Allon announces PSP clinical trial results (davunetide)

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This is very disappointing news out of Allon Therapeutics, a Canadian company paying for a trial of davunetide in progressive supranuclear palsy (PSP). I’ll see if I can find out more details. UCSF was the lead investigator of the study.

Robin

http://www.allontherapeutics.com/2012/12/allon-announces-psp-clinical-trial-results/

Allon announces PSP clinical trial results
December 18, 2012

VANCOUVER, B.C. — Allon Therapeutics Inc. (TSX: NPC) announced today that its pivotal clinical trial evaluating its lead product candidate davunetide as a treatment for progressive supranuclear palsy (PSP) failed to demonstrate efficacy in this population.

The study had co-primary outcome measures: the Progressive Supranuclear Palsy Rating Scale (PSPRS), and the Schwab and England Activities of Daily Living (SEADL). Data analysis failed to detect an effect on either the PSPRS or the SEADL.

The study also examined a series of secondary and exploratory endpoints. There was no evidence of a drug effect on these secondary or exploratory endpoints in the pre-specified analysis. The Company will undertake further analysis to determine if there is any evidence of an effect or explanation for the absence of an effect.

“At-home caregivers face challenges, sacrifice” (SJMN, 12-2-12)

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This post is about at-home caregivers.

Lisa Krieger, a journalist at the San Jose Mercury News (mercurynews.com), has been doing a wonderful series on the cost of dying.  Local Brain Support Network member Lana pointed out Lisa’s most recently installment in the series at the most recent caregiver support group meeting.  Lana noted that the most recent installment isn’t really about the cost of dying but addresses the physical, emotional, and financial toll on family caregivers in taking care of loved ones at home.  Others at the meeting who had also read the article said it was right on target.

The article mentions Barbara Gruenwald, another member of our local Brain Support Network group.  Barbara cares for her husband with Lewy Body Dementia.

There are two interesting graphics in the article, which are worth checking out online.  One graphic shows the relative cost of assisted living, nursing home, adult day services, home health aide, and homemaker services.  (I’m not really sure they meant to say “home health aide.”  I thought the industry called these “personal care aides.”)  This graphic shows what a great deal adult day services are.  I encourage you all to consider this.

The other graphic shows the ages of “informal caregivers.”  We see a very similar breakdown in our local support group — most people are in the 50-64 year old category, and the second most people are in the 35-49 year old category.  However, we don’t have many 18-34 year olds in our local support group.  We have lots of group members over 65 and some over 75.

If you go to the SJ Mercury News website, there’s a 9-minute video narrated by Lisa Krieger.  The video is not as compelling as the article.

Here’s a link to the article:

www.mercurynews.com/bay-area-news/ci_22102247/cost-dying-at-home-caregivers-face-challenges-sacrifice

Cost of Dying: At-home caregivers face challenges, sacrifice
By Lisa M. Krieger
San Jose Mercury News
Posted:   12/02/2012 05:16:55 PM PST

Robin

How-to videos – getting out of bed, walking with a walker, etc.

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This series of how-to videos was recently produced by CurePSP (psp.org).  These videos are not specific to progressive supranuclear palsy (PSP) but are applicable to anyone coping with a movement disorder.  The videos are available on CurePSP’s YouTube site:

www.youtube.com/user/CurePSPHowTo

CurePSP gave me a bunch of DVDs of these videos for our October 2012 atypical parkinsonism symposium.  I just got around to watching one of the DVDs.

There are 41 videos in the series.  The videos are divided into those which show someone how to do the activity on his/her own and show someone (family member, caregiver, aide) how to help with this activity.  The videos are short — 30 seconds to a couple of minutes.  The activities are broken down into small segments such as walking with a rolling walker and turning with a rolling walker.

Some of the 41 topics include:

* Getting Out of Bed
* Walking with a Rolling Walker
* Walking with a Cane
* Approaching a Chair
* Common Mistakes When Getting Out of a Chair
* Correctly Getting Out of a Chair
* Using the Power Stance – when brushing your teeth, for example
* Getting into Bed without a Handrail
* Getting Dressed
* Grooming Techniques
* Getting Up From a Fall

There are also some videos with strengthening exercises, upper body exercises, and flexibility exercises.  (My father’s physical therapist and occupational therapist gave my father the same exercises.)

Robin

WSJ Article About Tau Researcher

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This post is about tau protein. Tau is the protein involved in PSP, CBD, and Alzheimer’s Disease.

This Wall Street Journal article is on researcher Claude Wischik, tau protein, and Alzheimer’s research. Dr. Wischik “has long backed a minority view: that a protein in the brain called tau – not plaque – is largely responsible” for Alzheimer’s. Since this article is from the WSJ, there is an investment focus to part of the article.

For me, the most interesting part of the article was one sentence in parentheses. Dr. Wischik founded a company called TauRX Pharmaceuticals. They did a small study of a tau drug, called Rember, in Alzheimer’s patients. They never published the full results. “(Dr. Wischik says it didn’t to protect the company’s commercial interests.)”

There’s also a 5-minute video that focuses on the tau vs. amyloid debate. (This is sometimes called the “tauists vs. the BAPtists.” BAP = beta amyloid protein.) I’d recommend watching the video and then reviewing the article, if you are still interested.

Robin

5-minute video (after 15-second ad) on tau tangles, why Dr. Wischik focused on tau, why the rest of the community focused on amyloid, and what else is going on besides protein accumulation:

http://online.wsj.com/article/SB1000087 … bs%3Dvideo

http://online.wsj.com/article/SB1000087 … %3Darticle
(I was able to view the full article this morning though it’s listed as “subscriber content only.” Probably this website error will be fixed soon)

HEALTH INDUSTRY
Updated November 9, 2012
Wall Street Journal

An Outcast Among Peers Gains Traction on Alzheimer’s Cure
By Jeanne Whalen

Some people collect stamps, others vintage cars. As a young Ph.D. student at Cambridge University in the 1980s, Claude Wischik was on a mission to collect brains. …

“Cost of Living Longer” (WSJ 10-26-12)

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The basic point of this Wall Street Journal article on “The Cost of Living Longer” is:  “People who identify the specific services their loved ones need, haggle aggressively on price and explore alternative-care options can save money—or at least get more care for the money they do spend, experts say.”

One alternative-care option mentioned in the article is “buying a medication-monitoring system rather than pay for a nurse to do so, a service that costs $347 a month on average, according to MetLife. The website e-pill.com offers several different choices.”

One care option not mentioned in the article is home care.  The article’s author seems to not be aware that there’s a difference between “home care” and “home health (care).”  The term “home health” refers to a skilled need from a healthcare professional.  The term “home care” refers to hands-on personal care and light housekeeping.  There are lots of home care agencies out there; they are not closely regulated like the home health agencies are.

IMPORTANT!  When considering options for home care agencies, home health agencies, adult day care, assisted living facilities, care consultants and geriatric care managers, look in to the organizations or individuals who attended educational conferences on the disorder of interest.

Here’s a link to the article:

online.wsj.com/article/SB10001424052970203937004578079184108523030.html

FAMILY FINANCES
Wall Street Journal
The Cost of Living Longer
By Kelly Greene
October 26, 2012, 5:12 p.m. ET

Robin