Conference Video and Notes – PSP+CBD Research Update and Practical Conference

A month ago, Brain Support Network and UCSF held an all-day conference on PSP and CBD.  One attendee reflected on the conference this way:  “Excellent speakers, all of them. This was a well-balanced program between research and practical.”

The morning was focused on updates from nine researchers, with two panels.  The afternoon was focused on practical information from a neurologist, a neuro-ophthalmologist, a social worker, a physical therapist, a speech therapist, a person with a PSP diagnosis, a person with a CBD diagnosis, and a person who cared for his wife with PSP.  There were also two practical panels in the afternoon.

Nine generous families sponsored the videorecording of the conference.  Brain Support Network asked a medical writer to take notes throughout the conference.

See our conference webpage —

www.brainsupportnetwork.org/2017-1028-psp-and-cbd-conference/

On that page, you’ll find the:
* conference agenda
* full set of notes from the day
* link to the conference video

If you’d rather pick and choose which speakers and panels you are interested in, you can use that same webpage to find:
* each speaker’s one-page handout (distributed at the conference)
* most speakers slides (not all speakers allowed their slides to be shared)
* presentation or panel notes (prepared by BSN’s medical writer)
* video of the presentations and panels

Brain Support Network makes these conference materials available to you at no charge.  We thank the speakers, attendees, and sponsors.  Without their generosity, this conference would not have been possible.  Please support our work in hosting the conference and sharing these conference materials by making a charitable contribution today.

Robin

Agenda – October 28th PSP/CBD Research Update and Family Conference

UPDATED (11-27-17):  This was a great conference!  See our complete conference webpage here:

www.brainsupportnetwork.org/conference-video-and-notes-pspcbd-research-update-and-practical-conference/

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Register now for the conference as space is limited.  Questions?  Contact us.

Here’s the tentative agenda (subject to small changes):

PSP/CBD Research Update and Practical Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (California)

Hosted by:
Brain Support Network

Organized in partnership with:
University of California San Francisco Memory & Aging Center

Generously sponsored in part by Biogen.

CHECK-IN
8am
Check-in; continental breakfast; visit exhibitor tables

WELCOME
9am
Welcome by Brain Support Network

RESEARCH UPDATE – PART ONE

9:10am  (15min)
Adam Boxer, MD, UCSF MAC – overview of PSP clinical research

9:25am  (15min)
Richard Tsai, MD, UCSF MAC – tau PET imaging for CBS

9:45am  (5min)
Dianna Wheaton, PhD, FTD Registry – update on the registry (which includes PSP and CBD)

9:50am  (15min)
Larry Golbe, MD, Rutgers Robert Wood Johnson – investigating the geographical cluster of PSP in France

10:05am  (10min)
Daniel Lee, PhD, University of South Florida, Tampa – pre-clinical research update on tauopathies

10:15am  (25min)
PANEL of previous five speakers, moderated by Alex Klein, PhD, CurePSP

RESEARCH UPDATE – PART TWO

10:40am  (10min)
Haung (Ho) Yu, PhD, Columbia – research update on clearance of misfolded tau protein

10:50am  (10min)
Stewart Clark, PhD, University of Buffalo – research update on creating a pre-clinical model for PSP

11am  (10min)
Adam Gerstenecker, PhD, University of Alabama at Birmingham – research update on functional ability in PSP

11:10am  (10min)
Gerard Schellenberg, PhD, Penn Neurodegeneration Genomics Center – what we know and don’t know about PSP and CBD genetics

11:20am  (25min)
PANEL of previous four speakers, moderated by Alex Klein, PhD, CurePSP

LUNCH
11:45am  (60min)
Lunch and visit exhibitor tables

PRACTICAL CONFERENCE – PART ONE

12:45pm  (15min)
Donna Schempp, LCSW – resilience and coping

1pm  (10min)
Leslie Wolf, person with CBD – Holding Steady on Shaky Ground

1:10pm (10min)
Phil Myers, (former) caregiver to wife with PSP, Brain Support Network – Eight Things We Learned From This Journey

1:20pm  (10min)
Jeanette Brown, MD (retired), person with PSP – Being (a) Patient with PSP

1:30pm  (30min)
PANEL of previous four speakers, moderated by Robin Ketelle, RN, UCSF MAC

BREAK
2:00pm  (20min)

PRACTICAL CONFERENCE – PART TWO

2:20pm  (25min)
Sharon Sha, MD, Stanford – Corticobasal Syndrome, Corticobasal Degeneration, and Progressive Supranuclear Palsy: What are the Tauopathies?

2:45pm  (25min)
Megan DePuy, SLP, private practice, San Mateo – what can we do about speech and swallowing problems?

3:10pm (25min)
Erica Pitsch, DPT, UCSF – what can we do about movement problems?

3:35pm  (15min)
Heather Moss, MD, neuro-ophthalmology, Stanford – what can we do about eye movement problems?

3:50pm  (30min)
PANEL of previous four speakers, moderated by Robin Riddle

CLOSING
4:20pm
Closing remarks by Brain Support Network

Note:  We are using “CBD” to refer to both CBS and CBD.

 

Register Now! Sat, Oct 28, PSP/CBD Research Update and Family Conference

UPDATED (11-27-17):  This was a great conference!  See our complete conference webpage here:

www.brainsupportnetwork.org/conference-video-and-notes-pspcbd-research-update-and-practical-conference/

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Registration is now open!

Brain Support Network will host the:

PSP/CBD Research Update and Family Conference
Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)
8am Continental breakfast/check-in
9am Speakers begin
5pm Conclusion

Cost: $55 per person until October 7; $65 until October 27
No registration at the door
Non-refundable

Register now:

https://www.eventbrite.com/e/pspcbd-research-update-family-conference-tickets-37146069895

This conference is for families coping with progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).   Professionals and anyone in the community are also welcome to attend.

The conference will be run from 8am to 5pm. The morning will feature international researchers in town for a major conference on PSPCBD, and tau. The afternoon will feature Bay Area clinicians (from UCSF and Stanford), healthcare professionals, and those on the PSP/CBD journey.

See the great speaker line-up on the agenda.

In recent days, several people have asked how this conference is different from the CurePSP conference on October 26-27.  That CurePSP conference is for international researchers. All of the talks at the CurePSP conference will be at a very high-level.  (I don’t know of any laypeople who can understand even 20% of those talks.)

It seemed like a great opportunity to ask those international researchers to stay in town through Saturday noon to give shorter and easier-to-understand talks to laypeople. That’s what we’ve done!  We’ve worked with CurePSP to know who was speaking at their conference.

Our main planning partner is Dr. Adam Boxer and the team at the UCSF Memory & Aging Center. UCSF is the lead institution for PSP and CBD clinical trials. We are lucky to have them in our backyard!

Space is limited so register now:

https://www.eventbrite.com/e/pspcbd-research-update-family-conference-tickets-37146069895

If the $55 ticket is a hardship for you, we do have a small number of scholarships available. Please contact us.

We are looking for sponsorship for videorecording ($2K) the conference.  Can you help us sponsor this so more people can benefit from the great conference?  Contact us.

We are also looking for an all-day volunteer:  (contact us)

  • digital photographer. (Requires someone with a digital camera, photography skills, interest in roaming around the ballroom and foyer the whole day, and good with people.)

We’ve opened up exhibitor registration here:

https://www.eventbrite.com/e/pspcbd-research-update-family-conference-exhibitor-registration-tickets-38393356563

Soon, we’ll be opening up registration for:  (contact us)

  • RNs, LVNs, LMFTs, and LCSWs who want CEUs.  Six CEUs are being offered through the Alzheimer’s Association.

Stay tuned.

Click here for a flyer to print and share.

Robin

Use of donated brain tissue in research

One of the key benefits of brain donation is that it enables donated tissue to be used for future research.  Families are understandably interested in knowing how their loved one’s donated brain has been used in research.

The Mayo Clinic Brain Bank does not update families on this.  With hundreds of brains in their brain bank, it would be impossible to keep all families with all diagnoses updated.

So we recommend to families what we do — look at PubMed (pubmed.gov).  PubMed is a US government-funded database of all published research articles around the world.

Conduct a search

Conduct a search in PubMed (pubmed.gov) along these lines:

XYZ (diagnosis) autopsy confirmed Mayo Dickson

XYZ is either the clinical diagnosis of your loved one or the neuropathologic (confirmed) diagnosis of your loved one.

If the neuropathologic diagnosis, it’s best if this is written in the same language as was in your family member’s neuropathology report from Mayo.  Some common neuropathologic diagnoses we see are:

* Alzheimer’s disease

* Lewy body disease  (which are some of the words used when the diagnosis is Parkinson’s Disease, PD Dementia, Lewy body dementia, or dementia with Lewy bodies)

* frontotemporal lobar degeneration (which are the words that might be used when referring to frontotemporal dementia, primary progressive aphasia, or semantic dementia)

* progressive supranuclear palsy

* corticobasal degeneration

* multiple system atrophy

* motor neuron disease

* argyrophilic grain disease

The words “autopsy confirmed” are included in the search as we are hoping to find only the research that includes donated brain tissue.

The words “Mayo” and “Dickson” are included in the search as this refers to Dr. Dennis Dickson, the neuropathologist at the Mayo Clinic.  If any research is published around the world utilizing brain tissue donated to the Mayo Clinic, Dr. Dickson will be given credit.

Search results usually go back many years.  You can refine the search by clicking on “Publication Date.”  Example:  let’s say your family member died in 2016.  You can select “1 year” to find articles published in the last year.

Look at the “Methods” section

Say that this refinement yields one article.  You can look — for free — at the abstract of the article.  Pay attention to the “Methods” section of the abstract.  This will provide a date range.  Example – “We assessed the distribution and severity of [some] pathology in [number] autopsy-confirmed XYZ [diagnosis] patients collected from YEAR to YEAR.”  Did your family member’s brain arrive at the Mayo Clinic Brain Bank during that timeframe?

You can perform this same search every so often.

Sign up for email alerts

What we at Brain Support Network do is sign up for email alerts whenever research is published using this search criteria.

It is very exciting when your loved one’s donated brain tissue has been used in research!

We at Brain Support Network will try to keep our blog site updated whenever we see research utilizing donated brain tissue that we’ve helped make arrangements for getting that tissue to Mayo’s researchers.

Thank you for donating your loved one’s brain!  You’ve helped us all by enabling research.

Robin

 

Carbonated liquids may help swallowing dysfunction (small Swedish study)

This is interesting research from Sweden on the effect of carbonated liquid on swallowing dysfunction. Though the study was done on 48 patients with Lewy body dementia, the findings likely apply to all in the Brain Support Network community.

Two interesting points were made:

1- While 40 patients had swallowing dysfunction confirmed through videofluoroscopy, 14 of these did not perceive they had swallowing symptoms.

2- Out of the patients with swallowing dysfunction, 87% had “an overall improved swallowing function with carbonated liquid.” This was true even that the pharyngeal transit time of carbonated liquid was quicker than think liquid or thickened liquid.

Of course you can test whether carbonated liquids work (for you or for your family member) by requesting they be tried during videofluoroscopy.

The abstract is below.

Robin

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www.ncbi.nlm.nih.gov/pubmed/28848329

Clinical Interventions in Aging. 2017 Aug 8;12:1215-1222.

Effects of carbonated liquid on swallowing dysfunction in dementia with Lewy bodies and Parkinson’s disease dementia.

Larsson V, Torisson G, Bülow M, Londos E.

Abstract

BACKGROUND:
Swallowing dysfunction is an increasingly recognized problem in patients with dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD), which can result in aspiration pneumonia and death. Few studies have examined potential ways of improving swallowing function in this fragile patient group. The aim of this study was to evaluate swallowing dysfunction and carbonated liquid using videofluoroscopy in DLB and PDD patients.

METHODS:
A total of 48 patients with DLB and PDD were referred for a clinical examination with videofluoroscopy. Descriptive overall assessments were provided at the time of the examination regarding swallowing function and the effects of different modifications, including carbonated thin liquid (CTL). Additionally, a repeated measures quantitative retrospective analysis has been performed comparing 1) thin liquids; 2) thickened liquids and 3) CTLs, with regard to the quantitative variables 1) pharyngeal transit time (PTT); 2) pharyngeal retention and 3) tracheal penetration.

RESULTS:
In all, 40/48 (83%) of the patients had a swallowing dysfunction, which was confirmed on videofluoroscopy, with 34/40 (85%) patients having a pharyngeal-type dysfunction. A total of 14/40 (35%) patients with an objective swallowing impairment did not have any subjective swallowing symptoms. Out of the patients with swallowing dysfunction, 87% had an overall improved swallowing function with carbonated liquid. PTT for carbonated liquid (median 633 ms, interquartile range [IQR] 516-786 ms) was quicker than for thin liquid (760 ms, IQR 613-940 ms, P=0.014) and thickened liquid (880.0 ms, IQR 600-1,500 ms, P<0.001). No significant effect was seen in residue or penetration.

CONCLUSION:
The majority of patients with DLB or PDD had a swallowing dysfunction, sometimes without subjective swallowing symptoms, which improved with carbonated liquid. This highlights the importance of investigating patients with videofluoroscopy and to carry out a prospective interventional study to further evaluate carbonated liquid, also addressing the effects on quality of life, aspiration and mortality.