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Help & Hope
February 2022  |  Issue # 83


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AFTD 2022 Education Conference
Register Now!

Help & Support
Social Security Benefits for People Living with FTD

The AFTD-Team
With Love
Athlete of the Month

Advancing Hope
Participate in FTD Research

Words of Encouragement
Home for the Holidays

Community Connection
AFTD Support Groups Amid the COVID-19 Pandemic
AFTD's Network of Support is Growing
Volunteer of the Month

Don't Miss Out On...
Additional News and Resources
AFTD 2022 Education Conference

Register Now!

Registration for the 2022 AFTD Education Conference is now open! Sign up today for a chance to connect, learn the latest information about FTD care management strategies and research opportunities, and engage with others who understand.

This year's conference is being held as a hybrid event on Friday, April 8, 2022. Full online participation in the event is free to all who register. Registration for online attendance is unlimited and will remain open until April 2. 

Attending the in-person event, which will be held at the BWI Airport Marriott in Linthicum, MD, requires a registration fee of $75. The fee can be waived for people living with FTD, care partners, and family members.

For the health and safety of all, space for joining the event in person is limited, and will be honored on a first come, first served basis. In the event that registration for in-person attendance becomes full, a waitlist will be available. We are hopeful that as COVID-19 cases continue to decline, we will be able to safely open up more in-person seats.

Please note that proof of full COVID-19 vaccination will be required for all in-person attendees. Attendees will be required to complete a brief symptom screening on the day of the event, and masks will be required. The event will be held in compliance with all federal, state, and local regulations.

You can find out more about our conference program, discount hotel rates, and Comstock Travel Grants via our conference landing page.

Learn More and Register Today!
Help & Support

Social Security Benefits for People Living with FTD

As a young-onset form of dementia that typically strikes during the prime earning years, FTD often has a significant impact on a family’s financial situation. Through a combination of loss of income and health coverage, the increased need for medical and other healthcare services, and symptoms that often include financial mismanagement and recklessness, the economic burden of FTD can be extreme. In fact, a study funded and co-written by AFTD found that the average annual costs of FTD are nearly double those associated with Alzheimer’s disease.

Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) are federal benefit programs that can help persons living with FTD access financial relief and medical benefits after a diagnosis. The process of applying for benefits can be daunting but the following resources can provide crucial information to help you get started.

The Social Security Administration has identified certain diagnoses under the Compassionate Allowances List (CAL) which qualify an applicant for expedited medical review, provided they have a properly documented diagnosis. All of the FTD disorders are included under CAL. A full description of the program and additional information are available on the Social Security website. Although CAL can help expedite an applicant’s medical review, the person must still meet other requirements for SSDI which can be found here.

Individuals with a limited work history may not have paid enough into Social Security to be eligible to receive SSDI. In this case, the person may qualify for benefits through Supplemental Security Income (SSI), which is a needs-based financial assistance program.

When applying for SSDI or SSI benefits, be sure to include your or your loved one’s diagnosis exactly as it is listed on the CAL. For example, primary progressive aphasia (PPA) is listed, but subtypes such as semantic variant PPA are not specified. Accompanying medical records must clearly indicate the diagnosis, and the person applying must still meet all other qualifications for SSDI or SSI. It is often recommended to include a supplementary letter from the diagnosing physician reiterating the diagnosis. Throughout the application process, be sure to specifically indicate that you are applying for consideration under the Compassionate Allowances program.

If you or a loved one qualify for SSDI benefits, eligibility for Medicare begins 24 months after the date of disability (not always the application date). During this period, families often seek health insurance coverage through a spouse, COBRA, or their state health insurance marketplace. Those receiving SSI benefits become eligible for Medicare at age 65, but can receive medical coverage through Medicaid in the interim. Information on how to apply for disability benefits, along with the applicable forms, can be found by visiting this link.
Apply for Disability Benefits
The AFTD-Team

With Love

We’re halfway through our annual With Love campaign, and the stories shared so far by this community are nothing short of inspiring. For a sampling of the many creative contributions, check out the following fundraisers:
  • Loving Grandpa – pays tribute to the special bond between a grandfather and his grandson, who was born exactly two months after his grandfather’s FTD diagnosis. From the sandbox to the swings, the two became inseparable companions on the FTD journey.
  • Hope's Story – Kenneth McCullough shares memories of Hope, his wife of nearly 40 years, who was a mother, grandmother, daughter, sister, teacher, and lover of rescue dogs.
  • With Aloha Nui Loa for My Dad – a daughter commits to spreading FTD awareness, living a healthy lifestyle, making brain-benefitting choices, and encouraging others to do the same.
With Love runs through the end of February and it’s not too late to get involved. Create your own fundraiser inspired by the ones shared here, then share your story by personalizing your page with text, videos, and pictures. You can also choose to donate directly toward the campaign to help us reach this year’s fundraising goal in support of AFTD’s mission of hope.
To get started, visit the campaign website today, or reach out to AFTD’s Fundraising Team for further assistance:
Share Your FTD Story, With Love
Athlete of the Month Maggie Sepesy and her brother, Alex Sepesy, following completion of the 2021 TCS New York City Marathon as members of the AFTD-Team.

Athlete of the Month

AFTD’s February Athlete of the Month is Maggie Sepesy from New York. Maggie uses the Charity Miles app to track her mileage as she runs in memory of her mom Tracey, who was diagnosed with FTD in 2014, and passed away in February of 2020. 
After a short hiatus during college, Maggie took up running again while living with her parents and helping to care for her mom. Her runs became a way to relieve stress and anxiety, while also supporting AFTD’s mission. Since joining her first AFTD Charity Miles challenge in 2020, Maggie has logged 6,650 miles, and recently completed the 2021 TCS New York City Marathon along with other members of the AFTD-Team.
Maggie is motivated to raise awareness of FTD and get the word out about AFTD’s mission of hope and community of support. “FTD can be so isolating, and it’s very challenging to explain this experience to others. I hope that as more people learn about this disease, those who are living with FTD will feel less alone, and families won’t have to jump through hoops to get a diagnosis and the help they need.”
Join Maggie and the rest of the AFTD-Team by downloading the Charity Miles app today! You can turn your daily workout into a fundraiser that supports AFTD’s mission and the people we serve by creating your own pledge page. Simply set mileage and fundraising goals, ask your family, friends, and colleagues to support you, and track your miles every time you run, walk, bike, or hike. Each mile logged advances AFTD’s work to build a future free of FTD.
All of us at AFTD wish to thank Maggie, and the entire AFTD-Team, for making your mileage count for the cause!
Join Maggie & Make Your Mileage Count!
Advancing Hope

Participate in FTD Research

PLEASE NOTE: A key aspect of AFTD’s mission is to stimulate participation in research. We do not take funding to publicize research opportunities, and we do not “endorse” or “approve” any study. Rather, we provide you with this information and encourage you to find out more as you consider whether these opportunities might be a good fit for you. 

There are many different research opportunities for people diagnosed with FTD, care partners, family members, and friends. Follow AFTD’s Featured Studies page and consider enrolling in the FTD Disorders Registry to stay informed.

Participating in a research study lets you help to advance the search for effective FTD therapies, increase understanding of disease mechanisms, speed the identification of biomarkers to improve diagnosis and inform drug development, or promote the development of strategies to improve quality of life. This month we're highlighting two studies that are currently seeking participants:

SAGE LEAF: Reducing Burden in Alzheimer's Disease Caregivers through Positive Emotion Regulation and Virtual Support

Caregiving can be stressful. If you care for a loved one with FTD, you could be eligible for the SAGE LEAF Study. Researchers at Northwestern University are testing an online, positive emotion skill-building program to help caregivers cope with stress.

This study is led by Dr. Judith Moskowitz and the NU IRB study number is: STU00215548. SAGE LEAF is supported by the National Institute on Aging.

The program comprises six weekly skill-building lessons delivered online through self-guided online lessons. The SAGE LEAF program is delivered remotely and does not require in-person contact. Participants also receive up to $50 in Amazon gift codes for their participation.

For more information or to see if you are eligible, please contact the researcher team at and mention “SAGE LEAF Study.”

Novel In Vivo Synaptic Imaging in Behavioral Variant FTD (bvFTD)

Yale University School of Medicine and Yale New Haven Hospital are conducting a neuroimaging study. This study will help researchers better understand bvFTD and may lead to a new biomarker that could help detect and diagnose bvFTD earlier.

WHO: People with bvFTD, ages 40-85.

WHAT: Participation involves one phone screening and at least 3 in-person visits. Study procedures will include: A screening appointment, a magnetic resonance imaging (MRI) scanning session, and up to three Positron Emission Tomography (PET) scanning sessions.

WHEN: Flexible with your schedule, but most weekdays for visits. Phone screenings can occur any weekday.

WHERE: Yale University PET Center (801 Howard Avenue, New Haven) for screening and PET scan. Anlyan Center (300 Cedar Street, New Haven) for MRI. Transportation arrangements can be made on a case-by-case basis.

Learn more about HOW to get involved in this study by visiting the Featured Studies page on our website.

Participate in FTD Research
Word of Encouragement

Home for the Holidays

by Nancy Brooks

My Dad has been living with bvFTD for almost 15 years. When I was 20 years old I moved to Oregon, right around the time that my Dad, Mark, got sick. Back then, I would fly to Illinois twice a year, and bring him back to my home in Oregon for month-long visits.
The last time I saw my Dad, before the pandemic began, was in December of 2019. On that last visit, he packed his suitcase and said, "I'm going to come with you.” I explained to him, "No Dad, not this time. But I’ll be back in May to pick you up.” I could tell he didn't understand, and I left in tears.
A few months later, COVID hit, and I wasn’t able to return in May 2020 like I’d planned.
Once travel was possible again, I moved my Dad from his memory care facility in Illinois to Oregon so that he would be closer to me. My husband and I rented an RV, and, with our two small children, drove across the country with my Dad, since he is no longer able to fly. When we picked him up, he didn’t know who I was.
My Dad lived with us for the first few months, until it became necessary to place him in a new memory care facility. Shortly after moving him in, COVID cases began to rise again, and I was told we wouldn’t be able to visit for Christmas. I was incredibly disheartened by the news.
Soon after, I was scrolling through my Facebook feed, and saw a post from AFTD about updates to visitation policies in Medicaid-funded facilities. There was a link to the federal document, which clearly stated that as of November 12, 2021, people living in facilities were allowed unrestricted visits with their loved ones. My Dad's care home was not following these guidelines, so I took it upon myself to call the executive director and send her a link to the document. Because I had this information, I was able to advocate for myself and my dad, and I was granted entrance into his care facility on Christmas Eve! I packed my dad’s bag and brought him back to my house, where the next morning we woke up to a White Christmas! It almost never snows in the valley in Oregon, but over Christmas and the days that followed, we watched in amazement as over a foot of snow fell!
It was such a beautiful experience to get snowed in with my dad over the holiday. Although he can't talk anymore, we sat together in the quiet morning hours before the kids awoke and watched the snow fall together. As he gazed peacefully out the window, I sensed that he was remembering. Later in the day, we set presents on his lap, and his two granddaughters climbed all over him, showering him with kisses and love.
I'm so grateful for the time we got to spend with my Dad, since it may be one of his last Christmases. I’m also grateful for this community that truly understands what we are going through, and to AFTD for raising awareness and providing timely information to families affected by FTD. This is a journey I never would have chosen, but I find comfort in knowing I'm not alone. Whichever season of FTD you are in right now, I hope that you too can find some moments of peace and solace this winter, perhaps gazing out the window at the falling snow.
Community Connection

AFTD Support Groups Amid the COVID-19 Pandemic

Finding support during these ever-changing times has proven more essential than ever. Families living with FTD continue to contend with the challenges that the COVID-19 pandemic has layered on top of an already complex journey. During this time, AFTD and our team of dedicated volunteers have persisted in providing support. AFTD Support Group Volunteers (SGVs) have worked diligently throughout the pandemic to act as guideposts of hope and support for those affected by FTD.

Thanks in large part to our dedicated SGVs, AFTD has been able to continue to offer support groups as a resource for individuals and families affected by FTD. Despite the uncertainty introduced by the pandemic, our Support Group Volunteers have pivoted and adjusted the structure of our support groups, implementing an all-virtual experience to safely support those on the FTD journey.

For many, moving from in-person meetings to an online platform has at times been challenging. However, continuing to provide support for FTD care partners and loved ones has motivated our volunteers to adapt and persist. Katie Brandt co-facilitates a support group in Massachusetts, which is one of AFTD’s largest, and served 780 participants in 2021. Katie’s experience in this role has confirmed that the “need for support for caregivers has remained constant” in the midst of the pandemic.

“The evolution of our support group from an in-person experience to an online platform has reinforced my belief in the resilience of our caregivers. We have learned to adapt to new obstacles and remained committed to connecting with one another. Technology has not presented barriers to caring for one another, recognizing emotional needs, and comforting those who show up at group with tears and broken hearts,” Brandt said.

Bernie Metzger, another co-leader of the Massachusetts group, shared: “We have built a mature group that is capable of providing help to existing members, while also easily incorporating new members. The result is that we are able to provide a safe and comfortable environment in which to discuss difficult issues.”

Andrea Maga and Missey Toomey, co-facilitators of a support group in the Colorado region, navigated the challenges of transitioning from in-person to online meetings by offering multiple ways for members to connect. The pair initially moved their gatherings from a local coffee shop in Ft. Collins, CO to phone meetings. Later they transitioned to Zoom meetings to facilitate a “face-to-face” connection. This smaller group, which supports an average of 4-6 people per meeting, found that their members benefited from the virtual format as they expanded into a regional group.

“Our members say they like the virtual group, because some of them come from so far away, from places like Wyoming, Nebraska, Boulder, and Denver. They like it because they’re not sure they could attend in person,” Maga shared. “I think it’s really nice that we have this tool and can at least be somebody to listen.”

Chuck Anastasia, who leads a support group in Rhode Island, hosted “practice Zoom sessions” before meetings to assist members of his group who had difficulties utilizing video conferencing platforms.

“Changes to established routines can be a challenge, but change also creates opportunities. I try to encourage our members to adapt to the virtual meeting format in the same way that we recommend adapting to change as their loved one’s illness progresses. It is harder to make an emotional connection through a screen, and some of our members deeply miss the in-person format, but most have adapted well,” he said.

AFTD Support Services Manager Bridget Moran-McCabe, MPH, organized a phone-based meeting option early on, then created Zoom accounts for all SGVs and provided Zoom training for facilitators who weren’t familiar with the platform.

“Those on the FTD journey have shared that isolation is one of the hardest things about the disease, and that was before COVID began," Moran-McCabe said. "The pandemic has stretched our community even further, as community resource centers have closed their doors, and facilities have been impacted by the national crisis. Caregivers and family members need a space to process what that means for them. It was not an option for us to shut down access to support, when so many other resources were no longer available to our community."

AFTD is so grateful for all of our volunteers, and proud of how they’ve adapted and learned new ways of providing support. Our Zoom accounts provide a secure way to hold space, while also allowing groups across the country to welcome and serve more members, since geographic distance is no longer a barrier to attendance. For those who need or prefer an in-person option, please reach out to AFTD and let us know. We’d also encourage you to consider leading a peer-based group in your area, which is a rewarding way to gain support while helping others do the same.”

As we look to the future, AFTD is committed to being responsive to pandemic conditions, while working with our volunteers to continue adapting and expanding both our in-person and virtual support group options on a local, regional and national level. Welcoming new SGVs, providing ongoing training for our volunteers, and continuously updating our website to reflect the most current and accurate information will help to ensure those seeking support can find it in a format that suits their needs. AFTD remains steadfast in our mission to ensure that all who are affected by FTD have access to high quality, effective support.  

For more information about AFTD Support Groups, visit the “Find Support Near You” page on AFTD’s website.
Find a Virtual or In-Person Support Group
AFTD's Network of Support is Growing 

AFTD is proud to introduce our newest support group volunteer.

We welcome Steve Zamberlin: Puget Sound Area, WA

We are grateful to you for sharing your time and talents to help provide caregivers much needed support and resources.
Volunteer of the Month, Stephanie McLain, pictured with her father, Mike Kipp

Volunteer of the Month

When Stephanie McLain’s mom was diagnosed with FTD, her family went in search of information and resources to help them understand the disease and better navigate the FTD journey. It was through this search that she discovered AFTD, and it wasn’t long before Stephanie raised her hand to volunteer. “I volunteer because, when my mom was diagnosed, AFTD was there for us when we were looking for answers. I want to help others in the same way we were helped,” she shares.

Beginning in 2012, Stephanie got involved in organizing fundraising events and campaigns to raise critical financial support to fuel AFTD’s work. Then, in 2017, she took on the role of support group volunteer, walking alongside others in the Austin, Texas area who are on the FTD journey. “There are many satisfying things about volunteering with AFTD, but I think the most rewarding is supporting caregivers of those with the disease,” she says. Ten years from when she first got involved, Stephanie continues to help other families impacted by FTD through co-facilitating her support group along with Barbara Loewy, and fundraising in support of AFTD’s mission.

AFTD is immensely grateful to Stephanie for her dedication to the cause, and the vital support she provides to others who are affected by FTD. If you’re interested in becoming a part of our national volunteer network, please visit our website to learn more, and fill out our volunteer form to get started.
Take Action and Volunteer!

An important announcement about a partnership between AFTD and the Alzheimer's Drug Discovery Foundation (ADDF) that will support Wave Life Sciences’ FOCUS-C9 Phase 1b/2a clinical trial investigating a potential treatment for C9orf72-associated frontotemporal degeneration (C9-FTD).

The recording of our recent 
Perspectives in FTD Research Webinar, "FTD Biology & Testing: Why Do You Need My Samples?," produced in partnership with the FTD Disorders Registry.

Registration for Penn FTD Center’s second annual familial conference, "Uncovering the Genetics of Familial FTD/ALS," taking place on Wednesday, February 23.

An article published in Brain Sciences that offers an overview of the last two decades of behavioral research of persons with svPPA and outlines the interventions that will likely prove to be beneficial treatment options.

A recent article in the The New York Times highlighting the difficulties of accurately diagnosing dementia in younger adults, and detailing the different young-onset dementia types, including FTD.

CBS 11 News coverage of the 50th BMW Dallas marathon, which included a brief interview with the Ryan family, who ran to honor the memory of their late loved one, Kevin Ryan, who was diagnosed with FTD in 2018. 

A recent episode of Health Affairs' "Narrative Matters" podcast, in which genetic counselor Shivani Nazareth read her essay, “To Uncover My Mother’s Genetic Disorder, I Had to Lead the Way,” about advocating for her mother to receive genetic testing, and how that led to her FTD diagnosis.

AFTD is hiring.
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The Association for Frontotemporal Degeneration
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