In October, AFTD published Frontotemporal Degeneration: A Voice of the Patient Report, which summarizes and analyzes data and perspectives from more than 1,750 people living with FTD, care partners, caregivers, and other family members.

The report comprises information shared by participants in the AFTD-hosted Externally Led Patient-Focused Drug Development (EL-PFDD) meeting, held in March 2021. It also includes data from the pre-meeting FTD Insights Survey, conducted by AFTD and the FTD Disorders Registry.

The 75-page document provides the U.S. Food and Drug Administration (FDA) quantitative and qualitative data outlining the lived experiences of persons who are directly affected by FTD. It is designed to help FDA regulators understand the experiences and priorities of people living with FTD disorders and what they and their care partners/ caregivers most want to see in treatment options. The FDA uses Voice of the Patient reports as a source of information when making decisions about new treatments and therapies.

The report is available for download from AFTD’s website. It offers key insights on the broad range of FTD symptoms, which symptoms appeared first and which were the most challenging, impacts on quality of life, experiences with treatments, and hopes for future treatments.

Helen, who participated in the EL-PFDD meeting, described the pain of watching her husband Geoff’s language decline because of his primary progressive aphasia: “I have watched the steady deterioration in his language. The ability to find words, his reducing vocabulary, slower listening processing time, the ever-reducing appetite for emailing, telephoning, reading, and speaking. His vocabulary is now just a handful of words.”

Jill from New York relayed the story of her late husband Deven, who was posthumously diagnosed with behavioral variant FTD: “Strangers from other countries asked Deven for money, and he said yes again and again. Deven disregarded increasingly strident warnings from me and from other family and friends. He made and repeatedly broke promises to stop hemorrhaging what became thousands of dollars to his online friends.”

The report also outlines the steps families are willing to take to participate in FTD research initiatives and clinical trials. Jessica from the U.K., who shares a C9orf72 mutation with her FTD-diagnosed mother, said that “I’m doing everything I can in my power to help fight this. I want researchers to know that I am available” to participate in research.

Visitors to AFTD’s website can now find a comprehensive new section on FTD genetics. This resource offers guidance on everything from the most common genetic variants associated with FTD, to guidance on genetic counseling, no-cost testing options, and understanding results (theaftd. org/ftd-genetics).

Multiple studies since 2009 have identified 40 percent or more cases of FTD as familial. The “FTD Genetics and You: Learning More” page provides an overview of the three genes — C9orf72, GRN (progranulin), and MAPT (tau) — that account for a majority of inherited FTD cases.

The FTD Genetics section also includes a page on genetic counseling and how it can be beneficial in understanding genetic links to FTD, and whether to pursue genetic testing. The “Genetic Counseling” page summarizes the value of a genetic counselor, the goal of a genetic consultation, and what a genetic counselor’s risk assessment report entails.

The “About Genetic Testing” page provides in-depth insight into how genetic testing works and what happens during the process. While genetic testing can provide valuable information, and offer a better understanding of an individual’s risk of developing symptoms in the future, it does come with associated risks, such as feelings of anger, depression, increased anxiety, or guilt about the test results, as well as potential insurance repercussions.

The genetic testing process can be financially burdensome to many. The “No-Cost Genetic Testing” section can help individuals considering testing to learn more about their options, such as sponsored testing programs, and includes a guide to finding available no-cost testing.

Joseph C. Marquez, M.D., joined AFTD’s Board of Directors earlier this year. The founder and head of the department of urology at a large multispecialty practice in Seattle, Dr. Marquez brings clinical expertise and personal experience about how FTD affects the body.

“As a urologist, I encounter patients with FTD through problems they have with incontinence,” Dr. Marquez said. “One of the biggest challenges that [FTD] caregivers have is managing incontinence, and I saw that on a personal level with my own aunt.”

Dr. Marquez watched his beloved aunt, who he said was like “a parent in many regards,” begin to change due to the unyielding symptoms of her behavioral variant FTD. She was 59 when she got her diagnosis.

“[My aunt] was a very lively, social person who traveled the world, had many interests, and made many friends,” he recalled. “I was struck by how – as the disease progressed and her ability to communicate declined – those social connections started to fall apart.”

Dr. Marquez was familiar with FTD prior to his aunt’s diagnosis, and immediately sought out specialists who could provide more answers.

“I was already clued into the diagnosis and that’s why I knew to specifically search out centers like the University of California, San Francisco,” he said. His aunt began participating in clinical and observational trials at UCSF.

Following his aunt’s death in 2017, Dr. Marquez, along with his mother, uncle, and cousin, began participating in observational trials at UCSF to continue to advance genetic FTD research.

“The privacy concerns around genetic disease of all sorts, but especially dementia, as well as the stigma and the potential for genetic discrimination – [these] are all topics that I think about deeply,” Dr. Marquez said.

Dr. Marquez intends to apply his knowledge of the clinical aspects of FTD to the Board, along with his general understanding of molecular biology and genetics.

“I hope to be able bring this information to the Board and be an influence around the boots-on-the-ground clinical things people are dealing with in FTD,” he said. While on the AFTD Board, he also hopes to be an “influence to clinicians of all specialties in raising awareness about FTD and the varying presentations of it.

AFTD Expands HelpLine and FTD Content Accessibility

Two new AFTD resources provide FTD information and support to people whose first language is not English. “¿Qué es la Degeneración Frontotemporal (DFT)?” is a downloadable Spanish-language resource that provides a broad overview of FTD, and explains in more detail the symptoms of each FTD disorder. Download this booklet in PDF format at theaftd.org/what-is-ftd/diseaseoverview. Additionally, AFTD’s telephone-based HelpLine (866-507-7200) now offers translation services in over 200 languages, including Spanish, Mandarin, and Hindi.

Diagnostics Accelerator Grant and FTD Insights Fellowship Awarded

AFTD is funding two projects that will further our understanding of FTD. Megan Barker, PhD, of Columbia University Medical Center, was awarded an FTD Insights Fellowship. Dr. Barker will analyze data collected through the FTD Insights Survey – conducted in 2020 by AFTD and the FTD Disorders Registry – to learn from those with lived experience of FTD. Meanwhile, a team of researchers at the Foundation for the National Institutes of Health, led by Wesley Horton, MS, received funding through the Alzheimer’s Drug Discovery Foundation’s Diagnostics Accelerator initiative, supported by AFTD and other partners. Mr. Horton and the project team will evaluate and compare methods used to measure blood levels of neurofilament proteins, a potential biomarker for identifying individuals with MAPT, GRN, or C9orf72 mutations, which are likely to progress to symptomatic FTD.

“This disease can be so insidious. Telling your story over and over, only to have no one believe you – you feel pushed away, ignored, and isolated.” – Melissa Fisher, FTD care partner

Following several years of misdiagnoses, Melissa Fisher’s father, Mark Moriarty, was diagnosed with behavioral variant FTD in 2018. “People see a physically healthy person, so they don’t believe us as caregivers that he has an illness. It makes it incredibly difficult for people living with FTD to access proper care,” she said.

While helping her mother navigate Mark’s diagnosis, Melissa lost track of how many times she described her father’s symptoms and behaviors while getting her family the answers and assistance they needed. “I’ve spoken with police officers, psychiatrists, social workers, insurance agents, nurses, neurologists, and so many others! I had to convince each one of them that something was wrong or explain to them what this disease is.”

This experience, which she says has caused an enormous amount of stress and anguish for her family, has opened her eyes to a pervasive lack of understanding about FTD.

Through her family’s journey, Melissa realized that others confront similar challenges, and she is determined to find a way to help improve the experience for all people facing the disease.

Today, she volunteers as an AFTD Ambassador, is a Grassroots Event fundraiser, and is running in the New York City Marathon in support of AFTD. She strongly believes that educating healthcare professionals and care service providers will lead to necessary changes to provide better support and resources for FTD caregivers, care partners, and their loved ones.

Melissa is all in to #endFTD. “This is a disease of the collective. It touches all of us. I will do anything to help the next family not have to go through the nightmare we did.”

Will you join Melissa to help improve the quality of life of people impacted by FTD? A tax-deductible gift of any amount advances AFTD’s work to raise awareness, educate the medical community, and provide resources and support to all affected by this disease. Simply visit theaftd.org and click on the Donate+ button at the top of the page.

AFTD collaborated with the international coalition World FTD United to produce a Global Conversation on FTD, a fourhour long video of vital information and perspectives from around the world that premiered during World FTD Awareness Week 2021 (Sept. 26 – Oct. 3).

People and families affected, health professionals, and researchers submitted short videos and stories, capturing the lived experience of FTD, offering care and support strategies, and sharing reasons for hope.

Visit worldFTDunited.net to watch the Global Conversation.

Also during World FTD Awareness Week, AFTD partnered with New York State Senator Michelle Hinchey for a virtual information session on FTD. The session followed the recently adopted resolution, sponsored by Sen. Hinchey, designating Sept. 26 through Oct. 3 as FTD Awareness Week in New York.

“For the first time ever, the state of New York has recognized FTD Awareness Week through a resolution that we put forward because we believe that it’s incredibly important for more people to understand this disease,” Sen. Hinchey said.

AFTD continued to promote FTD awareness with ads placed in the New York Times. Throughout World FTD Awareness Week, the Times featured digital and print ads, created with input from AFTD volunteer Jody Zorn and designed to bring FTD awareness to millions. Print ads appeared in the Sept. 26 and Oct. 3 Sunday print editions, and visitors to the Times website via a mobile device saw a powerful set of digital ads on Sept. 29.

AFTD’s flagship grassroots fundraising and awareness campaign, Food for Thought, ran from Sept. 26 to Oct. 10. The campaign returned for its ninth year, raising critical funds in support of families affected by FTD.

Meanwhile, the #FTDhotshotchallenge, a community-driven grassroots campaign, made its return for the second year -- this time in official partnership with Food for Thought. The challenge, created by AFTD volunteers in 2020, rallied AFTD supporters and FTD advocates to raise awareness and funds for AFTD’s research initiatives. Participants were encouraged to film themselves taking a shot of hot sauce, tag five friends to join, and donate to support AFTD’s mission

Looking to get involved and help support AFTD’s mission? Join dedicated volunteers from across the country, helping families affected by FTD find support, resources, and hope in their communities.

Volunteering with AFTD gives you the opportunity to:

• Connect with others affected by FTD by hosting an in-person or virtual Meet & Greet
• Support others on the FTD journey by facilitating a support group, whether in person or virtually
• Share your story, FTD information, and AFTD resources by staffing a table setting at a local health fair, conference, or other community event
• Raise critical funds and awareness in support of AFTD’s mission
• Educate healthcare professionals

AFTD’s Volunteer Network also hosts a series of virtual gatherings, providing the chance for volunteers to connect with each other, engage with AFTD staff, and learn new skills that not only support your volunteer efforts but your professional and personal work as well.

All of AFTD’s activities can be done virtually or in person, depending on current and local guidelines and your own comfort level. Come join AFTD’s volunteer network and make a difference today! Take a look at this list of AFTD’s volunteer opportunities, or take the first step by visiting our website at theaftd.org/get-involved/volunteers-network.

Food for Thought 2021

AFTD’s 9th annual Food for Thought campaign comprised 42 events in 31 states (plus Canada) and raised $100,000! Below are the events that raised $1,500 or more:

It’s Electric:

Steve Bellwoar, a Pennsylvania-based AFTD Board Alumnus, hosted the eighth annual Colonial Electric Food for Thought event virtually this year, sharing a video message of himself and AFTD’s CEO Susan L-J Dickinson, and asking his past attendees to consider continuing supporting AFTD’s mission. As a thank you to supporters this year, Steve and his colleagues look forward to treating them to a meal individually, and hopefully seeing everyone altogether next year in person! The event raised $60,168, bringing the grand total to $629,540 raised over the past eight years, continuing its title as our flagship Food for Thought event.

Team McGarvey:

Jim Capobianchi and the McGarvey family hosted an event in their Pennsylvania hometown, featuring delicious food and good music. The event included a silent auction of 20 donated gift-basket items and a 50/50 raffle. More than 150 people attended and helped to raise $12,997.

Garage Sale:

Fran Jensen and her family in Alabama asked their local community to donate items to be sold at a garage sale to benefit AFTD’s mission. At the event, the Jensen family educated the community about FTD, shared how the disease affects their family, and explained AFTD’s mission. Through sales and direct donations, supporters raised $4,200.

Cooking with Kyle:

Kyle Jackson in Illinois hosted his second annual virtual cooking class, called “Pappardelle Portobello Ragu Pasta Cooking Class & FTD Education.” Thirty families tuned into the livestream to cook a tasty meal and learn about FTD together. Kyle kicked off the Zoom cooking class with a brief overview of FTD and how it has impacted their family. Kyle raised $3,256 through the event.

Having a Souper Time:

Kyle Walchak hosted a soup contest in Pennsylvania between friends and family, and saw an impressive 52 people participate. Through an entry fee, participants raised $3,136 to support AFTD’s mission. Guests learned about FTD, and then voted on their favorite soups, with prizes awarded to tastiest creations.

Healthy Snacks & FTD Facts:

Ryan Windhorst in Illinois posted his online fundraiser on Facebook with daily facts about FTD throughout the Food for Thought campaign. He also partnered with a local food prep business, Namken Nutrition, which donated a portion of all healthy protein bar sales to the fundraiser. In total, $2,978 was raised to support AFTD’s mission.

Remembering Gary:

For their fourth annual fundraiser, the Anderson family of Minnesota went virtual, encouraging their friends and family to donate in honor of their loved one, Gary, who passed away in 2019 after living with FTD. Through the event, they raised $3,232 in Gary’s memory, and in support of AFTD’s mission.

Pickles for Pick’s Disease:

Philadelphia’s Fishtown Pickle Project joined the campaign for its second year by donating a portion of all pickle sales towards AFTD’s mission. They additionally reached out to other local businesses, and each created a different pickled creation and donated a portion of sales. Altogether, the fundraiser raised $2,847.

Kara’s Krew:

Debra Ford, Dawn Kirby, and Kirsten and Jocelyn Jewell teamed up with a local restaurant, Joe’s Pizza in Paris, Illinois, for their Food for Thought fundraiser. Customers ate their favorite food (pizza!) and learned about FTD. In the restaurant, the family displayed a board with information about their loved one living with FTD, Kara, who is 32 years old. Together, the family raised $1,650 for AFTD’s mission.

IHO Ned:

Utah-based AFTD Board Alumna Bonnie Shepherd has joined our Food for Thought campaign every year since its inception. This year she keep things simple and safe by created a fundraising page on Classy, which she generously kicked off with a personal donation. Having raised a total of $1,515 this year, Bonnie looks forward to getting back to her in-person events in 2022.

TIMFEST IV:

Kathy LaFone and Sara LaFone hosted their fourth annual TIMFEST, an event honoring their beloved husband and father, Tim LaFone, who passed in 2015 and had been living with FTD. Friends and family gathered to put FTD “on its last leg” while listening to music and enjoying delicious snacks. Online and in-person donations raised $1,550 for AFTD’s mission.

 

Thank you to all the additional hosts who raised funds and awareness to support AFTD’s mission:

Alector Inc., Amanda Hall, Amy Pohl, Amy Shives, Beth Andrews, Brandee Waite, Deanna Lindberg, Denali Therapeutics, Esther Harvey, Jerry Horn, Joanne Linerud, Julie Edwards, Karen Smith, Lori Friedman, Lynda Nagle, Marian Grems, Melanie Axel Lute & Kate Koisor, Melissa Dube, Nicole DeLeve, Patrick Guitterez, Terry Pontious, Terry Walter, The Caregiver Solutions Info Show, The Pang Family, The Remember Me Podcast, UVA Department of Neurology, Veronica Wolfe, Wave Life Sciences, Zoy Kocian

AFTD would like to thank the seven Food for Thought liaisons that helped make this national campaign a success!

Cass Hanlon, Elaine Rose, Jen Morabito, Maureen Stroka, Traci Saylor, Meghan Roscoe, Ron Jackson

 

The Big 1-6:

The sixteenth annual George F. Sidoris Memorial Golf Outing was held on July 18, 2021, at the Lost Nation Municipal Golf Course in Willoughby, Ohio, and raised $34,091 for AFTD’s mission. This event is AFTD’s longest running grassroots fundraiser and has donated over $277,650 in total! Congratulations to the Sidoris Family and thank you for your continued and notable support.

Tee-rific Time:

The fifth annual Crusade for a Cure Golf Tournament, hosted by AFTD Ambassador Deb Scharper, was held on September 4 at the Sunny Brae Golf Course in Osage, Iowa, and raised $8,000. Over the past four years, Deb’s tournament has donated $39,000 to AFTD’s research initiatives.

Celebrating Carl:

The sixth annual CWM Golf Outing was held on July 10 in Michigan and raised $5,064. Hosted by the Morettis and Marcys, the day celebrates and remembers Carl Moretti, who passed away from FTD in 2015. Over the past six years, the event has raised a total of $16,349 for AFTD and our mission.

50/50:

AFTD Ambassador Deb Scharper hosted a table setting on behalf of AFTD where she also conducted a 50/50 raffle and collected $2,100 in donations towards AFTD’s mission. She additionally educated community members about FTD and how the disease affects families that experience the diagnosis.

A Par-Tee for Tami:

Suzanne and Calvin King hosted the fifth annual “Tami Sue Golf Outing and After Party” on September 11 in memory of their daughter, Tami, who passed away from FTD in 2016. This year’s event raised $2,000, making their total contributions to AFTD since the inaugural event $10,180.

Bill’s Best 5K:

Bill’s Best Brewery in Glenside, Pennsylvania, held a 5K on October 9. Entry was $30 a person and participants received a t-shirt and one pint of beer. Bill’s Best covered 100% of the costs so that 100% of the funds raised went to AFTD. Through the event, they raised $1,310 for AFTD’s mission.

Running for a Cure:

Papus Keita ran the Cleveland Marathon on October 24 in honor of his father-in-law, Ken Young, who is living with FTD, and for all who are living with an FTD diagnosis. Papus chose to fundraise for AFTD’s mission and raised $1,033 for his participation in the race.