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Do you want to help raise FTD awareness in your community?
Join volunteers across the country in reaching out to residential facilities and sharing with them FTD information and AFTD resources. Contact your regional coordinator volunteer to learn more about how you can participate. |
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Issue: # 15 |
February 2014 |
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What's New |
AFTD's Education Conference and Annual Meeting:  AFTD's 2014 Education Conference and Annual Meeting will take place on March 14th at the Crowne Plaza in White Plains, NY. This informative day is for those affected with FTD, caregivers and health professionals. Online registration, the day's agenda, hotel information and sponsorship information is available on the conference page of AFTD's website. Dr. Edward Huey of Columbia University will be the clinical speaker, and Robert Bazell, formerly NBC's chief science and health correspondent, will give the keynote address. Reserve your spot today!
New AFTD Regional Coordinators:
AFTD welcomes two new regional coordinators, Ashley Linsmeier (South Atlantic Region) and Rachael Baffa (Southwest Region) to our volunteer leadership team. They both have been personally impacted by FTD and come with passion, professionalism and a dedication to support volunteers and to represent AFTD throughout their regions. AFTD looks forward to working and collaborating with them as we continue to advance volunteer efforts across the country.
Support Groups: 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 via [email protected], so we can share the information with others in your community. |
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Caregivers' Corner | |
Tool to Stay Socially Active
Staying socially active is the key to avoid feeling isolated and overwhelmed by the challenges of caring for a loved one with FTD. But behavioral symptoms of FTD, like impulsivity and disinhibition, can make participating in family or community events with someone diagnosed with FTD something to avoid rather than look forward to. In many cases, even half an hour for a cup of coffee with a friend is not an option, and going out on your own for any length of time requires finding someone else to stay at home with a loved one. When combined with the lack of awareness of FTD and the fact that the cognitive symptoms of the disease display no obvious physical signs to help alert people of a medical condition, the result is often a decision to just stay home.
However, o ftentimes the only thing that much of the general public needs is a little more information. AFTD has "Awareness Cards" formatted to fit on standard-size business cards that one can download from the website and print at home. There are double- or single-sided cards for caregivers and people diagnosed with either PPA or behavioral FTD. The cards are available in English and Spanish. They include a request for a bit of patience and understanding, a simple explanation of what is going on, and AFTD's website and toll-free number for more information. According to people who have used them, the cards make it easy to provide "strangers" with just enough information to allow them to be helpful and compassionate rather than offended or insulted. |
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Medical Momentum |
Induced Pluripotent Stem Cells (iPSCs) and FTD
Your donations at work!
AFTD's investment in a new technology called Induced Pluripotent Stem Cells (iPSCs) is paying off! Read below about creation of a repository of these cells for FTD research as well as how one AFTD Drug Discovery grantee has used these cells to generate exciting results about FTD/ALS.
What are iPS cells?
Adult human stem cells are quickly becoming an important research tool in neurological diseases. Fibroblast cells, obtained from an arm skin biopsy, are reprogrammed into pluripotent iPSCs, which means they can be induced to develop into different types of cells--liver, heart muscle, or whatever the scientist is researching. Neurons derived from iPSCs can then be used to compare normal and disease-specific cell lines. Academic laboratories and pharmaceutical companies are now very interested in working with these cells as a way to model human disease and potentially screen therapeutic drugs.
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Stem cells |
An FTD iPSC Consortium
At the recent NINDS sponsored "iPSC Consortia Meeting - Accelerating Discovery and Building Resources" held in Washington DC, January 22-23, 2014, the creation of the FTD iPSC Consortium was announced. FTD joins ALS, Huntington's and Parkinson's diseases as the focus of this project, which aims to create these disease-specific iPScells and make them available to scientists throughout the world at minimal cost. AFTD Scientific Director Dr. Nadine Tatton represented AFTD, a founding member of the iPSC Consortium, at the conference. Drs. Yadong Huang, UCSF-Gladstone Institute and Fen-Biao Gao, University of Massachusetts Medical School updated the group on the tau, progranulin and C9ORF72 lines that they have created from FTD patients' fibroblasts and will be submitting to the consortium repository.
Putting iPScells to work
At the same meeting Dr. Jeffrey Rothstein presented results from his work (supported by an AFTD Drug Discovery grant) creating and studying C9ORF72 stem cell lines. C9ORF72 is the most common mutation in familial ALS and FTD. Using these cells, Dr. Rothstein and his team have revealed how the mutation leads to death of the brain cell, knowledge which suggests that these iPScells may also hold potential as a new drug screening tool. Click here for an article on the topic. |
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The AFTD-Team | |
Current/Upcoming Events:
"With Love" Campaign 2014: AFTD's "With Love" campaign is in full swing...and YOU can be a part of it!  Create your own "With Love" fundraising appeal page and link it to ours, right on AFTD's Givezooks! fundraising site. Let's make Year #3 the biggest and best yet!
We are thrilled to announce that through the generous support of Beth Walter and the Rainwater Charitable Fund, the first $20,000 raised through the "With Love" campaign will be matched!
Tell your story...tell your family and friends why their gift to AFTD is so important...tell someone, who'll tell someone else about FTD. Tell them...with love.
Max's Catch-a-Thon - March 9, Bethesda, MD - Max Portnoy will host an afternoon of catch with friends in conjunction with his Bar Mitzvah in honor of his grandfather who is affected with FTD.
More information on grassroots fundraising can be found on our website...simply click here. |
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Words of enCOURAGEment | |
Five Steps to a Better Day
posted by Lon Kieffer
Lon Kieffer is an author, speaker, entertainer and self-proclaimed "Defender of Caregivers" (DOC). His website offers helpful tips and encouraging ideas to those caring for a loved one.
After collecting five helpful tips from professionals in various fields, Lon posted five steps for having a better day. To read the tips, visit Lon's website.
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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