Kidney Living Winter 2014

Living

KIDNEY Winter 2014 Volume 7 • Number 1

www.kidney.ca/ontario

A PUBLICATION OF THE ONTARIO BRANCH

Passion • People • Progress

contents WINTER 2014

LIFESTYLE 4 Active Living and CKD 4 Karen Nicole Smith 5 Setting Goals* 6 The Next Step* 7 Fernande Caron-Dery 9 Linni Xu 11 Body and Soul 16 From Moose Factory to Camp Dorset 19 Celebrating Milestones

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FOOD AND NUTRITION 18 Food You Can Bank On THE FOUNDATION OF KIDNEY CARE 3 Five Decades of Commitment 10 Planned Giving 12 50-year Timeline 14 The Power of Volunteers 21 Community Highlights 23 Mark This Date

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*In an effort to optimize our space in these pages and still bring you good, quality information that you can use, these articles are part of longer articles. Read the full story at www.kidney.ca/kidneyliving.

Cover photo: (background)GraphicStock.com; Images in 50 graphic are from KFOC archives.

Canadian Publications Mail Agreement #40011479 Return Undeliverable Canadian Addresses t o Tr i s h R e y n o l d s , C o m m u n i c a t i o n s Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney.on.ca.

Phone:1-800-387-4474.

Š2014. Kidney Living, the contents of which is subject to copyright, is published twice a year.

Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981.

The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, nor guarantee the quality, effectiveness of any products or services.

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

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19 www.kidney.ca/ontario

Quot es, Not es Anecdot es

Photo credit: BigStockPhoto.com/52222105

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Five Decades of Commitment e are here today as a 50-year-young organization because our forefathers were resolute in working together to establish a strong voice for kidney patients in Canada.

“We are confident that this Foundation will go forward, and are determined to do what we can to ensure its success.”

H.E. Ashenmil L.Y. Fortier Provincial Co-Chairmen (April 1, 1963, in correspondence to 20 physicians working in the area of nephrology or urology)

As our journey continues five decades later, we continue to adapt to those challenges and opportunities which permit us to strengthen our voice in pursuit of our mission.

We are confident that this same commitment and persistence which helped to create The Kidney Disease Foundation of Canada, as we were called in 1964, is very much alive within our Branch today. Your commitment will prevail in helping us be a stronger organization in our resolve to reduce and eliminate the personal burden of kidney disease.

Throughout the year, we will pay tribute to the many volunteers, donors, renal professionals and community partners who helped to build the Foundation yesterday, who continue to support the Foundation today, and who will help us create a better tomorrow for kidney patients and those at risk.

Thank you for joining us in this important journey to celebrate, to redefine, and to dream about what the next 50 years will hold for The Kidney Foundation of Canada.

Terry Young, President Jim O’Brien, Executive Director Ontario Branch, The Kidney Foundation of Canada  www.kidney.ca/ontario

The original Kidney Foundation logo consisted of two kidneys facing each other.

When printed in colour, the logo was magenta (burgundy colour).

In the mid 1970s the decision was made to update the logo. The new logo featured the hands with a flower, which is still a part of our logo today. Two hands clasped symbolizing cooperation, collaboration and support, and a flower symbolizing life, growth, hope.

Over the years, it has been tweaked and updated first to a circle and then in 2006, after The Foundation revised its vision and mission it was refreshed with a new square treatment and tagline – The foundation of kidney care.

Winter 2014 / Kidney Living /

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LIFESTYLE

Active Living and CKD

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ctive living means being physically engaged in day-to-day life and is important to everyone, especially those living with a chronic condition such as kidney disease. Whether you are walking to the store to get a carton of milk or taking the stairs instead of the elevator, you are increasing your level of physical activity and improving your quality of life. By focusing on moving your body, you can have an impact on your circulation and blood pressure, the amount and quality of your sleep, your mood and self-confidence as well as managing your overall symptoms. There is no magic pill that can do all this. The trick is to make a commitment to yourself. Start making small changes and get active! 

Karen Nicole Smith A Dialysis Patient’s Sick-to-Fit Journey

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n an average week I do five to eight classes at the gym. I also use free weights, do core work and flexibility training. What makes my situation unique? I am living with stage five kidney disease. I am very physically fit but I am also a dialysis patient.

My story, which I’ve coined, my “Sick-to-Fit journey,” began in 2011. I was a very weak and frail person when I had a near-fatal cardiac arrest. I was forced to transition from peritoneal dialysis to hemodialysis. I was depressed. At my lowest point, I discussed palliative care.

Somehow though, despite the darkness, I had a feeling there was still hope for me.

My inkling was correct and hope was delivered by my nephrologist and a renal nurse.

My nephrologist created a medical plan for my life—including an aggressive home hemodialysis schedule (20 hours a week). The nurse suggested I try the Cardiac Rehabilitation Clinic. In desperation (but with hope) I put all suggestions into action. I began training for home hemo and within weeks I began Cardiac Rehab too.

My life changed.

Aggressive dialysis made me feel better than I had in years. Home hemo gave me my independence back. Cardiac Rehab gave me the tools and the support to be fit and active

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LIFESTYLE

again. With the support of the team at Cardiac Rehab—the cardiologist, the physiotherapists, the nurses, the dietitian, the social worker and my fellow “rehabbers,” I flourished. I have never looked back.

Nearly two years later I am still sticking to the schedules—both dialysis and gym. I cannot refute the benefits of either. I was able to build a fit, muscular body. I was able to reverse heart damage. I am active and full of energy. I credit this plan with giving me my life back.

I can remember the reasons why I didn’t exercise once I entered end-stage kidney disease. Some were physical but the worst were the psychological reasons. I now understand that having a chronic illness (at any stage) is

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not a reason to be inactive. At any stage there is something I can be doing to keep active.

I needed a plan to change my life but I believe that if we reach out for guidance and support we can all have our individual plans to healthy living.

Seek help to create your “Sick-to-Fit” plan.

Stick to the plan until you find what works best for you. Imagine the benefits to being as fit and healthy as possible (for you). Work your plan and never look back.

My “Sick-to-Fit” transition hasn’t been easy.

I’ve faced challenges at every turn, but the benefits that I’ve gained since adding fitness to my life has made it worth all the effort. 

Setting Goals

Photo credit: GraphicStock.com

Not just a New Year’s thing

Bonus content on setting SMART Goals at www. kidney.ca/kidneyliving. www.kidney.ca/ontario

nfortunately, for most of us, by the time the end of January comes around, we’ve long forgotten our New Year’s resolutions and given up for another year. Too often we sabotage our efforts and set ourselves up for early failure by making resolutions that may be difficult to achieve.

When is the last time you heard someone say, “I want to walk 10 minutes more each day.” Ten minutes of walking each day could be a perfectly attainable goal. The dialogue you’re more likely to hear is, “I’m going to join the gym to exercise five days a week.” If you’ve never graced the door of the gym before, this might seem a bit overwhelming and it likely won’t be long before this resolution or goal is a distant memory.

Setting goals or making plans to create new habits isn’t limited to New Year’s; in fact, you can set a goal and work towards that goal at any time. Small changes can lead to bigger changes and new habits can be borne.

Consider the SMART approach to setting your goals in 2014. SMART goals are: Specific, Measurable, Attainable, Realistic and Trackable.

Specific: State what you want to do exactly, keeping in mind the four w’s - who, what, where and when.

Measureable: Make sure your goal can be measured. This is important so that you know whether or not you’ve actually achieved it.

Attainable: Your goal should be something that you really can achieve. It doesn’t make sense to set a goal to join the gym if you don’t have the finances to pay for a membership. In the same way, you need to ensure that you have resources to complete the goal (time, equipment, finances).

Realistic: A goal should always be something that is reasonable for you to attain. If your overall goal is to add more activity to your weekly schedule, consider adding it in weekly increments to ensure that you can realistically commit to the plan.

Trackable: Experts suggest that tracking your results is a key motivator. Did you or did you not do it? Being able to track your actions can help to keep you motivated if you are doing a good job and can help to motivate you if you have fallen off track. Consider tracking your results in a journal.  Winter 2014 / Kidney Living /

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The Next Step We posed some questions about active living to Dr. Trisha L. Parsons, PhD, Assistant Professor School of Rehabilitation Therapy, Queen’s University

I want to add activity to my life, but where do I start?

Photo credit: Photos.com

A good first step is to take stock of what activity you are currently doing. There are a few ways you could approach this. One of the easiest is to use a step-counter (pedometer)—a small, often inexpensive device that you wear. A number of communities have library lending programs for pedometers so that you can try one out. It will keep track of all the steps that you take in a day. Research suggests that the average Canadian should be taking at least 10,000 steps/day in order to maintain their health; for people living with a chronic health condition this number is lower; around 4,000 – 7,000 steps. You can use this information to determine where your activity level sits against this standard. If your step count is low; you may not be getting enough physical activity in your day to maintain your health. This is great information to bring to your nephrology team.

There is no cardiac program in my community. Are there other programs that I should look for?

Each region has different programs and finding what is available is challenging.

If you have a physiotherapist or occupational therapist available to your nephrology team, asking their advice would be an excellent place to start. Alternatively, your renal nurse or social worker may be able to offer you some suggestions about programs in your area. Your family doctor might also have a better sense of available community resources. Your local hospital might

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offer programing. Your local public health unit will likely have a list of community physical activity resources and/or programs available.

This is often a great place to look up resources for walking programs, including indoor and outdoor walking clubs. In the province of Ontario, the Ministry of Health has funded services for Chronic Disease Management. As a result, within your own health region, you very well may have access to a chronic disease self-management program (for example: http://www. livingwellseontario.ca/). These programs take the perspective that regardless of the health condition you are living with; there are often common issues and barriers that people face with respect to maintaining a healthy lifestyle.

Through these programs, participants learn about a number of topics, including how to incorporate exercise and activity into your life.

Regardless of the program you choose, you should ask if the people delivering it know about chronic kidney disease and about how your diagnosis and treatment impacts your personal activity prescription. The truth is, there are often many options; and navigating these can feel overwhelming. You may need to knock on a few doors to find the support that is right for you and ask your health care team for help. 

Go to www.kidney.ca/kidneyliving for the complete Q&A interview, including answers to such questions as “Should I speak to my nephrologist or family physician before adding exercise to my routine?” and “I can’t afford to exercise at a gym. What other ways can I add activity to my routine?” www.kidney.ca/ontario

LIFESTYLE

Fernande Caron-Dery

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Living in the present moment

by Trish Reynolds, with interview notes from Suzanne Laniel

ernande Caron-Dery has a contagious, sunny disposition. She brings happiness to those around her simply with her smile. It’s hard to believe that this 86-year-old is more active than some folks half her age. With optimism and hope, she has dealt with some incredible challenges in the last four years.

Just one short year ago, Fernande participated in her first Kidney Walk. She completed the 5km route with the help of her family and the momentum of her wheel chair. Then she set a goal to not only participate in the 2013 event but to physically walk the Kidney Walk in 2013.

In January 2010, Fernande became unchar-

www.kidney.ca/ontario

acteristically ill. She was sick for days, losing 22lbs. in a matter of a few weeks. In fact, she was so weak; she didn’t realize she wasn’t urinating. With no sign of her health improving, her daughter took her to the Cornwall Hospital.

From there she was transferred to the Ottawa Hospital where she learned that her kidneys had failed.

Fernande and her family quickly learned all they needed to about living with kidney disease. A month later she was transferred to her local renal unit in Hawkesbury, and quickly became the life of the party. “When I first arrived at the dialysis unit, it was so quiet and serious—I made it my mission to change the atmosphere and help people laugh,” said Fernande. “Dialysis is just a part of my life; it keeps me alive, so I better enjoy it,” she added.

In 2011, Fernande’s health continued to deteriorate. As a result of ACV Thrombosis, she became paralyzed on her left side; she couldn’t speak or write, she had to re-learn even the simplest tasks.

With perseverance Fernande learned to write and speak again. Day by day, step by step, with fierce determination, Fernande began adding activity into her daily schedule. When not at dialysis, she began the difficult task of walking. Now almost two years later, walking is the most important part of her day.

“Even on days [when] I don’t feel well, I make myself get up and move,” said Fernande. “The result is that I always feel better than I did when I started.”

At her retirement community, she has access to a room for exercising. When the weather is too blustery outside, she jumps on the treadmill or the elliptical machine. She does yoga and tai chi and has even been known to do a few push-ups.

Fernande’s motto is LML or “Let Me Live.”

The benefits of her active lifestyle not only keep her physically in shape, but the social aspect Winter 2014 / Kidney Living /

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of activity, whether it’s meeting people on the street or enjoying the outdoors, helps keeps her mind sharp. “Activity is a winning situation all the way,” she shared.

Her advice for others? Live in the present moment. As she leans forward to share a smile and a big hug, she says quite simply, “To be balanced we need at least three human contacts a day—it stimulates the body.” There is no doubt that Mme. Caron-Dery’s spunky disposition full of energy and charm adds warmth to everyone around her.  q Upright and mobile: Fernande

walked on her own in the 2013 Walk

Join us this September in a community near you.

Online registration will be available soon.

www.kidneywalk.ca

We’re building a team of volunteers!

It’s time to make The Kidney Foundation well known in the community!

We are revitalizing our programs through engaging volunteers. Volunteer positions include: health promotion volunteers to participate in community outreach; patient education volunteers to assist with health and life skills workshops for patients; health information support volunteers to provide administrative and other assistance; and other positions that can be suited to your volunteering needs.

We need your help! This is a great opportunity to give back to the kidney community, the community at large, or to gain professional experience.

Contact Amika Gupta agupta@kidney.on.ca for more information or call 1.800.387.4474 ext.4574

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“The two most important things about The Foundation to me are the extensive support and services provided to chronic kidney patients beyond that available through regular medical therapy, and literally hundreds of research projects, supported by The Foundation, in the search for the cure and prevention of kidney disease.

p Linni, with Sam Watt at the 2013 Chinese Renal

Association dinner

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Linni Xu How she adds activity to her life

inni Xu knows the effects of kidney disease. She was on dialysis for six years, and recently received a kidney transplant. Six years after Linni immigrated to Canada, she was devastated to learn that her kidneys had failed. The diagnosis of kidney failure was both emotional and stressful, but with help and support from her family, her peers and The Kidney Foundation of Canada, Linni learned some important ways to cope with kidney disease. She worked with her healthcare team to select the type of dialysis that best fit her lifestyle. Linni went back to work as a computer consultant and added activity back into her schedule. She was afraid that she couldn’t do vigorous exercise, so she chose to walk daily. If she felt that she could do a 30-minute walk, that’s exactly what she did.

On days where Linni felt she had more energy, she extended her walk to an hour. The support of her family every step of the way really helped Linni to remain positive and live as normal a life as possible.  www.kidney.ca/ontario

“It was clear from the beginning of end stage renal failure therapy in the early 1960s, that an organization dedicated to the care and support of chronic kidney disease and the support of scientific research was necessary.”

Dr. George deVeber Volunteer and Ontario Kidney Foundation Founder (Source: Ontario Branch Annual Report 1990)

Tax Tips or f Dialysis Patients The tax tip information package is available online at

kidney.ca/taxtips

or through your Renal Program.

The package includes information about the Disability Tax Credit, eligible medical expenses, home dialysis expenses and more.

While we make every effort to be accurate, we recommend you seek professional tax advice for your individual questions.

Winter 2014 / Kidney Living /

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THE FOUNDATION OF KIDNEY CARE

Planned Giving

by Bruce Hill

For details on the many kinds of planned gifts you may wish to consider, please visit www.kidney. ca/plannedgiving, then contact the nearest Ontario Chapter to find out more. For a complete contact list, see page 23 of Kidney Living or visit www.kidney. ca/on/contactus You may also email kidney@ kidney.on.ca or call 1.800.387.4474.

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n any given day, ask Judy Fleming how she is and you will always get the same response “Great!” Five and half years of peritoneal dialysis may have her responding differently, but she is thankful for her time in this world and wants everyone to share her positive outlook on life.

Born and raised in Montreal, Judy and her husband, Leo, worked together at Bristol-Myers Squibb Pharmaceutical—he in regulatory affairs and she in marketing. Both had a love for travelling but were just as happy to be at the cottage. Early retirement proceeded until Leo’s untimely passing. Judy has since faced many medical challenges, including her own struggle with stage-four kidney disease. She knows full well what patients face having herself experienced in-centre and now peritoneal dialysis.

An ongoing contributor to The Kidney Foundation of Canada, Judy has a great compassion for others. She is particularly aware of the financial challenges faced by her fellow patients as they struggle to meet everyday needs, including getting to and from dialysis three days a week and having enough money to put food on the table.

But Judy’s greatest conviction lies in doing

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Photo credit: MediaBakery.com

How one person plans to leave her mark.

something about kidney disease itself. She thought about what more could be done to help those whose lives have been affected by this disease, and knew that research into the causes of the disease and improved treatment methods would help those patients of the future.

With the help of staff at The Kidney Foundation, Judy was provided with information detailing the many medical research projects funded by the Foundation. Support received from companies, foundations and people like Judy help to fund ground-breaking research across Canada. Since The Kidney Foundation was founded, over $110 million has been invested in research.

Judy decided the best gift she could make was including The Kidney Foundation in her will, so that a tax-deductible percentage of her estate will come to the Foundation. This planned gift—a bequest—will create the Leo and Judith Research Endowment Fund. This fund will generate annual income to support life-saving kidney disease research.

You too can make a difference for people whose lives been impacted by kidney disease.  www.kidney.ca/ontario

LIFESTYLE

Body and Soul

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African Caribbean promote healthy living

by Caroll Rattray

pirituality and religion play a key role in the promotion of healthy living within the African Caribbean community.

Recognizing this, the African Caribbean Kidney Association (ACKA) Chapter of The Kidney Foundation of Canada is building relationships with these key community pillars.

Religious participation remains a central feature in the lives of many African Caribbean people, so strengthening the connection between faith, body and mind is key to building more community awareness about kidney disease and other chronic illnesses.

Over the last few years, churches have increasingly started inviting healthcare professionals into their congregation to speak to the importance of taking care of the physical person. So, although the soul is not to be ignored, there is a stronger recognition that the physical and spiritual should work in harmony to produce a more healthy being.

Hand in hand with health education is information about keeping bodies balanced with nutrition and healthy lifestyle choices.

This education then gets shared with the congregants’ extended families, so not only is there opportunity to influence the participating individual, but the information flows in a holistic way to a potentially larger audience.

It’s very important for churches to be involved in teaching a balanced approach to health. Even if an individual doesn’t attend church or doesn’t consider themselves

a believer, respect for religion and spirituality is deeply engrained in the culture. So much so that if the church begins to embrace a balanced approach to health, it is an impetus for a change in thought, attitude and acceptance within the community.

The African Caribbean community is at higher risk of developing diabetes, hypertension and kidney disease, so it is vital to include church leaders in conversations about healthy living, lifestyle changes and promotion of the same.

In keeping with its mandate to work within the African Caribbean community to raise public awareness of kidney disease risk factors, ACKA has completed a few kidney health screenings through SeeKD clinics, and health information sessions at various churches. We have been warmly received and encouraged to return for more of these sessions.

ACKA plans to continue reaching out to the African Caribbean communities’ churches as they are a key partner in delivering the message of reducing the risk of kidney disease through lifestyle adjustment and healthy living.

If you are a community leader who would like to discuss opportunities for education sessions or other community outreach events with The Kidney Foundation, please contact us. 

www.kidney.ca/ontario

Photo credit: iStock.com

For more information on the African Caribbean Kidney Association, and details on upcoming SeeKD clinics or kidney health information sessions, please visit www.kidney.ca/acka or call 1-800-387-4474 Ext. 4978.

Winter 2014 / Kidney Living /

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THE FOUNDATION OF KIDNEY CARE

Marking some key milestones as 1964 – Kidney Foundation receives official charitable status.

1964 - First official fundraiser – special showing of the film My Fair Lady organized by The Foundation’s Ladies Auxiliary 1973 – First year of research funding. $48,000 allocated to kidney research.

1988- Peer support program started.

Karol Steinhouse was the first coordinator.

1979 – March is declared Kidney Month

1972 – Ontario Branch was instrumental in having organ donor cards attached to driver’s licenses.

2002 – First Nati Chronic Kidney D Toronto

1996 – Links to Success Forum is held to develop solutions to the shortage of organs for transplantation

1985 – One million wallet size cards were given to the public to explain warning signs of kidney disease.

1994 – Kidney Car begins in Canada

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1982 – First Patient Manual is produced.

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1969 – Ontario Branch received its Charter. Drs. George deVeber and Stan Fenton, along with Leo Hyland, James Clarke and William Blackburn helped spearhead the movement.

2004 – Endowment Fun surpasses 1 millio

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www.kidney.ca/ontario

THE FOUNDATION OF KIDNEY CARE

The Kidney Foundation turns 50!

2009 – Long term advocacy efforts of The Kidney Foundation are celebrated when the Ontario Renal Network is formed to provide a coordinated approach to renal care in Ontario.

ional forum on Disease is held in

2011 - The Kidney Foundation supports new easy-to-use web tool for registering consent to be an organ donor. Register online at www. beadonor.ca/kidneyfoundationofcanada

2008- The One Life Many Gifts secondary school curriculum is launched with the partnership and support of The Kidney Foundation.

2014 – Kidney Foundation celebrates 50 years. Thank you to all our volunteers and supporters both past and present for making an incredible difference in the lives of those affected by kidney disease.

Throwback Thursdays

Stock photo credits: BigStockPhotos.com and Photos.com

2013 – Over $110 million has been awarded to kidney-related research in Canada.

Follow us on Facebook and Twitter to catch our Throwback Thursday posts @KidneyOntario and @facebook.com/ kidneyfoundation. Share your memories with us by posting online or emailing communications@kidney.on.ca.

nd on

www.kidney.ca/ontario

Winter 2014 / Kidney Living /

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THE FOUNDATION OF KIDNEY CARE

The Power of Volunteers

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“Is there nothing that can be done?”

Photo credit: GraphicStock.com

by Trish Reynolds

For more information about the Foundation’s volunteer opportunities visit www. kidney.ca/on/ getinvolved or call 1-800-387-4474 Ext. 4574

hese words rang in Dr. Dossetor’s ears when confronted by a family who had lost a young family member, Morty Tarder, to kidney disease. His extended family and a network of supporters would become The Kidney Foundation’s first volunteers, taking their concern and grief and transforming it into a drive and purpose, providing hope to thousands of other Canadians affected by kidney disease.

Over the last 50 years, The Foundation has had the generous support of thousands of volunteers. Some volunteer because, like our organization’s founders, they have a personal connection and understanding of kidney disease. Others, such as March Drive volunteer, Alice Palmer (see Quote on page 17), give of their time with the hope of contributing to their community and giving back to others.

Our volunteers show their support by sharing their stories; they serve on committees and advocate for the needs of others. They share their experiences as peer support volunteers; they lead walks and other fundraising and awareness activities. They knock on doors on bitterly cold days and they help introduce The Foundation to others through committee support and public speaking opportunities.

But what motivates volunteers to contribute their time? A 2004 Canadian Centre for Philanthropy study by David Lasby concludes that believing in the cause is the primary motivation for 95 percent of Canadian volunteers, followed by an opportunity to use skills and experience (81 percent), being personally affected, or knowing someone who was personally affected by the cause an organization supports (69 percent) or to explore their own strengths (57 percent).

For organizations such as The Kidney Foundation, volunteers like Navaira Atiq and Carryl Potter are vital. Navaira is an internationally

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trained doctor who is currently gaining experience in Canadian healthcare. She supports the awareness and health promotion efforts of The Kidney Foundation by attending health fairs and delivering presentations to at-risk groups. She shares information about chronic kidney disease, the issues kidney patients face, and how people can prevent chronic disease through healthy living. “Volunteering serves two purposes. It gives me exposure to kidney related issues which helps me in my pursuit of becoming a Nephrologist, and I also get to spend my time in a productive way which makes me feel good about contributing to my community,” said Navaira.

Carryl Potter is a long-time volunteer with The Kidney Foundation in Ottawa. Carryl has been involved in everything from fundraising to leadership roles on the Chapter Board and now shares information about kidney disease through educational outreach to at-risk communities. A retired educator, Carryl knows the challenges families affected by kidney disease face. Carryl’s daughter was diagnosed with kidney failure early in life. She has had three kidney transplants, the last one in 2004, a donation from Carryl. “Volunteering with The Kidney Foundation provides a great way to connect with the community. There is a strong sense of satisfaction in giving back to those that have given me so much,” said Carryl.

Community Development and Program Volunteer Coordinator, Amika Gupta, says that there is always a need for volunteers. “We have so many opportunities, so many diverse needs and people interested in volunteering really can find the role that best fits their wants and needs. From our education and programs to fundraising support there really is the perfect volunteer opportunity for everyone!” said Amika.  www.kidney.ca/ontario

Gaétan Frigon & Hélène Héroux

THE FOUNDATION OF KIDNEY CARE

Fifty Canadians get up close and personal about kidney disease and how it has affected their lives.

Don Cherry

Graham Farquharson

Annette Verschuren

As The Kidney Foundation marks its 50th Anniversary in 2014, we are doing something big to inspire the kidney community – and shine a spotlight on kidney disease by revealing the facts, myths, personal struggles, and sometimes even stigma, about kidney disease.

50 Canadians affected by kidney disease share their own very personal stories (many for the first time) which are sure to touch, inspire, and illuminate readers who have gone on similar journeys. All of these Canadians, whether they are CEOs, celebrities or everyday heroes, are all part of a large kidney community – a community made up of those who have kidney disease, have a family member or friend who is affected, have donated a kidney to save someone’s life, or have roles as researchers and health care professionals committed to making life easier for kidney patients.

Brett Wilson

Watch for our special Campaign Magazine in Spring 2014. www.kidney.ca/50kidneystories

Michael Bublé

Alex Lifeson

‘I don’t understand why more people don’t talk about their transplant experience. Why not be proud? Just because I’ve had a transplant doesn’t mean I’m going to take it and run, I’m going to let people know why I can run.”

Hélène Campbell

Hilda Gregory

“Most Canadians don’t know beans about their kidneys.

I didn’t until my son suffered kidney disease and thankfully my daughter was able to donate a kidney to save his life.

One day we were sailing along, everything was rosy, and then everything changed.”

Terry Leon

Don Cherry

Inside the magazine: • • • • •

John & Lotte Davis Garry Keller

Dr. Shiv Jindal

More words of inspiration from kidney patients and their families Personal strategies for coping with kidney disease and kidney failure How family and friends pull together in times of crisis Surprising linkages between diabetes, heart disease and your kidneys How Canada ranks when it comes to organ donation

Colleen Hayes

www.kidney.ca/ontario Dr. John Dossetor

Jason Dunkerly

Winter 2014 / Kidney Living /

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THE FOUNDATION OF KIDNEY CARE

From Moose Factory to Camp Dorset

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Family vacations for kidney patients becomes a reality

by Trish Reynolds

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barge, a train, a bus and the support of many partners and friends made a Camp Dorset vacation a reality for seven families from Moose Factory, Ontario.

The trip, almost two years in the making, was the first opportunity for these extended families to travel outside of their remote northern Ontario community for a family vacation. It all started with a conversation between Renal Social Worker, Madeline Borden, and a patient from Moose Factory almost two years ago. The patient expressed interest in learning about education activities and opportunities for his remote community and through this conversation the topic of Camp Dorset was discussed.

Borden initiated conversations with Helen Walker, Administrative Coordinator at Dorset, and plans were put in place to secure a time in 2013 for Moose Factory patients to attend the beloved camp. “Booking the time at Dorset was likely one of the easier steps,” says Borden, “I’m not sure people really understand the distance and limitations of travel for residents of Moose Factory.” People can’t just drive in and out of Moose Factory and Moosonee. “In fact, they have to board a train to get to the nearest town just to buy products that we take for granted every time we step out,” she added. www.kidney.ca/ontario

THE FOUNDATION OF KIDNEY CARE

Moose Factory

Quot es, Not es Anecdot es

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Camp Dorset

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Alice Palmer In January of 2013 while giving a series of workshops in Moose Factory, Borden presented the group with information about Lion’s Camp Dorset.

The group was very enthusiastic and many expressed a keen interest to attend camp with their families. With no roads out, getting to Dorset would prove to be a challenging task. For a large group, the costs can be prohibitive. But with a resolve to make this dream vacation a reality, the patients, their families, renal teams, the community and many partners, including The Kidney Foundation, banded together to make this dream a reality.

Some members of the group went to Casino Rama seeking financial support. To everyone’s astonishment, they were granted $45,000. While this might seem like a lot of money it isn’t when considering the expense of getting a group of seven patients, 37 family members and two renal staff from Moose Factory area to Dorset.

Moose Factory is remote. First, the patients boarded a barge to cross the river. From there, they filled a train car and travelled as far as Cochrane.

After a night’s stay at a local hotel, they boarded a coach bus to make the final 500km trek to camp.

The trip was a true community effort. Bake sales were held to raise funds for food. The Kidney Foundation stepped in to provide subsidies where needed, medical teams worked hard to ensure that everyone could make the journey, and Helen Walker at Lion’s Camp Dorset went the extra mile, planning special activities for the group, including a trip to Santa’s Village, to ensure that this vacation was one they wouldn’t soon forget.

It’s so important for individuals and families to have experiences in their lives that are not about their disease. “This trip to Camp Dorset was about supporting families to be families, and not just caregivers. It’s about creating experiences where patients aren’t patients—they’re people. And most importantly, this trip was about community. We are so thrilled that we were able to be a part of this community in action and to enable such a positive experience for so many people,” said Ainsley Chapman, Director, Programs and Public Policy, The Kidney Foundation of Canada.  www.kidney.ca/ontario

“Congratulations and happy 50th birthday to The Kidney Foundation of Canada! It has been a pleasure to be one of many volunteers enabling caring Canadians to support those affected by kidney disease. I’ve found friendly leadership from our local chapter staff, interested help from other volunteers and willing financial support from our local community. Some volunteers have experienced the disease within their own families while others, like I, have not. Over the years there have been some sad times as well as humorous ones, like the time I was preparing cheques for bank deposit and noticed one that had been made out to a different charity, not The Kidney Foundation! However, like all other small mistakes, this one was quickly rectified. The donor, who supports many charities, had prepared some cheques in advance and accidentally gave our canvasser the wrong one. There are many generous, good people like this in our community and it is our role to contact them.”

Alice has been a March Drive captain and canvasser in Sarnia for 22 years.

“Volunteers are the only human beings on the face of the earth who reflect this nation’s compassion, unselfish caring, patience, and just plain love for one another.”

Erma Bombeck Winter 2014 / Kidney Living /

17

FOOD AND NUTRITION

Food You Can Bank On In March 2013, 375,789 Ontarians visited food banks across the province.

Photo credit: BigStockPhoto.com/18866873

by Pamela Sleightholm Mississauga Food Bank

Visit The Kidney Community Kitchen, www.kidneycommunitykitchen.ca for a useful resource sheet for tips on navigating the Food Bank when on a renal diet.

18 / Kidney Living / Winter 2014

T

he Ontario Association of Food Banks offers a glimpse of who those people are in its Hunger Report 2013. The findings may surprise you.

Food bank clients include children, seniors, students, university graduates, Ontarians holding more than one job, and people living with disabilities who cannot work. They’re people who aren’t able to afford enough food for their families and face very difficult choices every month—food or heat? Food or a bus pass to get to work? Food or medicine?

People diagnosed with kidney disease are often thrust into financial challenges they weren’t prepared for. Dialysis treatments, doctors’ appointments, exhaustion, and travel to and from hospital can chew into time that could otherwise have been spent earning money. Some patients may find themselves facing difficult financial choices, while trying to take care of their health and adjust to a new lifestyle.

“Hunger can happen to anyone, even in Ontario,” says Chris Hatch, executive director of The Mississauga Food Bank. “Many clients visiting a food bank for the first time are there because they’ve just lost their job, they’ve relocated, or they can’t return to work because of illness or injury.”

Across Ontario, 27.4 percent of food bank clients receive Ontario Disability Support Payments as their primary income. A family of four with one person claiming ODSP may receive about $1,768 per month.

According to the 2011 National Household Survey, the average monthly housing costs for a home owner in Ontario is $1,284, including utilities. Ontario renters pay an average of $926, including utilities. Factor in the costs of food, telephone, transportation, hygiene products and childcare and you can see how easy it is to come up short at the end of the month.

“Many of our clients need support from The Mississauga Food Bank for a year or less,” Hatch says. “They use the food bank as an emergency resource when they’re going through an unexpected change and just need a little boost. It may be difficult to ask for help at first, especially if you’ve always made it on your own. But it’s important to understand that you’re not alone in needing a little help, especially when you need to be focusing on your health.”

Don’t go hungry. If you need help getting enough food for yourself or your family, speak to your renal social worker or visit www.oafb.ca to find a food bank near you.  www.kidney.ca/ontario

LIFESTYLE

Celebrating Milestones As The Kidney Foundation turns 50, volunteer Ken Hughes will celebrate the 40th anniversary of his kidney transplant

D

p Ken and his younger sister and kidney donor

Laurelle at his 25th transplant anniversary open house

This story was originally posted in 2009 on The Kidney Foundation’s website with information from Nancy Hughes and past National President, Kathryn Richardson. www.kidney.ca/ontario

r. Ken Hughes’ involvement with The Kidney Foundation began in the 1960s in Winnipeg when he first experienced kidney failure and started dialysis. Ken and his wife Nancy Hughes continue to canvass for the March Drive, The Kidney Foundation’s annual door-to-door fundraising drive, in their community of Goderich.

Dr. Hughes, now 80, will celebrate 40 years of living with a successful kidney transplant made possible by a living organ donation from his youngest sister, Laurelle.

Symptoms of kidney disease are often silent, yet Dr. Hughes first became aware of his kidney problems when he developed swollen ankles as a teenager. In the mid-1950s, when he was in his early 20s and had just completed an MA at the University of Manitoba, his doctor told him that his kidneys were failing and that the prognosis was poor. After exhausting all treatment options, and not wanting to burden his family, he left Canada and traveled to Jamaica.

One day, while reading an American magazine, he noticed an article written by First Lady Mamie Eisenhower, a Patron of the American Kidney Foundation. The article described ongoing research in the United States.

Ken wrote a letter to Mrs. Eisenhower, and shortly thereafter received a reply from renal specialists at a Chicago hospital who offered Ken the position of "guinea pig" for research. Ken had also been accepted for the PhD program at the University of Chicago. Together, these developments provided a golden opportunity. He spent several months in the hospital working with doctors, and was well enough to enter the University of Chicago during the fall term. Upon completion of a doctoral degree, he returned to Winnipeg where he was employed as a professor of physiology at the University of Manitoba.

After returning to Winnipeg in the 1960s, his kidneys failed and he had no choice but to begin dialysis. His dialysis sessions occurred three times a week for eight to nine hours per sitting and he was helped by a dialysis nurse. Since he worked in a medical setting, the dialysis unit was close to his office, and his secretary would sit with him at the machine while he dictated letters.

Over the next 10 years, however, his kidney disease progressed. In the fall of 1974 it became clear that dialysis would not keep up with his needs and a transplant was planned. After extensive testing, Ken's younger Winter 2014 / Kidney Living /

19

LIFESTYLE

sister, Laurelle, proved an almost perfect match. A seven hour surgery was done at the Winnipeg General Hospital with Dr. Ashley Thompson as the lead surgeon. Two weeks later, Ken and Laurelle left the hospital together and neither has ever looked back. At the time, doctors were thrilled to advise him that he might get 10 “normal” years with his new kidney, never anticipating that his new kidney would last 40 years.

His doctors, recognizing his leadership skills, encouraged Dr. Hughes to become involved with The Kidney Foundation. He began volunteering locally and eventually joined the National Board, serving as National p Ken and Nancy Hughes at a Kidney Foundation event President in 1985-86. Reflecting on his volunteer work, Dr. Hughes is quick to share that his fondest memories are the wonderful people he has met through the years that still share the same passion and purpose to ease the burden of kidney disease as they did when the organization began in the 1960s.

“Ken feels that there is no way that he would ever be able to do enough to assist The Kidney Foundation,” says wife and Kidney Foundation volunteer, Nancy. “But as for his donor sister, how could anyone repay another person for giving them their life back? It is just not possible.

Every day is a new day for which we both are thankful. Ken now often feels his age, but it is an age which he never dreamt of attaining. That first contact with The Kidney Foundation in the early 1960s has changed his life, and has ultimately given him a life.” 

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Join now at KidneyConnect.ca 20 / Kidney Living / Winter 2014

Quot es, Not es Anecdot es

&

Marianne Boddaert

“When kidney disease affects your family, you throw your whole self into it and it becomes your whole life. Canvassing and being a captain gives you a sense of giving back to the organization.”

Marianne has been a canvasser in the Forest area for 25 years.

Judy Williamson

“People seem to trust The Kidney Foundation and are usually willing to give. The younger generation thinks differently than the older ones do, and most are not willing to volunteer as much. I feel a sense of obligation to help, and enjoy renewing acquaintances in the community. The Kidney Foundation is very active in our area and helping gives me a sense of community.”

Judy has been volunteering for The Kidney Foundation for 19 years. Judy canvasses in Petrolia but helps with events throughout the Lambton County area. www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

community highlights Bowl ‘13 u The Kidney Foundation of Canada held its eighth annual bowling event on November 17, 2013 at Lucky Strike inside Vaughan Mills. Thank you to all of the bowlers and supporters who helped raise over $35,000 to support those living with kidney disease.

Bowl ’13 Chair Harvey Lipman with his team the Holy Bowlers.

37th Annual Pro Am Donates to two Sarnia Charities t The Kidney Foundation and SODA (Sarnia Organ Donors Awareness) Group were the recipients of $20,000 dollars raised during the 37th Sarnia Pro Am. Over $188,000 has been donated to the two charities since 2005. The two charities will continue to be the co-recipients of the Pro Am proceeds until 2015.

L to R: Paul Lane, Investment Advisor, TD Waterhouse; Major Sponsor; Connie Ellis, SODA Representative; Jamie Parkinson, Head Pro, Sarnia Golf & Curling Club; Bill Woods, Investment Advisor, TD Waterhouse and Elaine Hayter, Kidney Foundation Representative.

www.kidney.ca/ontario

Winter 2014 / Kidney Living /

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COMMUNITY HIGHLIGHTS Longo’s Family Charitable Foundation supports Kidney Foundation Programs u Thank you to the Longo’s Family Charitable Foundation and the participants of their 24th annual charitable golf tournament in June 2013 for their donation of $20,000 in support of our summer camp programs which helped our patients attend Camp Dorset and Camp Kivita. Charitable Foundations such as the Longo’s Family Charitable Foundation continue to have a significant impact on our ability to deliver programs and services that benefit both patients and their families.

L to R: Rosanne Longo, Longo’s Spokesperson and Brand Ambassador and Ainsley Chapman, Director Programs and Policy for The Kidney Foundation of Canada, Ontario Branch.

2013 Help Santa Toy Parade t Friends of The Kidney Foundation of

Canada, Eastern Ontario Chapter, were invited to participate in the 2013 Help Santa Toy Parade in Ottawa. Pictured here are two young participants who braved the cold for the event. The float was built by Tyler Simard with the theme of “Whoville and the Grinch.”

The Kidney Foundation of Canada, Ontario Branch 2013 – 2014 Board of Directors

India Canada Fundraiser supports Kidney Foundation q On October 18, 2013 the Windsor and District Chapter benefitted from a portion of the proceeds of the Annual India Canada Association Fundraising Gala. - $4,200.

L to R: Dr. Sushil Jain, Dennis Diemer, Jason Sekhon

22 / Kidney Living / Winter 2014

Executive Terry Young, President Harvey Thomson, Past President Niloufer Bhesania, Treasurer Directors at Large Roza Berkowitz Craig Kerr June Martin Dr. Judith Miller Janet Morgan Ken Mylrea Shirley Pulkkinen Greg Robbins Mary Smith Susan Storey Susan Tkachuk Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS 20-27 National Organ & Tissue Donation Awareness Week 27 Alive to Strive Race, Ottawa 30 Celebrity Men’s Fashion Show, Toronto

May 3

For details about these and other events in your community, call The Kidney Foundation of Canada office nearest to you, or visit www.kidney.ca/ontario.

Ontario Branch Annual General Meeting, Toronto 14 50th Anniversary Celebration, Ottawa 15 Celebrity Men’s Fashion Show, Sarnia

25

Roy Anderson Memorial Golf Tournament, Niagara

August

15 3rd Annual Ian Hay Memorial Golf Tournament, KitchenerWaterloo

September

Kidney Walks in 45+ Ontario communities

June

March

1-31 March is Kidney Health Month 1-31 Chili Promotion at Wendy’s Restaurants, Sault Ste. Marie 1 Shake the Foundation, Renfrew 1 30th Annual Serata Italian Night Dinner, Ottawa 13 World Kidney Day 22 13th Annual Marvin Valensky Memorial Stickspiel, Kingston 29 Kuts for Kidneys, Sault Ste. Marie

April

6-12 National Volunteer Week

5

Celebrity Men’s Fashion Show, Kitchener-Waterloo 5 Stand Up for a Cure, London 13 14th Annual Kidney Foundation/ Christine LeBrasceur Memorial Golf Classic 17 HUB International Golf Classic, Windsor

July 10

25 26

2014 Golf Challenge for Kidney Research, London 2014 Golf Classic, Timmins Biz X Beach Jam, Windsor

The Kidney Foundation of Canada Ontario Branch Annual General Meeting

May 3, 2014 – Toronto Call Carol Kostoff at 1-800-387-4474, Ext. 4972 for more information.

Photo credit: GraphicStock.com

COMMUNITY CONTACTS Ontario Branch 1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003 kidney@kidney.on.ca African-Caribbean Kidney Association

1-800-387-4474 Ext. 4140 crattray@kidney.on.ca

Chinese Renal Association

519-344-3462 ehayter@kidney.on.ca

Eastern Ontario 613-724-9953/1-800-724-9953 bhill@kidney.on.ca

Sault Ste. Marie

Hamilton & District 1-800-387-4474 Ext. 4969 jfraser@kidney.on.ca Kingston 613-542-2121 alabrash@kidney.on.ca

Brampton

Niagara & District 1-800-387-4474 Ext. 4969 jfraser@kidney.on.ca

Brant County 1.800.387.4474 ext. 4130

North Bay 1-800-387-4474 Ext. 4110 northbaykidney@gmail.com

1.800.387.4474 ext.4120

Central Ontario

1-800-387-4474/905-278-3003 kidney@kidney.on.ca

www.kidney.ca/ontario

Sarnia-Lambton

1-800-387-4474 Ext. 4977 pchan@kidney.on.ca

Northern Superior

705-949-0400 ssmkidney@shaw.ca Southwestern Ontario

519-850-5362 rramzanali@kidney.on.ca Timmins-Porcupine

705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District

519-977-9211 emuscat@kidney.on.ca Western Ontario (Kitchener/Waterloo)

1-800-387-4474 Ext. 4969 jfraser@kidney.on.ca

807-624-2680 kidney@tbaytel.net

Winter 2014 / Kidney Living /

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Do you enjoy receiving your complimentary copy of

Living

KIDNEY

You can now help ensure that you and your friends and neighbours continue to receive The Kidney Foundation’s magazine filled with news and tips to help you through your journey with kidney disease.

A simple donation of $25 will help offset the costs of producing and delivering this magazine to you. Make a donation of $100 or more by May 31 and you will receive a commemorative 50th Anniversary lapel pin.

Visit www.kidney.ca/kidneyliving to make your donation or use the business reply envelope enclosed.

Canadian Publications Mail Agreement # 40011479

Postmaster: Please return undeliverable Canadian addresses to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1