Join Our List to Receive The Gateway!
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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 |
Wear This Shirt With Pride
Spread FTD awareness everywhere you go! These bright red t-shirts will grab attention and give you new opportunities to talk about FTD. You can order your AFTD t-shirt from the AFTD website. The t-shirts are 100% pre-shrunk cotton: comfortable and lasting. Click here to place your order today!
Your Gift Makes All the Difference
Frontotemporal degeneration is a challenging disease, and AFTD is working every day to support research that will improve treatment, care, and prevention. We encourage you to help us in these efforts by becoming a monthly donor through our new recurring gift program. It's the easiest way to give! Your scheduled donation helps form a predictable source of income AFTD can count on to support our mission to fight this disease. Set up a monthly gift today.
New AFTD Regional Coordinator Volunteers
AFTD welcomes three new regional coordinators to our volunteer leadership team. Dorian Bannister (from Maine) will be joining Katie Brandt in covering the New England region. Nancy Cummings (from New York) and Joanna Dauber (from Pennsylvania) will be teaming up to oversee the Middle Atlantic region together. All three come with enthusiasm, passion and a commitment to supporting volunteers and to representing AFTD throughout their regions. AFTD looks forward to working and collaborating with them as we continue to advance volunteer efforts across the country. To find your regional coordinator volunteer and to learn what is going on in your area, please go to the following link and click on your state:
http://www.theaftd.org/get-involved/regions |
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Caregivers' Corner | |
AFTD's On-line Resources are Expanding
Whether you want to learn more about FTD or find ways to live better with the disease, www.theaftd.org can help. AFTD has streamlined organization of the website and added several new sections. We continue to expand practical information for caregivers, people with FTD and healthcare professionals to make life a little bit easier.
Visit the new Hot Topics in Science for lay-language presentations on important aspects of FTD research. The first short biology class, "Disease in a Dish" describes in text and high quality images how induced pluripotent stem cells (iPSC) are used to study FTD and may help to speed drug development.
Life with FTD brings together resources for people facing a new diagnosis; learning about health care resources such as day programs, facility care or hospice; and for families with children or
teens at home. New in this section is I Have FTD, a selection of pages by and for the person diagnosed. People with FTD are encouraged to submit visual images or written pieces about their experience with the disease. These accounts are empowering for people with FTD and enlightening for others
Don't forget to visit www.AFTDKidsandTeens.org.This site invites children and teens to explore pages designed for them and connect with other kids who understand FTD. New stories and activities led by kids are added regularly. Meet this year's Food for Thought Youth Ambassadors!
The Event Archive in News and Events houses links to material from past AFTD conferences and webinar trainings. The full conference program is available including speakers' slides and handouts from breakout sessions. Here you will find a growing library of resources. |
| Medical Momentum | |
Check out AFTD on Twitter!
Are you following AFTD's Twitter feed, @AFTDCure? It's a great place to keep abreast of trending research, which we summarize in our "This Week in FTD" tweet sent out every Friday. We also tweet daily on other FTD topics, healthy living, and relevant healthcare news, as well as follow our friends in the FTD and neurological diseases community. |
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The AFTD-Team | |
Food for Thought
AFTD's second annual Food for Thought campaign is off and running with 26 states represented so far! We're more than half way there! AFTD's goal is to have at least one event in every state, the state with the most events gets a feature on the AFTD website for an entire year!
If your state is not represented, or if you want to help your state take the top prize, visit the Food for Thought page on the AFTD website.
So...put your state on the map! Fill out the Food for Thought contact form and AFTD will connect you with a volunteer liaison to help you out along the way. For questions about Food for Thought, contact Liz at [email protected]
More information on grassroots fundraising can be found on our website...simply click here. |
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Words of enCOURAGEment | |
AFTD Regional Coordinator Volunteer Addresses NAPA on Impact of FTD
At each meeting of the National Alzheimer's Project Act (NAPA) Advisory Council for the last two years, AFTD has sent a representative to speak during the time devoted to public comments. For the council's July meeting, Katie Brandt flew from Boston to address the members in her capacity as a caregiver, advocate, and regional volunteer coordinator for AFTD. Also present were Pop Shenian, a member of AFTD's Board of Directors, and Matt Sharp, AFTD program manager.
Katie's husband, Mike, was diagnosed with FTD at the age of 29 after eight misdiagnoses. Shortly after receiving the news that Mike had FTD, Katie's mother passed away unexpectedly, and her father was diagnosed with early onset of Alzheimer's. Katie resigned from her job and moved with her young son to live with her father, while finding a place for her husband in a nearby rehabilitation facility. She told the council, "Being a dual caregiver was not easy. I had to learn to speak the language of Social Security, Medicaid and guardianship. I applied for Food Stamps, but I was never eligible for TANF because I was not seeking employment, and caregiving is not considered a job."
Katie is now a widow, but is still a caregiver to her father. She concluded her comments to the NAPA Advisory Council with these words: "I stand before you as an Alzheimer's caregiver and an FTD advocate, compelling you to keep FTD and related dementias central to NAPA's work. My story of caregiving is one that should be remembered, not repeated."
For Katie's full story, click here.
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Pop Shenian, Katie Brandt and Matt Sharp at the NAPA Advisory Council Meeting. |
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