity, with the potential for the discovery of new targets and leads for therapeutic development. 

 

The AFTD-Team

Introducing--Food for Thought!  

 

Food for Thought is a grassroots fundraising and awareness-raising campaign designed to rally as many supporters of AFTD as possible during the first week of October across the U.S. and Canada.  Our collective effort to raise awareness will hopefully draw the media's attention and garner some great press for FTD. Food for Thought Logo


This campaign seeks to make a few more people aware of FTD while involving some food/drink and a little education.  Event hosts can have a dinner in their home, hold a bake/cider sale or engage a restaurant local to them to have a "Food for Thought" night out at their establishment. 

 

AFTD is also seeking Food for Thought volunteer liaisons to walk event hosts through the process and answer any questions they may have about setting up their event.  So...are you hungry enough to take a bite out of FTD?  Ready to join people from Connecticut to California to Calgary who will share a meal and provide some FTD education with their friends and family (and hopefully the media)?  If so, we want to hear from you!  Check out the Food for Thought page on AFTD's website, complete with a 13-page toolkit for your planning ease.  If you would like to sign up to host an event, please fill out our online form to register your event with AFTD.  Together, we'll Fight This Disease!

 

Other AFTD-Team Events:

  • May 19: King of Prussia 10-Miler/5K Run & Walk - AFTD Staff will participate in this event in Philadelphia and encourage other local families to join us!  Don't live near Philly?  Visit www.runningintheusa.com to find an event in your area and host your own local team for AFTD!  Let us know about your plans, and AFTD will be glad to help publicize your efforts and recruit team members. 
     

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

 Words of enCOURAGEment

Filling the Hours--An Attitude Change Occured 

by Catherine Montgomery  
  
Today as I was going through a large file cabinet, I kept finding old letters, articles, pictures and other memorabilia.

Finding so many things of interest slowed my progress in sorting. I was trying to eliminate what I thought was no longer useful to our new way of living.  Then I began to realize I was on a time travel. This changed my whole purging purpose. Now, I thought, this will help me to become better organized so that others can review the history of our family. A-ha! A project with a purpose made all the difference in my attitude.
Robb Montgomery
Dr. Robb Montgomery on his 79th birthday--March 2013

Caregiving for my husband has taken many different twists and turns. My presence at home is more important to his well being than in earlier months after the diagnosis of FTD. As he has changed, so have I. He can no longer speak, so we have learned new ways of communication. He can no longer walk, so now I am the power behind the wheelchair. I pray for contentment on my part  as we no longer "go out." We both have always enjoyed interacting with neighbors and friends. We used to go to them, now they come to us. My many personal interests and usual activities are in a holding pattern. Accepting this has not been without difficulty, but I have come to be content.

So, my fellow travelers on this journey...another  attitude change has occurred.  I encourage you to adjust to changes as they occur with prayer and let your family and close friends know what is going on. As for my husband, it will be a continuing watch for new signs of changes in what he cannot do. In my searching through the files today, I found a poem that tells my story of what I can do with Robb.
  

SHARING

As on our way we go,
There isn't much that I can do
But I can share my bread with you
And I can share my joy with you
And sometimes share a sorrow, too.

As on our way we go,
There isn't much that I can do
But I can share my hopes with you
And I can share my fears with you
And sometimes share some tears.

As on our way we go,
There isn't much that I can do
But I can share my friends with you
And I can share my life with you
And of-times share a prayer with you.

As on our way we go.

--Author unknown
  

 

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