as we open the month of april, parkinson's awareness month ... · as we open the month of...
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Dear WPC friends,
As we open the month of April, Parkinson's Awareness Month, the World Parkinson
Coalition team wants to give a shout out to the community members who are
pushing the Parkinson’s agenda to get more funding for Parkinson’s research,
volunteering for clinical trials, designing new treatments to ease the burden of living
with PD and more. You know who you are, and we thank you.
The first World Parkinson Congress pushed the Parkinson’s agenda in 2006 with its
fully cross-pollinated learning experience for all members of the PD community. It
was the first time people with Parkinson’s were invited to sit with neuroscientists,
clinical researchers, rehab specialists, nurses, and others to hear the same talks,
ask questions to the same speakers and be part of the discussion. It was ground
breaking then, and it continues to inspire new participants with every WPC.
As we count down the months to the 5th World Parkinson Congress in Kyoto, Japan
in June 2019, we are planning once again to push the Parkinson’s agenda and to
have some fun while doing it.
The WPC program committee spent one year planning the program and finalized
details in January this year when they hid away in a meeting room in Brooklyn, NY
for two days to review session nominations, program topics, discuss and debate
best presenters. They did this in order to design a program that highlights some of
the most exciting basic and clinical scientific research being explored today, along
with topics on care and treatments that are innovative and exciting. Program details
will be announced in June, so stay tuned and start making plans to join us in Kyoto.
Now for the fun part, if you haven’t already heard about our Haiku competition, be
sure to check it out, the submissions to date are fabulous, funny, and a bit
“sciency”! Top poems will be seen in Kyoto in the final program and maybe even
show up on a screen or two. We are also opening the first-ever WPC Song
competition this month, inviting song-writers everywhere to write the lyrics and
music for the WPC 2019 song to be sung by the WPC Choir at the opening
ceremony. Poems and songs, what better way to start April than to embrace these
creative endeavors?
Get ready! Just 160 days until the WPC 2019 registration opens.
Warm regards,
Elizabeth "Eli" Pollard
Executive Director
WPC Blog HighlightThe Future of IPS Cell Transplantation in Parkinson'sDisease
by Ryuji Kaji, MD, PhD
As a movement disorder specialist, I have been asked by a number of people with
Parkinson’s (PwP) whether iPS cells will find their place in PD treatment. The
answer is definitely ‘Yes’, but I always say to them that there needs to be another
twist or turn before being used as a standard therapy. Of
course, uncontrolled proliferation or transformation into
cancer cells has been the major concern, but that has
been handled quite safely at least in a monkey model of
PD. The biggest concern is the control of dopamine release
by these cells. In the era of fetal adrenal transplantations,
there have been unfortunate cases of uncontrollable
releases of dopamine, which caused severe incapacitating
dyskinesia. We are still seeking electronic devices that are
implantable with the cells titrating the amount of
dopamine released by the cells. In healthy brains, dopamine concentration in the
striatum is intricately monitored by medium spiny neurons in a special
compartment, known as striosome. These cells act as a sensor of dopamine, since
they are stimulated by dopamine released by nigrostriatal neurons, and in turn
send feedback inhibition to the latter. Dopamine itself needs changes in
concentration, depending upon the needs for the movements. By the same token,
continuous dopamine stimulation through Duodopa is not a perfect solution. I
would love to see scientists and people with PD interested in these projects, and
to discuss more about them at WPC 2019 in Kyoto.
Subscribe to the WPC Blog
Sponsor The 5th World Parkinson Congress!
As a subscriber to the WPC eNews, you already know
that the World Parkinson Congress is the only high
level scientific congress that brings the global
Parkinson community together under one roof to
learn together about the latest developments in the
field and to network with each other over four
powerful days. Why wait to sponsor the upcoming
WPC 2019? There are exciting exclusive sponsorship
items that will help showcase your support of the
community.
Download the full prospectus here.
Sponsor : Movement, Musicand Parkinson's
Sponsor : Book Nook & Meetand Greet Sessions
Live performances by members in
the community will showcase the
power and joy of movement and
music in impacting those living with
Parkinson's observe and participate
in some of the most uplifting and
exciting performances during the
week.
Learn more on page 26 of the
WPC Prospectus
The WPC Book Nook is a space in the heart
of the exhibition where delegates have a
chance to learn about, connect with, and be
inspired by authors and publications. This
space will be open during exhibit hall hours
and will have a daily meet and greet
sessions with some of the authors.
Learn more on page 18 of the WPC
Prospectus
ONLY 427 Days Until the 5th World Parkinson CongressWhether you are planning to attend the World Parkinson Congress by yourself or
with a close friend or family member, the thought of being in a convention
center with thousands of strangers can be intimidating. The congress may feel
like it’s a long way into the future, but now is the perfect time to start making
connections. With some preparation there will be plenty of friendly faces in the
crowd when you arrive in Kyoto. Here are some things you can do!
Volunteer at WPC2019
Become A WPCDelegate Leader
Share Your "See You InKyoto" Photo
Kyoto, Japan is one of
the most beautiful
cities in the world, so
we anticipate a large
number of delegates.
All volunteers will have
jobs for half days and
then be able to attend
sessions in their free
time. Registration to
WPC Delegate Leaders
work with the WPC to
build a group of people
interested in attending
the congress in a
certain region. This
way, each delegation
can work together to
plan, coordinate travel
and even fundraise.
If you are planning to join us
in 2019, send us a photo of
yourself holding a "See you in
Kyoto" sign! Send it here.
the WPC will be free for
the volunteers, but
other costs such as
hotel and travel will
need to be covered by
the individuals. If
you're interested in
volunteering, take our
short survey. Spots
will be limited.
Once registration
opens in September,
the Delegate Leader
will work with their
local group to
coordinate plans and
make sure people meet
important deadlines.
It's so much more fun
to travel together! To
learn more click
here!
Tamami Nose, (right) WPC 2019 Blogger
Partner
Philip Bungay, WPC 2019 Delegate
Leader
Abstract Highlight from WPC 2016Modern Treatment for Psychosis Today
by Stuart Isaacson, MD
Over the past several years there has been a shift in how we think about the
underlying cause of PDP. Rather than merely attributing PDP to a side effect of
medications used to treat PD, more recently it has become apparent that PDP is
really part of the underlying disease process of PD. Approximately 50 percent of
patients with PD will develop PDP during the decades-long course of their disease,
yet many caregivers and providers are surprised by the onset of psychotic
symptoms. These symptoms may initially be mild, but tend to gradually increase
in frequency and severity. Typical symptoms may include visual hallucinations (ie
seeing children, visitors at dinner), delusions (ie, spousal infidelity, stealing
money), and paranoia (ie, being watched). It can sometimes be difficult to get an
accurate history. Specific questioning about psychosis symptoms of
hallucinations, paranoia, and delusions is often needed to identify PDP. Often,
patients and caregivers will not associate pyschosis symptoms with PD. The
treatment of PDP is multifaceted. Reassurance is useful, and cognitive behavioral
therapy can help. Reducing potentially offending dopaminergic and anticholinergic
medications can lessen psychosis. An antipsychotic medication is sometimes
needed. Most currently available antipsychotics worsen the motor symptoms of
PD, as they block postsynaptic D2 dopamine receptors in the brain. The ultimate
goal would be to improve PDP without worsening motor symptoms. Only
clozapine (Clozaril), which requires weekly blood tests, and quetiapine
(Seroquel), which can cause sedation, will not worsen motor symptoms. With a
greater understanding of PDP as a common part of PD, and with the recognition
of the role of serotonin in PDP, new treatment options are being evaluated. One
new serotonin inverse agonist medication that has recently been approved by the
FDA for the treatment of PDP is pimavanserin (Nuplazid), which targets serotonin
5HT-2a receptors that play a key role in psychosis, without blocking dopamine. In
clinical studies, pimavanserin was found to improve PDP symptoms, with
demonstrated tolerability without worsening motor function. With its recent
approval, pimavanserin is a much awaited and needed novel treatment option for
patients with PDP.
Haiku Competition
In honor of the WPC going to Japan for the 5th World Parkinson Congress, we
invite members of the WPC community to write a Haiku poem to share during
Parkinson Awareness Month in April 2018. Our favorite poem will be printed in
the Final Program of the 5th World Parkinson Congress. Honorary Mentions will
be shared on the WPC 2019 website and all poems will be shared on WPC social
media pages.
Haiku is a unique form of poetry created in Japan during the Edo period (15th to
17th century) by Matsuo Basho. Later, during the late 1800s to early 1900s, it
became more widely known in its current format of 17 syllables, consisting of
three lines of verse arranged in a 5/7/5 syllabic pattern.
For example:
Summer rains come down (5 syllables)
Parkinson minds connecting (7 syllables)
Births friendships anew (5 syllables)
Send your poem(s) and your contact details to us via our online
submission link.
It was the work by James
Parkinson, in his most
famous piece, 'An Essay
on the Shaking Palsy'
written in
1817, which helped
establish Parkinson's as
an internationally
recognized medical
condition.
Together with the EPDA
and Parkinson's UK, we
are asking everyone to
use the hashtag
#uniteforparkinsons on
The 24th Annual
Parkinson's Unity Walk
will be on Saturday, April
28, 2018 (Rain or Shine)
Join us for a gentle 1.4
mile walk in Central Park
and be sure to visit the
WPC booth to share your
advice and inspiration
with the Parkinson's
community and enter our
raffle.
100% of donations to the
PUW go to Parkinson's
Parky The Raccoon is the
official WPC mascot.
Raccoons are creative and
resilient, just like people
with Parkinson's. One
hundred percent of proceeds
from the sale of Parky go to
April 11, which happens
to be James Parkinson's
birthday, to share their
stories and to raise global
awareness of the disease.
Learn More
research at five major
Parkinson's foundations.
We hope to see you
there!
Learn More
the WPC Travel Grants
Program.
Order Parky the Raccoon
Visit WhereIsParky.org
to see his adventures.
Meet the Newest WPC 2019 Delegate Leaders
Nasrin Esnaashari (California, USA)Nasrin is a Certified Nurse Practitioner at University ofSouthern California Keck School of Medicine,Department of Neurology. She is involved with clinicalevaluation, teaching, research protocols,multidisciplinary meetings and management ofpatients with deep brain stimulators (DBS) for morethan 20 years. Her research is focused on improvingthe quality of care for patients who've had DBS.
Isabell Senft-Daniel (Tennessee, USA) Isabell attended the World Parkinson Congress for thefirst time in 2016. She is active with the OregonPhysical Therapy Association and is the OregonDelegate for the American Physical TherapyAssociation.
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