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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Weekend Watch: Understanding Frontotemporal Dementia - Barrow Neurological Institute Dr. Tom I. Finkelstein, discusses the insights into diagnosis, research, and support of frontotemporal dementia (FTD). Watch on YouTube: www.youtube.com/watch?v=uH3r...

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Symptom Spotlight - Hyperorality (The AFTD) The AFTD's October 2026 newsletter has a terrific article on hyperorality. This is a "behavioral symptom in which affected individuals compulsively taste, chew, or ingest food or non-food items." www.theaftd.org/aftd-partner... #FTDawareness

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Reposted by Brain Support Network

msatrust.bsky.social @msatrust.bsky.social · 02/10/2026

Tomorrow is World MSA Day, MSA Trust, Mission MSA and Combat MSA join the global MSA community in raising awareness of multiple system atrophy (MSA). Together, we are connecting the global MSA community. #ConnectingTheGlobalMSACommunity #WorldMSADay

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

Dementia affecting younger persons strikes Hispanics more than previously thought, UT Health San Antonio-led study shows While Hispanic populations generally experience higher dementia rates, they have remained underrepresented in frontotemporal #dementia research. news.uthscsa.edu/dementia-aff...

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Brain Support Network @brainsupportnet.bsky.social · 02/10/2026

"Our family would like our mother's journey with FTD to help bring awareness to the importance of early diagnosis and brain donation. Without early diagnosis, the family is left wandering in the dark, looking for answers. Tom G. July, 2025 #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

LBDA 2026 Community Conference Series The Lewy Body Dementia Association's 2026 Community Conference Series brings together experts, trusted partners and the #LBD community for a day of education, empowerment and support. Events in Minnesota, Wisconsin, Arizona and Nevada: lbda.org/2026-communi...

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

October is Lewy Body Dementia Awareness Month Let's raise awareness about LBD, educate the public about the symptoms, diagnosis, and treatment, and also support individuals and families living with LBD. Learn more about LBD and brain donation: www.brainsupportnetwork.org/education/le...

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Brain Support Network @brainsupportnet.bsky.social · 01/10/2026

VOICES: The Emotional Anchors That Help Caregivers Stay Grounded From horses and music to genetic answers, families share the moments and tools that brought clarity, comfort, and connection amid the uncertainty of #dementia. Read at BeingPatient: beingpatient.com/voices-emoti...

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

FTD Case Study: Margaret “Elizabeth” Vincent In 2021, Elizabeth began to show noticeable changes in behavior and communication, including difficulty in speech and word-finding, withdrawal from social activities... Read more: www.brainsupportnetwork.org/brain-donati... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

What to Remember When You Are Forgetting: Dr. Zaldy Tan on Living Well With Dementia Read and listen: beingpatient.com/what-to-reme... #dementia #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 30/09/2026

Darrell Waltrip diagnosed with frontotemporal degeneration, stepping away from limelight In the statement, the family of the 79-year-old says he has been diagnosed with frontotemporal degeneration (FTD) due to injuries he suffered from a racing career. www.aol.com/articles/dar... #FTDawareness

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Brain Support Network @brainsupportnet.bsky.social · 29/09/2026

Ask an Expert: Is Logopenic PPA an FTD Disorder or Alzheimer’s Disease? One of the biggest challenges with PPA is understanding which type of neuropathology is causing a person’s symptoms: a form of FTD or Alzheimer’s disease (AD)? Read: www.theaftd.org/uncategorize... #FTDawarenessWeek

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Brain Support Network @brainsupportnet.bsky.social · 29/09/2026

Did You Know? Frontotemporal degeneration (or frontotemporal lobar degeneration) is an umbrella term referring to disorders of the frontal lobe and temporal lobe. Learn more at our Education pages: www.brainsupportnetwork.org/education/ #ftdawarenessweek #FTD

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Brain Support Network @brainsupportnet.bsky.social · 29/09/2026

Caregiving is a national crisis we can't ignore | Opinion Nearly every one of us will provide care or need it. How we respond now will determine whether #caregivers shoulder this responsibility in isolation or are finally met with the support they deserve. www.usatoday.com/story/opinio...

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Brain Support Network @brainsupportnet.bsky.social · 28/09/2026

“What may look like your partner being disconnected from you, could actually be disease symptoms – facial masking, depression, lack of empathy, and apathy.” – Local Support Group Member #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 28/09/2026

Excerpt from this blog post about caring for a spouse with a chronic disorder: "You find yourself carrying the physical, mental, and emotional load for two, while your partner...seems to take up all the air in the room. ... Read more on The #Caregiver Space: thecaregiverspace.org/how-to-talk-...

thecaregiverspace.org

How to Talk About Hard Truths Without Making It About Blame

Sometimes the math in a relationship stops adding up. You find yourself carrying the physical, mental, and emotional load for two, while your partner — spouse, long-term partner, or whoever you’ve…

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Reposted by Brain Support Network

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 28/09/2026

Day 1 of World FTD Awareness Week begins with a Spotlight on FTD. Frontotemporal degeneration is a group of brain disorders that affect behavior, communication, and movement. 🔦 Join us as we put FTD in the spotlight—and tag someone who should know about FTD. 🩵 Learn more: bit.ly/4cSCgZX

Blue poster with the text 'Spotlight on FTD'. Below, it reads 'Today we’re starting the conversation and shining a light on FTD.' A ribbon with '#endFTD' is at the bottom right. Three spotlights shine from above.

Image depicting information about Frontotemporal Degeneration (FTD). There is a silhouette of a head with a brain illustration. Text describes FTD as a group of brain disorders affecting behavior, communication, and movement. A blue awareness ribbon with the hashtag #endFTD is shown.

Infographic about Frontotemporal Dementia (FTD). Three sections show: most cases occur between ages 45-60, onset ranges from 21-80, and progression length varies from 2-20+ years. A statement notes FTD's substantial impact on work, family, and finances. A ribbon with "#endFTD" is displayed.

Blue poster featuring the phrase "Why awareness matters" followed by three points with icons: a megaphone for spreading knowledge, people for building community, and a heart for hope and cure. A ribbon with "#endFTD" is displayed at the bottom.

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Brain Support Network @brainsupportnet.bsky.social · 28/09/2026

It's World FTD Awareness Week! The theme for 2025 is “Put a Spotlight on FTD” which aims to shine a light on frontotemporal degeneration (FTD), the people affected by it, and the urgent need for greater understanding, support, and research. Learn more: www.brainsupportnetwork.org/category/ftd/

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Brain Support Network @brainsupportnet.bsky.social · 28/09/2026

Understanding the value of brain donation for research to donors, next-of-kin and clinicians: A systematic review Purpose: Post-mortem brain donation affords the opportunity to characterise disease by exploring global neuropathological changes. pmc.ncbi.nlm.nih.gov/articles/PMC... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 28/09/2026

Caregiving for Frontotemporal Dementia: What Families Need to Know Caregivers often first notice subtle changes in behavior, personality or speech — rather than memory loss — as the earliest warning signs Read at AARP: www.aarp.org/caregiving/m... #FTD #frontotemporaldementia

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Brain Support Network @brainsupportnet.bsky.social · 25/09/2026

Dr. Niyatee Samudra, MD, discusses having both Progressive Supranuclear Palsy (PSP) and Parkinson's Disease at the same time. Learn more about PSP at www.brainsupportnetwork.org/education/pr... #PSP #parkinsons

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Brain Support Network @brainsupportnet.bsky.social · 25/09/2026

Weekend Watch: What is Multiple System Atrophy? An essential overview explaining how #MSA impacts the brain, the key differences between MSA-P and MSA-C, the role of autonomic failure, and why early planning and multidisciplinary care matter. Watch at Mission MSA: missionmsa.org/resource-lib...

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Brain Support Network @brainsupportnet.bsky.social · 25/09/2026

When Should Someone with Lewy Body Dementia Stop Driving? Driving with Lewy body dementia is dangerous, and it becomes more dangerous as the disease progresses. Read more at the Lewy Body Dementia Resource Center: lewybodyresourcecenter.org/driving-with... #lewybodydementia

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Brain Support Network @brainsupportnet.bsky.social · 24/09/2026

Thank you all so much for helping to make my Mom's brain donation happen. The suddenness of her decline pushed up all the things we were working on for her brain donation. Brain Support Network's help was essential to our family in completing the brain donation. Clare E. 7/3/26 #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 24/09/2026

Mission MSA Cares Grant - Deadline Extended To help ensure every family gets the support they need, MissionMSA is extending the application deadline for the Fall Mission MSA Cares Grant to Monday, September 21, 2026, at 11:59pm EST. Learn more: missionmsa.org/missionmsaca... #MSA

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Brain Support Network @brainsupportnet.bsky.social · 24/09/2026

CBD Case Study: Sandra Staley Sandra had a history of Type 2 diabetes. In late 2012 her family first noticed her anxiety and social withdrawal, and thought it might be related to blood sugar levels. Read more at our Case Studies page: www.brainsupportnetwork.org/brain-donati... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 23/09/2026

How to Cope With Shadowing Behavior in Dementia Patients If you’ve been frustrated by similarly clingy behavior in a senior with Alzheimer’s disease (AD) or another form of dementia, it’s likely that this person is “shadowing.” Learn more at AgingCare: www.agingcare.com/articles/sha... #dementia

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Brain Support Network @brainsupportnet.bsky.social · 23/09/2026

National Research Study on the Biopsychosocial Impact of Spousal Caregiving Your caregiving story matters. Help shape the future of dementia care. Register today: alzfdn.org/spousal-care... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 22/09/2026

Did You Know? Progressive supranuclear palsy ( #PSP ) was first described as a separate neurodegenerative disorder in 1964. Most likely, it occurred in people before that time but we have no real evidence of this. Learn more: www.brainsupportnetwork.org/education/pr...

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Brain Support Network @brainsupportnet.bsky.social · 22/09/2026

Parkinson's Risk and Carbon Monoxide: What a New Study Found' Analysis offers surprising twist to the smoking-Parkinson's puzzle Read at MedPageToday: www.medpagetoday.com/neurology/pa... #parkinsons

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Brain Support Network @brainsupportnet.bsky.social · 22/09/2026

Genetic Counseling When a person has symptoms of #FTD, genetic testing can confirm the diagnosis is correct, potentially open research opportunities, and offer additional insights for extended family. This is “diagnostic testing.” Learn more: www.theaftd.org/ftd-genetics...

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Brain Support Network @brainsupportnet.bsky.social · 21/09/2026

“There are now three parties in my marriage – me, my spouse, and the disease. That’s very frustrating!” – Local Support Group Member #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 21/09/2026

When the Journey is Too Much There is a specific kind of exhaustion that only family #caregivers understand. Read more at The Caregiver Space: thecaregiverspace.org/when-the-jou...

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Brain Support Network @brainsupportnet.bsky.social · 21/09/2026

PennFTD - Brain Donation Brain donation is a deeply meaningful contribution to research for frontotemporal degeneration ( #FTD ) and related disorders. Learn more: www.pennftdcenter.org/brain-donation

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Brain Support Network @brainsupportnet.bsky.social · 21/09/2026

Today is World Alzheimer's Day We join the global effort to raise awareness and reduce challenges around Alzheimer's disease and other dementia. Read through our AD Case Studies: www.brainsupportnetwork.org/brain-donati... #worldalzheimersday

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Brain Support Network @brainsupportnet.bsky.social · 18/09/2026

Weekend Watch: Finding Calm in Caregiving: Mindfulness-Based Stress Reduction for Care Partners - Cathy Wang, MSW Watch: www.youtube.com/watch?v=kdNc... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 18/09/2026

The Mystery of My Brother’s Brain – a personal story This story comes to us from Solna Braude, who shares her brother Laurence’s journey in finding a definitive diagnosis for his neurological disease. Read their story at CurePSP: www.psp.org/news/details... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 17/09/2026

Brain Support Network holds three simultaneous caregiver-only support group meetings on the second Sunday of every month. Complete our form at our website if you’d like to join us. Our caregiver groups have been meeting since 2004! brainsupportnetwork.org/support-group/ #supportgroups

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Brain Support Network @brainsupportnet.bsky.social · 17/09/2026

It has been a very challenging couple of weeks, so I am planning on attending the next LBD support group meeting. I know how wonderful it was to connect with your group on my first meeting. Cynthia McC 7/8/26 #supportgroups

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Brain Support Network @brainsupportnet.bsky.social · 17/09/2026

In this May 2025 blog post, longtime hospice RN and educator Barbara Karnes describes four myths about hospice. These include: "If hospice gives me morphine, I will become addicted and probably die of an overdose." Read her blog post here: bkbooks.com/blogs/someth... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 16/09/2026

MSA Case Study: Don Ouellette Don's first symptom was a numbness in his right hand... After a few weeks of unsuccessful treatment, he went to his primary care physician, who first diagnosed Don with Parkinson's Disease. Read more: www.brainsupportnetwork.org/brain-donati... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 16/09/2026

Upcoming Webinar: Legal and Financial Planning After an FTD Diagnosis Tuesday, September 29, 2026 1:00 - 2:00 p.m. ET Register for this webinar: events.zoom.us/ev/AhonPfVLO... #FTD

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Brain Support Network @brainsupportnet.bsky.social · 16/09/2026

End of Life Planning - Brain Donation - Mission MSA Most of the breakthroughs in neurodegenerative disease research have been made because of these generous final gifts. BSN is highlighted as a resource in California: missionmsa.org/end-of-life-... #braindonation

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Brain Support Network @brainsupportnet.bsky.social · 15/09/2026

Did you know? In a 2015 landmark MSA study of 134 patients clinically diagnosed with MSA, only 62% actually had MSA upon brain autopsy. BSN was responsible for almost 25% of the #MSA brains for this study. Learn more: www.brainsupportnetwork.org/when-dlb-pd-...

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Brain Support Network @brainsupportnet.bsky.social · 15/09/2026

What Caregivers Should Know About Lewy Body Dementia and Its Unique Challenges The often misunderstood disease comes with unpredictable symptoms and high demands, but peer support can help ease the #caregiving burden Read at AARP: www.aarp.org/caregiving/m... #LBD

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Brain Support Network @brainsupportnet.bsky.social · 15/09/2026

Cori Carl posts on "The Caregiver Space," a blog with stories about caregiving. thecaregiverspace.org/the-fake-wor... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 14/09/2026

Why Your Family’s Story Matters: The Power of Genetic Counseling and Genetic Testing in FTD Disorders Read at FTD Registry: ftdregistry.org/press/why-yo... #FTD

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Reposted by Brain Support Network

The Association For Frontotemporal Degeneration @theaftd.bsky.social · 14/09/2026

Did you know progressive supranuclear palsy (PSP) primarily affects movement? PSP is a form of frontotemporal degeneration that can affect balance, walking, eye movement, speech, and swallowing. 🧠 Learn more: bit.ly/3SYgZqS

This image is an informative graphic about Progressive Supranuclear Palsy (PSP) created by The Association for Frontotemporal Degeneration. The left section, labeled "1," states that PSP primarily affects movement, including balance, walking, and coordination. The right section, labeled "2," indicates that frequent falls and balance problems are common early signs, with symptoms often including stiffness, poor balance, and frequent falls.

This image is an informational graphic from AFTD about Progressive Supranuclear Palsy (PSP). Panel 3 illustrates that PSP can affect eye movement, making it difficult to look up or down, blink, or close eyes. Panel 4 explains that PSP can affect speech and swallowing, causing slowed or slurred speech, gagging, or choking. Simple eye and mouth line drawings accompany the text.

The image is a slide titled "PSP is associated with tau." It includes logos for AFTD and Cure PSP and features a large DNA double helix symbol in the center. The text explains that PSP is connected with tau protein buildup in the brain, especially the 4R tau form. The background is white with a red design element at the bottom.

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Brain Support Network @brainsupportnet.bsky.social · 14/09/2026

When the Journey is Too Much There is a specific kind of exhaustion that only family caregivers understand. It is a deep, soul-weary burnout that happens when you have given every ounce of your emotional, physical, and mental energy away thecaregiverspace.org/when-the-jou... #caregiving

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Brain Support Network @brainsupportnet.bsky.social · 14/09/2026

I have been reminding family and friends of the importance of your work. The answers you gave us - that our father had frontotemporal dementia, not multiple system atrophy - explain his behavior and symptoms so much better. I want to emphasize how much the answers matter. Alex J.

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