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.

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Page 1: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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.

Page 2: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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

Page 3: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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.

 

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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.

 

Page 5: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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

 

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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)

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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

Page 8: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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.

Page 9: As we open the month of April, Parkinson's Awareness Month ... · As we open the month of April, Parkinson's Awareness Month, the World Parkinson Coalition team wants to give a shout

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