How to “Fundraise Your Way”

Rebecca Enns with her father Jim Peters and her sons Titus and Theo.
Rebecca Enns with her father Jim Peters and her sons Titus and Theo.

Six-year-old Theo Enns can’t wait to host his own “Little Chips for Parkinson’s” event when 12 of his young friends will fundraise and play a round of mini-golf at the Golf Dome in Winnipeg this September, in honour of his grandfathers  Jim Peters and Rudy Enns, who both live with Parkinson’s.

His mother Rebecca Enns came up with the idea, when Theo expressed an interest in the “Chipping In for Parkinson’s,” nine-hole, best ball golf tournament she and her father have hosted the last two years to raise funds and awareness of Parkinson’s disease.

Theo wanted to attend the evening event, but it extended well past his bedtime. When he asked his mother if he could have his own tournament, she came up with the “Little Chips” plan. Theo and his younger brother Titus will take part in and fundraise for the event, along with their young friends. “We hope all the children have a good time,” says Enns. “If it goes well, we may look to expand the event next year.”

“Chipping In for Parkinson’s” – the adult version – raised more than $12,000 last year and more than $20,000 this year. Despite dreary weather, more than 70 golfers came out to support Jim and the local Parkinson’s community. “Not a single person complained. They all just told me how thrilled they were to be there to support us,” says Enns.

“It’s so rewarding to see your friends and family, and even people you don‘t know, give you their support,” says Enns. The biggest reward, she says, would be a cure for Parkinson’s. Both her father and her father-in-law live with the disease. “In the meantime, we’re helping to provide more resources to those who are being diagnosed.”

Enns also credits Parkinson Canada staff in the Winnipeg and Toronto offices, with helping her to promote her event and advising her along the way.

Alexis Farrell serves the ball at Volley for Johnny.
Alexis Farrell serves the ball at “Volley for Johnny.”

Alexis Farrell of Barrie, Ontario, says her Parkinson Canada Community Development Coordinator Anne McNamara has been “amazing,” helping out with sponsors, registration and contacts for her “Volley for Johnny” beach volleyball event the past two years. “She even walked me through getting a city permit,” says Alexis. She connected with McNamara after contacting Parkinson Canada through its website.

Last month, 120 people participated in “Volley for Johnny,” raising about $6,300 and last year, they raised about $5,500. Teams of six to eight players, paid $200 per team to play in a well-organized beach volleyball tournament. Sponsors added to the total by supplying coffee and donuts (Tim Horton’s); gift cards for snacks and drinks (Metro Grocery) and pizzas for half price (PIE Wood Fired Pizza.) The local CTV station also covered the event on its news cast, providing more awareness of Parkinson’s.

“I was so surprised that everyone said yes to helping out. All I had to do was ask,” says Farrell, who is inspired by her father Johnny Farrell, who has lived with Parkinson’s for eight years.

“If you choose an activity you love, and you’re passionate about a cause; it makes all the hard work worth it,” says Nathaniel Bendahan, who started up “Playing for Parkinson’s,” a tennis tournament in Gohier Park in Saint Laurent, just outside Montreal.

Bendahan just launched his fifth, six-day tournament since 2012. This year the tournament runs from July 14 to 16 and July 21 to 23. He hopes his father Jacques, who was diagnosed with Parkinson’s  more than 20 years ago, at age 48, can make it to watch the finals.

“I was only two years old when my father was diagnosed, so I’ve seen how the disease has affected his life, as well as my mother and my sister and I,” says Bendahan, who is now studying neurology at Queen’s University.

My Dad was actually able to play in the tournament two years ago, he says. This year he hopes his father can watch the final match. The tournament has grown from 40 to 65 players, with each player paying a $20 registration fee.  And some people make additional donations. Each year, they’ve raised between $1,000 and $1,500.

Yanni Lambropoulos, Nathaniel’s main connection to the tennis community, has taken on a big part of organizing the event, including securing city permits and making calls. “We’ve had some nationally ranked players take part,” says Bendahan proudly.

This year, staff from the Parkinson Canada in Quebec office in Montreal attended the tournament opening and helped out by supplying pamphlets and lending support. “I’ve always looked to Parkinson Canada for assistance,” says Nathaniel,” and they always come through.”

If you’ve got an idea to “Fundraise your Way,” Parkinson Canada can help you make a difference in the lives of people living with Parkinson’s. We’ve developed an event program to support you in making your community event a great success.

Join Rebecca, Jim, Theo, Titus, Alexis, Nathaniel and Yanni and make your plans to Fundraise Your Way. Visit http://donate.parkinson.ca/yourway  for more details.

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Helping cells cope with stress

Jungwoo Yang
Jungwoo Yang

Proteins are essential to keeping our bodies’ billions of cells alive and healthy. In order for various proteins to go about their business, they must be folded into specific shapes to interact with other biochemical agents. When that folding fails to occur, or proteins fold themselves into the wrong shapes, trouble arises.

Jungwoo Yang studies that trouble, which may be among the most fundamental causes of Parkinson’s disease. Yang, a doctoral student at the University of Alberta, is examining a stress response that occurs in a part of the cell known as the endoplasmic reticulum, where tube-like structures deliver proteins to other parts of the cell. When too many of these proteins are unfolded or misfolded, the resulting stress activates an unfolded protein response (UPR) that can damage cells. This response includes a process called phosphorylation of PERK, the addition of phosphates that can eventually poison a cell and kill it.

“I already knew that this process was happening of higher phosphorylated PERK in people with Parkinson’s disease,” says Yang.

PERK is the enzyme at the heart of this fatal cascade. Yang began his research by studying how the genetic activation of PERK decides the fate of cells during the stress response within the endoplasmic reticulum. The process resembles the way in which prions cause misfolding of proteins within brain cells, creating the condition known as mad cow disease. Yang suspects a similar culprit might be at work in causing changes within PERK.

Now, thanks to a two-year, $100,000 Basic Research Fellowship from the Parkinson Canada Research Program, Yang is exploring the possibility that inhibiting PERK’s activity could prevent it from starting the chain of events that kills cells, which in turn could prevent the neurodegeneration seen in Parkinson’s, Alzheimer’s disease or amyotrophic lateral sclerosis (ALS). Yang will test this hypothesis by confirming the mechanism in mice.

“We’re going to inject them with endoplasmic reticulum stress inducers and observe the effects of P-PERK inhibitor,” says Yang. “If we see something that looks like Parkinson’s and inhibits or delays Parkinson’s by using P-PERK inhibitor; that will confirm our model.”

Eventually, Yang hopes his research will open the way to a drug or gene therapy that could treat or prevent Parkinson‘s disease by preventing the stress response that damages or kills brain cells.

“If we can inhibit the activity of PERK, it will make a crucial contribution to protecting patients from neurodegeneration. Our study will validate a target mechanism for doing just that as we develop future treatment strategies.”

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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Share your creativity through Parkinson Canada

The Hope on Display Calendar is a wonderful opportunity to showcase your creativity through artistic expression. Parkinson Canada invites individuals living with Parkinson’s to submit their artwork for consideration for our Hope on Display Calendar, inspiring hope for others.

If you are a visual artist of any kind (painter, photographer, jewelry maker, quilter, woodworker, sculptor, etc.), and you would like to be considered for the 2018 calendar, please send an email to Diane at diane.newmanreed@parkinson.ca before August 8, 2017. Tell us about yourself and include a high-resolution image of your creation.

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Education Update: New book available and thanks for your input

New book available

Parkinson Canada is very pleased to be able to offer you Parkinson’s Disease: An Introductory Guide, a new book developed by Dr. Ron Postuma and Dr. Julius Anang in collaboration with McGill University Health Centre. You can read and download the PDF of the book here.

Joyce Gordon, Dr. Ron Postuma, Julie Wysocki

This guide will help you better understand Parkinson’s disease. It describes the illness, changes in your body over time, treatment and care options, and possible health problems. There are also quick tips, including information about when and where you can find more help.

As a practical introduction to Parkinson’s disease, it is meant to help you learn about:

  • Symptoms of Parkinson’s and how you can spot them
  • Treatment and care options
  • Tips and strategies for you to take charge of your health
  • Possible problems to watch out for
  • When and where you can find more help.

It’s an excellent resource to review with your family and to bring to appointments with your health care team. You can also obtain a print copy of this comprehensive book by contacting Parkinson Canada at 1(800) 565-3000 or by email at education@parkinson.ca. (Quantities are limited.)

Educate PD project survey summary

Our sincere thanks go out to the 881 individuals who completed a recent survey for the Educate PD project, supported by Parkinson Canada. Respondents shared their thoughts on the sorts of issues relating to Parkinson’s disease that they need help understanding and explaining. Valuable insight from 450 people living with Parkinson’s, 335 caregivers and 96 health care professionals were compiled and analyzed.

Educate PD project investigators Dr. Sean Udow and Dr. Connie Marras find that: “In our clinical experience, people living with Parkinson’s and their care partners often have trouble understanding various aspects of PD. This understanding may be restricted by the complexities of PD itself and the ability of a health care professional to explain the complexities.”

Educate PD is a project aimed at designing a visual educational tool to help explain and understand Parkinson’s disease. This survey was a critical step in determining what issues the visual aid should address.

The Educate PD questionnaire was designed through a collaborative process between seven clinicians from four Canadian institutions, each with expertise in PD. The investigators categorized PD issues into seven main areas: basic science, diagnosis, motor symptoms, non-motor symptoms, cognitive symptoms, treatment and prognosis. The survey asked people living with Parkinson’s and caregivers to rate how well they understand and how satisfied they were with explanations of each of these areas. The survey asked health care professionals to report how often they encounter patients who have trouble understanding these areas, and how likely they are to use a visual aid to explain these issues.

Results of the survey indicate that the majority of people with Parkinson’s and their care partners do not think they fully understand most issues in PD and are not very satisfied with how their health care providers explain these issues. Similarly, the majority of health care professionals think it’s important for patients to understand PD and the majority would use a visual tool to discuss PD if one was made available.

The main areas of PD identified as poorly understood and poorly explained by all groups included cognitive issues and non-motor symptoms. Treatment, prognosis and basic science were also identified as important, though not as strongly. This study therefore recommends a heavier focus on these areas when designing a visual tool to help discuss Parkinson’s disease.

There was a general lack of understanding and low satisfaction in the explanation of all areas of PD. Overall, the results of this survey support the need to develop a visual tool to help discuss PD. Drs. Udow and Marras plan to use the results of this survey to focus on the content areas identified as the most important to understand and currently the least satisfactorily explained. Since there was a general lack of understanding and low satisfaction in all areas, the investigators will also try to be comprehensive in the creation of this educational tool.

Drs. Udow and Marras expressed their appreciation to all those who responded to the survey.  Parkinson Canada will keep you informed about the development of the Educate PD tool for health care professionals to use with people living with Parkinson’s and their caregivers.

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Chasing the culprit in Parkinson’s disease

Joel Watts
Joel Watts

When Joel Watts was 10 years old, his father died of Creutzfeldt-Jakob Disease (CJD), a rare brain disorder caused by the strange behaviour of a class of proteins called prions. These agents later became notorious as the cause of the now infamous brain-wasting condition dubbed “mad cow disease.”

But Watts, whose father died in the early 1990s, did not connect his father’s loss to any specific neurodegenerative disorder until much later, when he was studying at university. Today, the biochemistry professor at the University of Toronto is on the cutting edge of investigating the similarities between prions and the way other proteins spread through the brain and compromise its functions.

“What I’m trying to do is take something that is known about prion disease and apply it to Parkinson’s research,” Watts says. This research is being funded by a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award from the Parkinson Canada Research Program.

Instead of prions, he studies a protein called α-synuclein, which is directly involved in the development of Parkinson’s. The comparison with prions lies in the way accumulations or clumps of α-synuclein spread throughout the brain.

“This aggregate might start in one cell and then somehow get out of that cell and make its way into a neighbouring cell,” says Watts. “These little pieces of aggregated protein can then start the process in the next cell.”

Just as the mis-folded arrangement of prions damages brain cells, so too does the shape of α-synuclein affect brain cells and contribute to Parkinson’s disease. Watts is categorizing these various shapes and their role in the development of this disorder. His ultimate goal is to shed light on mechanisms that a new therapy could target.

Watts emphasizes that the infectious diseases prions cause, such as CJD, are entirely distinct from brain disorders like Alzheimer’s or Parkinson’s, which have never been identified as contagious or communicable. Nevertheless, Watts remains eager to build on the body of knowledge that surrounds prions, which he believes will lead to fresh insights about Parkinson’s.

“With prions, the protein exists on the outside of the cell so it’s very easy for it to touch another cell,” he says. “Whereas α-synuclein is inside the cell, so how does it get out of one cell and get into another cell? That’s one of the hottest areas of research right now.”

This spring, Watts presented an update on his research to the Parkinson community in Parry Sound, Ontario, where the Pedaling for Parkinson’s event is held each summer. Previous Parkinson Canada funded researchers will ride alongside other riders on July 14 to 16, as part of the seventh annual Pedaling for Parkinson’s event. Join them at pedalingforparkinsons.ca.

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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