Brain Support Network sponsors various events valuable to families dealing with neurological disorders. When these events have been recorded, videos are generally available for on-line streaming from BSN’s YouTube channel.
UPCOMING EVENTS
CurePSP Wellness Workshop: Holistic Wellness for PSP, CBD and MSA • Wednesday, April 19, 2023 • 12:00 – 3:00 PM ET
CurePSP is hosting a two-hour virtual wellness workshop on Wednesday, April 19 starting at 3pm PT. Speakers will focus on self-care for better sleep and wellbeing; seated movement and breathwork; and music therapy. (The presentations will be recorded and posted on the CurePSP YouTube channel.) Following the presentations, participants can join a one-hour interactive discussion group, reflecting on what wellness means to them. Registration is free.
Register Now for AFTD’s 2023 Education Conference
The AFTD 2023 Education Conference is coming to the Marriott St. Louis Grand on May 5, 2023! Join us for this unique opportunity to connect with people who understand the journey, learn about available resources and supports, and engage with experts to gain insight on the latest in FTD research and approaches to care. Read more and register here.
In 2023, Brain Support Network will be convening three monthly separate caregiver-only support group meetings — Lewy body dementia, progressive supranuclear palsy/corticobasal degeneration, and multiple system atrophy caregivers. Generally, these meetings are held on the second Sunday of each month, 5-6:30pm, alternating between virtual (odd-numbered months) and in-person/outdoors (even-numbered months). Meetings are open to those who live in Northern California. RSVPs are required. Please join us!
In 2023, Brain Support Network will be convening bi-monthly support group meetings for those with a multiple system atrophy diagnosis. Generally, these virtual meetings are held on the second Sunday of odd-numbered months, 3-4pm. Meetings are open to those who live in Northern and Central California. Caregivers should not participate. RSVPs are encouraged. Please join us!
In 2023, Brain Support Network will be convening bi-monthly support group meetings for those with a progressive supranuclear palsy, corticobasal degeneration, or corticobasal syndrome diagnosis. Generally, these virtual meetings are held on the second Sunday of odd-numbered months, 2-3pm. Meetings are open to those who live in Northern and Central California. Caregivers should not participate. RSVPs are encouraged. Please join us!
PAST NEWS & EVENTS
“Brain Donations: Who, What, Where, When, and Why?” webinar, March 17, 2023, noon PT, 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. Watch Brain Support Network’s talk here and the full webinar recording here.
CurePSP hosted its fall 2022 family conference. The focus was on building an interdisciplinary care team. View the conference talks.
As of August 2021, Brain Support Network’s caregiver-only support groups have resumed in-person meetings for Lewy body dementia, progressive supranuclear palsy/corticobasal degeneration, and multiple system atrophy caregivers. To keep the groups small, occasionally separate into spouse caregiver and adult children caregiver groups. Our virtual meetings 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 the panel discussion along with Dr. Bruce Miller from UCSF. Co-hosted in June 2021 with Family Caregiver Alliance. View the panel recording and LBD resources here.
Brain Support Network and Stanford co-hosted a virtual meeting on Sunday, June 27, 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 a link to the recording and a link to the list of gadgets reviewed.
AFTD’s 2021 Eduction Conference was held May 13th and 14th. The conference covered practical information about FTD. Discover more about AFTD’s 2021 Education Conference by visiting their event page here.
CurePSP’s Virtual Family Conference was held May 21st and 22nd. The Virtual Family Conference was a two-day conference dedicated to learning management techniques for patients, caregivers, and families living with the neurodegenerative diseases PSP, CBD, and MSA. To learn more about the conference, visit the event page here.
The MSA Coalition hosted the “MSA in Our Own Words: Care Partners Share Their Stories” webinar in March 2021. Participants learned how others have helped loved ones with MSA, how they coped in their roles as care partners, what resources they found helpful, and lessons learned along the way. Watch the recording.
Brain Support Network CEO Robin Riddle spoke in March 2021 about “The Benefits of Brain Donation for MSA” at an MSA NJ webinar. Click here for the recording. Click here for the March 2021 Saturday webinar series for MSA Awareness Month.
Columbia University’s School of Neurology hosted the Living With Lewy Body Disorders Lunch Seminar Series. The series was held virtually through Zoom. Meetings began February 11th (11:45 AM-12:45 PM EST) continuing every Thursday until March 11th. Topics included exercise, cognitive impairment, palliative care/hospice care planning, and fall prevention. For more information, visit the event page.
CurePSP hosted an International Research Symposium (Thu, Feb 4, 2021, 8:00 AM – Fri, Feb 5, 2021, 11:00 AM PST) which brought together international investigators to hear about and discuss the latest scientific advances relevant to neurodegeneration with a particular focus on rare tauopathies such as PSP and CBD. The Symposium highlighted research by leading neuroscientists. For more information, visit the event page.
Dementia Alliance of North Carolina hosted the Dr. Daniel Kaufer Memorial Caregiver Conference on February 10 & 11, 2021. This two-day conference focused on awareness, attitude, and action to increase behavioral understanding and empower your response. This two-part caregiver conference featured Authors Helen and Jim Whitworth and Pat Snyder and Dr. Trey Bateman of the Wake Forest School of Medicine. For more information, visit the event page.
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.
AFTD Webinar: Corticobasal Syndrome & Corticobasal Degeneration: Basics & What You Need to Know. Melissa Armstrong, MD, MSc, Associate Professor of Neurology at the University of Florida (Gainesville) provided an in-depth look at corticobasal syndrome and corticobasal degeneration. In the webinar, she discussed the vocabulary used in this disease (what’s the difference between the syndrome and degeneration?), how a diagnosis is made, common symptoms, expected progression, and treatment approaches.
The MSA Coalition hosted their 31st annual Patient and Family Conference on October 23-24, 2020, virtually. Visit the MSA coalition website for more information on their yearly Patient and Family Conference.
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. See the conference videos from Saturday here.
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 here.
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. See brain donation info here. See video from the conference here.
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 here.
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, describes the types of cognitive issues that are typical in MSA. Brain Support Network volunteer Candy Welch hosts the webinar. Check out the recording and notes here. Check out the recording and notes here.
“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. Find a copy of her talk here. Candy Welch, leader of BSN’s MSA caregiver support group, facilitated a large discussion among MSA caregivers. Find the video from the main sessions here.
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. See the conference video here.
“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 complete webinar, see notes about the material, and complete a survey here.
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 complete webinar, see notes about the material, and complete a survey here.
The Allan Marcus Fund for Families in Need with PSP, established in 2017 with generous funds from Allan’s family, accepted grant applications for up to $1500 in funding. Applicants did not need to be existing members of the BSN network.
BSN Organizes a Seminar on “Lewy Body Dementia Caregiving – Insights and Experience,” Wednesday, 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.
Santa Clara County or San Mateo County Families in Need – Respite Funds Before June 30th Caregiver respite funds can be spent on in-home care, adult day care, or temporary facility care. These funds must be spent by June 30th! Learn more.
CurePSP Midwest Family Conference: Friday-Saturday, June 23-24, 2017 in Chicago. CurePSP Family Conferences bring together patients and their families with others who are facing the same challenges for educational programming, and fellowship. Learn more.
AFTD’s 2016 Education Conference: Friday, May 5, 2017 in Baltimore. Join the Association for Frontotemporal Degeneration for its annual education conference at the Sheraton Inner Harbor Hotel. Frontotemporal Degeneration is an umbrella term that includes both PSP and CBD. Learn more.
CurePSP Southwest Family Conference: March 17-18, 2017 in Phoenix Brain Support Network exhibited at this CurePSP Family Conference. Incredibly, we had helped 10% of the attendees with brain donation arrangements already! Learn more.
BSN Sets New Records in 2016! Compared to 2015, we saw 45% more people donate to BSN and we accomplished 23% more brain donations. We also met our $12,000 end-of-year challenge grant in December. Thanks to the staff, volunteers, and families who made this success possible.
CurePSP 2016 International Research Symposium: Thursday-Friday, October 27-28, 2016 in Jersey City The CurePSP annual International Research Symposium that brings together international investigators to hear about and discuss the latest advances in prime of life neurodegeneration including PSP, CBD, MSA and related diseases. The Symposium highlights research by CurePSP grantees and is open to all researchers interested in clinical and basic studies. Learn more.
MSA Coalition Patient and Family Conference: Friday-Saturday, October 14-15, 2016 in New Orleans. This is the MSA Coalition’s annual “Patient and Family Conference”. Download the agenda here. Robin Riddle represented BSN with two presentations on Friday, October 14. See the slide deck from her presentations.
4th World Parkinson Congress: Tuesday-Friday, September 20-23, 2016 in Portland. World Parkinson Congresses provide an international forum for dialogue on the latest scientific discoveries, medical practices, and caregiver initiatives related to Parkinson’s disease. Learn more.
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. Click here for 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. You can see the agenda here. 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.