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Resolutions and proclamations last for one year, which means AFTD needs volunteers help us obtain new ones for World FTD Awareness Week 2025. If you would like to participate, email [email protected], and we can help you get started!

To help people begin preparing for next year’s awareness efforts, AFTD will be offering a December 2024 workshop to help guide anyone interested in volunteering. Stay tuned for details.

For those who already volunteer, we encourage you to become an advocate. You will join a group of committed individuals determined to raise FTD awareness.

The first day of World FTD Awareness Week aligns with AFTD’s two-week Food for Thought campaign, in which AFTD volunteers host food-related awareness and fundraising events throughout the country. This year, hosts created myriad events, from taco bars to chili cook-offs, beer and wine tastings, food trucks, and pizza parties.

One Food for Thought host, Mike Brucklier, is director of operations at Flour Bakery, a small chain in the Boston area. For this year’s event, Flour Bakery sold AFTD Red Oreos at its Boston locations. A portion of the proceeds from these cookie masters was donated to AFTD’s mission.

Another host, Lindsey Hunt, owns the burger food truck Sear + Savor in Boise, Idaho with her husband Ron. Throughout Food for Thought, Lindsey donated 20 percent of all sales to support AFTD’s mission. In addition to fundraising, she provided materials and giveaways to spread FTD awareness.

And Colleen Franzreb and her family took their Food for Thought tradition to a new level this year by introducing a chili contest! This event was held in memory of her brother, Edward “Big Time” Costello, and honored their family’s love of chili at tailgates and football games.

Thank you to all who used their time, energy, and creativity to put together the fabulous Food for Thought events this year. AFTD appreciates each of you.

Dear HelpLine,
My mom has FTD and we have an upcoming appointment with her physician. We’d like to talk about medications to help with some of her symptoms. What should we know about medication and FTD?

• Behavioral strategies: Addressing challenging behaviors by identifying triggers and modifying the environment, care routine, and other approaches.
• Environmental modifications: Creating a calm, safe, and structured environment to reduce symptoms.
• Communication strategies: Using communication approaches and nonverbal cues to enhance understanding and reduce frustration during interactions.

Learning about Types of Medications 

This chart is for informative purposes only and to provide a general understanding of the topic. It should not be considered or used as medical advice. If you have questions regarding your own specific situation, you should speak with your medical providers.

Types of Medications	Examples	Symptoms	Notes
Antidepressants	SSRIs (selective serotonin reuptake inhibitors) Citalopram Sertraline Fluoxetine Trazadone	Anxiety Depression Disinhibition Agitation Compulsive behavior Hyperorality	Less risk of side effects than other medications
Antipsychotics	Quetiapine Risperidone Olanzapine	Severe agitation Aggression Insomnia Psychosis Symptoms that present a risk to person diagnosed or others	Used with caution due to higher risk of side effects
Mood Stabilizers			Can be combined with other medications Requires close monitoring due to side effects
Benzodiazepines		Insomnia Anxiety Agitation	Use with caution due to increased risk of falls and increased confusion Often only effective in the short term
Cholinesterase inhibitors and Alzheimer’s medications	Donepezil Galantamine Rivastigmine		Not indicated in FTD (some studies show they may worsen it)

The resources below from AFTD provide further information about types of medications and approaches in FTD to help prepare for these appointments:

Additional Resources and References

AFTD would like to highlight the power of advocacy in contributing to the greater awareness of FTD. This year’s World FTD Awareness Week was filled with contributions large and small by advocates who took their time to create awareness and fundraising events, who posted about FTD and AFTD on social media, and who worked with their legislators to obtain resolutions and proclamations.

Those of you who came together to raise your voice about FTD, we cannot thank you enough.

Resolutions and Proclamations

In the lead-up to World FTD Awareness Week and throughout the week, AFTD’s advocates successfully obtained resolutions in California, Delaware, Massachusetts, and New York.

In addition, you won proclamations in twenty states and seven cities:

States with Proclamations		States with Resolutions
Alabama Alabama Arizona Idaho Illinois Iowa Kentucky Maryland Massachusetts Michigan New Jersey New Jersey	Ohio Ohio Oklahoma Oregon Pennsylvania Tennessee Texas Virginia Washington West Virginia Wisconsin Wisconsin	Covington, WA Covington, WA Lima, OH Reno, NV Chester, NJ Paris, IL Chicago, IL Forney, TX Forney, TX

We also want to recognize those states in which advocates attempted the process but were not ultimately successful: California, Colorado, Florida, Georgia, Hawai’i, Minnesota, Nebraska, Nevada, New York, and North Carolina. Advocates, we appreciate your efforts!

2025 Resolutions and Proclamations

Even if your city or state did sign a resolution or proclamation in 2024, it only lasts for one year, so please consider working with us toward a new one for World FTD Awareness Week 2025. If you would like to participate, please contact us at [email protected], and we can help you get started! And if you are not already one, we encourage you to become an advocate. You will join a group of committed individuals determined to raise awareness surrounding FTD.

Biotechnology company Psilera announced positive preclinical data for its FTD drug candidate, moving it another step towards first-in-human studies. The company also underscored promising data from efficacy studies conducted by the University of South Florida (USF).

The drug, a compound called PSIL-006, is a psilocybin derivative that has a safe, non-hallucinogenic profile, making it a good candidate for take-home use, notes the company. Psilera says PSIL-006 has shown a positive effect on serotonin receptor 2A, a common target in the brain for medicines treating psychiatric symptoms. And in preclinical studies, PSIL-006 has demonstrated no side effects that could limit treatment effects.

In the company’s recent announcement, Psilera indicates toxicity data from studies of PSIL-006 showed a “strong safety profile.” Data from studies conducted by USF with the Tau protein on humanized mouse models showed that PSIL-006 improved learning and memory and aided sleep.

“From the start, our primary focus was to develop a new class of neurological therapies for patients that eliminate unnecessary side-effects which traditionally limited patient access to natural compounds with high therapeutic potential,” said Psilera Co-Founder and CSO Jackie von Salm, PhD. “This initial data reinforces our strong belief that neuroplastogens have tremendous untapped potential.”

In January, Psilera named behavioral variant FTD (bvFTD) as the “lead indication” for PSIL-006, selecting it as the primary condition for which the drug would be developed. Discussing the unmet needs of families facing bvFTD, Dr. von Salm said at the time, “After having personal experience with this rare and devastating form of dementia, we aim to make a meaningful impact on the lives of patients and their families who are left without any treatment options.”

Scientists at companies like Psilera are working to address FTD, bringing increasing numbers of novel interventions and diagnostic tools through to preclinical and clinical trial stages of research. In August, Aviado Bio CMO David Cooper, MD, discussed the specifics of the Phase 1/2 ASPIRE-FTD clinical trial with Neurology Live.

If you are interested in keeping up with the latest opportunities to participate in clinical trials driving research towards an FTD-free future, sign up with the FTD Disorders Registry. In addition to helping you stay up to date on FTD research, the Registry is a platform to share your lived experiences and guide scientists in their work.

Navigating the symptoms of FTD can be difficult for loved ones, especially when someone living with the disease experiences memory-related challenges. However, as Catherine Savini shares, meeting symptoms with “yes, and” instead of “no, because” can turn encounters with frustration and isolation into meaningful moments of playfulness and connection.

Recently, a close friend was telling me a story about her mom, who was throwing a family party. She asked my friend to be sure to invite her brother and sister. The problem was, the two siblings had a falling out several years ago and no longer spoke. My friend dutifully reminded her, “Mom, you won’t see them both this Sunday. They had a falling out, remember?”

After hearing this story, I couldn’t restrain myself. “Stop telling your mom about their estrangement!” I said. “She doesn’t need reminding. Let her live in a world where her kids still get along!” My friend was taken aback. My advice seemed counterintuitive: why shouldn’t she correct her mom, especially about something so important?

Meanwhile, I had surprised myself with the intensity of my reaction. But there’s an obvious explanation: My own mom was diagnosed with behavioral variant FTD at 60. At times during her 10-year decline, I, like my friend, found myself setting her straight.

Here’s an example. One summer following her diagnosis, as I was struggling to help my mom get dressed, she kept looking at her closet. “I need to figure out what I’m going to wear to the wedding,” she said. I knew what wedding she was referring to. It had happened months ago; she and my dad traveled to New York City to attend. “Mom, you already went to that wedding,” I reminded her. “Now lift your leg so we can get your pants on.”

There’s an episode of This American Life where an actor named Karen shares a story about caring for her mother, Virginia, who was living with Alzheimer’s. Karen and her husband, Mondy, stumbled upon an approach that they found worked surprisingly well in dementia care: “Yes, and…”

“Yes, and…” is the first rule of improv. Improv performers are trained to always greet their scene partners’ utterances by first affirming them (the “yes…” part), then adding something new (“…and”) that layers onto the scenario they are collectively creating. “No” is banned in the improv world.

What I was doing with my mother could be called “no, because.” No, we don’t have to figure out what to wear to that wedding, because you already went. Instead of joining my mother in her world, I was jerking her back into reality. Unfortunately, it wasn’t until after she died that I realized the flaw in this approach.

For Virginia, “yes, and…” worked so well that Mondy, also an actor, started to enjoy it. When Virginia thought she saw monkeys, Mondy responded, “It’s pretty early in the season for monkeys…[But] if you see one again, we should try and capture it, because that would be a blast to have in the house.” Virginia had fun with it too. Of course she did; instead of being corrected for getting things wrong, she was met with affirmations and playfulness. Who wouldn’t prefer that? Not only did “yes, and…” make Virginia happy, it made her more likely to go along with Karen and Mondy’s caregiving suggestions.

“Yes, and…” sounds easy – it’s just two words. But FTD caregivers know that nothing about this disease is quite that simple. As motivated as we may be to take an approach that promotes good feelings, the effort needed to maintain this is monumental. Karen explained that practicing “yes, and…” with her mom frequently required her to disavow actual memories that she and Virginia once cherished. It can feel like you are not only losing your loved one, but also your shared past, and even yourself.

So what do we do?

First, simply try “yes, and…,” particularly in moments when it feels doable. My mom’s perpetual preparation for a wedding that she’d already attended would have been a perfect opportunity. Instead of focusing on putting her clothes on, I could have had some fun with her. We could’ve gone through her jewelry together, pulled outfits out of her closet, and skimmed magazines for hot looks. (To be clear, I’m not suggesting that we let our loved one engage in dangerous behavior; “yes, and…” does not apply when our loved one asks for the car keys or a bottle of wine.)

Second, recruit others to help “yes, and…” your loved one. Watching the person you love be devoured by this disease creates a pall over everything. Accessing the playful part of your brain in these moments can feel like trying to open a jar when your hands are covered with olive oil. Knowing this, we can recruit others to help us with a “yes, and…” approach so that when it’s too hard for us, others can tap in. There’s a reason improv is performed by troupes. And, given that “yes, and…” can be easier for those who don’t have a history with your loved one, hire people early and often to help out (if finances permit). I know that it doesn’t always feel comfortable to invite strangers into our homes to care for our loved ones, but it can lead to beautiful new relationships: one caregiver we hired formed such a bond with my family that when she got married (on my mother’s birthday), she delivered a toast to my mother. My mother died in 2017; today, we still see Trina and her husband at least once a year.

Before FTD vacuumed out her personality, my mother was a sharp woman who loved playing Scrabble, teaching students in her middle school library, entertaining guests at our beach home, and caring for her own mother and children. When my mom was diagnosed, we had never heard of FTD, and we did not receive any guidance on how to care for her, yet despite some regrets, I’m proud of how we did. My dad kept her at home as long as he could. When his own health issues forced him to move her into a memory care facility, he visited her every day, sometimes twice a day. He took dance classes with her and often fell asleep next to her on the common-room couch, while she and the other residents watched Hello, Dolly and My Big Fat Greek Wedding for the umpteenth time. I took a leave of absence from work and moved nearby so she could get to know her first grandkid. My father and siblings were great at injecting humor throughout the caregiving journey (as my sister demonstrates in her essay “What’s So Funny? Caregiving with a Smile”). We all tried to care for her as she cared for us, with good humor and compassion.

The heaviness of the daily tasks and the emotional burden of caring for someone with FTD can make levity feel impossible. But the simple framework of “yes, and…” can steer caregivers out of the frustration and isolation and toward playfulness and connection. I wish that instead of forcing her back into reality, I had joined my mother in a world where a wedding was forever on the horizon.

Dawn Kirby and her husband, Tim, are getting the word out about FTD. The couple were recently featured in an article in the Prairie Press (Paris, Ill.), where they talked about their advocacy on behalf of FTD awareness.

Dawn and Tim have fond memories of watching their daughter, Kara Ike, come into her own in her late twenties. Kara had found rewarding work as a nurse on a dementia unit in her hometown, and she had just become a first-time mother. But the Kirbys started to notice behavioral changes in their daughter after the birth of her son, Carson.

“We found our daughter was becoming irrational and had misplaced emotions,” Dawn said in the article. “She had a few behavioral issues… but she just wasn’t being our Kara, and it was getting worse.”

Eventually, Kara “began having auditory hallucinations, symptoms of postpartum depression and severe episodes of anxiety and psychosis.”

The Kirbys were determined to figure out what was wrong with Kara, but it took a year and a half to receive a proper diagnosis. “Every day we woke up thinking, ‘today [we] are going to figure out what’s wrong and make Kara better…’ but we went to bed every night defeated,” Dawn said.

Kara received several misdiagnoses before the Mayo Clinic arrived at bvFTD in 2019. “As heartbreaking as the diagnosis was,” Dawn said, “we knew the monster under the bed had a name.”

The Birth of an Advocate

Shortly after Kara was diagnosed, Dawn began finding ways to increase public awareness of the disease. Initially, she gave interviews with local media outlets and podcasters. She also presented an FTD Lunch & Learn to her local mental health clinic and hosted an AFTD Food for Thought fundraiser with her family.

“I wanted to do everything I could to make sure that another young mother didn’t go through this,” she said in the article. “I still want that. We’ve just continually asked God, you know, please just let something good come from this.” So, after Kara passed away on New Year’s Day, 2023, Dawn became an AFTD Ambassador to continue her role as “protective mama bear.”

Since then, she has held or participated in multiple AFTD events, working toward her goal of raising FTD awareness in the rural communities of Illinois, western Indiana, and beyond, including giving her testimonial to the National Alzheimer’s Project Act (NAPA) Advisory Council.

Still Going Strong

Never one to miss an opportunity to advance FTD awareness, Dawn has recently advocated for and obtained proclamations recognizing World FTD Awareness Week (Sept. 22-29) from Illinois governor J.B. Pritzker and Craig Smith, the mayor of Paris, Ill. The timing coincides with two special events she has been involved in: a television special about FTD, and a Food for Thought fundraiser.

The Kirbys were showcased in a PBS special that aired on September 24. Being Well: Frontotemporal Degeneration, featuring “Kara’s Story: Love Needs No Words,” was created by the team who produce the television series Being Well, on WIEU, the PBS station in Charleston, Ill. The special is now available on the WIEU Being Well YouTube playlist.

In conjunction with the television special, Dawn also created a Food for Thought event. Food for Thought: Family, Friends, Food, Fishing & FTD Awareness was a family-oriented fundraiser hosted by the Kirbys and AFTD. During the event, attendees took time away from the activities to watch the special together.

For those who would like to help Dawn reach her fundraising goal, you can donate through her Food for Thought Classy fundraiser.

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event, hosted by AFTD volunteer Jeanne Cestone, taking place from 10:30-11:30 a.m. on Saturday, October 26, 2024. The event will be held at the Appoquinimink Community Library in Middletown, Del. (204 E. Main Street).

RSVP for this event by emailing [email protected]. To learn more, download this flyer.

September is Suicide Prevention Month. Below, Deb Jobe, a member of AFTD’s Persons with FTD Advisory Council, courageously shares the story of her suicide attempt following an FTD diagnosis, and how she returned from wanting to end her life to fully embracing it. 

As I sit here in my backyard feeling the sun’s warmth, watching the hummingbirds zip from feeder to feeder and listening to nature’s music, I realize how blessed I am. I say this even though there was a period in my life where I felt overwhelmed, lost, so lonely, and of no value. Why? I was diagnosed with FTD in conjunction with corticobasal syndrome.

I clearly remember sitting with my husband as the neurologist went over my tests and delivered the diagnosis. Our world crashed around us. A thousand thoughts ran through my head and overwhelming despair settled in my heart. This is not a disease that runs in my family.

Within six months of diagnosis, I felt there was nothing to live for. Worried that I would become a burden on my family (emotionally and financially) and lose my independence (no more driving, cooking, or riding my bike), and facing sudden retirement from a 34-year career I loved, I attempted suicide.

Numerous studies have shown that people with dementia, and FTD specifically, have an elevated risk for suicidal thoughts and behaviors:

• A study of the U.S. veteran population that was published in 2018 in the American Journal of Geriatric Psychology found that persons with FTD exhibited suicidal behavioral more frequently than persons diagnosed with other forms of dementia.
• In 2019, the American Journal of Alzheimer’s Disease and Other Dementias published a study finding that 40 percent of persons diagnosed with behavioral variant FTD had suicidal thoughts, compared to just 8 percent of an undiagnosed control group.
• In 2021, a Psychology & Health study found that the suicide rate of persons living with FTD or Huntington disease was 2,996 per 100,000 people, much higher than the suicide rate of the general population (10 out of 100,000).

Thank goodness that, despite my suicide attempt, I am still here. Today, I am living well, enjoying precious time with my family, and discovering new activities every day!

People diagnosed with disease as life-altering as FTD may experience depression, stress, isolation, and hopelessness that could lead to suicidal thoughts, with younger individuals experiencing a higher rate of such thoughts. I am a living example of this. I was diagnosed four years ago at age 53.

How did I recover from attempted suicide? A host of supports and services. It reminds me of the saying, “It takes a village…” My neurologist and primary care physician provided referrals for:

• Ongoing counseling
• Cognitive/behavioral speech therapy
• Physical and occupational therapy

We also used valuable resources from the Association for Frontotemporal Degeneration (I especially recommend the HelpLine: 1-866-507-7222 or [email protected]). Additionally, support groups provided the opportunity to talk to others who understood. We also used prayer and our faith to help guide us.

I began to realize that life is not hopeless: I am still me, and can contribute. Almost four years later, I now think of my post-diagnosis life as a journey. Journeys span a period of time, and each journey is unique and progresses differently for each person.

My life has become simpler, slower paced, and I enjoy the little things more. When negative thoughts start creeping back, I go back to counseling. There is NO SHAME when these thoughts occur! YOU ARE NOT ALONE!

If you or a loved one notices changes in the person living with dementia (PLWD), please reach out to your doctor(s) for help, and contact AFTD.

We are People Living With Dementia, and WE CAN STILL LIVE!

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline. You can also visit the website of the International Association of Suicide Prevention for more resources.

On August 8 and 9, AFTD hosted an industry advisory panel in which a group of people whose lives have been touched by FTD shared their experiences and perspectives with companies working on potential FTD treatments. The panel included people diagnosed with FTD, current and former care partners, and biological family members of people with FTD. The panelists discussed topics such as their views and perspectives on clinical trials, genetic testing, and barriers getting timely and accurate FTD diagnoses. These discussions will help researchers design clinical trials that are maximally beneficial for people impacted by FTD.

For more information on sharing your experiences with FTD to help improve FTD research, contact AFTD’s Director of Research Engagement, Shana Dodge, at [email protected].
For more information on current FTD research opportunities visit our Studies Seeking Participants page and the FTD Disorders Registry. 

Join and learn from others who understand the FTD journey at this in-person AFTD Meet & Greet event in Midlothian, Virginia, near Richmond, hosted by AFTD volunteer Carrie Edwards. The event will take place in Community Room of the Midlothian Library (100 Millworks Crossing).

RSVP for this event by emailing [email protected]. You can also download this flyer to learn more.