Through expert-led storytelling and historical insights from Dr. Patrick Emanuell Mesquita Sousa-Santos, this webinar reflects on how Dr. Friedrich Lewy’s legacy continues to inform today’s understanding of Lewy body dementia (LBD) and inspire future innovation in care and research.
Weekend Watch:
LBDA: From Berlin to Breakthroughs
The Life of Dr. Lewy
The Lewy Body Dementia Association (LBDA) is proud to present "From Berlin to Breakthroughs: The Life of Dr. Lewy."
Watch: www.youtube.com/watch?v=Hjir...
#lewybodydementia
...how to have conversations about care preferences and wishes, questions to ask in-home care agencies, and more.
Planning for Future Care: A Carepartner Perspective
March 18, 11am
Recognize when additional support may be helpful, while honoring individual choices and #independence, understand different types of care, prepare ahead for home safety considerations...
parkinson.bc.ca/event/planni...
And it supports our outreach efforts, website, various conferences, and webinars, which are focused on specific neurological disorders and the challenges of caregiving.
With your help we offer guidance, educational materials, and active support groups to empower individuals and caregivers facing challenges related to Lewy Body Dementia (LBD), Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Syndrome/Degeneration (CBD).
Support Research, Education, and Community
Donate Today to Brain Support Network: Every generous gift enables medical research on #neurodegenerative diseases through the brain donations we arrange across the US.
Learn more and donate today: www.brainsupportnetwork.org/donate/
#braindonation
It provides a comprehensive understanding of the unique challenges faced by individuals living with LBD and offers effective care strategies to support them.
LBDA Lewy Learning Center
Caring with Confidence: Understanding Lewy Body Dementia
About the Course: This series of video presentations aims to address the stigma associated with dementia, with a particular focus on Lewy body dementia ( #LBD ).
lewy-learning-center.thinkific.com/courses/Cari...
The meetings give time for caregivers to unload their fears and frustrations.
Though my husband passed away in 2023, my mind is still fresh with all the help and understanding given to me by the caregiver support group. Meetings assist the spouses/caregivers balance their lives while dealing with a terrible disease.
- Mary B.
2/9/26
#braindonation
Right now, there are no FDA-approved medications specifically for DLB, and most available treatments address only pieces of the condition. That is why new research into potential therapies is so important.
LBDA Clinical Trial Results Published: The SHIMMER Study
People living with dementia with Lewy bodies (DLB) often face a difficult mix of symptoms—changes in thinking, movement, behavior, sleep, and daily function.
lbda.org/clinical-tri...
#lewybodydementia
The article is about Nick Fox, MD, a neurologist in London, who describes some of the signs that are overlooked such as loss of motivation, personality changes, and lack of empathy.
Signs of young-onset dementias are difficult to diagnose because neurologists and families don't think of dementia appearing in someone in their 40s or 50s.
Recognizing the Easily Mistaken Signs of Young-Onset Dementia
The Association for Frontotemporal Degeneration (AFTD) has an interesting summary on its website of an article about young-onset dementia in The Telegraph (UK).
www.theaftd.org/1ftd-in-the-...
#FTD #dementia
Constipation plagues many PD patients, often decades before motor and cognitive symptoms arrive. This, plus the identification of α-synuclein and Lewy bodies in the intestines, has raised the question of whether PD, in some cases, stems from the gut.
Gut Punch: Macrophages Bring Parkinson’s From Belly to Brain
People with #Parkinson’s disease have α-synuclein clumps in the brain, but these aggregates are not the only thing clogging them up.
www.alzforum.org/news/researc...
“I was lost when I first began my PD journey; I was in denial for months after my diagnosis. The BLAAC PD study gave me courage to embrace PD, help myself, and devote myself to research that will help Black patients,” says Toney.
After some months, Toney took action. She found the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study and started contributing to research.
A retired accountant and mother of two adult sons, Toney hadn’t heard much about the disease and had been diagnosed with a list of other conditions. She now sees how the signs building for nearly a decade led to Parkinson’s disease.
“We Deserve Answers Too”: Toney Matthews’ Road to Research
When Toney Matthews of St. Louis received her #Parkinson’s diagnosis in April 2023, she was stunned.
www.michaeljfox.org/news/we-dese...
The conversation highlights how recognizing and addressing shame may open new avenues for more holistic, patient-centered management.
Drawing on her team's recent research, Dr. Vanessa Fleury discusses the psychological and clinical determinants of shame, its strong link to quality of life, and why it deserves greater attention in routine care.
Shame in Parkinson's disease: An unseen burden
This episode explores shame as an often-overlooked but impactful non-motor symptom of #Parkinson’s disease.
www.movementdisorders.org/Podcasts/Sha...
“I grieved the loss of my mother long before she died.”
– Local Support Group Member
#caregiving
That scale and diversity are already reshaping how Parkinson’s disease is studied — and how it may eventually be treated.
The Global Parkinson’s Genetics Program (GP2) has now genotyped more than 100,000 participants worldwide, with roughly one third of samples coming from historically underrepresented populations.
In this episode of Mendelspod, we return to the kind of ambitious, shared genomics project that helped define the field a decade ago.
Inside GP2: Building a Global Genetic Map of #Parkinson’s with Andrew Singleton and Ignacio Mata
Large-scale genomics is back — and this time, it’s global by design.
www.mendelspod.com/p/inside-gp2...
