Archive for the 'February 2012' Category

Message from the Editor

Welcome to the first edition of e-ParkinsonPost for 2012.

In this issue, the advocacy report introduces Joyce Barretto, the new Co-Chair of the National Advocacy Committee and offers a look at several briefs that have been presented recently to federal and provincial government policymakers.

We announce the progress of the Parkinson Research Alliance in developing Canada’s first set of guidelines for the diagnosis and treatment of Parkinson’s.

We provide links to web sites and blogs where people with Parkinson’s can share knowledge, information, ideas and experiences, as well as links to media stories on Parkinson’s research.

This issue also offers some dates to watch for – the deadline for nominations for Parkinson Society Canada’s National Volunteer Awards, a webinar on cognitive impairment in Parkinson’s coming in April, the 2012 Donald Calne Lecture and World Parkinson Congress 2013.

For the April Parkinson’s Awareness Month, watch for stories on the benefits of exercise in Parkinson’s and new physical activity guidelines for staying active.

We want to hear from you. Please leave a note in the Comments section to let us know what you think of the newsletter and articles. Your feedback will make this publication better. And if you really enjoy this publication, please pass along the link to someone you know so that they may enjoy it too.

Marjie Zacks
Editor

Advocacy Update

Yvon Trepanier

Yvon Trepanier

By Yvon Trepanier, Co-Chair, National Advocacy Committee

New Co-Chair

Joyce Barretto has been appointed by the board of directors to co-chair the National Advocacy Committee. Joyce is a strategic leader with over twenty-five years of success in the private, public and nonprofit sectors.

Joyce Barretto

Joyce Barretto

Her 13-year career in the Ontario Public Service included positions in the Ministry of Health and Long-Term Care, and as Assistant Deputy Minister in the former Ministry of Public Infrastructure & Renewal, overseeing four large provincial agencies. Joyce is past president of the Children’s Aid Society of Toronto and is currently a director on the board of Evergreen, an environmental non-profit agency. She has a Bachelor of Arts from the University of Western Ontario. With direct family experience of Parkinson’s, Joyce brings a deep commitment to the need to support caregivers and engage today’s youth.

On the move

We offer a hearty welcome to Vanessa Foran, Director of Policy Partnerships and Government Relations at Parkinson Society Canada / Neurological Health Charities Canada. Our best wishes to Shannon McDonald who has joined Rx&D as Vice-President, Public Affairs and Partnerships.

Keeping Parkinson’s issues front and centre

Parkinson’s Disease and Aging – A Case for Support

October 2011 – Parkinson Society Canada submitted a brief to the House of Commons Standing Committee on Health, as background information for its study on chronic diseases related to aging.

Neurological Health Charities Canada – Policy Briefing Note – November 2011

November 2011 – Neurological Health Charities Canada submitted a brief outlining the elements of a National Brain Strategy to the Senate Committee on Social Affairs, Science and Technology, which is responsible for making recommendations on Canada’s current Health Accord.

Parkinson’s Disease – An Ontario Perspective

December 2011 – Parkinson Societies in Ontario participated in a pre-budget consultation meeting with the Honourable Dwight Duncan, Minister of Finance for Ontario, in mid-December 20l1. A brief in support of this presentation was submitted in January 2012.

Principles to guide healthcare transformation in Canada

Parkinson Society Canada participated, along with several healthcare organizations, in a consultation meeting hosted by the Canadian Medical Association (CMA) and Canadian Nurses Association (CNA) to discuss a common set of principles developed by the CMA and CNA to guide healthcare transformation in Canada.

Nominate a volunteer for National Volunteer Awards by March 31, 2012

Each year, Parkinson Society Canada accepts nominations for three national awards to celebrate the dedication, leadership and generosity of extraordinary volunteers who share our vision of a better life with a brighter future for Canadians living with Parkinson’s disease. Nominations for the 2012 awards will be accepted until March 31, 2012. Read more >>

Setting standards for Parkinson’s diagnosis, treatment and care

Canada

The Parkinson Research Alliance, a consortium of neurologists, scientists and Parkinson Society Canada, is working to create the first Canadian Consensus Guidelines for the Diagnosis and Treatment of Parkinson’s disease, based on the best published evidence and expert consensus. The Guidelines have been submitted to the Canadian Journal of Neurological Sciences for publication in 2012.

Europe

The European Parkinson’s Disease Association has launched the European Parkinson’s Disease Standards of Care Consensus Statement, a set of plain language guidelines on optimal Parkinson’s disease management and care. The Consensus Statement, issued in November 2011, was developed, reviewed and endorsed by European Parkinson’s specialists, people with Parkinson’s, care partners and 45 national Parkinson’s organizations.

Webinar on cognitive impairment in Parkinson’s coming in April

Oury MonchiParkinson Society Canada is hosting a webinar on Cognitive Impairment in Parkinson’s disease, on Tuesday, April 17, 2012 at 1 p.m. EST. The presenter will be Dr. Oury Monchi of the Centre de recherche de l’Institut universitaire de gériatrie de Montréal (IUGM), at University of Montreal. Registration details will be posted on www.parkinson.ca.

Research – In the News

Scientists Identify Protein That Contributes to Symptoms of Parkinson’s Disease: http://www.sciencedaily.com/releases/2012/01/120125132603.htm

First Step In Strategy For Cell Replacement Therapy In Parkinson’s Disease: http://www.medicalnewstoday.com/releases/240726.php
Medical News Today

Inability To Express Emotion May Be An Early Symptom Of Parkinson’s Disease: http://www.medicalnewstoday.com/articles/240704.php
Medical News Today

How Alpha-Synuclein Interacts With Cell Membranes In Parkinson’s Disease: http://www.medicalnewstoday.com/releases/240541.php
Medical News Today

Biologists a Step Nearer to Solving the Parkinson’s Conundrum: http://www.sciencedaily.com/releases/2012/01/120116154324.htm

Causes of Parkinson’s disease: Literature Review: http://www.jprls.org/publications/December-2011/v1n1pp5-7.pdf

A comparative analysis of how Michael J. Fox and Muhammad Ali changed the world’s views on Parkinson’s disease: http://www.jprls.org/publications/December-2011/v1n1pp1-4.pdf

Temporal discrimination learning for treatment of gait dysfunction in Parkinson’s disease: a feasibility study using single subject design: http://www.jprls.org/publications/December-2011/v1n1pp8-11.pdf

Web resources created by people with Parkinson’s

World Parkinson Congress comes to Montreal on October 1 – 4, 2013

Parkinson Society Canada welcomes the world in 2013. The World Parkinson Congress (WPC) is the only global Parkinson’s conference that brings together the entire Parkinson’s community – people with Parkinson’s disease, those who care for them, medical and health professionals, and dedicated researchers working toward a cure and better treatments.

Meet the Canadian Ambassadors

Bob Kuhn

Bob Kuhn

Bob Kuhn – lawyer, writer, speaker, diagnosed with Parkinson’s at age 53, chair or director of numerous non-profit entities, creator of the Positively Parkinson’s blog (www.positivelyparkinsons.com). Bob loves to ride his motorcycle as long and as far as time permits. To date, he has biked over 50,000 km. Bob is determined, through writing, speaking and just living “out loud”, to encourage others with Parkinson’s.

Yvon Trepanier

Yvon Trepanier

Yvon Trepanier – retired schoolteacher specializing in languages (French, Spanish, Japanese), diagnosed with Parkinson’s at age 47, current board member and support group facilitator, Parkinson Society Southwestern Ontario. He is involved with advocacy initiatives both provincially and nationally, as co-chair of the Parkinson Society Canada national advocacy committee. Yvon and his partner own a hosta nursery, where they have registered and named a new hosta, Stolen Ability, as a fundraiser for Parkinson’s.

Ryan Tripp

Ryan Tripp

Ryan Tripp – a former physical education teacher and administrator for 23 years, diagnosed with Parkinson’s at 47, a strong, consistent fundraiser, active committee volunteer, enthusiastic advocate for Parkinson’s at federal and provincial government levels, founder of a support group in Muskoka, Ontario. Ryan’s personal code is to live with intention, walk to the edge, listen hard, practise wellness, play with abandon, laugh, choose with no regret, continue to learn, appreciate his friends, do what he loves and, live as if, this is all there is!

10 top reasons to attend the World Parkinson Congress

If you are a person with Parkinson’s…

  1. Be motivated by inspiring speakers.
  2. Connect with, be understood by, and learn from people living positively with Parkinson’s.
  3. Share in the encouragement of people from around the world who are touched by Parkinson’s.
  4. Gain helpful resources and tools, while making new contacts and developing enduring relationships to help others deal with the challenges.
  5. Learn the best strategies, and share your insights for coping effectively and positively.
  6. Experience the energy of passionate scientists, researchers and clinicians searching for a cure, exploring better treatment options and creating a brighter future for people with Parkinson’s.
  7. Interact directly with world-renowned presenters and panelists to get answers to your questions.
  8. Empower yourself. Empower others to make a difference in the lives of people with Parkinson’s.
  9. Gain new awareness about Parkinson’s from leading clinicians and researchers.
  10. Enjoy the excitement of Montréal, a world-class city where French meets English and the classic sophistication of Europe is reshaped by convivial Canadian character.

Visit www.worldpdcongress.org for more information.

Sign the Global Parkinson’s Pledge

In preparation for the next World Parkinson Congress (WPC) in 2013, we are seeking to collect as many signatures as possible for the Global Parkinson’s Pledge! As a WPC partner organization, and host of the next WPC, Parkinson Society Canada wants to help gather signatures for the pledge, in order to raise global awareness about Parkinson’s disease and to highlight the urgency of better care for people with Parkinson’s. We invite you to sign the Pledge now.

Hold the date

Dr. Matthew Farrer will present Parkinson Society Canada’s esteemed 2012 Donald Calne Lecture on Thursday, October, 18, 2012 at Terminal City, Vancouver, BC. The presentation will address how lab discoveries are translated into information that can help improve or prevent neurodegenerative diseases like Parkinson’s. Dr. Farrer is a Professor in the Department of Medical Genetics and Director of the Centre for Applied Neurogenetics in the Brain Research Centre at the University of British Columbia in Vancouver.

The Donald Calne Lectureship is a Canadian award, established in 2002, to honour Dr. Donald Calne for his outstanding service to the Parkinson’s community as Professor of Neuroscience, University of British Columbia and past chair and long-time member of the Scientific Advisory Board, Parkinson Society Canada. Each year, Parkinson Society Canada awards this lectureship to a distinguished neuroscientist of international reputation whose work is primarily in the area of Parkinson’s disease.


Charitable registration number 10809 1786 RR0001
All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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