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Brain Support Network
United States
เข้าร่วมเมื่อ 15 พ.ย. 2015
Brain Support Network (BSN) is a non-profit organization focused on the needs of families dealing with the four neurodegenerative disorders collectively known as "Atypical Parkinsonism Disorders": Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Corticobasal Syndrome/Degeneration (CBS or CBD), and Dementia with Lewy Bodies (DLB, sometimes called Lewy body dementia, LBD). While sharing many symptoms of-and often confused with-the more-common Parkinson’s or Alzheimer’s diseases, these four disorders have distinct brain pathologies, no cures, and virtually no treatments.
BSN has three missions: (1) Encourage and facilitate brain donation for neurological disorders to support research for a cure, (2) Educate families coping with atypical parkinsonism disorders so they can be better advocates of their loved-ones, and (3) Organize Northern California Support Group meetings for these disorders.
BSN has three missions: (1) Encourage and facilitate brain donation for neurological disorders to support research for a cure, (2) Educate families coping with atypical parkinsonism disorders so they can be better advocates of their loved-ones, and (3) Organize Northern California Support Group meetings for these disorders.
2024-0719 PSP/CBS Research Update with UCSF's Adam Boxer, MD, PhD
On July 19, 2024, Brain Support Network and Stanford Movement Disorders Center co-hosted a webinar for the progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS community). The speaker was Adam Boxer, MD, PhD, with UCSF's Memory and Aging Center. He spoke for about 15 minutes, providing an update on PSP and CBS/CBD research, and then answered question for about 45 minutes.
For more information on PSP and CBD, see:
www.brainsupportnetwork.org/psp
www.brainsupportnetwork.org/cbd
Dr. Boxer addressed brain donation. If you are coping with PSP or CBS/CBD, please consider brain donation to support research! Reach out to us at Brain Support Network:
www.brainsupportnetwork.org/brain-donation
For more information on PSP and CBD, see:
www.brainsupportnetwork.org/psp
www.brainsupportnetwork.org/cbd
Dr. Boxer addressed brain donation. If you are coping with PSP or CBS/CBD, please consider brain donation to support research! Reach out to us at Brain Support Network:
www.brainsupportnetwork.org/brain-donation
มุมมอง: 29
วีดีโอ
2023-03 CBS Research Going on at Stanford
มุมมอง 3221 วันที่ผ่านมา
Ze Yang, PhD, talked to our local Brain Support Network CBD support group members in March 2023 about his biomarker research for CBS.
2023-03 PSP Research Going on at Stanford
มุมมอง 4321 วันที่ผ่านมา
Jiwon Yeon, PhD talked to our local Brain Support Network PSP support group members in March 2023 about her research on eye tracking behavior in PSP. The principal investigator, Leila Montaser Kohsari, MD, also joined the meeting. The research is open to those with Parkinson's Disease as well.
2024-0504 Panel - MSA Symposium
มุมมอง 472 หลายเดือนก่อน
The highlight of the MSA Symposium was a panel. Panelists included (L to R): - moderator Candy Welch: cared for her husband with MSA (confirmed through brain donation) - Noelle: has MSA-C; co-leader of Brain Support Network's local MSA support group - Saurabh: has MSA-P - Kaly: her brother has MSA; member of BSN's local MSA caregiver support group - Steve: wife has MSA - Michelle: cared for her...
2024-0504 MSA Motor Symptoms - Elena Call, MD - MSA Symposium
มุมมอง 602 หลายเดือนก่อน
Speaker: Elena Call, MD, Kaiser Movement Disorders Specialist Topic: Motor Symptoms of MSA Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0504 Speech Therapy for MSA - Stevy Shadwick, SLP - MSA Symposium
มุมมอง 532 หลายเดือนก่อน
Speaker: Stevy Shadwick, SLP, Kaiser Speech Therapist Topic: Speech Therapy for MSA Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0504 Physical Therapy for MSA - Erica Pitsch, DPT - MSA Symposium
มุมมอง 562 หลายเดือนก่อน
Speaker: Erica Pitsch, DPT, UCSF Physical Therapist Topic: Physical Therapy for MSA Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0504 Autonomic Symptoms in MSA - Mitchel Miglis, MD - MSA Symposium
มุมมอง 642 หลายเดือนก่อน
Speaker: Mitch Miglis, MD, Stanford autonomic disorders specialist Topic: Autonomic Symptoms in MSA Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0504 Robinson Lab Research on MSA - William Robinson, MD - MSA Symposium
มุมมอง 452 หลายเดือนก่อน
Speaker: William Robinson, MD, Stanford Topic: MSA research being led by Stanford Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0504 Brain Donation for MSA - Robin Riddle - MSA Symposium
มุมมอง 452 หลายเดือนก่อน
Speaker: Robin Riddle, CEO of Brain Support Network Topic: Brain Donation for MSA The donation of Robin’s father's brain in 2007 to Mayo Clinic in Jacksonville, Florida, was Robin’s first organization of a brain donation. The 1,000th brain donation she arranged was her father-in-law’s, Hall Evans, BSN’s first benefactor. Brain Support Network has arranged over 1,400 brain donations. We'd be hon...
2024-0504 Neuropalliative care and MSA - Jocelyn Jiao, MD - MSA Symposium
มุมมอง 322 หลายเดือนก่อน
Speaker: Jocelyn Jiao, MD, Stanford movement disorder specialist and palliative care specialist Topic: Neuro-palliative care living your best Brain Support Network and Stanford's Movement Disorders Center co-hosted a Multiple System Atrophy Symposium on Saturday, May 4, 2024. This was a hybrid event in-person at Stanford and online.
2024-0228 Seminario web sobre la demencia con cuerpos de Lewy
มุมมอง 1144 หลายเดือนก่อน
El 28 de febrero de 2024, Brain Support Network y Stanford Neurology organizaron un seminario web en español sobre la demencia por la enfermedad de Parkinson y por demencia con cuerpos de Lewy (DCL). La doctora Carla Abdelnour, becaria postdoctoral de la Universidad de Stanford, brindó una descripción general de los síntomas y el tratamiento de la demencia de ambos enfermedades. El seminario fu...
2023-12 Three Things I've Learned As a Caregiver
มุมมอง 386 หลายเดือนก่อน
In early December 2023, Brain Support Network (brainsupportnetwork.org) and Stanford Parkinson’s Community Outreach (med.stanford.edu/parkinsons) co-hosted a discussion with caregivers who shared the top three things they have learned about caregiving. Caregivers offered advice to each other, including advice caregivers wished they could tell their younger selves. Participants in this discussio...
2023-1014 Communication Challenges for Dementia and Psychosis - Christina Irving, LCSW
มุมมอง 888 หลายเดือนก่อน
Brain Support Network and Stanford’s Lewy Body Dementia Research Center of Excellence co-hosted this Lewy body dementia caregiving symposium on Saturday, October 14, 2023. Featured speaker: Christina Irving, LCSW Topic: Communication Challenges for Dementia and Psychosis
2023-14 Overview of LBD - Kathleen Poston, MD
มุมมอง 2098 หลายเดือนก่อน
Brain Support Network and Stanford’s Lewy Body Dementia Research Center of Excellence co-hosted this Lewy body dementia caregiving symposium on Saturday, October 14, 2023. Featured speaker: Dr. Kathleen Poston Topic: Overview of LBD
2023-03 Looking Behavior - PSP research at Stanford
มุมมอง 29ปีที่แล้ว
2023-03 Looking Behavior - PSP research at Stanford
2021-0630 LBD Caregiver and Expert Discussion (Following "SPARK")
มุมมอง 632 ปีที่แล้ว
2021-0630 LBD Caregiver and Expert Discussion (Following "SPARK")
2017-0918 Orthostatic Hypotension in PD, MSA, and LBD
มุมมอง 912 ปีที่แล้ว
2017-0918 Orthostatic Hypotension in PD, MSA, and LBD
2019-0227 Treating PSP, MSA, and CBD - what can be done?
มุมมอง 4912 ปีที่แล้ว
2019-0227 Treating PSP, MSA, and CBD - what can be done?
2019-0823 Evaluating & Treating Urinary Issues in PD, MSA, and Other Atypical Parkinsonism Disorders
มุมมอง 992 ปีที่แล้ว
2019-0823 Evaluating & Treating Urinary Issues in PD, MSA, and Other Atypical Parkinsonism Disorders
2012-10 (3) Dementia Lewy Bodies Overview - Geoff Kerchner - Atypical Parkinsonism Symposium
มุมมอง 3612 ปีที่แล้ว
2012-10 (3) Dementia Lewy Bodies Overview - Geoff Kerchner - Atypical Parkinsonism Symposium
2012-10 (9) Resilience and Coping Strategies | Atypical Parkinsonism Symposium (LBD, PSP, MSA, CBD)
มุมมอง 512 ปีที่แล้ว
2012-10 (9) Resilience and Coping Strategies | Atypical Parkinsonism Symposium (LBD, PSP, MSA, CBD)
2012-10 (4) Progressive Supranuclear Palsy - Adam Boxer, MD - Atypical Parkinsonism Symposium
มุมมอง 1862 ปีที่แล้ว
2012-10 (4) Progressive Supranuclear Palsy - Adam Boxer, MD - Atypical Parkinsonism Symposium
2012-10 (2) Overview of Atypical Parkinsonism (LBD, PSP, MSA, CBD) - Irene Litvan, MD - Symposium
มุมมอง 892 ปีที่แล้ว
2012-10 (2) Overview of Atypical Parkinsonism (LBD, PSP, MSA, CBD) - Irene Litvan, MD - Symposium
Gracias muy interesante!
10:51 This chart still feels a bit off. Those with DLB will still go through MCI stage, right?? You don't go from nothing to dementia overnight. Also, those with PDD will first get diagnosed with PD, but then, what does DLB patients get diagnosed with before they reach dementia stage? Because dementia stage is defined as not being able to take care of themselves and that doesn't happen overnight. Are they (or even PDD patients) diagnosed as DLB/LBD even in their MCI stage?
Did you listen to the recording for an explanation of this chart? (It's been awhile since this event so I don't recall.) I believe this chart is trying to get at the idea that LBD is BOTH PDD and DLB. And that we call it DLB if the cognitive problems are within the first year. PDD "progresses" more slowly through PD and MCI, eventually ending up with PDD.
This was really clearly presented, Robin. I thank you for providing this informative program.
Thanks Dan! You are watching "oldies but goodies"!
@@brainsupportnetwork9802 Thanks for the recent MSA conference, too. Trusting you are both well!
An OT told family to imagine your brain as a computer. You can type the message, but when you go to hit send, you cannot. It helped us in layman’s terms.
Thank You
My husband found the usurp walker was not good for him. He is not a big man. But he has had poor balance for several years. He has developed a wide stance to compensate for poor balance. The u-step walker is narrow in the u so it is better for a woman or any person who does not walk with a wide stance.
Thanks for your reply. Many of us in the atypical parkinsonism (and PD) community have found the UStep to be very helpful.