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Are you looking for a fun and easy way to help raise FTD and AFTD awareness in your community? Is there a free, local health fair or community event taking place this summer in your area? Find out what is happening in your community and sign up to have an AFTD table to share information about FTD and AFTD. Then, contact your regional coordinator volunteer and they will help to make sure you have materials to distribute.
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What's New
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Spread the Word!
FTD Awareness Week is October 5-12
 It's that time again! FTD Awareness Week is October 5th- 12th, and AFTD is asking our supporters across the country to step up and host an awareness event in their town. Food for Thought events can be bake sales, benefit nights at local restaurants, inviting friends and family over for dinner or any other creative ideas you can cook up! It just has to involve food and FTD education. Our goal is to have at least one event in every state and garner some major media attention to spread awareness across the country!
For more information, visit the Food for Thought page on AFTD's website and fill out the FFT Contact Form to get started! A Food for Thought liaison volunteer will contact you to help out along the way.
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Caregivers' Corner
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Why Does He Act Like That? - Aggressive Behavior in FTD
Because many individuals with frontotemporal degeneration (FTD) are not aware of their illness, they may become frustrated at limitations or constraints that they do not understand and consider to be unfair. Aggression may include shouting, name-calling or physical abuse actions such as hitting, pushing, biting, pinching, scratching or grabbing. Intervening actively with aggressive behavior is critical. A management approach that ensures the safety of the person with FTD and family and/or program staff requires an understanding of the disease and careful planning.
Stay out of the person's way if they are combative; and never point out the problem to the person, try to reason about the behavior, or argue about the 'logical' solution. Collaborate closely with the physician and care team members to develop and implement a highly individualized plan to promote the well-being of all involved. The Spring Partners in FTD Care issue addresses aggressive behavior. Download What to Do About Aggressive Behavior or read the case study and other topics from AFTD's website.
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Medical Momentum
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We Need Your Help!
If you are a person diagnosed with FTD, or a primary caregiver/former caregiver/family member of someone with FTD, please answer this anonymous short survey (2-question). Your answers will help AFTD advocate with the FDA and other public policy and healthcare providers for clinical trials, research and services that are informed by the patients' and families' perspective.
FTD Clinical Trials Currently Recruiting
Columbia University Medical Center in New York is conducting a natural history study to identify the earliest signs of FTD in families with a mutation in the tau gene.
The TauRx trial, testing the new drug TRX0237, is being conducted at 24 sites across the US, 22 of which are currently recruiting. To see the list of study locations indetified by city, medical center and principal investigator, visit TauRx bvFTD study sites on clinicaltrials.gov.
For more information on both of these studies and more, go to www.theaftd.org and click on Life with FTD--- Participate in Research.
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The AFTD-Team
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Current/Upcoming Events:
A Nice Day for a Hike - Brandon and Katherine are hiking the 2200 mile Appalachian Trial in memory of Brandon's dad, who had FTD. They are currently in Virginia, and hope to reach Maine by October. To follow along on their journey, visit their blog.
Help Josh Find a Cure for FTD - On Friday, July 25th, at Ruffled Feathers Golf Club in Lemont, IL, friends and family of Josh Pierce will host the 2nd Annual Josh for the Cure Golf Outing. For more information and to register, visit the event website.
9th Annual George F. Sidoris Memorial Golf Outing - The Sidoris family is holding their 9th annual golf outing in memory of George F. Sidoris on July 26th at Lost Nation Golf Course in Willoughby, OH. Visit the event website for more information.
More information on grassroots fundraising can be found on our website...simply click here. |
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Words of enCOURAGEment
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My husband Ken was diagnosed with FTD in January 2012, but that was after he totaled our van. Our FTD journey has taken many twists and turns, much like a labyrinth. Through it all I've tried to remember three things that keep me going....patience, humor and being pro-active.
The diagnosis itself was a relief. We finally had an answer to his odd behavior and I could cancel my appointment with the divorce attorney. Being pro-active has been extremely important to me! I hit the ground running once we had a diagnosis. I knew that caregivers would get tired and burnt out, so I decided to do as much as I could before my energy got zapped. I networked with the senior service community; had our wills, power of attorney, and health care proxy updated. I booked his bucket list trips before he was unable to travel so that we had new memories. I changed locks, updated accounts, bought a "safe return" bracelet, and joined a support group. I was ready! But so was he. That's where the humor and patience took over. I married a man with a great sense of humor and we were still able to laugh when we talked about how he got a rare disease, even though he wasn't that special.
 | | Rona and Ken at Disney World |
We sing songs in the car and dance in our kitchen. I call him Ken 2.0 and he laughs. I have more patience for "2.0" than I ever did for the original version, but without our sense of humor, patience with each other and "taking care of business" I would have been lost a long time ago on this journey. We still take safari trips from his
bucket list, but they are only to Disney World now. The ten hour drive to the park from North Carolina doesn't seem as long as it sounds because we laugh and listen to music. He hardly talks now, but he sings a song when he knows it in his raspy voice, and he smiles the whole time we are at the park, even though he is in a wheel chair when we go now. The smiles on our faces are not phony and we are making it through together. The "cast members" at the parks know us now because we are there so often. It is one of the last things he enjoys and I will keep taking him as long as we are able to go because it really is "the happiest place on earth" and who doesn't deserve happy, even with FTD. - Rona Klein, FTD caregiver
If you have words of enCOURAGEment that you would like to share in an upcoming issue of the Gateway, please email them to [email protected].
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