A Flag Day activity

Hi, everyone. Sorry for my multi-month absence — nothing more than writer’s block and competing commitments. The first seems to be un-blocking itself, though the latter continues, at least until summer.


I thought I’d pass along something verbatim from today’s email: an on line/in person informational symposium you might want to take advantage of.

Most of you are already plugged into CurePSP’s extensive information and support services, but this announcement is from an independent non-profit called the Brain Support Network, in Menlo Park, CA. It’s run by Robin Riddle, whose father had PSP and whose professional background is in marketing for tech companies in Silicon Valley. The BSN started mostly as a service for families wishing to donate their loved one’s brain to research, but has developed into an excellent source for information and support as well.



PSP-MSA-CBD Caregiving Symposium
Saturday, June 14, 2025, 10am-3pm PT

Online and In-Person (Stanford Campus)


This event is designed specifically for caregivers, partners, and family members who care for those with PSP, MSA or CBS. The in-person event is for caregivers only. Obviously, this doesn’t apply to online attendance, though the program is focused on caregiving. There is a small registration fee. Scholarships are available.

Speakers include:
• a movement disorder specialist on what caregivers can do for these three atypical Parkinsonian disorders;
• a psychologist on the caregiver’s journey;
• two social workers on the effects of neurological decline on the family unit; and
• a panel of PSP, MSA, and CBD caregivers, many of whom are Brain Support Network group members.

Attend Online:
• bit.ly/june14atypical-virtual
• Registration ends on June 14, 11am PT

Attend In Person on Stanford Campus:
• bit.ly/june14atypical-campus
• Registration ends on June 12, noon PT

PSP by the Bay

Just returned from the annual CurePSP International Research Symposium, held this year in on the campus of University of California San Francisco on October 27.  About 120 researchers attended, many from Europe and Japan.  The first keynote speaker was Bruce Miller from UCSF, perhaps the country’s leading behavioral neurologist, who gave an overview of PSP/CBD research with an emphasis on activity of the Tau Consortium, the multi-institutional research group that he directs.  The other keynoter was Robert Stern, a neuroscientist at Boston University who directs clinical research at BU’s Chronic Traumatic Encephalopathy Center.

Bruce’s talk touched on many topics — from the nosology and pathology of the various cognitive/behavioral syndromes in the tauopathies to the sleep disturbance in PSP (hyperarousal is common in PSP, while hypoarousal predominates in CBD).  Perhaps most interesting was his up-to-the minute summary of the state of tau PET imaging in PSP diagnosis (not nearly ready for prime time, though potential exists).

Bob’s lecture summarized the story of CTE.  He emphasized that the most important frequent cause isn’t concussions, but the continual sub-concussive blows to the head such as those suffered by football players during routine blocking and tackling.  He was too smart to speculate much about a relationship between the tauopathy of CTE and that of PSP, but I’m not:  I’ll say that in both cases, individuals with a genetic predisposition to tau aggregation are exposed to a precipitating factor – repeated brain tissue stretching for one, some sort of toxin for the other.  If we can find the genetic background for one, we may find it for the other.

Perhaps the genetic answers will emerge from the whole-exome sequencing project that is complete and in the writing phase or the whole-genome sequencing project that is well under way. But as pointed out in another Symposium talk by Jerry Schellenberg, the U Penn geneticist who heads those efforts for the PSP Genetics Consortium, there’s a lot of “genetic dark matter” in the form of genomic deletions, undetectable by mere sequencing.

Maybe in future posts I’ll get more into the other excellent CurePSP Symposium talks – and the 18 concomitant poster presentations.  Or maybe I’ll get distracted by a random shiny object I find somewhere else.

The Gathering

Now’s the time to arrange your October schedule around CurePSP‘s annual International Scientific Symposium.  The proceedings will be dawn to dusk on Saturday, October 18, 2014 in Baltimore at Johns Hopkins’ Mt. Washington Conference Center.  As usual, I’m privileged to be its scientific director and master of ceremonies.

As always for this shindig, the technical level will be very high, with scientists talking to scientists.  No lay-language summaries. There’s always time for everyone to contribute ad libitum during the ample discussion periods.  A lot of the meeting’s material is unpublished and it’s a great place to form new ideas and collaborations.

The agenda has two categories of speakers: recent CurePSP grantees presenting the results of their funded work completed within the past year; and internationally-known authorities describing the state of the art in their own areas.  This year, the grantees are Diana Apetauerova, Nilufer Ertekin-Taner, Stuart Feinstein, Pau Pastor, Michael Wolfe and Benjamin Wolozin .  The invited speakers are Adam Boxer, Günter Höglinger, Virginia Lee and John Trojanowski.  As always, Dennis Dickson will update the group on the operations of CurePSP’s brain bank, which he directs, and on the projects of his arising from that collection.  There will also be a few posters, with brief, live presentations by those PIs.

But perhaps the star attraction will be Jerry Schellenberg presenting the preliminary results of his much-anticipated whole-exome sequencing project in PSP.  We have reserved a large chunk of the schedule for his talk and for talks by a number of experts in the most promising genes identified by the WES.

Registration is free!  (but required) If you’re a student (medical or grad or other), fellow (clinical or research) or resident (neurology or other), CurePSP offers travel scholarships  Breakfast and lunch will be provided to all registrants.  I’ll post the exact schedule as soon as I can, but you can assume that the first speaker will start at about 7:45 AM and that we’ll all head for the nearest bar at about 5:00.

Poster submissions are welcome.  Please submit them by September 5 to abantum@curepsp.org with a copy to me (golbe@rutgers.edu).  I’ll have a decision for you by Sept. 10.

For more information, go to http://www.psp.org/research/researchers/symposium.html