Brain Support Network’s first benefactor, Hall Evans

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 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.)

“The benefits of brain donation for multiple system atrophy” – Webinar recording

Brain Support Network CEO Robin Riddle spoke on Saturday, March 6, about “The Benefits of Brain Donation for MSA” at the MSA NJ March Saturday webinar series in recognition of Multiple System Atrophy Awareness Month.

Click here for the recording.

At the beginning of the recording, Robin Riddle is speaking with Dr. Lucy Norcliffe-Kaufmann, MSA NJ Board Member.  After several minutes, you’ll hear and see Robin’s 18-minute presentation.  And then there’s an excellent question-and-answer session with Dr. Norcliffe-Kaufmann.

2021 Brain Support Network Caregiver-only Support Group Meeting Dates

Since 2004 (17 years!), we have convened nine support group meetings each year for caregivers of those with Lewy body dementia (LBD), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), corticobasal degeneration (CBD), and atypical parkinsonism.

These are separate — yet simultaneous — meetings for each disorder, though the PSP and CBD groups are usually together. Among all of three simultaneous groups, attendance is 20-30 total.  We welcome family/friend caregivers living in Northern or Central California.  Contact us if you’d like to be added to the meeting reminder email list.

Of course during the COVID-19 pandemic, our groups are meeting virtually.  Most participate with video, but it is perfectly fine to join by phone-only.

The discussion is led by caregivers who have lost their family members to these disorders. In most cases, the family member donated his/her brain and the diagnosis has been confirmed. (Brain Support Network can assist your family in making brain donation arrangements.) Discussion leaders include:

  • LBD: Dianne, Sharon, Alexa, Cristine, and Lynn
  • MSA: Candy, Barbara, Karen, Jan, and Doug
  • PSP: Cristina, JD, and Robin
  • CBD: Dick, Mindy, and Mark

These caregiver-only support group meetings are held on Sundays from 5pm to 7pm. The dates for our 2021 meetings are:

  1. January 24
  2. March 14
  3. April 18
  4. June 6
  5. July 18
  6. August 29
  7. October 3
  8. November 7
  9. December 5

In selecting these dates, we have avoided as many cultural events, sporting events, and holidays as possible.

Please put these caregiver-only support group meeting dates on your 2021 calendars now.  An email requesting RSVPs will be sent out a week or so before each meeting. RSVPs are always due by noon on the Saturday (one day) before each meeting.

All family/friend caregivers are invited:  primary, secondary, those giving hands-on care, and those managing care.  Newcomers, casual visitors, and longtime attendees are all welcome!  Former caregivers–those whose loved ones have already passed away–regularly attend.  Former caregivers have been through it all and are invaluable resources to those learning to cope.  (Our group is NOT intended for professional caregivers.)

If you are an active caregiver with a loved one at home, consider asking for a “respite care grant” from your county’s agency on aging or from your local caregiver resource center (see caregiver.org/californias-caregiver-resource-centers).  Such grants pay for a caregiver to be in your home while you attend support group meetings.  The Alzheimer’s Association (alz.org/norcal) also offers respite grants for those dealing with dementia.

We occasionally have guests.  Guests have included a family consultant from Family Caregiver Alliance, a board member of the Lewy Body Dementia Association, and a board member of CurePSP.

We have over 450 members now, with attendance of 20-30 at caregiver support group meetings (among the three simultaneous group meetings).  Roughly speaking, of the 450 members, 50% have an LBD connection, 30% have a PSP connection, 18% have an MSA connection, and 2% have a CBS/CBD connection or Atypical Parkinsonism connection.  (I believe we have the largest PSP, LBD, and MSA local support groups in the US.) If you have suggestions on how we can get the word out about our group, let me know!

We look forward to seeing you at some meetings in 2021!

By the way, if your family member with a neurological diagnosis of MSA, PSP or CBD would like to meet virtually with others, let us know.  We will try to arrange this.

Facebook’s Giving Tuesday match program – Help support our efforts at BSN (12/1/2020)

Brain Support Network is participating in Facebook’s Giving Tuesday match program, where $7 million of donations given through Facebook will be matched dollar-for-dollar, DECEMBER 1 ONLY. This match begins at 8am EST-5am PST) and will run until the matched funds run out. This means that if you donate to Brain Support Network through Facebook on December 1, your donation could be DOUBLED, but you must act quickly.

 
Brain Support Network focuses on three activities:
  1. Brain Donation. We promote and facilitate brain donation for most neurological disorders and healthy “controls.” At present, post-mortem brain tissue analysis is the *only* way to confirm a diagnosis of Lewy body dementia (LBD), Parkinson’s Disease (PD), Frontotemporal Dementia (FTD), Alzheimer’s Disease (AD), vascular dementia, Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), and Corticobasal Degeneration (CBD).
    Brain Support Network has helped over 800 families accomplish brain donation in the US. Of these families, *half* received a confirmed diagnosis that was different than the clinical diagnosis.
  2. We manage a local support group that focuses on the four atypical parkinsonian disorders (LBD, PSP, MSA, and CBD). We hold support group meetings for caregivers in Northern California, convening nine times per year in San Mateo, California.
  3. We track the research on the atypical parkinsonian disorders and maintain a website that refers to the best resources that we’ve found for caregivers. Our Facebook page posts lots of research on Parkinson’s Disease, Alzheimer’s Disease, Frontotemporal Dementia, and the atypical parkinsonian disorders. Plus we share worthwhile articles on caregiving for neurological disorders.

The MSA Coalition 2nd Patient/Family Conference of 2020 (October 23-24)

The MSA Coalition is holding a second patient/family conference this year on October 23-24, 2020. This second conference is in conjunction with Dr. Thomas Chelimsky and the team at the Medical College of Wisconsin. The conference is free. Robin Riddle with Brain Support Network will be speaking about the value of MSA brain donation. Register for the event here.