Brain Support Network was proud to co-host with Family Caregiver Alliance (caregiver.org) a panel discussion following the movie “SPARK!” about Robin Williams and Lewy body dementia (LBD). Featured panelists were Bruce Miller, MD, neurologist and director of the Memory & Aging Center, UCSF; Dianne, caregiver to her late husband Gary; and Denise, caregiver to her late father Harry. Both Gary’s and Harry’s diagnosis of LBD were confirmed through brain donation, arranged by Brain Support Network.
Brain Support Network was proud to co-host with Family Caregiver Alliance (caregiver.org) a panel discussion following the movie SPARK! about Robin Williams and Lewy body dementia (LBD). The panel featured:
- Bruce Miller, MD, neurologist and director of the Memory & Aging Center, UCSF. Dr. Miller played a key role in SPARK! in explaining symptoms of Lewy body dementia.
- Dianne, caregiver to her late husband Gary. Gary’s diagnosis of LBD was confirmed through brain donation. Dianne is the leader of the local BSN LBD caregiver support group meeting.
- Denise, caregiver to her late father Harry. Harry’s diagnosis of LBD was confirmed through brain donation. Denise is a longtime member of the local BSN LBD caregiver support group.
The panel moderator was Robin Riddle, CEO of Brain Support Network.
The recording from the June 30, 2021 panel is now available here:
In its post-film and post-panel resource list, Family Caregiver Alliance refers to BSN’s Lewy body dementia webpage and, in particular, BSN’s “Top Resources for Lewy Body Dementia” list:
Brain Support Network and Stanford co-hosted a virtual meeting on Sunday, June 27. 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:
– Medication management
Here’s a spreadsheet (posted to Google Drive) we prepared with info on all the items shared:
Here’s the recording of the meeting, where many of the items are shown (in a show-and-tell fashion).
Notes about the meeting will be coming soon! Keep your eye on this blog post!
Brain Support Network will be co-hosting with Family Caregiver Alliance a virtual screening of the educational film “SPARK” on Wednesday, June 30, 11am-12:30pm PT. “SPARK” is a terrific new documentary created by the Lewy Body Dementia Association and the producers of “Robin’s Wish.” It’s about Robin Williams and Lewy body dementia (LBD).
After the 40-minute film, there will be a 45-minute panel discussion featuring three people you must see/hear —
* Bruce Miller, MD, director of the UCSF Memory & Aging Center,
* Dianne Weitzel, leader of the local SF Bay Area LBD caregiver support group, and
* Denise Dagan, long-time volunteer with Brain Support Network.
Dr. Miller is featured in the film “SPARK” as an expert on LBD. Dianne’s husband Gary died several years ago; LBD was confirmed through brain donation. Denise’s father Harry died several years ago; LBD was confirmed through brain donation. (The brain donations were both arranged by Brain Support Network. Note that LBD is confirmed through brain donation less than half the time.)
Even if you’ve recently seen “SPARK,” please tune in for the panel discussion as Dr. Miller, Dianne, and Denise are not to be missed. Dr. Miller has great empathy for those on the LBD journey. He is a treasure to the dementia community in the San Francisco Bay Area. Dianne and Denise are caregivers who have experienced hallucinations, delusions, fluctuating cognition, and dementia-related behavior. Both are long-time members of BSN’s local LBD caregiver-only support group meeting. The panel discussion will be recorded.
I saw a private viewing of “Robin’s Wish” before it was released a couple of years ago. While the film has wonderful interviews with Robin Williams’s family and friends, it was not focused on LBD. In contrast, “SPARK” is focused on LBD.
This film and our 45-minute panel discussion are ideal for all Lewy body dementia and Parkinson’s disease dementia caregivers — regardless of the stage of caregiving. There will be something here for every caregiver, family member, or friend.
If for some reason you can’t make that day/time, please register. Christina Irving and other friends at Family Caregiver Alliance (FCA) are coordinating this event. We believe they will alert all registrants when the recording for the panel discussion is posted to the FCA YouTube channel.
A personal note from Brain Support Network CEO Robin Riddle:
Back in 2006, a small group that started a non-profit that, among other things, helps families with brain donation arrangements to support research for a cure of neurological disorders.
In 2012, we were registering the non-profit with the IRS. My father-in-law Hall Evans and his wife Olivia came up with the best name–Brain Support Network–and helped select our logo. And, more importantly, the IRS requires pledges of a substantial contribution to fast-track approval of 501(c)(3) status. Hall, believing in the effort, pledged a $10k contribution and provided a letter to the IRS to that effect.
Hall did this in part, no doubt, because my father was no longer alive. Indeed, my father’s brain was the first brain I ever made arrangements to have donated. The IRS gave the corporation 501(c)(3) status in late 2012. Hall and his wife Olivia suggested challenge grants as a fund-raising strategy and made challenge grants every year since.
Hall wanted to donate his brain as well. Brain Support Network organized his brain donation that took place the day he died–because brain bank research protocols require donation within 24 hours of death.
Hall’s brain was the 1,000th brain donated for research by our organization! In the brain research world, 1,000 brains is a very large number. Important research has been published utilizing those thousand brains, including research into COVID-19, various types of dementia, and Parkinson’s Disease. We expect Hall’s brain will contribute to that body of research, as well.
Most of the brains we help recover are banked at the Mayo Clinic’s national brain bank in Jacksonville, Florida. In 2020, our non-profit was responsible for 40% of the total number of brains provided to Mayo.
In a few months, the Mayo Clinic will be able to tell us exactly what neurological condition Hall had, because unequivocal diagnosis is only possible upon autopsy. (Even when done by board-certified neurologists, 50% of clinical diagnoses of neurological disorders are wrong.)