Axovant’s experimental drug for dementia with Lewy bodies failed in trial

Unfortunately one of the few experimental drugs being studied in dementia with Lewy bodies (DLB) has failed. The drug is known as intepirdine. The manufacturer is Axovant. Here’s a link to a short news article from this morning:

www.statnews.com/2018/01/08/alzheimers-axovant-intepirdine/

BIOTECH
A new Alzheimer’s drug, once worth billions, is headed for the trash
By Damian Garde
January 8, 2018
Statnews

Robin

 

Parkinson’s group meetings in January that may be of interest to Brain Support Network members

Happy New Year!

Some Northern and Central California Parkinson’s Disease (PD) support groups
have a guest speaker or program planned for January 2018.  I’ve listed below the meetings that may be of interest to Brain Support Network members.

In particular, I’d recommend any of the talks by Dr. Salima Brillman euphemistically referred to as “PD – more than motor symptoms.”  This refers to hallucinations and delusions.  This talk is sponsored by Acadia Pharmaceuticals, the maker of Nuplazid.  These talks may be of interest to our Lewy body dementia group members.

And I’d recommend the talk by Dr. Lin Zhang on hallucinations and delusions in Sacramento.

The talk in Fresno by Dr. Rafael Zuzuarregui on sleep and Parkinson’s would certainly have relevance to those with multiple system atrophy and Lewy body dementia.

The talk in Berkeley by Dr. Andreea Seritan on anxiety and depression in Parkinson’s will likely be worthwhile.  A fee is expected at that meeting.

Finally, our BSN member, Bob Wolf, is speaking in Walnut Creek on January 20th about his wife’s journey with Lewy body dementia.  He wrote a wonderful book called “Honey, I Sold the Red Cadillac!”

Do you need to know the support group meeting location, day/time,
contact info, and how to RSVP if required?  Please refer to the Stanford
Parkinson’s website for all Northern and Central California support groups:

http://parkinsons.stanford.edu/support_groups.html

Enjoy the rain but stay dry,
Robin

**********************

Chico
Wednesday, 1/3, 1:30-3pm
Guest Speaker:  Erica Schultheis, Butte Home Health and Hospice
RSVP?:  No.

Half Moon Bay
Friday, 1/5, 1-2pm
Guest Speaker:  Chase Montara, manager, Adult Day Healthcare Program, Half Moon Bay Senior Center
Topic:  Spirituality and health challenges
RSVP?:  No.

Yuba City (Tri-Counties)
Monday, 1/8, 1-2pm
Guest Speaker:  Jennifer Kim, OT, occupational therapist, Fountains Skilled Nursing and Physical Rehab Center
Topic:  Adaptive equipment and strategies for successful self-feeding
RSVP?:  No.

Union City/Mark Green Sports Center
Tuesday, 1/9, 2:45-4pm
Guest Speaker:  Michael Galvan, Community Resources for Independent Living (CRIL)
Topic:  Assistive devices to help with PD
RSVP?:  No.

Palo Alto Young Onset Parkinson’s
Location:  Stanford Hospital H3210 (third floor)  (Jan. meeting only)
Tuesday, 1/9, 6:30-8pm
Guest Speaker:  Joyce Liao, MD, neuro-ophthalmologist, Stanford
Topic:  Vision and reading difficulties in PD
RSVP?:  Yes, if this is your first time attending.  Please RSVSP to
Martha Gardner, group leader, at least one day in advance

Menlo Park/Little House  (New meeting location!  No longer at Avenidas
in Palo Alto.)
Wednesday, 1/10, 2-3:30pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  Current Parkinson’s treatments and what’s in the pipeline
RSVP?:  No.

Robin’s Note:  This is NOT focused on hallucinations and delusions but they will certainly be addressed.

Sonoma/Vintage House
Thursday, 1/11, 10-11am
Guest Speaker:  Gillian Galligan, executive neuroscience sales specialist, Acadia Pharmaceuticals
Topic:  Beyond motor symptoms – overview and new treatment option for hallucinations and delusions
RSVP?:  No.

Stockton
Thursday, 1/11, 1:30-3pm
Guest Speakers:  Kevin Chiong and Nanci Shaddy
Topic:  Delay the Disease (exercise program)
RSVP?:  No.

Redding
Friday, 1/12, 1-3:30pm
Discussion Topic:  Communication and relationships
RSVP?:  No.

Fresno
Saturday, 1/13, 10am-noon
Guest Speaker:  Rafael Zuzuarregui, MD, movement disorders specialist,
UCSF Fresno
Topic:  Parkinson’s and sleep
RSVP?:  No.

Pleasanton
Saturday, 1/13, 10am-noon
Guest Speaker:  Salima Brillman, MD, movement disorders specialist, private practice, Menlo Park
Topic:  Parkinson’s – more than motor symptoms
RSVP?:  No.

San Jose/The Villages
Tuesday, 1/16, 10am-noon, Cribari Auditorium
Guest Presenters:  Mwezo and Jane, Kujiweza
Program: Interactive workshop on how to fall, how to get up, and fall
prevention.  Wear comfortable clothing.
RSVP?:  Yes, required if you are not a resident of The Villages. Contact
Alice Pratte, group leader, 408-223-8033, at least 24 hours in advance
to obtain community access.

Sacramento/Arden Arcade
Thursday, 1/18, 10am-noon
Guest Speaker:  Lin Zhang, MD, PhD, movement disorder specialist, UC Davis
Topic:  Hallucinations and delusions connected with PD
RSVP?:  No.

Salinas
Thursday, 1/18, 1-3pm
Guest Speaker:  Salima Brillman, MD, movement disorder specialist, private practice, Menlo Park
Topic:  PD – more than motor symptoms
RSVP?:  No.

Walnut Creek (Mt. Diablo)
Saturday, 1/20, 9am-noon  (speakers 10:45am-11:45am)
Guest Speaker #1:  Lori Santos, Rock Steady Boxing (RSB) East Bay
Topic #1:  Fighting back against PD with RSB
Guest Speaker #2:  Bob Wolf, group member and author of “Honey, I Sold the Cadillac”
Topic #2:  Bob’s journey with Lewy body dementia
RSVP?:  No.

Berkeley
Saturday, 1/20, 10:30am-noon
Guest Speaker:  Andreea Seritan, MD, geriatric psychiatrist, UCSF
Topic:  Addressing anxiety and depression in PD
RSVP?:  Yes, required to PDActive, 510-832-8029
Fee:  $10 (suggested)

Mill Valley (Marin County)
Friday, 1/26, 1-3pm (speaker is from 1-2pm)
Guest Speaker:  Sandra Shefrin, MD, movement disorder specialist, private practice, Mill Valley
RSVP?:  No.

2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.

CHALLENGE GRANT

This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

Important Research – First Genome-Wide Association Study in DLB

This is a good summary from Alzforum about research published last Friday out of two of the world’s largest brain banks — the University College London and the Mayo Clinic Jacksonville.  Researchers genotyped 1743 patients — 1324 of those patients had autopsy-confirmed dementia with Lewy bodies.  They were looking for genome-wide associations in dementia with Lewy bodies (DLB).  Basically, they were trying to answer the question — how much of DLB can be explained by genetics?

This breakthrough research was made possible through brain donation.  Our nonprofit, Brain Support Network, has helped over 450 families with brain donation.  All of those families we’ve helped where the diagnosis was confirmed DLB were involved in this important research!  Please let us know if this is interest to your family and we can help make advance arrangements.

“The researchers calculated that, overall, genetic variants account for about 36 percent of the risk for DLB in this sample. This is roughly the same as for PD, but much less than that for late-onset AD.”  Previously-known associations were confirmed — APOE, SNCA (synuclein), and GBA.  “The APOE locus emerged as the most strongly associated with DLB, with the SNCA gene for α-synuclein next. Interestingly, though, the particular SNCA SNPs were different from the ones associated with PD.”  A new loci was discovered — CNTN1.

The study was funded by two UK organizations — Alzheimer’s Society and Lewy Body Society.

Here’s a link to the Alzforum summary:

www.alzforum.org/news/research-news/first-genome-wide-association-study-dementia-lewy-bodies

First Genome-Wide Association Study of Dementia with Lewy Bodies
15 Dec 2017
Alzforum

And MedicalXpress had a good summary of the research as well.  Here’s a link to that as well:

medicalxpress.com/news/2017-12-dementia-lewy-bodies-unique-genetic.html

Dementia with Lewy bodies: Unique genetic profile identified
December 15, 2017
MedicalXpress

Robin

Coping with problem behaviors (DICE approach and a useful caregiver guide book)

The NIH (National Institutes of Health) hosted a two-day summit in October 2017 on research that is needed to improve quality of care of persons with dementia and their caregivers.  The summit was streamed live.  The summit was of most interest to those involved in research.  Only a few useful ideas were shared, including the DICE approach, which we’ve heard about previously.  It is an approach to responding to difficult behaviors.

DICE =

Describe – the who, what, when and where of situations where problem behaviors occur (the physical and social contexts)

Investigate – current dementia symptoms, medications, sleep habits, etc. that may be contributing to difficult behavior.

Create – a plan to prevent and respond to difficult behaviors by changing environment and educating the caregiver.

Evaluate – how well the plan is being followed and how it is working.  Make necessary adjustments that work for the family.

Recently, Laurie White, a social worker in the North Bay, sent me a copy of her excellent guide for family caregivers on “Coping with Behavior Change in Dementia” (dementiacarebooks.com).  (The book is to be shared within our local support group.)  Basically, this is a handbook to implementing the DICE approach.  Laurie and co-author Beth Spencer begin by saying that the family caregiver must become a “detective” to understand the cause of these behaviors.  They address coping with the 4As – anxiety, agitation, anger, and aggression – among other problems.  One guide book gives lots more helpful ideas to dementia caregiving than an entire two-day NIH conference!

Robin