junior researchers are part of the future of Parkinson's ... · junior researchers are part of the future of Parkinson's and we applaud them for their commitment to understanding

Dear WPC friends,

I always love to think about our friends around the world on these hot, sticky days in New YorkCity and remember that half the world is entering winter and donning their coats and hats aswe in the north experience summer and long days. While we all experience the month of July,our experiences, like Parkinson's, vary greatly depending where we live and where we are inlife. Yet, our 'commonness' is still stronger than our differences and this is what I like to focuson in life.

David Leventhal recently wrote for the WPC Blog about his trip to China where he taughtDance for PD to trainers and people with PD. He was surprised that there were no coordinatedexercise classes for PwP since China is so known for tai chi and community exercise right in themiddle of the town parks. One dancer told him that his class "gave us a great senseof happiness and dignity." Teaching people with Parkinson's skills for self-care is valuablewherever one lives, and dance is part of self-care along with other kinds of exercise andwellness. I learned from Sara Riggare, our Advocates Committee Co-chair, that the averageperson with Parkinson's spends one hour with their doctor each year, but spends 8,765 hourson their own, taking care of themselves. This is the same globally and people with Parkinson'shave, for many years, figured out how to engage in 'self-care' when they aren't seeing theirdoctor. How do you engage in self-care? If you are a doctor or health professional, how do youtalk with your patients about self-care? We want to hear how you engage in self-care or howyou encourage your patients to engage in self-care. Email us your self-care regimen!

While PwP and families are focusing self care, researchers around the world are striving to findanswers and better treatments. It's such an exciting time for Parkinson's with researchers likeAndrew B. West, PhD at University of Alabama and Ignacio Mata at University of Washington.West just wrote on the WPC Blog about the excitement and challenges of LRRK2 and findingdisease modifying therapies for Parkinson's and Mata, whose piece is highlighted below, wroteabout the need for increasing diversity in genetics studies of Parkinson's with a focus on hiswork on the Latin American Research Consortium on the Genetics of PD (LARGE-PD). These

July 11, 2017

junior researchers are part of the future of Parkinson's and we applaud them for theircommitment to understanding Parkinson's and to helping us get closer to a cure.

For those of you in the heat of the summer, stay cool, and for our friends who are experiencingthe chill of winter, stay warm. Wherever you are on the planet, start thinking about how youcan be a part of the WPC 2019. Perhaps you can start by building a delegation from your townor country. Build a group of like minded people and start thinking about how to get thedelegation funded to attend the WPC 2019. It may be a delegation of three, but that'ssomething and we want to see the world represented in Kyoto, and that starts with YOU.

See you in Kyoto in June 2019!

Kind regards,

Eli

A Look Back at WPC 2016: Nutrition and PD

Heather Zwickey, PhD from the National College of Natural Medicine gave twopresentations on Nutrition. In her talks she outlined what types of food caninfluence specific symptoms. She explains that nutrition influences neuronalhealth, systemic inflammation, oxidative stress and blood health, which are allareas that are negatively impacted by Parkinson’s. When using nutrition to battleParkinson’s the strategy is to increase ‘brain food,’ decrease inflammation, anddecrease chemicals. In her slides, Dr. Zwickey recommends foods to eat forparticular symptoms.

Bradykinesia (slowness) can be lessened by eating foods with Anthocyanin.(Blueberries, cranberries, bilberries, raspberries, blackberries, black Currents,cherries, the peels of eggplants, black rice, concord grapes, muscadine grapes,red cabbage, and violet petals.) Anthrocyanins have been shown to reduceinflammation, oxidative stress, and protect nervous tissue in animal models.Foods containing selenium such as Brazil nuts, crab, poultry, and fish also reduceoxidative stress.

Gait: Dr. Zwickey referenced a study by Scheperjans in 2015 that reduced levelsof specific bacteria in the gut of people with PD is positively correlated with theseverity of gait instability. To protect these bacteria in the gut avoid probiotics andeat proteins. Proteins can be found in nuts, seeds, and vegetables as well asmeat.

Dementia, Cognitive Impairment, Depression, Anxiety, Pain and Fatiguecan all be caused or worsened by inflammation. Inflammatory foods includeanything with high fructose corn syrup, sugar, and trans-fat. Vitamins that combatinflammation include vitamin A, C, and D. The best foods to eat are nuts, berries,vegetables, and fish.

Overall, by choosing the right foods people with Parkinson’s can improve theirsymptoms. Nutrition should be an essential part of the care plan for people withParkinson’s.

VIEW THE SLIDES FROM HEATHER ZWICKEY'S PRESENTATION HERE

WPC Blog Highlight:

Bringing down the barriers: The

Latin American Research consortium

on the Genetics of Parkinson’s

Disease (LARGE-PD)

Derribando barreras: El Consorcio

Latinoamericano para la investigación

genética de la enfermedad de

Parkinson (LARGE-PD)

The following is an excerpt form Dr. Ignacio Mata's post for the WPC Blogwritten in English and Spanish.

  There is no question that since the humangenome was fully sequenced in 2003,genetic studies have allowed hugeadvances in the understanding of complexdiseases. These studies have identifiedmany genes that harbor both causal andrisk-modifying variants, which hasimproved our understanding of a widevariety of disorders. However, a majorshortcoming of this work is the limiteddiversity of the study populations. By2016 the overall proportion of non-European derived participants in largegenetic studies was only 19%, andrepresentation from some groups such asLatinos remained below 1%. This Euro-centric approach will without a doubtwiden disparities in research and health.

Unfortunately, these patterns also holdtrue for genetic studies of Parkinson’sdisease (PD) where inclusion of Latinoshas been and remains particularly low,despite the fact that the risk fordeveloping the disease has beensuggested to be elevated in Latinos livingin the US. To address this lack of diversityand understand the risk factors that maybe increasing the risk of PD in Latinos wehave, over the past decade, created theLatin American Research Consortium onthe Genetics of PD (LARGE-PD). LARGE-PD is a rapidly-expanding collaborationbetween our group in Seattle andinvestigators currently at nine institutionsin six countries across South America(Argentina, Brazil, Colombia, Ecuador,Peru and Uruguay). Each site usesuniform diagnostic criteria and collects astandardized set of clinical anddemographic variables. The initial goal ofthe project was to generate the first largePD case-control sample of Latinos. Thanksto funding from the Parkinson’s DiseaseFoundation to date we have enrollednearly 4,000 individuals. This cohortprovides a unique resource for geneticanalysis in previously understudiedpopulations.

We have started to study this cohort andwhat we have seen so far is that some ofthe most common PD-associated variantsdiscovered in populations of Europeanorigin occur at a substantially lowerfrequency in Latin America and there arenovel variants in those same genes that

No hay ninguna duda de que desde lasecuenciación del genoma humano en elaño 2003, la investigación genética hapermitido grandes avances en lacomprensión de los procesos asociados aenfermedades complejas. Estos estudioshan identificado genes en los cuales existentanto variantes causales como variantes quemodulan el riesgo a desarrollar ciertasenfermedades. Sin embargo, uno de losgrandes fallos de todo este trabajo ha sidola falta de diversidad en las poblaciones quese han estudiado. Hasta el año 2016, laproporción de participantes en estudiosgenéticos que no pertenecían a poblacionesEuropeas (o derivadas de Europeas) fuesolo del 19%, con algunos grupos como losLatinos representados por menos del 1% delos participantes. Esta estrategia Euro-céntrica tendrá sin ninguna duda grandesrepercusiones aumentando las disparidadestanto en investigación como en la saludentre las distintas poblaciones.

Por desgracia, este mismo patrón se repiteen los estudios genéticos en la enfermedadde Parkinson (EP), donde la inclusión deLatinos ha sido y sigue siendo muy baja, apesar de que el riesgo a desarrollar laenfermedad podría ser más elevado segúnestudios en Latinos que viven en EstadosUnidos. Para atajar este problema de faltade diversidad y para entender que factoresde riesgo podrían estar involucrados en elincremento del riesgo a EP en los Latinoshemos, durante la última década, creado elConsorcio Latinoamericano para lainvestigación genética de la enfermedad deParkinson (LARGE-PD). LARGE-PD es unacolaboración en rápido crecimiento entrenuestro grupo en Seattle e investigadoresactualmente en nueve instituciones en 6países a lo largo de América del Sur(Argentina, Brazil, Colombia, Ecuador, Perúy Uruguay). Cada institución utiliza criteriosde diagnóstico uniformes, así como recogevariables tanto clínicas como demográficasde forma estandarizada. El objetivo inicialdel proyecto fue la generación de la primeracohorte masiva de Latinos con EP ycontroles. Gracias a la financiación de laParkinson’s Disease Foundation en laactualidad hemos reclutado casi 4,000individuos. Esta cohorte provee un recursoúnico para realizar análisis genéticos enestas poblaciones tan poco representadas.

are common in patients from certainpopulations in these countries. Thus thegenetic architecture of PD might differbetween Latinos and other populationgroups.

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Share your "See You in Kyoto!" photo with us!   

From left to right: Chad Moir, president ofDopaFit; Saba Shahid, founder of The Art Cart;Lily and Brian Reedy, co-directors of the CarsonCity Parkinson's Support Group

Irene Wong-Yu, Canada; Margaret Mak, HongKong

Bruce Ballard, writer of the Parking Sunblog and Eli Pollard, WPC ExecutiveDirector

The5th World Parkinson Congress LocalOrganizing Committee members & friends!

Pamela Quinn, originator and teacher ofPD Movement Lab

Laura Andreoli, Sweden; Veronica Francardo,Sweden

Parky the Raccoon Turns Five Years Old!     

If you follow us on social media, you have seena lot of our favorite fuzzy friend. You may notrealize this, but our little raccoon makes a hugeimpact. One hundred percent of the profits fromthe sale of each Parky the Raccoon go to theWPC Travel Grant fund. Over the past two yearsParky has raised over $10,000 to help peoplewith Parkinson's, medical professionals from lowincome countries, and young clinicians andresearchers attend the WPC! Who knew that a

 It was at the 3rd World ParkinsonCongress in Montreal where Parky cameto life as the WPC mascot. Parky nowresides with humans all around theworld. See the map!

Why a Raccoon?

1. The distinctive mask, representsthe "Parkinson's mask."

raccoon could be so effective at bringing theParkinson's community together?

Parky the Raccoon was born in the summer of2012 when Bob Kuhn, ambassador for the 3rdWorld Parkinson Congress and person withParkinson's, decided to create a companion forhis around the world trip. Bob's 70 day trip wasdesigned to help him connect with peoplearound the world who lived with PD or cared forsomeone with PD. He created a cardboardcutout of Parky the Raccoon to sparkconversations. Everyone was curious about thisunique little animal, indigenous to NorthAmerica, but virtually unknown to the rest ofthe world.

2. Raccoons are inventive whenfaced with challenges. Excellentproblem solvers, with a high levelof curiosity, and the ability tosurvive in diverse environments,quite similar to people withParkinson's who creatively solvethe challenges of living with PD.

3. Parkinson's affects sleep andraccoons are often nocturnal, butnot exclusively so.

4. They can be mischievous. Afterall, Parkinson's is serious enoughin itself. It's good to have a littlefun.

SHARE YOUR PICTURE OF PARKY

    BRING HOME PARKY THE

RACCOON AND SUPPORT THEWPC TRAVEL GRANT FUND

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