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.
Stanford University and Brain Support Network are co-hosting a webinar on “Treating Progressive Supranuclear Palsy, Multiple System Atrophy, and Corticobasal Degeneration – What can be done?” on February 27th. More info.
AFTD’s 2019 Education Conference: Friday, May 3rd, 2019, in Los Angeles. See the list of speakers for the Association for Frontotemporal Degeneration’s annual conference. And register now. Brain Support Network will have an exhibitor table at the conference where we can speak with families about brain donation and the movement disorder types of frontotemporal degeneration.
PAST NEWS & EVENTS
Stanford University and Brain Support Network co-hosted a Multiple System Atrophy and Cognition webinar in November 2018. Check out the recording and notes here.
On October 12th in Morgan Hill, Brain Support Network members were invited to a screening of “Sue’s Story,” a documentary about Sue Berghoff, whose life was turned upside down when she was diagnosed with Lewy Body Dementia. The screening was followed by a panel discussion on LBD. Our representative, Dianne Weitzel, was part of the panel.
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 at the conference. And Ms. Riddle facilitated a discussion among those with an MSA diagnosis at the conference. Find the video from the main sessions here.
AFTD’s 2018 Education Conference: Friday, April 13, 2018 in Chicago. Brain Support Network’s Robin Riddle was part of a panel discussion about how individuals can make a difference in FTD research. She spoke in particular about the importance of brain donation in finding answers for all frontotemporal degeneration disorders. In addition, Ms. Riddle joined Zoe Arvanitakis, MD, neurologist from Rush University, to address balance, falls, tremors, and other movement symptoms in frontotemporal degeneration disorders, including progressive supranuclear palsy and corticobasal degeneration. Find the video of the conference here.
Congratulations to “Sue‘s Story” — winner of the “Audience Choice Award” for the best documentary at last weekend’s Jasper Poppy International Film Festival in Morgan Hill, California. When Sue Berghoff was diagnosed with Lewy Body Dementia (LBD), her life was turned upside down. Like most people, she had never heard of the disease even though it is the second most prevalent form of dementia after Alzheimer’s. She encountered a society in which the existence of dementia is burdened by misconceptions, fear and shame. What she did next created a ripple effect of hope and change. Sue‘s husband Chuck Berghoff is a member of Brain Support Network’s LBD caregiver support group. Brain Support Network’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. Stay tuned for more news about the distribution of “Sue‘s Story.”
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 a 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 2017 Patient and Family Conference: October 13-14, 2017 in Nashville. Brain Support Network Board member and former MSA caregiver Candy Welch spoke on the topic of brain donation and two break-out sessions during the conference. Here’s a copy of Candy’s presentation about brain donation for multiple system atrophy.
Pizza in Paradise: Saturday, September 30, 2017, in Morgan Hill, California. Fundraiser for Brain Support Network. Robin Riddle spoke about Lewy Body Dementia caregiving and the importance of brain donation.
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 earlier this year 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 – Click here to learn more
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. Learn more.
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.
CurePSP: Patient and Medical Professionals Education Day Focus on PSP, Thursday, June 2, 2016 in Philadelphia. Want to learn more about progressive supranuclear palsy (PSP)? Join CurePSP, Penn Medicine and The Dan Aaron Parkinson’s Rehabilitation Center/Good Shepherd Penn Partners (GSPP) for an interactive educational day. 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, 4400 Day School Place, Santa Rosa, California, and intended 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 a PDF of the event agenda. Access videos of each of the seven segments of the event on the BSN Youtube channel.
Parkinson’s and Atypical Parkinsonism Caregiver Symposium, July 2014 in Foster City. Organized with “Stanford University School of Medicine”. This event was not video recorded.
PSP and CBD Research Update, February 2014 in San Francisco. Organized with “UCSF Memory and Aging Clinic”. See the video on the UCSF Youtube channel.
Atypical Parkinsonism Symposium, October 2012 in Burlingame. Organized with “Stanford University School of Medicine”. See the video on the Stanford APDA Youtube channel.