Extraordinary volunteer earns Cash, Sweat & Tears Award after raising more than $700,000 for Parkinson’s disease research

Dave Newall, left, Peter Istvan, centre, and Phil Jones at the 2016 Pedaling for Parkinson’s event.
Dave Newall, left, Peter Istvan, centre, and Phil Jones at the 2016 Pedaling for Parkinson’s event.

Peter Istvan, co-founder and organizer of Pedaling for Parkinson’s – an annual bike ride that has raised more than $700,000 for Parkinson Canada – is the recipient of the 2016 Cash, Sweat & Tears Award. The award is granted by Peer-to-Peer Fundraising Canada to honour an extraordinary volunteer who has taken on physical challenges or overcome tremendous obstacles to raise money for charity.

Asked how he feels about receiving the award, Peter responded: “Someone had to stand up there and receive the award, but it’s really a recognition of the whole event and everyone involved, the riders obviously, but also the volunteers, the sponsors, the donors,  the researchers, and of course the great people at Parkinson Canada. They are all contributing.”

“We do a lot of little things, so everyone is engaged and they are the recipients of this recognition. It’s not me personally receiving the award, together we have created an authentic, grassroots experience that is helping people and families affected by Parkinson’s.”

Istvan and his friend David Newall started the ride in rural Parry Sound, Ontario, six years ago with a modest goal of using their love of cycling to raise money to fight Parkinson’s disease. During the first event, 18 riders came together and raised $18,000. In July 2016, 250 people took part in the three-day ride and raised more than $200,000.

“Peter’s commitment and vision are inspiring, and they demonstrate the amazing power that passionate people can use to help nonprofits raise money and achieve their missions,” said David Hessekiel, President of Peer-to-Peer Fundraising Canada. “He has helped create an event that brings together his small town each summer to make a difference, and, in doing so, he is helping to transform the lives of people with Parkinson’s disease.”

Pedaling for Parkinson’s is part of a growing trend in fundraising, where ‘do-it-yourself’ campaigns are organized by individuals, rather than by not-for-profit organizations. Parkinson Canada provides support for the event, and Istvan, a volunteer, does all of the heavy lifting, including managing logistics, recruiting riders and volunteers, soliciting sponsors and collecting donations.

“The whole team behind Pedaling for Parkinson’s is a joy to work with,” says Jon Collins, Associate Director of Events and Partnerships for Parkinson Canada. “With dauntless energy, strength of spirit and compassion, Peter Istvan has built a community around a once-a-year bike ride in Parry Sound.”

Pedaling for Parkinson’s has become a destination event for many avid cyclists in Ontario, largely because of its homespun feel. Istvan’s mother bakes cookies and gives hugs to weary riders. Riders receive handmade mugs from a local potter. A local butcher makes sausages for the post-ride barbecue.

“We’re not looking to become a humongous event,” Istvan says. “While we continue to grow, we want to remain as grassroots, family, and personable as we can.”

Istvan says he also wants to make sure the event always maintains its connection to the cause it supports. Two Parkinson’s researchers – Dr. Abid Oueslati and Dr. Joel Watts – each received a $90,000 Pedaling for Parkinson’s New Investigator Award for 2016-2018, through the Parkinson Canada Research Program.  Since 2011, seven Parkinson Canada Research Program awards have been supported by proceeds from the event.

“We work hard to connect the riders to the research and the research community to the riders,” he says. “That’s an important connection to us. We want to make it clear to the riders where the money is going and why what they are doing is important.”

Several Parkinson’s researchers have participated in the Parry Sound event over the years, as well as Parkinson Canada staff.  And each year, one of the Pedaling for Parkinson’s “named” researchers gives a presentation at a Parkinson’s education event in Parry Sound.

In addition to Pedaling for Parkinson’s, people with Parkinson’s benefit from the efforts of community-organized events held all year round and across the country. Events range from pot luck suppers to hockey tournaments and from summer pool parties to motorcycling tours and golf tournaments. If you have an idea for a community fundraising event in support of Parkinson Canada, check out our webpage or email connect@parkinson.ca.

If you do start up your own event to support people living with Parkinson’s, you may want to follow Istvan’s advice: “Keep the reason you are doing it in front of you, and thank every person who touches your event.”

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Making a gift of stocks or securities

A donation of publicly traded stocks, or securities, is a cost-effective way to transform a past investment into immediate and significant support for Parkinson Canada. If you own stocks or mutual funds that have grown in value, you are required to pay tax on 50 per cent of the capital gains. If you donate the securities to charity, you pay no capital gains tax. You will also receive a charitable tax receipt for the fair market value of the securities, and that entitles you to additional tax savings. This makes appreciated stock one of the most worthwhile ways to help people living with Parkinson’s disease.

You have the option of donating stock or securities now, or including this as part of your estate and Will planning.

The following chart highlights the benefits of donating a security to a charity instead of selling the security and then donating the proceeds.

Eliminate the Tax!
Sell Shares and Donate the Cash Donate Shares Directly
Market Value of Securities $10,000 $10,000
Adjusted Cost Base (securities original cost) $ 4,000 $ 4,000
Capital Gains ($10,000 – $4,000) $ 6,000 $ 6,000
Tax on Capital Gains @ 46% tax bracket -$1,380 paid out in taxes $  0
Donation tax credit* $4,600 $4,600
Net tax savings to donor (tax credit less tax due) $3,220 $4,600

* assumes gift made in Ontario at a marginal tax rate of 46%.

Overall, any type of donation made to a charity will fuel hope and make a tremendous difference. But, making a donation of securities or mutual funds will enable you to maximize your giving through increased tax savings and available tax credits.

Please Seek Expert Advice: If you are thinking about transferring assets that have appreciated in value, you should seek expert advice from a tax specialist, financial planner, or a lawyer.

For information on how to make a gift of securities or mutual funds to Parkinson Canada, please contact Sue Rosenblat (sue.rosenblat@parkinson.ca, 416-227-3386) or Steve Nash (steve.nash@parkinson.ca, 416-227-3378.)

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Nurse Kelly Williams fills a care gap with heart and expertise

Kelly Williams, right, works with patient Marilyn Nodolsky.
Kelly Williams, right, works with patient Marilyn Nodolsky.

After almost 15 years as a registered nurse, one couple stands out for Kelly Williams. She met them when she was working in a hospital early in her career. The husband was her patient and had Parkinson’s disease. “It was his wife’s determination as his health care advocate that really impressed me. She was very informed about her husband’s condition. And she was firm with the staff about the need to get him his medication on time and how his disease and its treatment should influence his care while in hospital. I really listened to her,” says Kelly.

That early experience continues to resonate with Kelly in her current position as the Clinical Resource Nurse at the Movement Disorder Clinic (MDC) at Deer Lodge in Winnipeg, Manitoba. Kelly graduated from the University of Manitoba, Faculty of Nursing in 2002 and then earned her Canadian Nursing Association – Certification in Gerontology in 2005. After working in a hospital for 10 years, she joined the team at the MDC in 2012.

For almost five years now, she has specialized in assisting people living with Parkinson’s disease, and thanks to the generosity of our donors, Parkinson Canada funds a portion of her salary. Kelly teaches her patients about the progression of the disease; helps them understand their medications; assists them with troubleshooting problems they may experience; and encourages them to live well with the disease.

With only one multi-disciplinary Movement Disorder Clinic in Manitoba (there is one other Movement Disorder Specialist at St. Boniface Hospital in Winnipeg) Kelly has the distinction of being the only Clinical Resource Nurse in a MDC in Manitoba. As a result, she sees and talks to patients from across the province, as well as people in Nunavut, western Ontario and eastern Saskatchewan. And the funding from Parkinson Canada supports the work she does with people living with Parkinson’s disease, who are not patients of the MDC.

“I fill a care gap for people with Parkinson’s. I want them to have their best life possible, to be able to advocate for themselves in medical situations and in the community, and to connect with others living with Parkinson’s by joining Parkinson Canada support groups and exercise groups.”

In addition to patients, Kelly educates health care professionals about the intricate balance between “on” and “off” times, the importance of getting medication on time and the other complexities of life with Parkinson’s disease.

At a recent presentation to physiotherapists and rehab assistants in a hospital, her information was a revelation for many in the audience. For instance, they now understand the importance of scheduling their sessions with people with Parkinson’s at the optimum “on” time.

With 25 Canadians diagnosed with Parkinson’s every day, and more health care professionals encountering new people with Parkinson’s, Kelly’s services are increasingly in demand. In 2014, she gave nine presentations to patient support groups and health care professionals, including staff in long-term care facilities. Last year, she gave 22 presentations and this year she will deliver 50.

The two-pronged approach of educating patients and health care professionals seems to be making a difference and changing attitudes, according to Kelly. “Not too long ago, conversations were only about medication. Now patients and their care partners are more likely to take control of their disease, be more positive and enjoy more autonomy. For instance, people are more aware of the importance of exercise to living well with Parkinson’s and they recognize they can do something to make themselves feel better.”

Kelly says she loves every part of her job. “I really feel like I’m making a difference in the lives of my patients; that my work is having an impact.”

Now and then she thinks back on the fellow with Parkinson’s, whom she nursed so long ago, and his “amazing” wife. She wonders what they would think of the work she does today. We think they’d say: “Well done, Kelly!”

Editor’s note: Kelly makes use of many Parkinson Canada resources to educate patients, care partners and health care professionals. People living with Parkinson’s and their families should visit www.parkinson.ca for information and resources. Health professionals can find resources and opportunities for continuing education at www.parkinsonclinicalguidelines.ca.

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Smoothing the course of Parkinson’s medication

Dr. Ariel Levy
Dr. Ariel Levy

People with Parkinson’s disease who have been taking the main drug treatment prescribed to relieve their symptoms often experience a roller coaster ride in terms of the way their body responds.

Levodopa-carbidopa, the medication used to relieve the tremors, shuffling and stiffness of Parkinson’s disease, compensates for drops in the amount of dopamine, a neurotransmitter or signaling chemical that occurs naturally in the brain. But when taken in conventional pill form, the drug can’t compensate, over time, for the continuing decrease in dopamine that occurs in the brain.

As a result, the amount of levodopa each pill releases generates a sharp spike in dopamine levels, eventually followed by another drop. This instability results in fluctuations in the symptoms of Parkinson’s that people experience.

“It’s very difficult,” says Ariel Levy, a clinical fellow at the Movement Disorders Clinic at Toronto Western Hospital. “You get the side effects of having too much medication and the side effects of too little medication.” Dr. Levy recently received the $50,000, one-year, Garden Centre Group Co-op Corp. Clinical Movement Disorders Fellowship from the Parkinson Canada Research Program.

Levy, a neurologist, is studying ways to alleviate this drug-fuelled roller coaster ride. His research is focused on a new pump that delivers levodopa-carbidopa in a gel form, directly into the intestinal tract. The pump ensures a continuous, stable dose of medicine that goes directly where the body will absorb it best.

This pump is an important innovation, Levy says, because the changes people experience at advanced stages of Parkinson’s have received comparatively little attention from researchers.

Levy hopes a stable dose of the medication will also alleviate some of the non-motor symptoms of Parkinson’s, such as sleep disturbances, memory problems, incontinence and digestive difficulties.

Levy’s work is part of a 26-week study on the performance of this intestinal gel and the design of the gel pump, which is comparatively large for patients to carry around and challenging for clinicians to program. His work will help the manufacturer of this technology refine the design. Levy also hopes to identify the type of person most likely to benefit from using the pump.

Although it remains important to diagnose Parkinson’s as early as possible so treatment has the best chance of slowing the disease, Levy underscores the need to establish effective strategies for dealing with later stages of Parkinson’s as well.

“We need to assess these changes as the disease proceeds so as to retain the best quality of life for these patients,” he says.

To read about other researchers being funded by the Parkinson Canada Research Program, visit our website.

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Making your wishes known can help others – November is “Make a Will” month

2011_11_14_03_making_your_wishes_known

Did you know that more than 50 per cent of Canadians do not have a Will? A carefully written Will ensures that your assets can be distributed according to your wishes, after your death. This document must be signed by you and witnessed. By taking the time now to consider your wishes and write them down, you provide such an important planning tool for the financial security of your loved ones. Financial advisors and estate lawyers recommend that everyone should have a Will. Age is not a factor. If you have assets, you should have a Will. Are you prepared? If not, there are experts who can help.

Through careful planning, you can enhance your financial benefits, while creating a legacy of hope for future generations. Bequests in your Will allow you to continue to support the causes that are important to you during your lifetime. Bequests often have the largest impact when you direct a portion, or percentage, of your estate to a cause, achieving tax savings for your estate.

Benefits to you by making a gift to charity in your Will

  • Convenient: It can be made regardless of your age and for any amount.
  • Cost-effective: Your present income will not decrease.
  • Simple: It is easy to arrange. Simply instruct your lawyer to include a gift to Parkinson Canada in your Will. It can be a specific amount, a percentage of your estate, or the residue of your estate (a gift after debts have been paid and other gifts have been distributed.)
  • Tax Relief: Your estate will receive a charitable tax receipt which can be used to reduce taxes on your final tax return and, in some cases, the previous year’s tax return.

Benefits to Parkinson Canada and the people you help

  • Helping people with Parkinson’s: Your gift will enable us to provide education and support services, and advocate on behalf of Canadians living with Parkinson’s.
  • Investing in a cure: Your gift will also provide funding for innovative research, expanding our  knowledge about early symptoms, diagnosis and treatments for Parkinson’s disease, and ultimately  bring us closer to a cure.

Register now for our Will planning webinar
On Wednesday November 23, 2016, you and your family are invited to join us for a free webinar on Will Planning and Power of Attorney. The webinar begins promptly at 1:30 pm (EST) and you will have the opportunity to ask questions during the 45-minute session. The webinar will be presented by Stephen Offenheim, B.A., L.L.B, Member of the Law Society of Upper Canada.  Register today. If you miss the live webinar, you can view it later online. Visit www.parkinson.ca.

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