Brain Support Network (BSN) sponsors various events valuable to families dealing with neurological disorders. When these events have been recorded, videos are generally available for online streaming from BSN’s YouTube channel. We also host our local support group meetings; these are open to those in Northern and Central California coping with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, and corticobasal degeneration.
UPCOMING EVENTS
Save the date! On June 29, 2024, Brain Support Network and Stanford’s Movement Disorders Center will co-host a hybrid symposium on progressive supranuclear palsy and corticobasal degeneration. Be sure you are on our PSP or CBD email list to receive information when registration opens for this event!
Caregiver-only Support Group Meetings: Usually on the second Sunday of each month, 5-6:30pm, Brain Support Network convenes THREE separate caregiver-only support group meetings — Lewy body dementia, progressive supranuclear palsy/corticobasal degeneration, and multiple system atrophy caregivers. The meetings alternate between virtual (odd-numbered months) and in-person (even-numbered months). In-person meetings are held at a restaurant in San Mateo over dinner (separate checks; seated outdoors if good weather). Attendance is open to those who live in Northern California or Central California only. RSVPs are required. For meeting details and the schedule, see our blog post. Join us!
Support group meeting for those with PSP or CBD: BSN convenes a monthly virtual support group meeting for those with a diagnosis of progressive supranuclear palsy, corticobasal degeneration, or corticobasal syndrome. Usually, the group meets on the second Sunday, 2-2:30pm. We welcome those who live in Northern California or Central California only. Caregivers may attend with as light a footprint as possible and only to help “speak for” their family member or friend with a diagnosis. RSVPs are encouraged. Join us!
Support group meeting for those with MSA: BSN convenes a monthly virtual support group meeting for those with a diagnosis of multiple system atrophy, who live in Northern California or Central California only. During odd-numbered months, the group meets on the first Wednesday, noon-1pm. During even-numbered months, the group usually meets on the second Sunday, 3-4pm. Caregivers may attend with as light a footprint as possible and only to help “speak for” their family member or friend with a diagnosis. RSVPs are encouraged. Join us!
PAST NEWS & EVENTS
Coming Soon — Recordings, Slides, and Notes from our Multiple System Atrophy (MSA) Symposium, held Saturday, May 4, 2024. This hybrid event was co-hosted by Brain Support Network and Stanford’s Movement Disorders Center.
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). El seminario fue moderado por Linda Higueras del Brain Support Network, cuyo padre padeció demencia por cuerpos de Lewy. Vea la publicación del blog para obtener un enlace a la grabación, notas (¡próximamente!) y una lista de recursos relevantes.
Brain Support Network and Stanford co-hosted a virtual meeting in December 2023 for members of local caregiver support groups. Attendees were invited to share “three things learned as a caregiver.” Participants shared advice — things they wish their younger selves knew. See our blog post with a link to the recording, an interesting summary of the advice shared, and a link to the organizers’ notes.
Brain Support Network and Stanford’s Lewy Body Dementia Research Center of Excellence co-hosted the “Lewy Body Dementia Caregiving Symposium,” a hybrid event on Saturday, October 14, 2023. This event featured expert speakers — Stanford’s Dr. Kathleen Poston and social worker Christina Irving — followed by a panel of five LBD caregivers from the Brain Support Network community. Visit this webpage for slides from the two presentations, recordings, notes, a list of Lewy body dementia resources, and a Lewy body dementia quiz.
Brain Support Network and Stanford co-hosted our second virtual “gadget” meeting in August 2023. Attendees were invited to share “gadgets” (equipment, tools) and “tricks” (techniques with everyday items) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease. Gadgets fell into various categories, including mobility, smartphone apps and Apple devices, pressure sore prevention, writing tools, and low vision items. See our blog post with a link to the recording and a link to the list of gadgets reviewed.
“Brain Donations: Who, What, Where, When, and Why?” webinar, March 17, 2023, about the crucial need for brain donations to advance the science of frontotemporal degeneration (FTD). Brain Support Network’s Robin Riddle addressed the process for all FTD families. (Note that there’s a grant available to FTD families to defray the cost.) A neurologist from the University of Pennsylvania explained the value of brain donations for FTD research. And another UPenn clinician explored brain donation with a spouse who donated her husband’s brain. This webinar was co-hosted by the Association for Frontotemporal Degeneration and the FTD Disorders Registry. View Brain Support Network’s talk and the full webinar recording.
As of August 2021, Brain Support Network’s local caregiver-only support groups have resumed in-person meetings for Lewy body dementia, progressive supranuclear palsy/corticobasal degeneration, and multiple system atrophy caregivers. Three simultaneous meetings are held. Our virtual meetings (begun at the height of covid) continue as well.
Brain Support Network co-hosted a virtual screening of the educational film “SPARK” about Robin Williams and Lewy body dementia. Following the film, two BSN LBD caregiver support members were featured in a panel discussion along with UCSF’s Dr. Bruce Miller. Co-hosted in June 2021 with Family Caregiver Alliance. View the panel recording and LBD resources.
Brain Support Network and Stanford co-hosted a virtual “gadget” meeting in June 2021. Attendees were invited to share “gadgets” (equipment, tools) they find useful in caregiving for family members with Lewy body dementia, progressive supranuclear palsy, multiple system atrophy, corticobasal degeneration, and Parkinson’s Disease. Gadgets fell into various categories, including mobility, safety, incontinence, meal-time, and medication management. See our blog post with links to the recording and a list of gadgets reviewed.
Brain Support Network’s first benefactor, Hall Evans, died at the age of 92 in late March 2021. He donated his brain to support neurological research. His brain was the 1,000th brain for which arrangements were made by BSN. Read more.
Brain Support Network CEO Robin Riddle spoke in March 2021 about “The Benefits of Brain Donation for MSA” at an MSA NJ webinar. View the recording. View all of the March 2021 Saturday webinar series for MSA Awareness Month.
The MSA Coalition held a second patient/family conference on October 23-24, 2020.This second conference was in conjunction with Dr. Thomas Chelimsky and the team at the Medical College of Wisconsin. Robin Riddle with Brain Support Network spoke about the value of MSA brain donation.
The MSA Coalition hosted their 30th annual Patient and Family Conference on September 27-28, 2019, in Orlando, Florida. Steven Russell represented BSN with two presentations on Friday, September 27th about the value of brain donation for MSA research and diagnosis. See the slide deck from his presentation. View the conference videos from Saturday.
Stanford University and BSN co-hosted a webinar on August 23, 2019, entitled “Evaluating and Treating Urinary Issues in Parkinson’s Disease, Multiple System Atrophy, and the Other Atypical Parkinsonism Disorders.” Dr. Ekene Enemchukwu, featured speaker and neuro-urologist at Stanford, discussed urinary incontinence, overactive bladder, urinary retention, and other urinary issues in PD, MSA, LBD, PSP, and CBD. Brain Support Network volunteer Candy Welch hosted. Check out the audio recording and notes.
AFTD’s 2019 Education Conference took place on Friday, May 3, 2019, in Los Angeles. Brain Support Network’s Robin Riddle talked to conference attendees about brain donation to support FTD research. Read brain donation info. View video from the conference.
Stanford University and BSN co-hosted a webinar on February 27, 2019, entitled “Treating PSP, MSA, and CBD – What can be done?” Dr. Brent Bluett, featured speaker and movement disorder specialist at Stanford, discussed the treatments available for PSP, MSA, and CBD. Brain Support Network volunteer Sharon Reichardt Walker discussed the value of brain donation for these disorders. Check out the audio recording and notes.
Stanford University and Brain Support Network co-hosted a webinar in November 2018 on “Multiple System Atrophy and Cognition.” Kathleen Poston, MD, movement disorder specialist, described the types of cognitive issues that are typical in MSA. Brain Support Network volunteer Candy Welch hosted the webinar. Check out the recording and notes. Check out the recording and notes.
“Sue’s Story”, a documentary about Sue Berghoff, was screened on October 12, 2018, in Morgan Hill. Sue Berghoff’s life was turned upside down when she was diagnosed with Lewy Body Dementia (LBD). The screening was followed by a panel discussion on LBD. Brain Support Network volunteer Dianne Weitzel was part of the panel. The documentary won the “Audience Choice Award” at the Jasper Poppy International Film Festival in April, 2018.
The Multiple System Atrophy Coalition hosted its annual family conference in the San Francisco Bay Area on September 28-29, 2018. Robin Riddle, CEO of Brain Support Network, spoke about the importance of brain donation to MSA research. View the slides from her talk. Candy Welch, leader of BSN’s MSA caregiver support group, facilitated a large discussion among MSA caregivers. Watch video from the main sessions.
AFTD’s 2018 Education Conference took place on Friday, April 13, 2018, in Chicago. Brain Support Network’s Robin Riddle was part of a panel discussing how individuals can make a difference in FTD research, explaining the importance of brain donation. Ms. Riddle joined Zoe Arvanitakis, MD, neurologist from Rush University, to address balance, falls, tremors, and other movement symptoms in FTD disorders, including PSP and CBD. Watch the conference video.
“Sue’s Story” won the “Audience Choice Award” for best documentary at the Jasper Poppy International Film Festival in April 2018. When Sue Berghoff was diagnosed with LBD, Sue’s husband Chuck Berghoff became a member of Brain Support Network’s LBD caregiver support group. BSN’s CEO Robin Riddle appears in the documentary, speaking about the importance of brain donation for LBD and the value of a caregiver support group.
The PSP/CBD Research Update and Family Conference, held on Saturday, October 28, near San Francisco was Brain Support Network’s largest conference of the year. BSN, in partnership with the UCSF Memory & Aging Center, hosted the conference for families coping with progressive supranuclear palsy and corticobasal degeneration. The conference featured 21 speakers, including 10 international researchers on PSP, CBD, and tau as well as 4 Bay Area clinicians, 2 healthcare professionals, 3 caregivers, and 2 persons diagnosed with the disorders. The conference page provides links to full video, slides, handouts, and notes for each presentation.
MSA Coalition hosted their 2017 Patient and Family Conference on October 13-14, 2017, in Nashville. Brain Support Network Board member Candy Welch spoke on the topic of brain donation. See Candy’s presentation about brain donation for multiple system atrophy. Candy also participated in two break-out sessions during the conference. Candy was formerly a caregiver to her husband, Bob, who was diagnosed with MSA in 2002. Autopsy confirmed the clinical diagnosis.
Pizza in Paradise: Saturday, September 30, 2017, in Morgan Hill, California. This event, sponsored by Chuck and Sue Berghoff, was a fundraiser for Brain Support Network. Robin Riddle spoke about Lewy Body Dementia caregiving and the importance of brain donation. This event also served as a venue for to videotape interviews that were later used as parts of the documentary “Sue’s Story”.
Webinar on Orthostatic Hypotension in PD, MSA, and LBD: Monday, September 18, 2017. This one-hour webinar on orthostatic hypotension in Parkinson’s disease, multiple system atrophy, and Lewy body dementia was presented by Stanford movement disorders specialist Dr. Veronica Santini, MD. The webinar host was long-time Brain Support Network MSA group member Candy Welch. Watch the recording of the webinar, see notes about the material, and complete a survey.
Diagnosing Progressive Supranuclear Palsy: Wednesday, August 30, 2017. This one-hour webinar on diagnosing progressive supranuclear palsy (PSP) was presented by Stanford movement disorders specialist Dr. Kathleen Poston, MD. Watch the recording of the webinar, see notes about the material, and complete a survey.
BSN Organized a Seminar on “Lewy Body Dementia Caregiving – Insights and Experience,” April 19, 2017, in Palo Alto. This seminar featured a panel with three BSN Lewy Body Dementia caregivers plus Christina Irving, LCSW, of Family Caregiver Alliance.
At the October 2016 MSA Coalition’s Patient and Family Conference, Robin Riddle represented BSN with two presentations on Friday, October 14. See the slide deck from her presentations.
Robin Riddle Honored with SCCMA’s 2016 Citizen Award on June 7, 2016 The Santa Clara County Medical Association awarded Riddle for her work to found Brain Support Network and its work to fight neurological disease. Prior recipients of the award include Mrs. Lucile S. Packard and California Senator Jerry Hill. Learn more.
AFTD 2016 Annual Education Conference, Friday, May 13, 2016, in Minneapolis. This event was sponsored by The Association for Frontotemporal Degeneration. Brain Support Network CEO, Robin Riddle, led a breakout session on practical “Tips, Resources, and Gadgets” for caregivers. Download Robin’s 2-page PDF hand-out from the event.
CurePSP Family Conference, Friday/Saturday, February 19/20, 2016. This event, sponsored by CurePSP, was important for families dealing with PSP, MSA, and CBD. The event was CurePSP’s annual conference for the Western Region and was held at the San Mateo, California, Marriott. Brain Support Network provided staffing for this event and facilitated a break-out session for patients with PSP and CBD. This event was not video recorded.
Dementia and Alzheimer’s Caregiver Conference, November 2015 in Santa Rosa. This free event was held at Jackson Theater, Sonoma Country Day School, Santa Rosa, California, and prepared for caregivers, friends, and family members. Speakers reviewed the spectrum of dementia diseases (e.g. Alzheimer’s, Lewy Body Dementia) and shared techniques for quality care. View the event agenda. Watch videos of each of the seven segments of the event on the BSN Youtube channel.
Parkinson’s and Atypical Parkinsonism Caregiver Symposium, July 12, 2014, at the Crowne Plaza in Foster City. This one-day conference was organized by the American Parkinson’s Disease Association (APDA) Information and Referral Center at the Stanford University School of Medicine in coordination with BSN which provided the event registration, staffing, and promotion. View the agenda. This event was not video recorded.
PSP and CBD Research Update, February 8, 2014 in San Francisco. Organized by the UCSF Memory and Aging Clinic with BSN. See the introduction presented by Dr. Bruce Miller of UCSF and Robin Riddle of BSN. Browse and view the full set of 10 videos from the conference available on the UCSF Youtube channel.
Atypical Parkinsonism Symposium was held on October 13, 2012 in Burlingame. Organized with Stanford University School of Medicine and featuring Dr. Kathleen Poston, Movement Disorder Specialist in Stanford University’s Movement Disorders Center. See the video on the Stanford APDA Youtube channel. BSN provided staffing for the event at the Crowne Plaza at San Francisco Airport.