The COVID-19 pandemic has brought significant new challenges for families facing FTD, and it has also brought new obstacles for the scientists seeking to better understand and treat this disease. Dedicated researchers across our field speak to a strong sense of determination to treat and cure FTD despite the obstacles—and identified changes made in this difficult operating environment that could bring future advances. At the outset of the pandemic, many labs shut down to prevent the spread of COVID-19. This restricted operations and brought some studies to a temporary halt.

Fen-Biao Gao, PhD

“We lost about three months…but we’re doing the best we can,” said Fen-Biao Gao, PhD, a professor of neurology at the University of Massachusetts Medical School and the Governor Paul Cellucci Chair in Neuroscience Research. A researcher in basic science, Gao’s studies use different approaches to try to find the underlying mechanisms of FTD and other neurodegenerative diseases. While Dr. Gao has been able to continue aspects of his work, such as manuscript reviews, from home, lab experiments were largely placed on hold.

“We’ve since started up again,” he noted, and while he is hopeful that conditions will allow for studies to move forward without shutting down again, he added that “the pace is slower now than it was pre-COVID, because people don’t stay in the lab as long for the sake of safety.”

Todd Cohen, PhD

One of AFTD’s first Postdoctoral Fellows, Todd Cohen, PhD, now helps train graduate students and other postdocs as an assistant professor at the University of North Carolina Neuroscience Center. He has spent much of the pandemic working from home, writing academic papers while helping to care for his children.

“I would definitely say we took a hit in terms of productivity,” he told AFTD. “But we’re fortunate to be wellfunded and the science is moving forward.” Continuing FTD research is “more important than ever,” he noted, in light of the struggles for families now contending with both a pandemic and FTD.

Missing Connection, and Thinking Ahead

Andrew Arrant, PhD, an assistant professor of neurology at the University of Alabama at Birmingham, shared his perspective as an early-career researcher. A 2019 AFTD Basic Pilot Grant recipient, Arrant works in a lab seeking to better understand the pathologies and mechanisms of FTD. While restrictions initially slowed operations, Arrant and his fellow researchers were able to maintain existing studies, and can now pursue new experiments.

Outside the lab, social distancing restrictions and canceled in-person events have meant that Arrant has seen fewer opportunities to connect, both with other researchers and with the community of people and families affected by FTD. He said that he finds himself missing “the really rich interactions that can be incredibly valuable for feedback and generating ideas.”

In the clinical environment, bringing in new study participants is a challenge, and researchers have turned their attention to preparations that will help to move studies forward as they can safely resume. “We’re all thinking ahead to address hurdles… to set ourselves up for success now, before we get the go-ahead to open the floodgates,” and once again start enrolling participants in clinical studies, said Nupur Ghoshal, MD, PhD, a neurologist and clinical investigator at the Washington University School of Medicine in St. Louis.

“It’s not how we’re used to doing science,” she notes, but she is optimistic about the impact her team will be able to have as things get back online. Sourcing personal protective equipment and needed research equipment, and tending to administrative tasks have been priorities in the meantime.

Potential for the Future

The ALLFTD network, a National Institutes of Health-funded research consortium focused on measuring and tracking the FTD disease process in preparation for clinical trials, has also been responding to challenges brought on by the pandemic. Designed to maximize data collection and sharing across multiple research sites, the consortium relies on a longitudinal approach, studying the presentation and progression of FTD in people and families over time. Where COVID-related restrictions have limited opportunities to bring in research participants and collect new data in person, the consortium is brainstorming new ways to continue research, as technology including telehealth creates opportunities for inhome appointments and testing methods.

Across the border in Vancouver, Ian Mackenzie, MD, a professor of pathology and laboratory medicine at the University of British Columbia, and chair of AFTD’s Medical Advisory Council, has faced similar challenges in navigating a separate longitudinal study, and also noted the role telemedicine could play in advancing research.

“By being forced to do certain things remotely or with telemedicine – if we go through the process to get it set up and realize it can be relatively effective – this creates potential for the future that could be extremely beneficial,” he added.

Obstacles for Brain Donation

A pathologist, Dr. Mackenzie has also faced challenges in collecting tissue samples, as protocol at his facility now requires COVID-19 testing before an autopsy can be performed. This has resulted in a 24hour delay that can interfere with sample collection. Dr. MacKenzie and his team’s response in some cases has been to pursue collaboration with facilities whose policies allow autopsy for COVID-19 positive cases.

Tammaryn Lashley, MD, PhD, an associate professor of neurology at University College London, described a similar dynamic. A recent recipient of an AFTD FTD Biomarkers award, Dr. Lashley began the pandemic in a unique, yet fortunate, position, able to continue analyzing existing data and brain tissue in relation to her study. But the year has also created barriers to brain donation, which can prevent collection of tissue samples that could otherwise lead to important insight into FTD.

“FTD being such a heterogenous set of diseases, we need the postmortem samples to confirm diagnosis,” she said. “So, we will have lost quite a number of cases due to the pandemic.”

Bradley Boeve, MD

Policies in this area vary by facility, a situation that can leave families who have planned to donate a loved one’s brain with additional questions and challenges.

Challenges to Progress, and Challenges for Families

One of the ALLFTD consortium’s co-principal investigators, Bradley Boeve, MD, a neurologist at the Mayo Clinic and member of AFTD’s MAC, noted that “COVID has clearly slowed progress in FTD on many fronts.” He added: “Startup activities for ALLFTD have been delayed, and productivity will be far less than originally planned for 2020 and likely beyond.”

He continues: “But these challenges are dwarfed by the impact on persons diagnosed and their families. Many have told me that they feel even more isolated than before, and many are concerned about seeing local health care providers due to fear of possible COVID infectivity.”

Ian Mackenzie, MD

Researchers are dedicated to advancing FTD science in the ways that they can during this time. Jennifer Yokoyama, PhD, an associate professor at the University of California, San Francisco, whose work focuses primarily on the genetics of neurodegeneration, has been able to utilize this time to better focus on data and perform analyses that may have otherwise been deprioritized to pursue new experiments. While challenges have arisen surrounding staffing and sample collection, she remains optimistic.

“We’re doing the best we can to compensate quickly,” she said. “It’s important that we continue our research through whatever this pandemic may bring – and keep reminding people we’re still here, and that people are still impacted by FTD.”

Moving Research Forward

Despite the challenges and concerns that this pandemic will have continued impact on research and the families AFTD serves, FTD research continues to advance. The recent launch by Alector, Inc. of its INFRONT-3 phase 3 trial, testing the efficacy of a treatment for people at risk for progranulin-based FTD, has brought optimism; the company also took the step of issuing a public statement declaring its intent to sustain clinical timelines through the pandemic where possible, in compliance with local, state and federal guidelines.

For families looking to make a difference in research during this time, AFTD will promote opportunities for engagement in research throughout the year ahead and beyond. The Featured Studies page on our theaftd.org website, reachable under the Research & Clinical Trials tab, offers a current range of studies recruiting for participation. And if you have not yet signed up, the FTD Disorders Registry (ftdregistry.org) offers a vital way to get involved in ensuring future treatments and a cure for FTD.

A scene depicting the cast of NBC’s Zoey’s Extraordinary Playlist

Zoey’s Extraordinary Playlist, which concluded its first season on NBC in May, is helping to shine a light on FTD, bringing awareness to a national stage and helping to create a sense of connection for families facing the disease.

Branded as a musical “dramedy,” the show follows a young woman who, after an incident in an MRI machine, gains the ability to hear the innermost thoughts of people around her as songs and musical numbers. This newfound ability helps Zoey (Jane Levy) better connect with her father Mitch (Peter Gallagher), who is unable to speak due to progressive supranuclear palsy (PSP).

Show creator Austin Winsberg drew inspiration for the story from his late father’s journey with PSP. “I was not even aware of this disease before my father was diagnosed,” Winsberg told AFTD. “Writing about everything I went through at the time [was] both therapeutic and healing. It also had the added benefit of creating national awareness around a relatively rare disease.

“I could never have anticipated the tremendous outpouring of emails and messages I got from other people who all had been touched by PSP,” he said.

Over the course of the first season, the show tackled many topics related to FTD, including diagnosis and symptom management, the challenges of caregiving, and grief and loss. Winsberg hoped to portray Mitch’s care and disease progression in a way that was true to his own family’s experience with the disease; his father’s condition declined rapidly, and he died within nine months of diagnosis. “Virtually every family story we told in season one of Zoey’s Extraordinary Playlist was based on something that happened in my own house,” he said.

Jane Levy and Peter Gallagher of NBC’s Zoey’s Extraordinary Playlist

“It was very important to me that the depiction of PSP on the show be incredibly real and true to my own experience,” Winsberg added, noting that an on-set medical advisor was consulted to ensure authenticity. “Because I had a front row seat to the daily progression of the disease with my own father, it was easy for me to recall the various stages and the many setbacks we all encountered along the way.”

For many navigating an FTD journey of their own, the show has provided an authentic sense of human connection and empathy, both of which Winsberg hoped to foster.

“I can’t get over what a great job Peter Gallagher is doing; his face looks exactly as my husband’s did,” said viewer Loretta Morash Moskaluk, whose husband had PSP and died a year ago. “I find it difficult to watch, and sometimes I need to walk away from it. I always cry; it’s so close to home for me, but I am so thankful it is bringing awareness to this terrible disease.”

Winsberg said that Gallagher did a “copious amount of research” into PSP to help him play the role. He was “so accurate in his depiction of someone suffering from PSP that I often felt like he was channeling my Dad,” Winsberg said.

When Robert Chambers, whose wife is in the late stages of FTD, watched the show, he felt a strong emotional connection – and appreciated the inclusion of music in the plotline.

“Regardless of how quickly this disease runs its course, or how despondent the person may seem, I have been amazed at how music brings a sudden stimulation and recognition,” he said. “I am happy that this dreadful disease is being brought to the attention of so many who don’t understand the condition or the ramifications it has on the family. Thank you, Austin Winsberg, for your contribution to FTD awareness.”

The show, which first aired in January, was recently renewed for a second season. While details have yet to be announced, both Levy and Winsberg have expressed interest in exploring the idea of moving forward after loss, as well as the origins of Zoey’s musical abilities.

The series is available to stream on Hulu and YouTube.

Aisha Adkins never thought she would find herself in a caregiver role so early in life, but after her mother, Rose, was diagnosed with FTD, she placed her career on hold to help with her care.

Rose first started showing symptoms around eight years ago. Adkins, who was in college at the time, recalls her mom being unable to remember recipes and losing her sense of direction. But soon, what started as memory challenges progressed: Rose would overreact to simple mistakes made around the house and became obsessed with certain television programs. Realizing something was wrong, the family decided it was time to consult a doctor.

Aisha Adkins (left) and her parents, Ron and Rose

Rose’s symptoms were initially attributed to stress; after a second opinion, she was misdiagnosed with Alzheimer’s disease.

“She was then prescribed medications that were ineffective, as she seemed to get worse at a rapid pace,” Adkins said. “So, I joined some support groups online and did some preliminary research and saw there are other options, that it could be another type of dementia.”

The family sought yet another opinion. “Almost immediately the doctor was able to pinpoint her condition as FTD,” Adkins said, adding that the diagnosis came as a relief: “It was nice to have some answers, or at least be able to put a name to what was going on.”

Shortly after Rose was diagnosed, Adkins and her father decided it best that he continue to work to retain health benefits. So Adkins, who had just started a job in healthcare at the time, put her career on hold to become a full-time caregiver for her mom, whose increasingly disruptive behavior cast doubt on her ability to safely stay home alone.

“At the time I assumed I would take off for a few months and maybe get professional caregiving help shortly thereafter,” she said. “I wasn’t fully aware of the scope of what I was choosing to do.” Adkins has now been a full-time caregiver for the last eight years.

Early on, the challenges of the role became apparent to Adkins. For example, caring for a parent with a life-altering diagnosis significantly altered her career trajectory. “I initially started to panic a bit, but quickly remembered that I’m here because my mom needs me,” she said.

As time went on, Adkins felt her concerns over work grow, as did worries about her own health (worries exacerbated by her lack of employer-based health insurance). To find a sense of balance, she had to get creative. She started to use writing and music as therapeutic outlets and worked to improve her diet and exercise, boosting her energy and stamina, which in turn helped her care for her mom.

“Everyone’s care journey is different, and being able to learn coping mechanisms to deal with these things has been very, very helpful,” she said. “I think it’s something all caregivers need.”

Yet Adkins also emphasizes the feeling of isolation that comes with FTD caregiving – notably for younger adults whose peers, finding themselves consumed by early careers and newfound independence, may not understand.

“Being a millennial caregiver can be incredibly isolating because it doesn’t represent the quintessential American experience,” she said. “It can be really difficult to find people to relate to what you’re going through.”

Adkins, who recently decided to go back to school to earn a master’s degree at Georgia State University’s Andrew Young School of Public Studies, has immersed herself in new opportunities to do research and work around caregiving. She is involved in multiple projects and organizations that aim to make a difference in the caregiving field, specifically in improving dementia and care outreach to African-American communities, and by advocating for caregiver rights.

She has also launched her own organization to help raise awareness of millennial caregivers and the unique challenges they face. She hopes her work will help provide a sense of support and community for millennials and people of color.

“I would love to see a world where young adult caregivers, particularly those in marginalized communities, have the support they need,” she said. “I’m really passionate about filling in the gaps and am looking forward to opportunities to make a difference and a better future for folks.”

World FTD Awareness Week Begins Sept. 27

World FTD Awareness Week 2020, an annual event that brings together FTD advocates from around the globe, will take place from September 27 to October 4. FTD advocates worldwide will participate in the week’s events, including a 24-hour World FTD Marathon, which will feature FTD presentations from across the globe. World FTD Awareness Week is organized each year by World FTD United, an international coalition of FTD-focused organizations of which AFTD is a member. For more information, visit AFTD’s website.

AFTD Sponsors Virtual Dementia Care Summit

AFTD was a sponsor of the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. Hosted by the National Institute on Aging, in conjunction with the Department of Health and Human Services as part of the National Alzheimer’s Project Act, the Dementia Care Summit was moved to an all-virtual platform in 2020 due to the COVID-19 pandemic. The event took place over the course of three days in July and August. Among the scheduled speakers was Laurie Scherrer, a Pennsylvania woman living with FTD, who also spoke at the 2019 AFTD Education Conference.

I hope that this finds you and your family safe and connected during these last weeks of summer.

We know that for many, the COVID-19 pandemic has brought new challenges. Challenges for loved ones in nursing facilities, and overall stress and uncertainty, are weighing on us differently these months.

Know that you aren’t alone in your journey. AFTD offers expert information and resources, tailored to the challenges of this time. Our HelpLine (1-866-507-7222, info@theaftd.org) can provide guidance and connect you with resources. Virtual and in-person support groups led by AFTD support group volunteers can provide guidance and connection. And our private Facebook groups can connect you with peers who understand.  

With scientists and leading organizations across our field, AFTD is working to fund, catalyze and sustain research to better understand this disease, and advance the first treatments. While COVID-19 has brought new challenges to many research institutions, we remain hopeful about progress and breakthroughs in the months and years to come.

In a time of isolation for some, I want to encourage you to reach out and become part of this work. AFTD will be offering webinars throughout the year, to provide the latest information. We will also be providing new ways to get involved as a volunteer.

I’d especially ask you to consider taking part in one or more of several online campaigns we’re planning for World FTD Awareness Week (September 27 through October 4, 2020). Host a virtual Food for Thought event, or a small gathering with your friends and family if safety permits. Join a 24-hour World FTD Marathon, featuring webinars and presentations from around the world.

During that same week, a group of volunteers will be unveiling a special new FTD challenge designed to raise funds within our community and beyond it, and to share stories from families affected.

If you have the means, consider making a donation in support of one of these events and campaigns this September. I know that, for our volunteers around the country, it will be gratifying to know that they’ve reached out to others beyond their local communities. Any donation you make in support of AFTD’s mission – whether through one of these campaigns, or through the enclosed envelope – can help bring our programs to thousands of families in 2020 and beyond.

AFTD was founded through the resilience of families who faced FTD. In their resolve, they found a community and a shared purpose: to advance a future free of FTD. I hope that you will draw strength by being part of this community, and from making your actions and your voice heard within it. I wish you the best for the fall season ahead.

Sincerely,
Susan L-J Dickinson, MSGC
AFTD CEO

“Everyone’s FTD journey is different,” AFTD Ambassador Susan Meagher recently said. “If you are one of the primary caregivers, your opportunity to volunteer with AFTD may not come until after that part of the journey is over.”

Like her sister and fellow AFTD Ambassador Joanne Linerud, Susan did not become an AFTD volunteer until after their mother died of ALS-FTD in 2016. “We knew just how lonely the journey can feel,” Susan said. “The way we felt supported by AFTD – we wanted to support others in the same way and pay it forward.”

Susan Meagher and her sister, Joanne Linerud, both AFTD Ambassadors

Encouraged by Joanne, Susan began her current Ambassador role in early 2020. Like other Ambassadors, her goals were to speak publicly about AFTD, conduct outreach and provide FTD information to local health providers. She was especially eager to make connections with people who live in her local community in Montana. “I’m not afraid to put myself out there and say, ‘Hey, AFTD’s awesome.’”

But after the pandemic hit, Susan – like everyone else – found herself having to adjust her strategies in an ever-evolving new reality. “I’ve definitely had to shift my process as far as reaching out to medical professionals and spreading awareness,” she said.

In July, Susan hosted a Virtual Meet & Greet – a Zoom-based version of the popular AFTD volunteer activity, adapted for the COVID era. (See page 9 for more information on Virtual Meet & Greets.) “My goal was to let people facing FTD in Montana know that they’re not alone,” she said. One important way to do that, she said, was to share AFTD’s resources with them, including the AFTD website and its numerous publications and newsletters.

But, she added, “the next step is knowing that there’s someone in your area that you can call up – that’s really, really important.” For someone with FTD in their life, talking to someone who has lived similar experiences and is familiar with the same terminology can seem surreal, particularly after years of confusion in the lead-up to a diagnosis.

Overall, Susan says she is proud to represent AFTD as a volunteer. “I’m grateful that AFTD has put faith in me to help other people,” she said. “Allowing people who have had FTD in their lives to speak in the name of AFTD – there’s a lot of trust involved in that, and it feels very empowering.”

More than 600 people “attended” AFTD’s 2020 Education Conference, which, due to the coronavirus pandemic, was held as a series of webinars over the course of a month.

Between April 7 and May 7, AFTD presented five webinars designed to help families better manage the FTD journey during the unique and difficult circumstances presented by COVID-19.

All told, 634 unique viewers found help and shared hope by watching at least one of the AFTD Education Conference webinars.

The webinar series began on April 7 with “Coordinating & Managing FTD Care in a Changing World.” Jennifer Pilcher, PhD, founder of the healthcare consultation group Clear Guidance, discussed ways to manage an FTD diagnosis during a time of rapid and significant change.

The following week, AFTD Ambassador Corey Esannason presented “Self Care, Mindfulness and Remaining Positive.” She modeled useful breathing and movement techniques that can bring calm and focus to an increasingly uncertain time.

AFTD CEO Susan L-J Dickinson spoke with Bruce Miller, MD, director of the University of California, San Francisco Memory and Aging Center, for the third webinar, “Ask the Expert: FTD and COVID-19.” Dr. Miller, who is also a member of AFTD’s Medical Advisory Council, discusses how the two diseases intersect, and talks about the latest advances in FTD research.

In “The Playlist of My Life,” the Very Rev. Tracey Lind, who is living with primary Susan Meagher and her sister, Joanne Linerud, both AFTD Ambassadors progressive aphasia (PPA), presents a talk about the concept of “building a toolbox for FTD” – compiling aspects of FTD care that are person-centered, promote the dignity of the person diagnosed, and allow them to live their best lives.

Finally, in “Building a Future Free of FTD: AFTD’s Mission in a Changing World,” Dickinson and AFTD Board Chair David Pfeifer share highlights from the past year of AFTD’s work and present its vision for the future.

Originally scheduled to be held in Baltimore on April 17, the in-person AFTD Education Conference was canceled in early March, as the country began to gradually shut down due to coronavirus concerns.

All five webinars in the series are available to view at www.theaftd.org/aftds-2020education-conference-webinar-series. For a full list of conference sponsors, consult the Spring 2020 issue of AFTD News.

During these challenging and uncertain times, AFTD is extremely grateful for the steadfast commitment of our volunteers across the country. As the COVID-19 pandemic continues, we know many of our volunteers are anxious to resume their efforts to help advance our mission and make an impact.

Whether you are considering gearing back up to volunteer again, or you want to get involved by volunteering for the first time, there are ways you can help make a difference in today’s ever-changing environment. Whatever activity you choose, AFTD staff will provide you with support and guidance every step of the way.

The following are some of the ways you can help as a volunteer:

• Facilitate a phone or virtual support group for caregivers
• Plan and host a Virtual Meet & Greet with local families affected by FTD (see below)
• Participate in AFTD’s Annual Food for Thought fundraising campaign
• Join Charity Miles and raise FTD awareness and funds with every step you take
• Share your story on your Facebook page and through your social media accounts

It is important to acknowledge that even as different parts of the country move towards reopening, the trajectory of the pandemic is uncertain, and a risk still remains. Caregivers and people with FTD may face higher risk for COVID-19 infection, and/or developing complications if infected. The stress of caregiving can weaken immunity, and for persons diagnosed, FTD symptoms may make maintaining recommended hygiene guidance especially difficult.

Following is some guidance on how we will be leading and coordinating volunteer activities in the months ahead:

1) AFTD will prioritize virtual volunteer activities until safer conditions become more widespread.

We believe virtual volunteer activities are the safest and best option in the current uncertain environment. They can also have the added benefit of opening up new opportunities for connection, support, and awareness.

2) Face-to-face volunteer activities and events may be feasible in some situations.

In a changing environment, there will be circumstances in which AFTD will be promoting small in-person events and volunteer opportunities. In-person events and volunteer opportunities should only move forward if local, state and federal guidelines permit, and if risk can be mitigated for the volunteer, their family and the activity participants.

If you would like to learn more about the volunteer opportunities listed above and how best to conduct them safely, please contact your Volunteer Coordinator or email us at volunteer@theaftd.org.

In response to COVID-19, AFTD has developed a new volunteer activity to keep people in the FTD community connected while remaining at home: Virtual Meet & Greets. During a time when the isolation common to FTD may hit harder than ever, the flexibility and remote nature of this new activity will provide a vital space for all those affected to come together.

Virtual Meet & Greets are informal gatherings facilitated through Zoom, a free web-based video conferencing platform. They offer a safe space for members of our community to share their stories and local resources, learn about AFTD and its programs, and discover how to get involved.

All that volunteers need to host this event are a computer and a webcam. AFTD will work closely with volunteers as they plan their Virtual Meet & Greets, offering two new training tools and providing support every step of the way. AFTD looks forward to our compassionate volunteers hosting Virtual Meet & Greets!

“Amid social distancing and much of the population staying at home, connecting with others feels especially important right now,” says Annamarie Given, AFTD Volunteer Coordinator. “Our hope in developing Virtual Meet & Greets is to provide a meaningful, rewarding, and positive experience for our volunteers that also encourages connection with others. We would love to see Virtual Meet & Greets continue alongside our other volunteer activities.”

To learn more about how to host a Virtual Meet & Greet, please contact volunteer@ theaftd.org and your Volunteer Coordinator will reach out to schedule a time to talk through next steps.

Race Season

Prior to the COVID-19 pandemic, the AFTD-Team was able to meet for the Austin Marathon weekend in February. This year marked the second year that AFTD has been an Official Charity Team of the marathon, and it was another success! We had 29 members of our community, plus a few members of the AFTD staff, run and walk together to help spread critical FTD awareness throughout the streets of Austin. In addition, AFTD-Team members raised over $5,550 through the weekend’s efforts.

We would like to acknowledge and thank the AFTD-Team members who went the extra mile and fundraised for AFTD: Kacy Kunesh, Kristin Schaffe, Stacey Fletcher, Stephanie Grasso, Steven Long

Remembering Tom:

Jacquelyn Breneman, of Michigan, created a fundraising page in memory of her father, Tom P. Breneman, who passed away in June. Tom was 61 years old when he passed and had been fighting a multi-year battle with FTD. In lieu of flowers, the Brenemans asked their family and friends to send memorial donations to AFTD. Through the fundraising page, the family raised $5,920 to support AFTD’s work.

Tee-rific Time:

The Robert M. Hatfield Foundation hosted the Ninth Annual Quest for the Cure Golf Tournament at the Bardmoor Golf & Tennis Club in Florida. This year’s event raised $5,250, increasing their total tournament giving history to $63,150 donated to AFTD’s mission.

Crossing the Finish:

Brian Strohm, of Kansas City, MO, was set to run the Rock the Parkway Half Marathon & 5K on Saturday, April 4 in his hometown, until the event was rescheduled due to COVID-19. Prior to the date changes, he was able to raise $1,490 for AFTD’s mission and is now looking forward to running the race on a future date.

Colorway for a Cause:

Kristen Gillette, owner of Peg & Jane Yarn Co., hosted a Colorway for a Cause fundraiser where 10% of sales of all products between mid-February to mid-April went towards AFTD’s mission. This was in honor of her friend, Larry Largent, who was diagnosed with FTD in 2018. The two met in college back in 2007. The new colorway that Kristen designed is based off of Hatteras Island, off the coast of North Carolina, a special place to Larry, his wife Erica, and their three daughters.

Spring Bling Fling:

Corey Compa, an employee at Artis Senior Living Center in Huntingdon Valley, PA, helped to host a Spring Bling Fling event to raise funds and awareness for AFTD’s mission. The event included shopping new and gently used jewelry, accessories, handbags, and tchotchkes. The senior living center has a population of residents diagnosed with FTD, who were able to attend the event as well.

Charity Miles:

In response to the COVID-19 pandemic, and to offer our community a safe way to foster connection and support AFTD’s mission during this time, we have partnered with the Charity Miles app. This free smart phone app allows users to track their miles moved, turning workouts into a fundraiser for AFTD.

Since we began this initiative in April, our community has shown great dedication, support, and commitment to helping us raise awareness and funds during such a critical time for our work.

In the first two months on the app, our AFTD runners, walkers, and bikers were sponsored by the Mike Walter Catalyst Fund—for every mile a member completed, the Fund donated $1 designated towards support programs and grants. Thanks to all who participated in April and May, the AFTD-Team was able to raise over $47,000 to Charity Miles provide critical guidance, resources, and assistance to so many on the FTD journey.

Additionally, our AFTD-Team was able to raise more awareness and funds in July when we announced our sponsorship with Alector, Inc. Every mile that a community member logged on our behalf, Alector matched $1/mile up to 20,000 miles. In just 22 days, our Charity Miles athletes achieved our July goal to help secure $20,000!

AFTD thanks Alector for their generous donation, which will advance AFTD’s mission – bringing help and support to improve the quality of life for people affected by FTD and driving research to a cure.

To all our walkers, runners, and bikers logging miles on the Charity Miles app, thank you for your continued support through this initiative!