Join Our List to Receive The Gateway!
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Regional Coordinator Volunteers
What do AFTD regional coordinator volunteers do? They represent AFTD throughout their region, coordinate volunteer activities and support their volunteers. To connect with your regional coordinator and learn more about volunteering, find your regional coordinator volunteer here. Volunteer Orientation Team
AFTD is looking for a few volunteers to join our volunteer orientation team. It is important for new volunteers to get to know us and understand what it means to volunteer with AFTD. Help us provide volunteers with the foundation to go forth confidently as AFTD volunteers in their communities. If you like to present to individuals and groups or enjoy coordinating volunteers, please email Kerri Barthel, volunteer manager to learn more. Young Adult Facebook Group
AFTD has a young adult Facebook group for people in their 20s and 30s who have a family member or loved one with FTD. A "secret" Facebook group, this online community was established to offer a supportive environment where people can feel comfortable sharing their feelings and experiences. If you meet the age criteria and wish to join this private group, please email [email protected] and include the email address you used to open your Facebook account. Please note that AFTD will not use your email address for any reason other than to invite you to join the group via Facebook. |
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What's New
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AFTD Continues Strategic Growth
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Bridget Moran,
AFTD Support
Services Manager
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This past month, AFTD welcomed our newest staff member, Bridget Moran, into a newly-created Support Services Manager position! She now works collaboratively with AFTD staff and volunteers to foster resilience in and engage our growing community. A key part of Bridget's role is to create and manage a national network of support groups across the U.S.
Bridget has a Master's degree in
Public Health and joins us from the University of Pennsylvania, where she coordinated clinical and research projects in the fields of mental and community health. Bridget has a deep personal respect and appreciation for the issues and barriers faced by people diagnosed with FTD, their caregivers and families. She is excited to work with AFTD to build a support group network so that individuals with FTD and their caregivers have access to high quality, effective support services.
She will develop a mechanism through which existing FTD support group leaders can formally affiliate with AFTD, while also identifying and expanding the number of groups in underserved areas. As this effort gets underway, she will be reaching out for input to fine tune our understanding of the needs of support group facilitators and members. If this is an area of interest for you, Bridget would love to hear from you!
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Caregivers' Corner
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| The Loss of Empathy and Connection in FTD "My mom didn't even care when I told her I was getting married," said a young woman in an FTD caregiver support group as she wiped away tears. "We were always so close." This type of loss of emotional warmth and indifference toward other people, including loved ones, is common in FTD.
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Empathy, the emotional glue
in relationships that lets us understand the feelings,
needs and concerns of another,
is an early casualty in FTD. |
People with FTD often make uncharacteristically insensitive comments. They can be self-centered in their actions, and have flat, emotionless facial expression. Empathy, the emotional glue in relationships that lets us understand the feelings, needs and concerns of another, is an early casualty in FTD. Loss of empathy is often the most distressing symptom for spouses/partners and family members. Be sure to:
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Recognize that loss of empathy and the inability to connect emotionally are primary symptoms of FTD.
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Acknowledge the hurt, sadness and anger that you may feel when your partner no longer reacts in expected ways.
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Use counseling and support frequently to process emotions. AFTD educational materials and FTD support groups may help.
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Redefine the relationship continuously as the disease progresses. Keep your side of the connection open to maintain a connection even when the disease prevents reciprocity.
For more information on the loss of empathy in FTD, see page 40, Approaching Care with Smarts and Heart, in the AFTD 2015 Education Conference booklet. A December 2014 handout from AFTD's Partners in FTD Care resource for health professionals also provides helpful guidance. |
| Medical Momentum |
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Two AFTD Postdoctoral Fellowships
Awarded for 2015-2017
By awarding postdoctoral fellowships, AFTD is able to support scientists-in-training to become strong and lasting contributors in the FTD research world. Through generous research donations, this year we are able to award two fellowships to very worthy candidates.
Dr. Hilary Archbold - RNA Dysfunction in Frontotemporal Dementia
Hilary received her PhD from the University of Michigan and will start her Fellowship program at the University of Michigan with Sami Barmada, M.D., PhD.
Dr. Barmada's group has developed cutting-edge imaging methods to follow proteins in human stem cell-derived neurons. Dr. Archbold will advance this technology further by using it to track RNA in FTD neurons, to understand how failure to properly metabolize RNA leads to nerve cell death in TDP-43 FTD nerve cells.
Dr. Maya Lichtenstein - Developing a tool for discriminating social cognition deficits in bvFTD from that of depression
Maya received her MD from the Sackler School of Medicine in Tel Aviv, and completed her residency in Neurology at Penn State Medical Center. She will start her Fellowship program at the University of British Columbia with Howard Feldman, MD, FRCP(C).
Dr. Lichtenstein will use her expertise as a behavioral neurologist to develop a method for testing social cognition that can accurately measure early, subtle changes in behavioral FTD and distinguish them from depression, a common misdiagnosis for FTD patients.
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The AFTD-Team
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| Food for Thought! It's almost that time again! AFTD's 3rd Annual Food for Thought campaign is just around the corner. Do you want to host a bake sale, restaurant benefit night, or other creative event to make sure your state is on the map? Are you interested in being a volunteer liaison and supporting event hosts around the country to make sure FFT is a success? Visit the Food for Thought page for more information and fill out the Food for Thought contact form to get started! Together we'll make sure that 2015 is the year we take all 50 states!
Walk the Walk with AFTD! Boston, MA - AFTD has formed a team to participate in the Cambridge Freedom Run 5K on June 7th. Visit the event page to start your fundraiser and for registration details. We can't wait to see you there! Austin, TX - AFTD supporters will take part in the Fit Foodie 5K in Austin on June 13th. Join the team to raise funds and awareness! Visit the event page for more information. |
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Words of enCOURAGEment
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2015 AFTD Conference Empowers Caregivers
On April 24th, AFTD held its annual conference in San Diego. Caregivers among the more than 200 conference attendees found an opportunity to share common strength and perspective.
Sachiko Gause of S?o Paulo, Brazil said: "With my mother in Japan, and my sister and I both living in different continents, our family is struggling with how best to support my father who is my mother's main caretaker. It was particularly encouraging to see so many patients participating with their families... My father was especially grateful for all the helpful knowledge that I was able to gain and share with him through the conference." Lyle McCarty of Davis, California said, "I've been a member of a call-in support group, with people calling in from all over the country," he said. "Getting to meet face-to-face the people I've been talking to let me to build a more personal connection with people I had already known for years. And getting to meet others dealing with the same issues, and to make new connections, was so helpful." Joanna Dauber, an AFTD Regional Coordinator from Philadelphia said that the Conference empowered her to be a better advocate. "Personally, being able to share my family's experience with FTD with others who understood was priceless. I finally felt that I was not alone and that my family was not just a victim of a terrible disease, but that we could join together... and make a difference." |
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