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Connecting at an FTD Education Conference

"Awareness is the surest way to eventually beat this disease," said Marc Toles, a caregiver from Indiana.  "FTD educational conferences give us the biggest bang for our buck with regard to building that awareness."  Marc attended last year's Northwestern University's FTD and PPA conference and spoke on a panel at this year's event on March 24th.  

One can feel the synergy build when patients, families and experts come together at an education conference on frontotemporal degeneration (FTD).  Participants become immersed in information and are surrounded by people who understand.    

 
FTD is a very isolating disease.  Breaking through that isolation so people can find the support and resources they need is priority # 1 for AFTD.  The Association sponsors and participates in a number of FTD education conferences each year hosted by medical centers, organizations and even well-oiled support groups.

Northwestern FTD/PPA Conference 2012

More than 500 patients, caregivers and professionals have attended FTD conferences already this year in Philadelphia and Chicago.  Upcoming opportunities include AFTD's Education Conference and Annual Meeting in Atlanta April 27 and one hosted by UNC/Alzheimer's NC in Raleigh this summer.   Watch the Conferences page of AFTD's website and connect with others at an FTD education event. 

Paving the Way for Trials to Come

As we learn more and more about the biological causes of FTD, the ground work is being laid for testing new therapeutics.  Developing a new disease treatment is an expensive, complex and time-consuming activity-anything we can do to expedite this process for FTD drug development will increase our chances of having effective therapies for this disease in the near term.  With this goal in mind, AFTD is helping to plan and co-sponsor a meeting called "Clinical Development in Frontotemporal Degeneration," which will take place in June in Washington, DC.  Close to 100 scientists from academia, industry and the government are expected to come together to take stock of past FTD clinical trials and determine what's needed to for future trials that will pass muster with the Food and Drug Administration.

The meeting is an official workshop of the NIH's National Institute for Neurological Disorders and Stroke and is co-sponsored by AFTD through our "Frontotemporal Degeneration Study Group" (FTSG).  Other contributing sponsors include the Bluefield Project and various biotechnology and pharmaceutical companies interested in developing drugs for this disease.  Many members of the FTSG and AFTD's Medical Advisory Council are scheduled to speak on topics like what "outcomes" or measurements we should use to tell if a drug is effective, whether we can identify enough people with specific subtypes of FTD to test very targeted therapies and how to deal with the variability in symptoms and progression of people participating in trials. 

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

May is shaping up to be an exciting month here at AFTD...and possibly in your backyard, too!

There are seven--that's right SEVEN--grassroots fundraising events happening in the month of May that benefit AFTD!  We're grateful for the initiative of these "AFTD-Team" members to raise awareness of FTD while also raising money for care and a cure for FTD.  Here's what will be happening in May:

May 6 - Brendan Hermes & Joseph Ciccione - 1/2 marathon in NJ

May 7 - Walter Family - 5th Quest for the Cure Golf Outing in CA

May 12 - Alice & Arpy Saunders - Marathon in RI

May 19 - Jessica & Eric Harder - 50-mile walk in NJ & NY

May 20 - The Scaggs Family - Scoot for Scooter in MD

May 20 - Nicole Greenway - Rite Aid Cleveland 1/2 Marathon

May 20 - AFTD Staff & Friends - 10-mile/5K walk & run in PA
 

Send an email to amaher@theaftd.org for more information on any 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.

From Catherine Montgomery 

Finding Companionship in a Silent World

The hours when there is no communication between my husband and me make me wonder if this is what it is like to live with a deaf person.  Robb, however, is not deaf.  He has FTD--Frontotemporal Degeneration--a dementia that that has taken away his ability to converse.  I call it living in a vacuum.  As the dementia has progressed, one by one, the many and varied interests of his have dropped out of his memory.  The creative gifts have also disappeared.  First the gift of surgical talent was stilled, and then it was his ability to design and create stained glass pieces.  All memory of that artistic era has disappeared. He used to be full of ideas and had opinions about many subjects.  Now I guide him through the day with a simple routine of sleeping, waking, eating and dispensing medicines. We do watch TV, and he chooses music to play on a small DVD/CD player.  The one outdoor activity, which marks each day, is feeding the birds.  He no longer can tell me the names of the birds or identify the calls as he used to do.  There is one thing he can do well and that is to beat me at Gin.  We slowly play several hands after dinner, and he continually outplays me.

Recently Robb was asked, "How did you decide to become a podiatrist?" Unable to recall his decision, he looked to me to answer the question.  Listening to me as I related the events, which led to a discussion of his life's work, it was as if he were hearing it for the first time...like it was a story about someone else.

Catherine Montgomery

As I do not see the situation improving in Robb's condition, I must make a friend of the silence. There have been times as a young mother, raising six children, when I would have welcomed some quiet.  Little did I know how a day without sociable conversation would make me work to keep engaged with the world around me...trying to interpret what Robb struggles to say takes all my concentration and sometimes we just give up.

I am really glad that there are activities that I can do to fill the hours of quiet.  It has allowed me to take a renewed interest in planning and preparing meals, to write to family and friends, and to begin painting once more. We have family and friends who come to visit, and even though Robb does not contribute to the conversation, he is a part of the group.

As our children come to visit us, Robb no longer struggles to keep back tears when they leave.  The first time this happened I asked him, "You don't think you will see them again, do you?"  He nodded yes.  Then we both cried.  Tears are really helpful, and we do not hold them back.  One of the precious moments we share now is tears.  I would never have expected this to have the meaning it does.

I share these various ways I can help my beloved husband with the hope that I may help someone else who will walk along the same path. 

--an exerpt from Memory is a Fragile Thing - Reflections of my life experiences from childhood to the present. ©

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