Archives October 2024

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Members of the AFTD staff, along with several funding partner organizations, gathered with the world’s top scientists studying tauopathies for the 2024 Tau Consortium Investigators Meeting (TCIM) this September in Denver. The Tau Consortium™ is a collaborative research program that is managed and funded by the Rainwater Charitable Foundation (RCF) that fosters collaboration and knowledge-sharing, making it a unique space where researchers, consultants, and advisors can work together, sharing unpublished and confidential findings, and strategizing on future clinical trials.

The meeting opened with an update on the tremendous progress of ReD-Lat, the Multi-Partner Consortium to Expand Dementia Research in Latin America. Led by Katherine Possin, PhD (of the University of California, San Francisco and the AFTD Medical Advisory Council), this international team aims to combine genomic, neuroimaging, and behavioral data to improve the understanding and treatment of neurodegenerative disorders like Alzheimer’s disease and FTD in diverse populations. The project began in Argentina, Brazil, Colombia, and Peru, but has been able to expand to include Mexico and Chile. In addition to genomics, neuroimaging, and behavioral data, the study has also expanded to include family assessments, EEG recordings, and natural speech analysis. Data collected from these efforts will facilitate numerous research projects, establish a multidisciplinary consortium of diverse clinicians and researchers, and promote the development of the next generation of scientific investigators in Latin America.

Juliana Acosta-Uribe, MD, PhD (University of California, Santa Barbara, and Grupo de Neurociencias de Antioquia, Universidad de Antioquia, Medellin, Colombia) shared her inspiring experiences as a clinical scientist studying the population genetics of neurodegenerative diseases in Colombia. Documentary photographer Alex Kornhuber (Global Brain Health Institute) moved the audience with powerful images and narratives that captured the lived experiences of dementia patients, their families, and the broader impact on their communities. These presentations sparked a meaningful discussion on the importance of adopting a global perspective in dementia research.

Following the inspiring presentations from Dr. Possin, Dr. Acosta-Uribe, and Mr. Kornhuber, the subsequent two and a half days were packed with presentations and discussions spanning basic science through to clinical work. Highlights included the launch of an RCF-led initiative to develop a new 4R-tau PET ligand for clinical use, updates on mechanisms of primary tauopathies, longitudinal studies, biomarkers, clinical trials for tauopathies, and advancements in our drug discovery efforts.

Our understanding of tauopathies has significantly grown since the founding of the Tau Consortium in 2009. Strategic collaboration across the consortium has fueled growth and progress. The mood leaving the conference was hopeful for the progress to come.

FTD care partner Hannah Clarke was interviewed on October 15 for a segment on Good Day Philadelphia about her experiences caring for her mother, Claudine, who is living with an FTD diagnosis.

Hannah was attending college in Cleveland when she and her brother noticed that Claudine was developing a condition that needed to be addressed. An internist in internal medicine and geriatrics, and “a very articulate woman,” their mother began to struggle to find words and have difficulty managing technology she already knew.

“She wasn’t able to hold a conversation with me without really long pauses to try to figure out what to say next,” Hannah said. Claudine was eventually diagnosed with FTD in 2021 at age 56.

The Effects of FTD on Young Family Members

When her mother was diagnosed, Hannah was two months shy of beginning medical school. “It was a critical time in my life and in my family’s life,” she said. “I still continued with school, but when [my mom] was moved into a nursing home, I was like, ‘Ok, it’s time for me to come back.’”

The Clarke family’s story shows the challenges placed on younger family members when a loved one is diagnosed with FTD. Having to decide between pursuing one’s personal career goals and becoming a full-time FTD care partner is a common, yet fraught, scenario. “My brother and I were in our early twenties,” she said. “There was a lot of life [we needed to figure out] individually as well as on behalf of our mother.”

She encourages everyone who knows a young caregiver to consider helping them. “Young caregivers need a lot of support,” she said. “If you know a young caregiver out there, please offer them support — even simple things, like cooking food or doing laundry, because there is just so much to figure out all at once, pretty urgent things, and it’s hard to manage all of that while also trying to grow up.”

Join Alzheimer’s San Diego, For Their Thoughts Foundation, and AFTD for an informal Meet & Greet, have your questions answered, and learn more about the services and support the three organizations provide.

The event will be held from 10:00 – 11:00 a.m. PT in at Alzheimer’s San Diego Community Room, Suite 300 (3635 Ruffin Road).

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

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.