Archives August 2024

The FTD journey is difficult for families due to its distressing symptoms and the sweeping life changes that are often required to adapt to them. Families often find that there is little support for those affected by FTD because not enough people know about it. Chris Tann, who is currently living with FTD, and Debra, his wife his wife of 35 years and care partner of 9 years, recently sat down with AFTD to share their lived experience and offer advice for families living with FTD and other dementias. The couple believes they have a responsibility to educate people about FTD to help enhance the lives of those living with FTD.

“I think people should be more interested in learning about dementia because it’s very prevalent in the world,” Chris said to AFTD. “One of the major things we need to do is get this information out to everyone. Regardless of where they are, how they received it — not everybody is going to be on Zoom or looking online.”

Finding Support

FTD creates unique challenges with its symptoms, but Chris told AFTD that he has been handling his diagnosis well. However, he said getting diagnosed was a journey with its own difficulties. The first signs began to show in 2015 as behavioral changes, such as Chris leaving things in odd places. Chris said “I’m not the only one who lives in the house, so I didn’t think it was me. My wife said it was, so I just went with that.” Acknowledging what Chris said, Debra said he was not able to recognize his dementia and limitations, an FTD symptom called anosognosia. 

When she first noticed the changes in Chris, she did not know much about FTD, said Debra. “But what I did know was two things: one, this was medical — I had no idea how, but I just knew.  Two, because it was medical, I had to be in for the long haul, but I didn’t know what I was contending with.”

Chris initially sought help at Mayo Clinic, where he spent hours participating in screenings before receiving an initial diagnosis in 2017 of mild cognitive impairment (MCI). His physician prescribed medication that caused him not to feel like himself and made it hard for him to function at work. Because of this, Chris and Debra decided to find a second opinion. After two years of uncertainty, they finally found availability at the FTD clinic at Vanderbilt University, where Chris was diagnosed with FTD. They were fortunate, Debra found a local neurologist in rural southern Georgia that was very knowledgeable. After 2 years of health care for Chris and engagement with Debra, she diagnosed him with FTD in 2019. While thankful for an answer, their relationship was short lived as Chris’ neurologist relocated her practice. According to Debra, “she was God sent.”

The journey continued for Chris and Debra but this time, they had a formal diagnosis of FTD. Debra again searched the literature for a neurologist. She found a neurologist at the FTD Clinic at Vanderbilt Clinic. The doctor at Vanderbilt understood FTD, said Debra. “He did his battery of testing and was very assertive and knowledgeable. It was a blessing to run into her in rural South Georgia.” Although the drive to the clinic took seven hours, Debra said getting Chris to a specialist who was knowledgeable about FTD was worth it. “[FTD] is so unique and is often misunderstood, so I needed him in the most capable and competent hands possible.” And for others who may be searching for a diagnosis, Debra strongly recommends searching for availability at research hospitals.

Education is Key

Debra eventually discovered a support group called Black Dementia Minds, which is associated with the National Council of Dementia Minds. The group acknowledges that everyone that has dementia experiences it differently, and that it is important for Black/African American individuals with a diagnosis to have a space to seek support from one another.

“[Black Dementia Minds] is a beautiful family,” Chris said. “We call ourselves a family because there are different people with different dementia types, and we can discuss, relate, and understand each other and what we’re going through.” He and many members of the group also take part in advocacy, speaking digitally at venues like colleges and sharing what it is like to live with dementia.

“We think it’s a beautiful thing because we’re able to talk to people,” said Chris. And the audience enjoys the presentations because, “they’re able to talk to someone who is actually living with dementia and who can explain things.”

Chris’ dedication to advocacy goes beyond his work with Black Dementia Minds. He and Debra told AFTD their faith provides support as they navigate FTD, and Chris talked about drawing on his personal relationship with God as a source of strength. He also discussed working with Alter, an organization dedicated to working with faith communities to create inclusive, dementia-friendly environments. Chris initially met Alter’s founder, Fayron Epps, PhD, RN, through Black Dementia Minds and went on to speak at the organization’s summit. 

Debra agrees with Chris about the importance of advocacy, and she underscored the significance of education overall. “Education is the key,” she said. “My life’s work in the space is to educate. As a dementia care partner, advocate, and educator – wherever I am and whatever audience I have the privilege to engage with, I make sure that I recognize and underscore that all dementia diseases are important.”

She also stressed the importance of self-care for care partners. “Caregivers and care partners endure an enormous amount of responsibilities,” Debra said. “Candidly speaking, being a FTD carer is not easy, which is why a care team for Chris is quintessential. She went on to say she has an obligation to “take supreme care of myself.” Indeed, Debra encourages all care partners to practice mental, social, financial, physical, emotional, and spiritual selfcare and says, “These domains create opportunities of liberation to live a life of hope on the FTD journey.”

More than 20 years ago, siblings Christine and George J. Sidoris first noticed troubling changes in their father’s behavior during a family gathering. “Normally, when my brother and his family visited, my father was gregarious and the life of the party. This time, we noticed he wasn’t socializing,” shared Christine. Their father also started to display poor decision-making and demonstrated OCD behaviors.

Family members thought these changes might have been related to depression, but when his symptoms progressively worsened, they encouraged their father to seek medical advice. Following a CAT scan, a neurologist diagnosed George with Pick’s disease, now known as FTD. He was 70 years old.

“From that point on, it was a steady decline,” remembers Christine. With their father’s diagnosis, George turned to the internet, “using a dial-up line,” to learn more about the disease. Through an online bulletin board, George found information that “was invaluable. It gave us a good awareness of what to expect.”

Shortly after their father passed away at the age of 75, the Sidoris’ reached out to AFTD founder Helen-Ann Comstock to learn more about the young organization, which had been founded in 2002. Inspired by a friend’s charity golf outing for his daughter, George began planning an event to honor their father and fundraise in support of AFTD.

In 2006, a year after their father’s passing, George and Christine held the first GFS Memorial Golf Outing. Despite inclement weather, “we had approximately 60 golfers and raised a little over $9,000,” said George, noting their appreciation for all who chose to play through the rain.

In addition to working with Christine to host the golf outing each year, George served on AFTD’s Board of Directors from 2007-2009. With every tournament, the Sidoris’ learned lessons they willingly share with others who want to host fundraising events. They stress the importance of early and open communication with participants.

“Set a deadline,” recommends George. “We create checklists and find options to keep the costs down. We give prize money for a variety of golf games; however, many winners choose to donate their prize money back to the GFS Memorial & AFTD’s mission.

The siblings are thankful for growing participation at their tournament, noting that greater FTD awareness – due in large part to the announcements about Bruce Willis’ and Wendy Williams’ diagnoses – has helped their efforts. “People are so connected now because they recognize the disease more,” said George.

For their 2024 event, the Sidoris’ had 40-hole sponsors, 140 golfers and raised more than $65,500—a tournament record, which brings their grand total raised for AFTD to $438,750! “It’s something that George and I do to raise awareness and donate funds for drug discovery,” said Christine. “The feedback we get is overwhelmingly gratifying, but our ultimate goal is to make a difference and hopefully one day, we can say that we were part of the cure.” Over the years, the growing Sidoris family has gotten involved in the planning and hosting, including their children, grandchildren and even great-grandchild!

Click here to read more about the annual GFS Memorial Golf Outing, with next year’s event already scheduled for August 2.

Debra Niehoff, Kim Jenny, and Shana Dodge from AFTD and Sweatha Reddy from the FTD Disorders Registry attended the Alzheimer’s Association International Conference (AAIC), which took place in Philadelphia starting July 26, 2024. AAIC welcomed more than 9,000 attendees from 93 countries and included sessions and posters on the science of Alzheimer’s Disease and related dementias, including FTD. Sessions covered topics such as basic science and pathogenesis, biomarkers, clinical manifestations, drug development, public health, and dementia care. Dr. Dodge presented on data collected by AFTD and the FTD Disorders Registry on FTD care partner perspectives on clinical research. She noted that as FTD clinical trials typically require co-participation of a study partner, care partner perspectives on research are critical to understanding how to support people participating in clinical research. AAIC also gave AFTD staff the opportunity to meet and network with other patient advocacy organizations, government agencies, academic researchers, research funders, biopharmaceutical companies, and people with lived experience of dementia.

Learn more about AAIC 

In a recent interview with Neurology Live, Aviado Bio chief medical officer David Cooper, MD, discussed the company’s Phase 1/2 ASPIRE-FTD trial. Dr. Cooper shared how the company’s AVB-101 gene therapy worked, and he outlined what criteria the study would need to meet to be successful.

The ASPIRE-FTD trial is focused on treating a specific type of genetic FTD caused by an inherited variation of the GRN gene. In FTD-GRN, the body’s ability to produce a protective protein called progranulin is suppressed, which can lead to abnormal accumulations of the protein TDP-43 in the brain, one of the proteins that forms abnormal accumulations in FTD.

“The goal of the study is to restore levels of progranulin in the brain, potentially slowing or stopping the progression of FTD-GRN,” Dr. Cooper said. “AVB-101 is delivered as a one-time treatment administered directly to the thalamus in an MRI-guided neurosurgical procedure.”

Dr. Cooper highlighted that delivering AVB-101 to the thalamus avoids the protective blood-brain barrier and pial membrane, helping to reduce the required dose. Pre-clinical studies not only showed that this method of administering the gene therapy was safe, but that AVB-101 can restore progranulin levels to the brain cortex.

Reflecting on what the ASPIRE-FTD trial would need to accomplish to be considered successful, Dr. Cooper noted three main goals:

• Demonstrate the safety of AVB-101 as a one-time FTD-GRN treatment.
• Identify a dosage that restores progranulin levels.
• Evaluate the potential impact of AVB-101 on the progression of FTD over a 5-year follow-up period.

Dr. Cooper acknowledged that FTD is a challenging disease to work with, which he said is why the unmet need remains high. However, he noted that AviadoBio’s approach has the advantage of being directly administered to the brain, which resolves some challenges associated with treatment.

“We are confident that targeted delivery of gene therapy will be a game-changer that overcomes the challenges of both crossing the blood-brain barrier and the unwanted systemic exposure that comes with administration into the cerebrospinal fluid (CSF),” Dr. Cooper said. “Delivering gene therapies either directly into the brain itself or to the CSF that surrounds it puts the gene therapy on the brain side of the blood-brain barrier. Putting the gene therapy directly into the brain has the advantage of the therapy staying in the brain.”

Speaking of the potential of gene therapies, Dr. Cooper also noted, “The difference in patients’ lives could be huge, as we’ve seen recent gene therapy approvals that are changing treatment paradigms. By replacing or modifying gene function, disease progression can be halted or potentially even prevented.”

The ASPIRE-FTD opened its first US trial site in July at Ohio State University’s Wexner Medical Center. The trial is currently recruiting people between 30-75 years old who carry a pathogenic GRN mutation and show symptoms of either behavioral variant FTD or primary progressive aphasia. For more information on ASPIRE-FTD, visit the clinical trial’s webpage or its clinicaltrials.gov page.

Are you interested in participating in research? Join the FTD Disorders Registry to not only receive updates on participation opportunities, but to also contribute your lived experience with FTD, which will help guide researchers.

With FTD Awareness Week quickly approaching, we asked AFTD advocates to help us obtain a resolution or proclamation in every state, and the community has definitely risen to the occasion. Thanks to our advocates, we have a proclamation and/or resolution recognizing FTD Awareness Week in 9 states, with another 18 states not far behind.

FTD Awareness Week (September 22-29) helps spread awareness of FTD nationwide. Back in May, State Sen. Michelle Hinchey led the way with a resolution in New York, which was quickly followed by AFTD advocate Wanda Smith, who obtained a resolution in California. In June, advocate Jeanne Cestone successfully obtained a resolution in Delaware.

Currently, advocates are working towards resolutions in Arizona, Arkansas, Colorado, Hawaii, Maryland, Massachusetts, New Jersey, Ohio, Oklahoma, Oregon, Pennsylvania, Tennessee, and Wisconsin. In many of these states, a successful resolution is in the very near future.

AFTD advocates have also made significant efforts in achieving proclamations, beginning with AFTD Ambassador Debbie Elkins, who led the way in obtaining a proclamation in West Virginia. Ciarra Holliday Hammack of Oklahoma and Carin Hawkins of Maryland soon followed with their respective successes. Kerri Engebrecht obtained a proclamation in Tennessee, and just last week, Bill Behrendt and Jack George found success in Ohio with proclamations issued by the state and the city of Lima. Even more recently, Billie Klesch-Sheeran obtained a proclamation in Texas, and thanks to AFTD Ambassador Dawn Kirby, Paris, Ill., will be announcing their proclamation in early September.

These proclamations are just the beginning. AFTD Advocates have requested proclamations in Alabama, Arizona, Colorado, Georgia, Hawai’i, Idaho, Illinois, Iowa, Massachusetts, Michigan, Minnesota, Nevada, New Mexico, New Jersey, North Carolina, Oregon, Pennsylvania, Virginia, Washington, and Wisconsin.

We are beyond grateful for your contributions thus far and want to keep the momentum going! If you would like to obtain a proclamation or resolution in your state, contact [email protected] to get started. For further information and instructions on obtaining a proclamation or resolution, please check the most recent AFTD Advocacy Webinar. To stay informed of AFTD’s advocacy initiatives, become an advocate today! 

Become an Advocate

Together, we have made strides toward a more educated and informed community, and this is just the beginning.

AFTD Brand Influencer Nicole Petrie shared her family’s FTD journey with host Lisa Opie on the podcast Miss Represented earlier this year.

Petrie is a model, activist, and entrepreneur, and while she is proud of all her roles, the one she takes most seriously is being a care partner for her mother, Cheryl, who was diagnosed with FTD when Petrie was in college.

Spreading FTD Awareness

In the podcast episode, Petrie and Opie discuss how being in the public eye has given her a platform to spread awareness about FTD through her social media channels, where she highlights her experiences as a care partner

Petrie has often posted on social media about her career, but she did not go viral until posting a TikTok in which she accidentally brushes her mother’s hand. Viewers noticed her mother reacted in a way that a neurotypical person may not react, and they had questions. The video took off, with more than a million views in 24 hours.

Petrie has realized that speaking to other families dealing with FTD is a privilege, though she says it does not always come easy. “It’s not super comfortable to talk about my mom’s diagnosis, to talk about the hardships of the day-to-day,” says Petrie. “But I know there are millions of people going through the same thing and by talking about it, I’m making them feel less alone.”

Selfcare and Career Projects

As a care partner herself, Petrie understands the necessity of selfcare. To reduce her risk of developing FTD and to support her mental health, she became a vegan eight years ago and regularly goes to the gym. She also recognizes the need to have something to work toward, so she created a clothing line aimed at caregivers.

“My dad owned a small motor sports business my whole life, and I watched [my mom] making embroidered merch for him to sell in the store,” she says. “So, I was really inspired to create some designs and put them on t-shirts and bags … where anybody, really, but especially caregivers, can wear them out and show the pride of being a caregiver. The main message of it is, ‘The Heart of a Caregiver.’”

Caring for Her Mom

Petrie continues to model and is exploring other career opportunities, but she sees her primary role as helping to care for her mother and supporting her father, who is also a full-time care partner to Cheryl. She also recognizes she can be a role model for other people in the public eye who are trying to expand their reach through social media. “Vulnerability is key,” she says. “There is something that everyone is going through. There is something that everyone wants to learn and grow and get better at. And if you are able to provide some of that for someone,” said Petrie, “do it.”

FTD is a complex disease with emotional and practical challenges that can be as isolating as they are overwhelming. Finding a support group can provide you with a safe space to share your thoughts with others who understand and trade resources for the journey ahead. AFTD’s HelpLine can support you and answer any questions you have about FTD; contact the HelpLine at 1-866-507-7222 or [email protected].

AFTD has just launched a new page designed to simplify your search for answers. We added an FTD Support Group and Diagnostic Center Locator, which includes a map that allows you to search anywhere in the United States, and clickable icons reveal the details for each location.

The Interactive Map

Displays:

• Support Groups (local, regional, or national), which meet once a month and are led by AFTD-trained volunteers or organizations who understand FTD. They foster supportive group discussions regarding approaches to care, changing relationships, safety, local resources, grief, self-care, etc.
• FTD Diagnostic Centers that can help with diagnosis, guidance, and connections to research opportunities. The professionals affiliated with these centers are among the most experienced in diagnosing and treating FTD.

New Support Groups

The new page also includes a dynamic list of national Zoom-based support groups categorized by variant and care partner characteristics, as well as two groups for people with FTD.

AFTD is excited to introduce three new support groups!

• The LGBTQIA+ Caregiver Support Group meets every 3rd Thursday of the month, 6:30 pm – 7:30 pm ET.  LGBTQIA+ people living with or caring for a loved one with FTD face compounding
  stressors unique to their population. AFTD is committed to providing a safe, affirming environment to access resources and psychosocial support for care partners while navigating the FTD journey, with people who understand their lived experiences.
• The Care Partners of People with PSP Experiencing FTD Behaviors (AFTD & CurePSP) Support Group meets every 2nd Wednesday of the month, 6 – 7 pm ET.
  In a joint affiliation, AFTD and CurePSP will offer a dedicated space for care partners whose loved one has received a diagnosis of PSP and is also experiencing the behavioral changes of FTD and/or has been diagnosed with PSP-FTD. And official FTD diagnosis is not required to join this group.
• The Living Well with PPA Support Program begins September 21, 2024.
  Are you newly diagnosed with PPA? A new diagnosis can leave people seeking a place to process and learn together. Facilitated by two AFTD Support Group Volunteers, this six-week program creates space and a supportive environment to discuss aspects of living well with PPA. Topics will include an overview of PPA, values, understanding grief, etc.

FTD is a complex disease with emotional and practical challenges that can be overwhelming and isolating. Support groups share helpful resources and offer you a safe space to share your thoughts with others who understand.

“I went to the FTD support group for the first time last night and came back feeling so much better…with so many answered questions. I now feel like I’m not alone.” Sandy, TX

In an interview with the Canadian Broadcasting Corporation, Dr. Simon Ducharme of McGill University in Montreal discussed his recent administration of an experimental gene therapy to mitigate the progression of FTD cases caused by a variant in the gene GRN.

Forty percent of people diagnosed with FTD have one or more blood relatives who have also been diagnosed with FTD or a related condition (such as ALS), a mental health condition like depression or anxiety, progressive challenges with language or movement, or another dementia. Such cases are referred to as familial FTD. Of that 40 percent, half may be attributed to a gene mutation. People with a mutation in the GRN gene lack the ability to produce progranulin, a key protein that helps maintain the health of nerve cells in the brain. This deficit may result in FTD.

The current stage of Dr. Ducharme’s study involves introducing a non-mutated GRN gene, using a therapy developed by the genetic-therapy company Passage Bio, into trial participants. The non-mutated GRN gene is delivered via a single injection into the cerebrospinal fluid at the base of the brain to stimulate progranulin production.

Four participants, two in the U.S., one in Brazil, and the most recent one in Canada, have received the injection. All participants’ progranulin levels are tracked through samples taken via lumbar punctures. “The early indications from the [first three people who] have received it,” said Dr. Ducharme, “is that it seems to be working.”

Dr. Ducharme does not think the treatment will reverse participants’ existing symptoms because the symptoms are caused by damage to nerve cells. He does hope, though, that the “treatment could at least slow down the progression of their disease or even stop it.” And, if the gene therapy works, Dr. Ducharme’s long-term goal is to give the treatment to carriers of the mutation to delay or even prevent the onset of symptoms.

Participants and their families agree. It “takes a fair amount of courage [to participate in the research study] because this is a very experimental procedure,” Dr. Ducharme said. “The main reason people with these diseases are willing to participate in research like this is that they hope we can … completely prevent it for their children’s generation.”

In 2021, Dr. Ducharme received a grant through the Treat FTD Fund, a partnership between AFTD and the Alzheimer’s Drug Discovery Foundation. Earlier this year, he discussed the experimental FTD-GRN therapy with Le Devoir, a French-language newspaper based in Quebec.

FTD is a complex disease with emotional and practical challenges that can be as isolating as they are overwhelming — finding a support group can provide you with a safe space to share your thoughts with others who understand and trade resources for the journey ahead. AFTD’s HelpLine can answer any questions you have about FTD and support you; contact the HelpLine at 1-866-507-7222 or [email protected].

Dear HelpLine,
We have just made the difficult decision to move my mom into facility care not far from home. We are all new to this, what can we expect and what can we do to work with the facility to help them learn about FTD?

FTD advocates can help bring awareness to their communities by working with lawmakers to issue proclamations and resolutions designating a statewide FTD awareness week. But what are proclamations and resolutions, and how can advocates push for them? In this Advocacy Webinar, AFTD’s advocacy team explains the difference and shares the steps you can take to establish an FTD awareness week in your state. Additionally, AFTD Ambassador and registered nurse Debbie Elkins describes how she successfully advocated for an FTD awareness proclamation in West Virginia.