A brighter future

Joyce Gordon, CEO, Parkinson Canada

When Parkinson’s disease comes into a person’s life and their home, it changes everything. We’ve been changing too. The recent union of six Parkinson’s organizations into one Parkinson Canada shows that we are taking the bold steps needed to grow our capacity to reach more people with Parkinson’s, effectively and efficiently. This is more important than ever given that the number of people with Parkinson’s is growing by more than 25 people each day.

It takes a community to live well with Parkinson’s, and you are an important part of the Parkinson’s extensive and global community. This past September marked  the fourth World Parkinson Congress in Portland, USA, where more than 4,400 researchers, clinicians, people with Parkinson’s and caregivers alike joined forces to share the latest information and advancements. We are inspired by the global Parkinson’s community. Parkinson Canada is more determined than ever to support you and all of our clients to tackle the challenges you face each day.

Parkinson Canada is the source of credible information for individuals living with Parkinson’s and their families. We are committed to expanding our offerings to you, using new technologies, as well as familiar vehicles, to share information that you and your loved ones can really use – accessible when, and how, you want it.  All of this is made possible through the ongoing generous support of valued donors.

In the coming year, the Canadian Guidelines on Parkinson’s disease will be updated to address gaps in care. More health care professionals – doctors, nurses, pharmacists and various therapists – will have access to these guidelines, and additional professional education, helping to ensure that you and your loved ones receive optimal care.

With continued donor support, we will plant more seeds for exploration and collaboration. The impact of the Parkinson Canada Research Program goes beyond an investment in discovery-stage research. Canadian scientists gain access to new funding from other sources, based on proven early results from their Parkinson Canada funded projects. This leads to new treatments, greater understanding and improved quality of life. Above all, we know that for you and others, a cure can’t wait.

We’ll talk with you and listen to you, and be your voice in the political arena, to make your life better. We continue to blaze the trail and join forces with others to increase our influence on policymakers and elected representatives. Parkinson Canada and our nationwide network of Ambassadors – people just like you from each province – will speak out for all Canadians living with Parkinson’s.

Connect with us on the telephone, in person out in the community and online. Simply put, we share a unity of purpose to expand our reach and increase our effectiveness in all that we do. That’s our commitment to you.

Understanding deep brain stimulation

Dr. Reina Isayama
Dr. Reina Isayama

Deep brain stimulation is a surgical intervention used to treat the tremors, rigidity, stiffness and slow movements that people with Parkinson’s disease experience. Although researchers know the technique works by changing abnormal electrical signals deep in the brain’s basal ganglia, they don’t understand the mechanisms involved.

Dr. Reina Isayama is exploring the basal ganglia’s relationship with the cerebral cortex, on the surface of the brain. She is trying to determine how the two areas of the brain interact and why deep brain stimulation (DBS) also affects the circuitry in that cerebral cortex, which, in people with Parkinson’s, has a particularly abnormal signalling pattern.

“We know that DBS works for Parkinson’s motor symptoms, but we still don’t know how it works,” says Isayama.

Isayama, a neurologist and Clinical Fellow at Toronto Western Hospital’s Movement Disorders Clinic, will use electroencephalograms (EEGs) to record the surface of the brain, where cells are activated and are communicating following DBS. She’ll study their relationship with the clinical benefits of DBS. Her two-year, $100,000 Clinical Research Fellowship is funded by the Parkinson Canada Research Program.

Isayama hopes by understanding how DBS works on the brain’s cortex, she will be able to suggest better adjustments to the technique, such as delivering the electrical stimulus to the brain at higher or lower frequencies, to shorten the time necessary to improve the symptoms. She may also identify areas on the surface of the brain that can be treated with other brain stimulation techniques in future.

“If we understand the influence of DBS to the cortex, we may be able to develop some less invasive techniques,” she says.

During her residency training in her native Japan, Isayama’s first research project involved Parkinson’s disease. She was struck by the “willingness and kindness” of the patients she worked with.

“I always hoped that I would be involved in research studies related to movement disorders and Parkinson’s disease,” she says.

Isayama believes it’s important to conduct research as well as to treat people with Parkinson’s in a clinical setting, so that she can apply her knowledge to make a difference in her patients’ lives.

“I’d like to be a person who can apply research results in a real clinical setting,” she says.

Watch our interview with Dr. Isayama and read about other researchers recently funded by the Parkinson Canada Research Program.

Congratulations to our young philanthropist

Jenna Sigurdson, left, with her parents Karren and Blair at Manitoba Philanthropy Awards luncheon.
Jenna Sigurdson, left, with her parents Karren and Blair at Manitoba Philanthropy Awards luncheon.

It was with great pride that Jenna Sigurdson’s parents, Karren and Blair, and her grandfather watched as she received the Outstanding Youth in Philanthropy Award, Under 15, during the 2016 Manitoba Philanthropy Awards luncheon in Winnipeg last month.

Red River Cooperative senior staff, her school principal and two representatives of Parkinson Canada’s Manitoba office were also in attendance to honour Jenna. She has raised more than $50,000 for Parkinson Canada and she has increased awareness of the disease, which affects more than 6,500 people in the province and more than 100,000 across the country.

Five years ago, at the age of 10, Jenna learned that her Dad had young-onset Parkinson’s disease. Jenna decided to fundraise for the cause, to help those living with the disease and to fund research into better treatments and an eventual cure.  She began by knocking on more than 2,000 doors in her community.

At age 11, Jenna combined her love of reading with the Parkinson’s cause and designed a signature bookmark and founded “Jenna’s Toonies for Tulips,” selling the bookmarks each year, through school campaigns and in partnership with local retailers. They are available for a minimum donation of $2 each.

Jenna also organizes a school assembly each April during Parkinson Awareness Month with a special speaker. Her various awareness and fundraising campaigns have brought Parkinson’s disease an enormous amount of media attention, increasing public awareness in the province.

“We are very grateful for all that Jenna has accomplished on behalf of people living with Parkinson’s in our community,” says Lorri Apps, Parkinson Canada’s Managing Director, Manitoba. “She is also an inspiration to others and an incredible example of the positive influence that young people can have on us all.”

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.”

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.)