“The MS Society helped me understand my disease and continues to help and support both me and my family,” says Jim, explaining why he supports the MS Society both as an active fundraiser and as a legacy donor.
Diagnosed with primary progressive multiple sclerosis in the fall of 2009, Jim needed to learn about multiple sclerosis and what his future held. His doctors directed him to the MS Society as a resource. This is where his ‘MS Library’ began. It started with general information about the disease that affects over 14,000 Albertans and continues to grow as he researches everything from new symptoms to drug therapies to the stories of other people like him that are also living with MS.
In 2010, the Butlin Family registered for the MS Walk in Edmonton to help raise funds for the MS Society. Being surrounded by people walking to find a cure was a proud moment. It was also an eye opener. “I just couldn’t believe how many people in our community are affected by MS,” says Diane, Jim’s wife. “I still can’t believe it.”
This experience spurred the Butlins to increase their fundraising efforts. “It’s a debilitating disease and when you’re going through it yourself and also witnessing what others have to go through, you can’t not support it,” says Jim.
Realizing the impact of their donations over the years, Jim and Diane were inspired to make a legacy gift to the MS Society. Jim says his decision to include the Society in his estate plans was made “because it’s giving back to an organization that has been good to me and so many others.”
“The MS Society’s ability to provide programs and to hopefully someday find a cure directly affects us, so of course we’re committed to helping them,” says Jim. “Leaving a gift to the MS Society in our will is a chance to give back in a big way to something that we’re passionate about; allowing us to support those on a similar journey long after we pass.”
Gwen McGregor was introduced to multiple sclerosis in the late 1950s when news came that a relative in his late thirties was diagnosed. As a young teen, it was the first time Gwen had heard of this illness, but she felt the impact MS had on her family as the stress and struggles of MS ended her relative’s marriage. Years later, Gwen continued to witness the influence of MS while working as a nurse at the Nanaimo Regional General Hospital. At the hospital, she met colleagues who underwent many exhausting diagnostic MS studies, and were eventually forced to go on early retirement.
When Brenda Jebsen, Director of Leadership Giving for the MS Society, made a personal visit, Gwen was able to put a face on MS and the Society. The visit raised Gwen’s awareness about the Society’s goal of finding a cure, and the importance of providing support to the people living with MS. “The MS Society is concerned with helping individuals maintain their self-respect and live life as normally as possible,” Gwen explaining why the Society is a worthy charity. “They tend to the ‘wholeness’ of the client.”
It was during Gwen’s process of retiring in 2002 when she named the MS Society as owner and beneficiary of her life insurance policy. She was able to support the Society’s cause through paying her annual insurance premiums and in return, she receives an immediate tax credit. “After seeing the bigger pictures of the MS Society and relating to the administration of the program, I now feel in a small way I am part of a larger team of people giving a helping hand to others at a time of need.”
Because of her experiences with MS and the people she met along the way, Gwen has become an essential part of the MS Society. By leaving her legacy, Gwen helps to support finding a cure for multiple sclerosis.
Sandy Aird had a young family and an exciting career at Deloitte & Touche LLP when he decided it was time to start giving back to his community. Choosing the MS Society of Canada to focus his efforts on was easy. Sandy’s mother was diagnosed with MS when he was in university, and Sandy witnessed first-hand the challenges that come with living with this disease.
For more than 35 years, Sandy has volunteered with the MS Society in various leadership positions. In the late 1980s, Sandy, as chair of the Society, and along with then-president Alistair M. Fraser, restored the MS Scientific Research Foundation to fund multi-million dollar studies into MS that they believed would one day change the face of this disease. Of the foresight for such a need, Sandy says with pride, “We were one of the innovators back at that time.” To-date, the Foundation has invested more than $100 million in groundbreaking Canadian MS research.
More recently, Sandy has been involved as national campaign chair of the endMS campaign, which has raised $50 million in support of MS researcher training and retention activities in Canada. He is both proud and excited by the significant progress made in MS research. “It’s no wonder that Canada is the leading country in the world as it relates to research into multiple sclerosis, funded in large part by the MS Society and its Foundation,” he says. “I think we are starting to see the benefits of that.”
His goal for the future? “To [help the MS Society] do everything it possibly can to bring an end to the disease.” That’s why, in addition to his volunteerism, Sandy has left a generous legacy gift to the MS Society in his will.
“I can’t take my money to the grave,” he says bluntly. “When I leave, I think I have a responsibility to give back. Whether it’s $50 from somebody and that’s what they can afford or whether it’s $50,000 from somebody else, we can each contribute to ending MS.”
Jake Doherty is proud to have served as the past chair of the MS Society’s Ontario Division. And although his one disappointment is “that we didn’t find a cure,” he hasn’t given up the search.
The diagnosis of Jake’s late wife Monique led him to help start an MS self-help group in Owen Sound during the 1980s. This involvement led him to join the Ontario Board in the early ‘90s. As chair of the board, he witnessed the growing number of people who needed assistance and through a commitment to collaboration, Jake positioned the Division to meet the growing requests for help.
But Jake’s contributions were not only of his time and talent – but also financial. Jake has been donating for over 30 years to help people with MS today and help researchers work to find a cure.
When Jake retired as a Southam Newspaper publisher, he no longer required all his life insurance – so he donated part of a policy to the MS Society.
“It was easy and I recommend this to anyone who has MS in their family or circle of friends. I just called both my insurance representative and the MS Society, filled out some paper work, and now I get a tax receipt every year.” In addition, Jake has the satisfaction of knowing that he will eventually give a gift larger than he could give today.
“Throughout my volunteering and donating, I have never seen MS as a hopeless cause. We engaged the struggle and we must continue until a cure is found. By donating a policy, I hope to someday make MS disappear.”
Cornelia Leisinger takes pride in an active lifestyle. She also, on a daily basis, lives with the symptoms and effects of multiple sclerosis. As a marketing executive and health care professional some days are a lot more difficult than others. And somehow, even though Cornelia sometimes works up to 15 hours per day, she also enjoys tennis and a fondness for automobiles.
Sixteen years ago, while living in her home country of Germany, Cornelia was diagnosed with MS. In fact, explains Cornelia, she was diagnosed using an MRI – technology that she understands was pioneered in Canada.
For many reasons, Cornelia decided to stay in Canada after living here for a few years. Through her work, Cornelia meets people who also live with MS and who benefit from the research and services of the MS Society. She greatly appreciates the leadership Canada brings to worldwide MS research funding and Canadian services for people living with MS.
For more than 15 years Cornelia has walked the MS Walk, raising over $1,000 each year. She loves the event and the prizes she wins (her favourite prize has been a polar fleece vest).
Cornelia decided to take the extra step of naming the MS Society of Canada in her will. “I enjoyed raising money for the MS Society for years and will continue to do it. But I also want to ensure that the fight goes on into the future. I have benefited from the work of the MS Society and a gift in my will is one way to give back.”
In 1982, just a year after she and Donovan were married, Cecile was diagnosed with progressive MS. At the time, the couple was living in Edmonton, Cecile working as an ER and intensive care unit nursing teacher and Donovan in HR for the Alberta government. Though they were from the same small town in Alberta, Cecile and Donovan met for the first time as adults on a ski trip to the US, Cecile charmed on the bus by Donovan’s laugh. Both apart and together, they had always been active, and shared in particular a passion for touring around the continent by motorcycle.
Six years after diagnosis, Cecile’s mobility had deteriorated to the point she was forced to stop teaching, and in 1990, they moved to Galiano Island, where the climate allowed for year-round motorcycle riding. In 1994, Cecile was confined to a wheelchair, and a new challenge presented itself: how to keep touring. The answer was a sidecar, and in the decade that followed, the couple rode across the continent twice, and made many more trips south, Donovan on his Harley, and Cecile riding by his side.
Today, Donovan and Cecile live on Vancouver Island. Donovan concedes that their touring days are near an end. Cecile is now limited to the use of her right arm, and with Donovan in his mid-70s, it’s getting more and more difficult to get Cecile in and out of the sidecar.
The MS Society in Victoria continues to provide the support and the physiotherapy Cecile needs, and they remain hopeful research will lead to a cure for progressive MS. To this end, Cecile and Donovan have decided to bequest a donation to the MS Society, and for that donation to be put towards the important work of finding a cure.
Thirty years ago Leigh-Ana McGinity’s mother was diagnosed with multiple sclerosis. The year was 1977 and although MS was a widely documented disease, diagnosis did not come easily. It took more than two years to confirm her MS diagnosis and the process was arduous and emotionally draining. At the time, there were also no treatments available to alleviate MS symptoms. Unfortunately, her disease worsened rapidly and in 1994 she passed away due to complications arising from the disease.
In 1984, at the age of 23, Leigh-Ana was working as a registered nurse when she began to experience MS symptoms. With her family history of MS, doctors diagnosed her more swiftly than the years of misdiagnosis her mother endured. There were still no MS treatments available.
Today, Leigh-Ana is amazed at how much research has progressed since her diagnosis. MRI technology helped her in 2001 to apply for long-term disability. Of great interest to her has been information on genetic susceptibility led by University of British Columbia researcher, Dr. A. Dessa Sadovnick. She has also seen five disease modifying therapies approved since her diagnosis, which have helped thousands of people living with MS, although she herself has not gone this route.
Leigh-Ana knows that finding a cure to end MS is just around the corner – and she has made a commitment to a future free from multiple sclerosis by leaving a bequest in her will.
“Just like the kids of today don’t know what a record is - I want the kids of tomorrow to not know what MS is. I hope that I might live to see the day when a cure to end MS is found. I am pleased to be able to do what I can by investing towards a future free of MS for the generations that follow me.”
In 1987, Denny was diagnosed with MS at the age of 53. He had been together with Margaret for 11 years, and receiving a diagnosis of MS was a terrible shock to them both. However, they both felt that it was very important to live in the present and “make memories for the future.” A diagnosis of MS brings many unknowns and both Margaret and Denny wanted to take advantage of his physical abilities prior to any possible changes. Of course, at that point, neither of them could really believe that his ability would deteriorate. Margaret says they had a “typical case of healthy denial.”
Their passion was travel. Margaret retired from her job and, together, they explored China, Australia, New Zealand and parts of Europe. In those early days of travelling, it was difficult to believe that MS would prevent Denny from continuing to enjoy his retirement.
Unfortunately, Denny’s MS worsened and he passed away in 2002. Margaret remembers those last days as a blur and cherishes the memories of their travels together.
In addition to creating many personal memories of their traveling days, Margaret and Denny had also decided to create a legacy for the future. They decided to create a bequest in their will to the MS Society of Canada and designate their gift to research.
Denny had a very generous spirit and a memory that Margaret always cherishes is his willingness to invite other single travelers to accompany them - at dinner or on a daily outing. He hated to think of people being alone. Denny’s generous spirit became part of his legacy. Both Margaret and Denny hope that someday their bequest will make a difference in the future lives of people who are on the MS journey.
“After 37 years of marriage, love is wonderful. Keep the fire alive and appreciate each other’s strengths and weaknesses.” Marion Vanderwood
Born in 1949, Martin and Marion Vanderwood share a deep love for each other that is reflected in their love for the water. It is a love which began when they swam together as high school sweethearts. From dinghies to cruising sailboats, to ocean racing to Hawaii, they spent weekends away from their respective accounting and insurance careers to explore the joys of sailing.
In 1984, they became charter captain and chef of the 60' sailing yacht, "Ocean Voyager," operating weekly sailing charters in the Caribbean. Twelve years later they joined "Shellette," a 55' sailing catamaran, and stayed with that vessel until 1998.
In February 1998, Marion was diagnosed with MS. “A blessing in many ways,” says Marion, as it made them give up the hectic though fulfilling charter work. They returned to Sooke, BC where they completed construction of their bed and breakfast, which they operated for the next 5 years.
Winters are now enjoyed on the beaches of Baja, Mexico in an RV, and summers are spent exploring Vancouver Island.
Marion battles her MS with a healthy diet, nerve retraining, and a very active lifestyle that includes yoga and bike riding. The Vanderwoods are determined to live in and enjoy the present knowing that they will have to continue adjusting to the MS.
The Vanderwoods have designated a gift to the MS Society in their will. Says Marion, “I’m getting benefit from research now, and maybe our estate can help people down the road. I know it may not be a direct effect, but it’s all interrelated.”
After working more than 25 years for a large Canadian company in various financial management positions, Paul Morimanno can the take time to enjoy life. Now retired, he divides his time between his Montreal residence and a country cottage. With the May 2006 elimination of the capital gains tax on donations of publicly listed securities to charities, Paul saw an opportunity to save on income tax while supporting a cause that was important to him. Paul, who had already supported the MS Society financially for several years through monthly giving, decided to go a step further and gift securities to the MS Society. He has chosen to support this cause because a member of his family has lived with MS for over 30 years. This person’s courage has always been a source of inspiration for him.
“Not many people know they can take advantage of these new tax provisions. It is important to tell people. It benefits the donors and even more the cause that is important to them. Life has been good to me and, in turn, I want to give back to the community. I hope that this gift will contribute to MS research and help find ways to prevent and cure this dreadful disease. I had planned to make a bequest to the Society, but the capital gains tax exemption convinced me to make this donation now. I encourage people who are in this situation to think about it; our charities need plenty of funding for research and their services.”
1995 was a difficult year for Élise Clément and one that she won’t soon forget. It was the year she was diagnosed with multiple sclerosis. People experience a diagnosis in different ways. For Élise, her new reality included the reactions she saw when talking about her diagnosis: “What a shock! It frightened me to see the concern in a co-worker’s eyes.”
“For me,” explains Élise, “it was a simple as this: Diagnosis: Multiple sclerosis; Treatment: None; Prognosis: Not good.”
Today Élise is more hopeful – in part due to her own actions and in part due to the work of the MS Society of Canada. “In Quebec, in 1995, there were no drugs available for people with MS. What did the future hold for me? I was really scared! In 1996, people demonstrated to the Quebec government to have the first interferon drug added to the list of drugs covered by the Quebec health insurance board. Happily, we succeeded.”
To continue her legacy of positive change, Élise has also named the MS Society of Canada in her will. Someday her gift will positively benefit people with MS just as she was able to help affect change in 1996: “I decided to turn my fear into an act of hope. I made a bequest to make an active contribution towards the future of people who have MS.”
For Dr. Edwin Pineau of O’Leary, PEI, creating a legacy gift is a tangible expression of his belief in the work of the MS Society of Canada.
Dr. Pineau, who first became involved with the Atlantic Division board of directors in the early ‘90s, decided to name the MS Society of Canada as the beneficiary of his life insurance policy – a gift that allows him to make a significant contribution while only paying a fraction of the ultimate value. “It’s really quite simple,” said Dr. Pineau, “I pay the premium, the MS Society gets the policy.”
A general practitioner, Dr. Pineau says it was his patients who initially encouraged him to get involved with the MS Society. Dr. Pineau became a valued member of the Atlantic board of directors and served as the chair of the division’s Client Services Committee. He has also been involved at the national board level, as well as with the PEI College of Physicians and Surgeons.
As he became more active within the organization and learned more about the MS Society’s Legacy Giving program, he spoke with his financial advisor about naming the MS Society as beneficiary of his insurance policy. “It is extremely useful from a tax perspective,” says Dr. Pineau, “and I certainly had no other charity in mind.”
“It is only through research that the cause and cure of this disabling disease will be found. However, for those individuals and their families who live with MS on a daily basis, it is important that they have their current needs addressed through programs and services offered by the MS Society of Canada,” says Dr. Pineau of his legacy gift in support of the MS Society.
Carol Fredrek and her daughter are a typical Calgary family. They are active and caring members of the community – making annual donations to the MS Society of Canada, Calgary Chapter and volunteering at chapter events. Recently, they made a family decision to put the MS Society in their will – an act that they made in order to help them realize the dream of a cure for MS.
As Carol explains: “I would like to see a cure some day. I didn’t think of our assets as worthwhile to donate to a charity, however, upon taking an inventory with our financial planner, we had more than we realized. The dollars are probably not as important as knowing that I am contributing to finding a cure and/or enhancing the quality of life for those who have MS today. This is what feels good.”
Carol knows what it is like to live with MS. In addition to being diagnosed in 1993, Carol also works at the MS Society of Canada, Calgary Chapter. She has seen first hand how donations are put to use to fund leading-edge research into MS and support people with MS and their families. Carol is dedicated to her work and the MS cause which helped in her decision-making. “Everyone has a connection to a cause that they want to support and MS is mine.”
The birth of her daughter was the motivation behind addressing the need for a will. “It has been a challenge to think about what will happen when I am deceased but having a child has made it essential.”
Imagine a future without MS. Jan Petrar knows one day this will be a reality, and she’s doing something about it in the here and now.
Jan recently made a commitment in her will to support the MS Society of Canada’s internationally respected research program. “Research gave me my life back. It also gave my daughter and son their mother back.” That’s why Jan is passionate about raising awareness of the MS Society’s work and finding a cure for multiple sclerosis.
She knows what it’s like to suffer through neurological pain, to deal with depression and fatigue. And she knows the impact this disease has on families and communities.
“When I was diagnosed with multiple sclerosis, there were very few treatment options available, and little hope. The development of disease modifying therapies ultimately changed the course of this disease for me, my family, and so many others.”
Originally from Regina, Jan moved to Kamloops, BC in 1990 to continue developing her thriving travel agency. As a business owner, she quickly learned the value of strong financial management and planning.
Today, Jan shares that knowledge and 25 years of business expertise as a senior administrator at Thompson Rivers University working in the international department. In the past, she also worked for the MS Society as a volunteer, dedicating countless hours to raising awareness of and funds for the fight against MS.
“It’s important that my children know the value of giving back, of making a difference in the community. For me, this has meant being involved as a board member with the MS Society of Canada, Kamloops Chapter and BC Division. But, I also wanted to create a legacy for future generations to show my kids there are many ways of contributing to something you believe in.”
As part of her 60th birthday celebration and a growing personal legacy, Mary Jane Ferguson made a stock donation to the MS Society of Canada, designated to research. She is keen to learn of the latest advances in MS research, and as a person with MS, she recognizes the hope that research offers.
“My financial advisor suggested I consider donating some stock to help offset personal taxes so I made my first stock gift to the MS Society designated to research. I believe it is through research that we will find a cure.”
One of eight children, Mary Jane grew up on a farm full of oak and maple trees. As a child, she recalls the maple syrup her father made. As an adult now living in a long-term care home, she surrounds herself with treasures that have meaning and value to her – paintings of the farm she grew up on, a silver-coated acorn as a pendant and an antique oak dresser.
Mary Jane has lived, studied and worked in communities across Ontario. She grew up in Cornwall, studied nursing sciences and medical records in Kingston, managed a team of 25 in the medical records department at the University Hospital in London and now she lives outside of Ottawa.
Mary Jane understands the value and excellence of the research we do across Canada. She is a true and loyal Ontarian and her legacy will continue to grow stronger just as the oak trees on her family farm.
When Heidi Charlton heard the news that she was diagnosed with MS, she was at first shocked. But she also took the news with a great deal of resolve. Immediately she wanted to be involved and do something with the MS Society of Canada. Eventually, this resolve led her to volunteer hundreds of hours of her time in fundraising, on the board of directors and, most recently, to name the MS Society of Canada in her will.
“Even though I have a lot more to do in life, I wanted to make this gift as part of a legacy that I’ve already started.”
She is determined to do everything she can to raise the profile of the MS Society and one of the things she is most recently excited about is the gift she has made in her will. “I wish I could win the lottery and give $1 million dollars to the MS Society. Until that happens, I can at least have the satisfaction that at some point in the future, the MS Society of Canada will benefit from a significant donation that I have made.”
Heidi also understands that this type of gift provides more than a financial benefit to the Society. It also provides Heidi with the satisfaction that she is creating a legacy that reflects her values and her vision for a future where no one has to face the news of MS that she had to face. “Research has provided breakthroughs in treatment and progress continues to be made in finding the cause and a cure for MS. I want to be part of a future where the breakthrough happens.”
Lou Maroun dreams of the day when a cure is found for MS. To make his dream come true, he is doing everything he can to raise awareness of the work of the MS Society of Canada – particularly in research where Canadians are world leaders. This includes his desire to help more and more Canadians understand the importance of making the Society part of their future plans.
Lou understands the needs of people affected by MS. As a director on the national board and a volunteer who started with the Atlantic Division Board before moving to Toronto, Lou has seen the affects of MS on families directly. He has also seen how the MS Society provides help and hope daily to thousands of Canadians from coast to coast.
This is why Lou has included the MS Society in his own future plans. And as an experience business executive, Lou also understands the value of careful planning, and providing a safety net for himself and his loved ones while creating his own legacy.
“I started by donating a life insurance policy to the MS Society. I’m fortunate enough to qualify for this type of gift as I know that many of our members are challenged to even qualify for life insurance. I’m also currently working on a bequest in my will. This is a great way to give because it is so universal – anyone at any income or ability level can do it.”
As part of his decision making process, Lou also considered how the MS Society raises funds for research and services. “Since almost all of the Society’s revenue is raised through donations – and very little from government – I know how important it is that individual donors continue to support the MS Society, today and tomorrow.”
Suzanne Deschamps was a busy 28 year-old when she first experienced symptoms of multiple sclerosis. Employed as a driver, and participating in physical activities like badminton, biking, boating, and golfing, she had no time to deal with the headaches.
Today Suzanne still lives with headaches, numbness in her legs and loss of balance. Despite her symptoms, Suzanne has not changed the way she lives her life nor the intensity with which she involves herself. What she has changed, however, is her choice of activities, pace and priorities. “In September 1992, I lost my eyesight (temporarily) and the use of my legs for a few weeks in September of 1995 – but you have to stay positive. I do a lot more volunteering and I got into golfing a lot more seriously. I can’t walk the golf course, but I have a golf cart.”
Despite the life altering changes Suzanne faced, she welcomed new opportunities and embraced these challenges with dynamism, humor and humility. She volunteered for the Cold Lake Chapter, first with the carnation campaign and eventually, as president. As president, she went beyond the call of duty to ensure that families affected by MS were served as best as possible. “I made the shopping centers change the location of their wheelchair parking stalls. They were much too far from the entrance door.”
Suzanne named the MS Society, along with her loved ones, as a beneficiary of her life insurance policy. Says Suzanne,
“I just purchased a new house and we had to go through my finances, my will and my life insurance plan. I thought ‘Bingo! Let’s do it now. I have my lawyer available so let’s get this settled.’ I had been thinking about it for a long time but it seemed that I never got around to doing it…in retrospect it only took a few minutes.”
Over the past decade, our researchers have made incredible progress in the MS field, but more needs to be done. By becoming an Evelyn Opal Society member, Suzanne knows her special gift will one day become everlasting – a cure for multiple sclerosis.
Melanie first began volunteering with the MS Society as a result of her relationship with a close friend whose father had MS. “I had known people with MS before, but this was my first ‘up close and personal’ experience with a family who dealt with the daily realities of the disease. I observed how the disease fundamentally altered the family relationships; almost exclusively for the better!”
As an estate planning lawyer with one of Toronto’s top firms, Melanie has contributed valuable expertise to the work of the MS Society. In addition to serving as a board member, Melanie has assisted as an advisor on legacy giving topics.
Melanie is quick to point out that she has received as much as she has given to the MS Society. “Almost immediately after I joined the board, I felt my legal skills were being put to good work. My involvement has become more personal over the years. I also now seek out every opportunity to involve my daughters in the MS Society’s fundraising events. I feel it helps to instill in them both an understanding of the disease and of the importance of giving back to one’s community.”
This is also why, in addition to giving of her time, Melanie has named the MS Society as the beneficiary of a life insurance policy. “I considered many options but ultimately decided to purchase some additional life insurance payable to the MS Society on my death (at a very modest cost, I might add). It was the kind of gift that allowed me to balance my desire to benefit the MS Society with my responsibilities to my girls. I’m fortunate enough to be in a position where this type of gift is possible for me.”