“Anti-Tau Drugs for PSP Move into Phase II”

There’s not much new here from this report from last week’s Movement Disorder Society conference in Vancouver.  This report focuses on two anti-tau drugs being studied in PSP — one from AbbVie and one from Bristol-Myers Squibb.  The BMS drug was recently licensed to Biogen.  Both drugs proved safe in phase I studies, and both have moved into phase II trials.

Tau is the protein involved in PSP and CBD.  It’s one of two proteins involved in Alzheimer’s.

Here’s a link to the report:  (you have to register — no charge to do so — at Medpage Today to read the article)

https://www.medpagetoday.com/meetingcoverage/mds/65883

Meeting Coverage > MDS
Anti-Tau Drugs for PSP Move into Phase II
But phase I study of one agent pulled from presentation
by Kristina Fiore, Deputy Managing Editor, MedPage Today
June 08, 2017

Lewy Body Dementia Info on Dementia Aide (website)

Dementia Aide, a relatively new website (dementiaaide.com), is focused on selling what it calls dementia-related products.  While a few things such as t-shirts are disorder-specific, most of the products are caregiving items.  They have pages on their website for Alzheimer’s Disease (AD), frontotemporal dementia, vascular dementia, and Lewy body dementia (LBD).

The LBD section, written in September 2016, won’t be added to our list of “Top Resources” but it’s worth checking out.  They seem to have pieced together information from lots of different resources (not always giving attribution every place they could.)  For example, the chart on the difference between LBD, Parkinson’s Disease (PD), and Alzheimer’s is straight from the Lewy Body Dementia Association but this is only pointed out in one place (not everywhere the chart is).

You might check out their infographic on what they say are the four stages of LBD (on the symptoms page).

The only obvious error I saw was that they don’t have an accurate description of “Lewy body dementia” within the Lewy body disease family.  They show Lewy body dementia is the same thing as Dementia with Lewy Body.  Actually, Lewy Body Dementia is an umbrella term that refers to both Dementia with Lewy Bodies and Parkinson’s Disease Dementia.

Here’s a link to the LBD section:

www.dementiaaide.com/pages/lewy-body-dementia

Robin

Reversal of cognitive decline in ten patients with Alzheimer’s or mild cognitive impairment

There’s an interesting article on Quartz.com from a couple of weeks ago (first published on Aeon.com) about a study done at UCLA where they “treated” ten people with Alzheimer’s Disease or mild cognitive impairment (MCI) with “different lifestyle modifications to optimize metabolic parameters—such as inflammation and insulin resistance—that are associated” with AD.  These modifications, called the MEND protocol (metabolic enhancement for neurodegeneration), included diet change, exercise, stress management, and sleep improvement.  The most common “side effect” was weight loss.

According to the author:  “What they found was striking. Although the size of the study was small, every participant demonstrated such marked improvement that almost all were found to be in the normal range on testing for memory and cognition by the study’s end. Functionally, this amounts to a cure.”

Here’s a link to the research paper titled “Reversal of cognitive decline in Alzheimer’s disease,” from the journal “Aging,” published June 12, 2016:

www.aging-us.com/article/100981/text

According to the research paper:  “It is noteworthy that these patients met criteria for Alzheimer’s disease or MCI prior to treatment, but failed to meet criteria for either Alzheimer’s disease or MCI following treatment. …[Discontinuation] of the protocol was associated with cognitive decline (here, in patient 1).”

Here’s a link to the Aeon/Quartz article:

qz.com/977133/a-ucla-study-shows-there-could-be-a-cure-for-alzheimers-disease/

AWAKENINGS
What happened when Alzheimer’s patients were treated for the diseases we actually have cures for
Written by Clayton M. Dalton, Medical resident, Massachusetts General Hospital
May 05, 2017
originally published at Aeon

Happy reading!

Robin

 

“My Life After Caregiving” (caring.com)

Though this article was written by a woman who lost her mother awhile ago to Alzheimer’s, the messages apply to all caregivers, regardless of diagnosis.

The author of this Caring.com post shares feelings and experiences she’s had post-caregiving including:
* relief:  “I felt a powerful sense of release.”
* reflection
* sadness, loneliness and guilt
* finding support:  “The need for a strong support network doesn’t end once caregiving does.”
* regaining time and money
* re-discovering happier memories

Here’s a link to the post:

www.caring.com/articles/my-life-after-caregiving

My Life After Caregiving
My experience so far after the “long goodbye”
By Dayna Steele, Chief Caring Expert
Last updated: Dec 01, 2016
(First posted: June 2016)
Caring.com

A protein called PERK may be a target for PSP, CBD, and other tauopathies

Brain Support Network will very likely be hosting and organizing a PSP/CBD conference in San Francisco in October.  (Stay tuned….) One of the international researchers we’ll be inviting to speak is Gunter Hoglinger from Munich.  He’s been involved in PSP and CBD genetics research for at least a decade.  Very impressive guy.

I was looking up a bit about Dr. Hoglinger online and came across this Science Daily article based on a press release from early February 2017 about research published by him and the German Center for Neurodegenerative Diseases (DZNE).  This is basic research using donated brain tissue, cell cultures, and mice.  This basic research can be the basis of good clinical trials down the road.

Here’s an excerpt from the Science Daily article:

“In previous studies, Höglinger and his colleagues had found that the risk for PSP is associated with variants at the PERK [protein kinase RNA-like endoplasmic reticulum kinase] gene, and that loss of PERK function induces tau pathology in humans. For the current study, they examined the functioning of this protein more closely, to see how its effects could be positively influenced. To this end, they investigated samples of brain tissue from deceased patients, cell cultures and mice with a genetic disposition for PSP.  ‘We found that the disease sequelae decrease when PERK is activated with pharmaceuticals,’ [Hoglinger said.]  ‘Therefore, the protein could be a starting point for the development of new drugs.'”

The short article is copied below.

Robin

——————————

www.sciencedaily.com/releases/2017/02/170206103407.htm

Science News
A protein called PERK may be a target for treating progressive supranuclear palsy
Acting upon the maintenance system of neurons alleviates disease sequelae in laboratory experiments

Date:  February 6, 2017
Source:  DZNE – German Center for Neurodegenerative Diseases

Summary:
The brain disease ‘progressive supranuclear palsy’ (PSP) is currently incurable and its symptoms can only be eased to a very limited degree. PSP impairs eye movements, locomotion, balance control, and speech. Scientists have now discovered a molecular mechanism that may help in the search for effective treatments.

FULL STORY
The brain disease “progressive supranuclear palsy” (PSP) is currently incurable and its symptoms can only be eased to a very limited degree. PSP impairs eye movements, locomotion, balance control, and speech. Scientists at the German Center for Neurodegenerative Diseases (DZNE) and the Technical University of Munich (TUM) have now discovered a molecular mechanism that may help in the search for effective treatments. Their study focusses on a protein called PERK (protein kinase RNA-like endoplasmic reticulum kinase). A team of researchers led by Prof. Günter Höglinger reports on this in the journal EMBO Molecular Medicine.

PSP belongs to a group of neurological diseases referred to as “tauopathies.” In these diseases, a molecule called “tau” forms clumps rather than stabilizing the cytoskeleton as it normally does. Affected neurons can degenerate or even perish. To prevent such events, pathological molecules are normally repaired or disposed of by the organism. The protein PERK is part of such a maintenance system. However, in PSP, this mechanism appears to be defective. In previous studies, Höglinger and his colleagues had found that the risk for PSP is associated with variants at the PERK gene, and that loss of PERK function induces tau pathology in humans. For the current study, they examined the functioning of this protein more closely, to see how its effects could be positively influenced. To this end, they investigated samples of brain tissue from deceased patients, cell cultures and mice with a genetic disposition for PSP.

“We found that the disease sequelae decrease when PERK is activated with pharmaceuticals. That is to say: when its effect is enhanced,” says Höglinger, who leads a research group at the DZNE’s Munich site. “These results are still basic research and far from being ready for use in patients. However, our investigations show that PERK is an important part of the disease mechanism. Therefore, the protein could be a starting point for the development of new drugs.”

Höglinger also sees potential for tackling diseases other than PSP. This is because PERK helps eliminate abnormal tau molecules, and these also occur in other brain diseases. “These results could have a broad relevance. Because defective tau molecules play an important role especially in Alzheimer’s disease,” the researcher says.

Journal Reference:
Julius Bruch, Hong Xu, Thomas W Rösler, Anderson De Andrade, Peer‐Hendrik Kuhn, Stefan F Lichtenthaler, Thomas Arzberger, Konstanze F Winklhofer, Ulrich Müller, Günter U Höglinger. PERK activation mitigates tau pathology in vitro and in vivo. EMBO Molecular Medicine, 2017; e201606664 DOI: 10.15252/emmm.201606664

“Why Many People Abandon Friends and Family” (Wall Street Journal)

Though this article is titled “Why Many People Abandon Friends and Family with Dementia–and Shouldn’t,” I think the concepts apply to those with any neurological disorder, not just dementia. Many with neurological disorders are abandoned by their friends and family.  (Or maybe I should say they are abandoned by their supposed friends and family.)

This blog post from a recent Wall Street Journal (wsj.com) is authored by Marc Agronin, MD, a geriatric psychiatrist in Miami.  He says that there’s “a lot that can be done to break negative and avoidant behaviors that impede the care and quality of life for individuals with various forms of dementia.”

Dr. Agronin suggests five basic strategies “to banish the fear and avoidance of individuals with dementia and their caregivers.”  These approaches “can make all the difference by helping them to have greater dignity, well-being and quality of life.”  The five strategies include:

1. Educate yourself about this disease.
2. Recognize the strengths that still exist.
3. Lend a hand [to the person with a disorder and their caregiver].
4. Offer some relief [to the caregiver].
5. Become an advocate for…disease awareness, early detection and research.

Here’s a link to the full article:

blogs.wsj.com/experts/2017/04/23/why-many-people-abandon-friends-and-family-with-dementia-and-shouldnt/

The Experts/Retirement
Why Many People Abandon Friends and Family with Dementia–and Shouldn’t
By Marc Agronin
Apr 23, 2017 10:01 pm ET
Wall Street Journal

Robin

 

“Dementia caregivers: Learning to live in your loved one’s reality” (Philadelphia Inquirer)

This Philadelphia Inquirer article is a report on an Alzheimer’s caregiver conference in Valley Forge.  The keynote speaker was Tam Cummings, a gerontologist from Texas.  Ms. Cummings and other speakers made several points:

* “Cummings urged family members to ask their doctors more questions — as many questions as they might ask if the diagnosis were cancer.  Knowing more, she said, may help them understand and cope with the memory lapses, confusion, delusions, falls, depression, and stubbornness that often accompany dementia.”

* “A recurring theme: People with dementia have brain damage that limits what they can do and how they can think.  It’s those around them who have to change. … If people with dementia are being obstinate or aggressive, it’s up to caregivers to try to figure out whether there is an explanation that their loved one can no longer communicate: Are they in pain? Are they afraid? Were the instructions too complicated? Have perceptual changes made the environment look dangerous to them?”

* “Cummings told the crowd that ‘your loved one’s reality is your reality.'”

This short article is worth reading.  Here’s a link to it:

www.philly.com/philly/health/Dementia-caregivers-Learning-to-live-in-your-loved-ones-reality-alzheimers-association.html

Dementia caregivers: Learning to live in your loved one’s reality
Updated: April 26, 2017 — 3:01 am EDT
by Stacey Burling, Staff Writer
Philadelphia Inquirer

Robin

Supporting, and getting support, from loved ones after a diagnosis

Though this newspaper article is about dementia, I think most of the concepts apply to everyone with a neurological diagnosis.

In Monday’s article in The Sacramento Bee, retired journalist Kent Pollock writes about his dementia diagnosis and how many with a dementia diagnosis struggle to receive support from their loved ones.

The article is here:

www.sacbee.com/news/local/health-and-medicine/article144682519.html

HEALTH & MEDICINE
APRIL 17, 2017 8:00 AM
Supporting, and getting support, from loved ones after a dementia diagnosis
By Kent Pollock
Special to The Bee

Robin

 

“Next-Generation Tau PET Tracers Strut Their Stuff” – differentiating PSP from AD

This is a report by Alzforum from the Alzheimer’s/Parkinson’s 2017 conference in Vienna at the end of March.  The focus of the report is on next-generation tau PET tracers.  Tau is the protein involved in Alzheimer’s Disease (AD), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), Pick’s disease, and chronic traumatic encephalopathy.

There are five new PET tracers under development.  The report says:

“[The] new tracers…appear at first glance to be able to overcome the limitations of the earlier compounds. In general, the newcomers boast higher brain uptake and more specific binding, yielding cleaner-looking scans with sharper distinction between positive and negative findings. While the older tracers work only in AD, some of the new ones appear to light up other tauopathies, as well. Researchers at Piramal Imaging wowed the crowd with scans showing a distinct, specific pattern of binding of their tracer in progressive supranuclear palsy (PSP) compared to AD.”  (Check out the online version of the article for AD vs. PSP images.)

The first-generation tau PET tracers described in the report are:  Lilly/Avid’s AV-1451 (flortaucipir) and THK5351, discovered at Tohoku University in Sendai, Japan, and licensed by GE Healthcare for commercial distribution.  The report indicates that both tracers have lots of problems.

As a result, many researchers are “now eyeing Merck’s and Piramal’s [tracers]. … Merck reported on their tau PET tracer, MK-6240, at the Human Amyloid Imaging (HAI) meeting held January.”  Other companies working on tau ligands include Genentech, Roche, and Janssen.

“Piramal started a Phase 1 trial on four people with AD, three with PSP, and two healthy controls. … Notably, AD and PSP scans revealed distinct patterns. In PSP, only a few discrete regions, mainly the pallidum and substantia nigra, lit up. In contrast, AD patients took up tracer in broader areas known to accumulate tau tangles, such as the lateral temporal lobe, hippocampus, entorhinal cortex, and precuneus.  Curiously, one of the AD patients had a negative tau scan. Stephens noted this patient had mild AD, with an MMSE of 26, and may not have accumulated much pathological tau yet. Incidentally, other PET experts, too, noted that as more research groups image both amyloid and tau pathology in the same cognitively impaired people, they are finding a few whose scans are amyloid-positive but tau-negative.”

Here’s a link to the full report:

www.alzforum.org/news/conference-coverage/next-generation-tau-pet-tracers-strut-their-stuff

Next-Generation Tau PET Tracers Strut Their Stuff
Series – AD/PD 2107 Draws Record Number of Scientists To Vienna
14 Apr 2017
by Alzforum

Robin

 

“Before you send your spit to 23andMe, what you need to know” (STAT News)

Here’s a very helpful article from today’s STAT News (statnews.com) about what 23andMe’s genetic reports can and cannot show.

www.statnews.com/2017/04/07/genetic-analysis-need-to-know/

Health
Before you send your spit to 23andMe, what you need to know
By Sharon Begley
STAT News
April 7, 2017

Robin