Join Our List to Receive The Gateway!
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Become an AFTD Volunteer!
Do you want to join volunteers across the country who are educating facility administrators about FTD and how it differs from other forms of dementia? You CAN by conducting awareness facility visits in your community. The next Facility Outreach Training will be conducted by Mid-Atlantic Regional Coordinator Volunteer, Sarah
Sozansky Beil, on Tuesday, January 24th, 2017 at
8:15 pm (EST).
You will be provided with an interview guide, strategies for approaching facilities and an information packet to give to the staff. We hope that you will consider this important opportunity! To learn more and register, please email Volunteer Manager, Kerri Barthel Keane at
[email protected]. AFTD's latest Volunteer Orientation Schedule is now available online
here.
We Value Your Insight
Through
The
Gateway
and other resources, AFTD will be sharing tips, troubles, triumphs and challenges from our community. Have some to offer?
Openings in Telephone Support Groups
AFTD currently has space in three of our phone support groups: a parents group, for caregivers that also have children under 18 in the home; a group for male caregivers; and our FTD/ALS support group. Connecting with others who understand FTD can create a lifeline for emotional support, facilitate practical problem-solving and lead to the discovery of new resources. If you would like to join any of these groups, please contact Bridget Moran, Support Services Manager, at 267-758-8653 or
[email protected]. We know the feelings of isolation caregivers of loved ones with FTD can have and how helpful it can be to talk to others experiencing similar emotions. We hope you join us!
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What's New
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| Tam Smith with her husband, Bob |
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Bob Smith was a dentist, an amateur radio operator, a Mensa member and an "investment whiz" who could fly a plane and finish tricky crossword puzzles in ink. "All things he can't do any more," Tam says.
Seeking help after her husband's FTD diagnosis, Tam found an Alzheimer's support group near her hometown in Kansas but didn't find what she was looking for: Her husband's symptoms didn't match what the group was addressing. With no FTD-specific support groups in the area, Tam resolved to start one of her own.
AFTD provided Tam with the education and resources she needed to confidently run a new FTD support group. She now almost single-handedly helps people affected by FTD in a previously underserved area of the country. "I was feeling a little shaky about it at first," she said, but AFTD's support was "like magic."
AFTD empowers volunteers like Tam to bring their own form of magic to our community, but it's only possible with your help. Will you
make a tax-deductible donation today?
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Care and Support
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Comfort Care and Hospice in Adv
anced FTD
Because FTD often strikes people aged 60 and younger, many are diagnosed before they have adequately planned their end-of-life care needs. The newest issue of
Partners in FTD Care
tells the story of Mark H., diagnosed with bvFTD at 60, and his wife Terry, who collaborates with health care professionals to define Mark's care goals as he nears the end of his life.
This
issue explains how health care professionals can support family members to ensure that persons with FTD receive end-of-life care that matches their wishes. The accompanying fact sheet, "What to Do About..." details the steps needed to establish an advance care plan and to choose a hospice provider that is right for the individual and family affected.
Read the entire fall 2016
Partners in FTD Care
newsletter
here
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Save the Date: 2017 AFTD Education Conference!
AFTD is pleased to announce our 2017 Education Conference will be held on Friday, May 5th at the Sheraton Inner Harbor Hotel in Baltimore, MD. The conference will offer participants a vital opportunity to learn about the latest scientific advances targeting FTD, to make connections with others in our community, and to hear about new resources and interventions to support people whose lives have been impacted by the disease.
Confirmed speakers include leading experts in FTD research and care:
- Chiadi Onyike, MD, Johns Hopkins University, an AFTD Medical Advisory Council Member, will provide background on the different forms of FTD, and updates on research advances worldwide.
- Lisa Gwyther, LCSW, Duke Family Support Program, will facilitate a panel on ways to promote dialogue between caregivers and persons diagnosed.
- David Irwin, MD, The Penn FTD Center, will speak about medications and non-pharma approaches to treatment.
- Catherine Piersol, PhD, OTR, will discuss how Occupational Therapy and person-centered activities can minimize behavior issues.
AFTD Program Director, Sharon Denny, M.A. notes, "We are very excited to offer an expanded program to benefit everyone affected by FTD - including persons diagnosed. We will be offering significantly more breakout session options than last year, with choices in clinical issues, care strategies and support/networking."
AFTD offers financial assistance for individuals with FTD and caregivers interested in attending. Comstock Travel Grants may be used to offset some of the costs associated with travel and lodging fees.
Registration opens on January 9th, 2017 - visit our conference page for more details.
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| Medical Momentum |
AFTD Sponsors RNA Metabolism Conference
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J. Paul Taylor, MD, PhD
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When FTD can be traced to a gene mutation, families often wonder how a small defect in DNA can lead to catastrophic brain degeneration. One possibility gaining traction in the research community is that the key to the disease-causing effect of some DNA mutations is actually RNA, a related molecule that "reads" the instructions coded in DNA and
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Fen-Biao Gao, PhD
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follows them to build associated proteins. Gene mutations can produce
abno
rmal RNA as well as abnormal proteins,
which can impact cell survival.
The role of these breakdowns in the relationship between RNA and associated proteins in neurodegenerative diseases, including FTD, was highlighted at the 4th RNA Metabolism in Neurological Disease conference, held November 10th-11th, 2016 in San Diego, CA. Chaired by 2007 AFTD Pilot Grant recipient J. Paul Taylor, MD, PhD, of St. Jude Children's Research Hospital and Fen-Biao Gao, PhD of the University of Massachusetts Medical School, this AFTD-sponsored conference brought together nearly 300 scientists to discuss the latest developments in the field.
Advances presented at the conference offer new possibilities for FTD drug development. Disruptive changes in RNA leading to death of nerve cells is a trait shared by FTD, ALS, spinal muscular atrophy and other diseases. The discovery of the C9ORF72 gene mutation, shared by FTD and ALS, has led to new discoveries about the contribution of toxic RNA to these diseases.
"This unique conference provides a forum to share knowledge across diseases and contributes to drug discovery efforts that can benefit all,"
said Nadine Tatton, PhD, AFTD's Scientific Director.
Be Part of a Major NIH-funded FTD Study
ARTFL (Advancing Research
and Treatment for Frontotemporal Lobar Degeneration), a major NIH-funded natural history study of FTD, is seeking participation from individuals diagnosed with FTD and their family members.
Participants will have the opportunity to enroll in two studies: Preparing for Sporadic FTLD Clinical Trials or a Longitudinal Assessment of Familial FTLD.
There are 15 ARTFL sites across the US and Canada, and each is an expert center for the diagnosis and treatment of FTD.
To find an ARTFL site near you and learn about opportunities to participate, email
[email protected]
or call (415) 476-7777 today.
Find more information about the ARTFL study here.
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The AFTD-Team
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AFTD's 6th Annual W
ith Love
Campaign is right around the corner. Don't miss out on this opportunity to honor or remember a loved one impacted by FTD. Inspired by the day dedicated to love, Valentine's Day, this one-month long campaign takes place throughout February. Want to be part of it? We're here to support you with tools a
nd ideas! If you're ready to share your story about a loved one affected by FTD, while raising awareness and raising funds to support AFTD's mission, email Bridget Graham at:
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AFTD's Volunteer Network
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Host a Meet and Greet in Your Community
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| From left to right: Susan Eissler, Rachel Castellanos and Zoy Kocian |
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On November 16th, volunteer Rachel Castellanos organized a successful meet and greet near Baton Rouge, LA. The gathering brought together 30 people affected by FTD, our biggest meet and greet to date! In attendance were South Central Regional Coordinator Volunteer Zoy Kocian and former AFTD Board Member and Regional Coordinator Volunteer Susan Eissler. Attendees took in a brief presentation about AFTD, questions and discussions were encouraged, and time was allotted for everyone to connect. Zoy shared, "It was very inspirational - I can't wait to do another one!" If you are interested in organizing an informal meet and greet in your area, please contact your Regional Coordinator Volunteer
here.
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Words of enCOURAGEment
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Coping With FTD
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Cindy with her husband, Mike
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By: Cindy Odell
I have the interesting experience of addressing FTD from two different directions. I have helped to care for three family members... and when I was in my mid 50s, I was also diagnosed with FTD. It helped immensely that I was caring for my aunt at the same time; I understood the disease much better. While I do not pretend to be an expert, I hope that by sharing my experiences from both sides, I can help others cope better when dealing with FTD.
CARE PARTNERS
Notice that I write "care partners," not caregivers or caretakers. Those with FTD must be partners with the one providing care. It will not work well if it is one sided in either direction. And my advice to all care partners: All you can do is to do your best. You don't have to be perfect and you don't have to be a saint. Stop feeling guilty, you can only do what you are able to... above all, ask for help.
ANGER
It begins with the anger of having the disease as well as the symptoms that come with it. Frustration can build throughout the day. Do not be afraid to ask the doctor about anger and/or frustrations that are cropping up often. Anger is not the fault of either the one with FTD or of the care partner and should be openly discussed. Together, you can decide how to address the problem.
SUPPORT GROUPS
Support groups are places where you can feel safe talking about the issues you are dealing with. You can also gain information and suggestions for coping. They offer a place where you can get a hug or hear a joke when you need it.
Read Cindy's complete advice
here.
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AFTD's Network of Support
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A
FTD offers ongoing training for affiliated volunteer support group facilitators, and is grateful to those willing to share their time and talents to help caregivers gain valuable support and resources. To our newest support group facilitators,
w
e are honored to welcome you aboard!
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Susan Treanor
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Ft. Myers/Naples, FL
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Larissa Haiker
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Irvine, CA
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Find information on local support groups here. Thinking of becoming a support group leader in your area? Learn more by contacting our Support Services Manager, Bridget Moran at
[email protected]
or 267-758-8653.
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