SPRING 2017
The Kidney Foundation of Canada – Quebec Branch
newsletter
ORGAN DONATION
2016: a record-setting year for living donations in Quebec page 3
ORGAN DONATION
Testimony: a Gaspé student received a scholarship from the Foundation page 3
PLANNED GIFTS
A volunteer contributes to the sustainability of the Foundation’s activities page 10
Amanda wants you to join her for the 2017 Kidney Walk page 6
The personal information you have provided is used only to send you this newsletter. If you no longer wish to receive it, please e-mail us at infoquebec@kidney.ca or call us at 514-938-4515. Dear readers: Help enrich our newsletter by sharing your experiences with kidney disease or transplants! Please send a text of up to 300 words, along with a high-resolution photo, to infoquebec@kidney.ca. COORDINATION AND WRITING Antoine Ardiley GRAPHICS AND PUBLISHING Ardecom PRODUCTION Ardecom CONTACT US: The Kidney Foundation of Canada – Quebec Branch 2300 René-Lévesque Blvd West, Montreal, QC H3H 2R5 TELEPHONE 514-938-4515 or 1-800-565-4515 FAX 514-938-4757 E-MAIL infoquebec@kidney.ca Circulation : 10,000 copies The newsletter is published three times a year by the Quebec Branch of The Kidney Foundation of Canada. Distributed in English and French to all people suffering from kidney failure, these publications provide valuable information on the Foundation’s services and activities, including the latest news about kidney disease and organ donation. The opinions expressed in this newsletter are not necessarily those of the Quebec Branch of The Kidney Foundation of Canada, its directors, employees or members. Moving? Write us at: infoquebec@kidney.ca. Articles may be reproduced provided that proper credit is given.
WORD FROM THE PRESIDENT AND THE EXECUTIVE DIRECTOR
We are pleased to share with you the milestones we reached in 2016, a great year for both accomplishing our mission and financial development. IMPROVEMENTS FOR DIALYSIS IN QUEBEC Response to the ministerial guidelines for people living with kidney failure In the fall of 2015, Quebec’s department of health and social services, the MSSS, published its guidelines on dialysis. It’s a very important document that specifies how the department plans to organize dialysis services in the province. The Foundation surveyed patients and health professionals about the challenges related to dialysis in Quebec and conveyed its key findings to the health minister at the beginning of 2016. Specifically, the Foundation supports the health department’s willingness to further develop access to dialysis at home, but insists on the need to provide dialysis patients with support and appropriate training. Because we know that some patients are not healthy or independent enough to benefit from home dialysis, the Foundation asked that patients be given access to hemodialysis services at healthcare facilities located less than a daily three-hour return journey away. Access to dialysis We were not content to simply communicate with the health minister on this issue. Throughout the year, we stated our position publicly in support of access to dialysis services within a reasonable distance. Whether in relation to the Royal Victoria Hospital dialysis unit’s move or the lack of adequate service in the Gaspé, the Foundation provided support to concerned and vulnerable patients. As a result of the pressure from the Foundation, the MSSS recently announced that three new hemodialysis sites would be created, in Gaspé, Sainte-Anne-des-Monts and Maria. INCREASING THE NUMBER OF KIDNEY TRANSPLANTS An active role on the provincial Living Donation Committee Chaired by Dr. Michel Pâquet, the Foundation’s Organ and Tissue Donation Committee convinced the MSSS that the rise in kidney donations from living donors is the primary driver of the growth in the number of kidney transplants performed in the province. In response, the MSSS gave the CHUM transplant centre the mandate to mobilize kidney transplantation actors across the province by sharing and developing best practices for doubling the number of transplants from living donors by 2021. The Foundation fully supported this goal and is delighted to be participating in the project. Higher numbers of deceased donors We have also continued our efforts to increase the number of organ donations from deceased donors in collaboration with
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The Kidney Community Newsletter SPRING 2017
Transplant Québec and the province’s healthcare facilities. Adding physicians to coordinate organ donations, creating an organ retrieval centre at Sacré-Cœur Hospital, increasing the number of donor registrations and organ donations following sudden death caused by cardiorespiratory arrest, and reducing the number of families who reject organ donation... All these efforts are paying off, so we need to continue. IMPROVEMENTS TO THE SCHOLARSHIP PROGRAM People living with kidney disease often cannot combine studies and the part-time job they need to cover their living expenses. Furthermore, many patients are forced to change careers due to their health issues. In response to this reality, the Foundation provides scholarships to people with kidney disease to help them obtain a college or university degree. However, the value of the scholarships had not increased since the program was created. But thanks to a donation from the RBC Foundation, we were able to double the value of scholarships in 2016, to $500 per term at the college level and $1,000 per term at university. Seven scholarship have been delivered in 2016. FINANCIAL DEVELOPMENT The fundraising strategies implemented in the past few years have begun paying off, and in 2016, support from the public and businesses was front and centre. Net fundraising revenues grew by $470,000. Once bequests are removed from the equation, net revenues from the Foundation’s fundraising activities increased by $246,000, or 15%. The Kidney Car program and the Kidney Walks were the primary drivers of this growth, but we cannot ignore the success of the Door-to-Door Campaign, special events and the Annual Campaign, where hundreds of volunteers teamed up to generate the revenues we needed to accomplish our mission. In the end, 2016 was a hugely successful year in terms of the financial support we require to further our cause. We would like to thank the volunteers and employees who make this success possible
SYLVIE CHARBONNEAU President The Kidney Foundation of Canada Quebec branch
MARTIN MUNGER Executive Director The Kidney Foundation of Canada Quebec branch
ORGAN DONATION
THE FOUNDATION AWARDS FOUR “GIFT OF LIFE” HUMANITARIAN AWARDS The Kidney Foundation of Canada is pleased to confer the 2016 “Gift of Life” Humanitarian Award on: • Costco • GLC Audio Vidéo • Hydro Québec • TUAC 501 We would like to congratulate these private-sector businesses, government body and union on earning this award highlighting their efforts to promote organ donation. To receive the “Gift of Life” Humanitarian Award, an employer needs to have provided one or more of its employees, whether kidney donors or recipients, with conditions that meet the following criteria: • The employee’s regular salary is paid before, during and after the kidney transplant or donation • Flextime or paid leave for medical exams or activities related to the organ donation or transplantation process is provided • Access to psychological, financial or other support is provided • The employee’s workload is reduced or modified upon his or her return to work according to the type of position held • The employee’s job is maintained with the same conditions and benefits Would you also like to see your employer recognized for its humanitarian efforts? Visit www.kidney.ca/humanitarian and complete the nomination form.
A GASPÉ STUDENT RECEIVED A SCHOLARSHIP FROM THE FOUNDATION My name is Gui-Gabrielle Boulay Fortin and I’m 25. On October 17, 2016, I had a kidney transplant thanks to my mother, France Boulay. I’d known about my renal insufficiency since I was eight years old, though the problem has been there since I was born. I recently applied to The Kidney Foundation of Canada in the hope of receiving a scholarship so I could go to university. It was actually a very quick and simple process. Soon after they examined my application, I was told I’d receive $1,000 per term, as long as I was registered full-time and passing my courses. You have no idea how much that money was going to help me. Because I had been recovering for a few months and was unable to work, I was fortunate enough to have this funding to help me pay my rent and cover part of my tuition fees. The scholarship took a big financial burden off my shoulders and lowered the anxiety I had been feeling because I’m on a tight student budget. And as a 25-year-old, it was important to me that my life get back to normal and that I go back to university despite my regular follow-up visits to the kidney transplant clinic. The substantial scholarship I got from The Kidney Foundation of Canada encouraged me to keep going. In addition to being accessible, the Foundation provides people living with kidney disease the opportunity to keep studying, which helps them view life from a different angle than just their struggle with health issues. I would personally like to thank The Kidney Foundation of Canada for these scholarships. You can’t imagine how much they’ve helped me. Thank you so much!
Gui-Gabrielle Boulay Fortin
A RECORD YEAR FOR LIVING DONATIONS AND THE SHORTEST WAITING LIST IN 10 YEARS In 2016, 56 people became living kidney donors, a 10-year record according to information from the transplantation programs. Transplant Québec also noted a continuous and significant increase in the number of potential donor referrals. What this means is that Quebec hospitals referred 626 potential donors to Transplant Québec in 2016, making it the top year in terms of donor identification with an increase of over 60% since 2010. In 2016, there were
170 actual organ donors, 480 transplant recipients and 331 kidney transplants from both deceased and living donors. The organ donation waiting list is also at its shortest in a decade. As at December 31, 2016, 841 people were registered – 423 less than in 2011 – with nearly 70% of them awaiting a kidney.
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NEWS FROM THE CHAPTERS
SPECIAL SCREENING OF HEAL THE LIVING, A FILM ABOUT ORGAN DONATION On February 23, Montreal’s Cinéma Beaubien hosted the premiere of the film Heal the Living, an event organized by The Kidney Foundation of Canada. Some 70 people attended the special North-American screening of the latest film by Katell Quillévéré about organ donation. Adapted from the novel of the same name by Maylis de Kerangal, Heal the Living tells the intertwining stories of a woman awaiting a heart transplant (Anne Dorval), the mother of a teenager on life support following a car accident and staff at the hospital where a race against time begins, with the goal being to convince the teenager’s mother, with all the necessary tact, to save the woman’s life by agreeing to donate her son’s organs, including his two kidneys.
Heal the Living is a film about the race against time that is organ donation; it explains in meticulous detail the various steps leading up to a transplant.
MARIO FORTIN, GENERAL MANAGER AND LOUISE LAVIOLETTE COORDINATOR (AND KIDNEY RECIPIENT) CINEMA BEAUBIEN AND CINEMA DU PARC
The Kidney Foundation of Canada wishes to thank Mario Fortin, General Manager of Cinéma Beaubien and Cinéma du Parc and Louise Laviolette, Coordinator, for hosting this free event for the Foundation, and Axia Films, for making this special screening possible.
MOBILE SCREENING CLINIC IN TROIS-RIVIÈRES
22nd QUEBEC CITY CHAPTER GOLF TOURNAMENT
A mobile hypertension and diabetes screening clinic was held on March 9, 2017, at Les Rivières shopping centre in Trois-Rivières. The 30 or so people who came out to have their blood pressure and blood sugar checked also went home with information on organ donation.
The 22nd edition of the Quebec City Chapter Golf Tournament will take place on June 19, 2017, at Club de golf des Pins in St-Alban de Portneuf. The Honorary Chairs of this year’s event will be Fernand Dufresne, President of Preverco Inc., and Jean-Maurice Vézina, financial planner at Investors Group. Individual tickets are $200 and foursomes $750, and include a shared golf cart, greens fees and dinner. For information contact Maryse Néron at 418-683-1449 or maryse.neron@kidney.ca.
RAISING AWARENESS AT THE QUEBEC PARLIAMENT A kidney disease aware ness clinic was held at Quebec’s parliament buil ding on April 25, 2017. Parliamentarians and staff learned more about kidney disease, organ donation and the work of The Kidney Foundation of Canada. DIANE BARBEAU, FORMER DEPUTY ON DIALYSIS AND VOLUNTEER FOR THE KIDNEY FOUNDATION OF CANADA WITH A PARLIAMENTARIAN.
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NEWS FROM THE CHAPTERS
Rouyn-Noranda
THREE STUDENTS HELD A SILENT AUCTION, RAISING $1,275 FOR THE FOUNDATION Three Accounting and Management Technology students at Cégep de l’Abitibi-Témiscamingue organized a silent auction that was held on March 26 at Jacques Laperrière Arena in Rouyn-Noranda at a match between the Rouyn-Noranda Citadelles and the Laval Patriotes. They found 30 sponsors in three weeks, and their event raised net proceeds of $1,275, which was given to The Kidney Foundation of Canada.
UPCOMING ACTIVITY IN THE BEAUCE REGION
As part of their courses, the three students had to organize a fundraising event for an actual organization. For the second year in row, a group chose The Kidney Foundation of Canada. Monique Veilleux, the mother of their teacher Cathy Marcotte, is currently undergoing dialysis. The Foundation wishes to thank these three students whose wonderful initiative raised awareness about the Foundation among the area’s population.
A benefit dinner will be held at La Vieille Tablée, a restaurant in Saint-Georges de Beauce on Thursday, May 11, 2017, as part of the Saint-Georges Kidney Walk.
DIANE BARRETTE TREMBLAY, AUDREY MERCIER-HÉROUX AND SANDRA GIRARD-DEMONTIGNY, ORIGINATORS OF THE AUCTION, WITH NICOLE JALBERT, DEVELOPMENT AGENT, THE KIDNEY FOUNDATION OF CANADA, ABITIBI-TÉMISCAMINGUE
For information on the event, contact Maryse Néron at 418-683-1449 or maryse.neron@kidney.ca
A MONT-LAURIER FAMILY DONATED THEIR CAR TO THE KIDNEY CAR PROGRAM Do you have an old jalopy taking up valuable space and want to get rid of it? Why not do like the Desjardins-Beauregard family from Mont-Laurier? They donated their car to The Kidney Foundation of Canada’s Kidney Car program. Marceline, 10, and Hadrien, 5, have polycystic kidney disease (PKD), a hereditary illness characterized by the formation of multiple fluid-filled cysts in the kidneys. In Marceline and Hadrien’s case, the disease has caused hypertension, leaves them thirsty all the time and makes their kidneys reject growth hormones. And because they’re growing slower than other kids their age, they have to take MARCELINE AND HADRIEN ARE PROUD THEIR FATHER DONATED THEIR CAR TO THE KIDNEY FOUNDATION OF CANADA
supplements to prevent complications. In the long run, they’ll have to go on dialysis and have a kidney transplant. Every year in August, Marceline and Hadrien attend the Kidney Kids Camp of the Foundation, which provides a well-deserved break to their parents, Silène and Benoit, who face daily challenges year-round. In exchange for their car, the Desjardins-Beauregard family received free towing and a receipt for income tax purposes. Follow their lead and donate your unwanted car to the Foundation’s Kidney Car program today! Call 1-888-228-8673 or complete the Kidney Car online donation form at kidneycar.ca
PROUD PARTNER OF THE KIDNEY-CAR PROGRAM
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NATIONAL PARTNER
QUEBEC PARTNER
THE 2017 KIDNEY WALK
kidney.ca/quebecwalk
We thank our local gold partners * Canada Trust, proud partner of the Boucherville Kidney Walk Pharmacie Eric St-Pierre et Marc Côté, Familiprix affiliated, proud partner of the Rimouski Kidney Walk Pharmacie Chabot et Associé (Laval), proud partner of le Tour de rein
PLENTY OF OPPORTUNITIES TO WALK THE KIDNEY WALK IN QUEBEC IN MAY AND JUNE
The Kidney Walk will be held in cities across Quebec on various dates in May and June:
SUPPORTING PEOPLE LIVING WITH KIDNEY DISEASE
• Sunday, May 21: Buckingham, Joliette, Rimouski and Saint-Jérôme • Saturday, May 27: Laval and Rouyn-Noranda • Sunday, May 28: L’Assomption (Sud-Lanaudoise), Boucherville, Dolbeau, Dollard-des-Ormeaux, Maniwaki, Quebec City, Saguenay, Saint-Georges, Saint-Jean-sur-Richelieu, Sherbrooke, Trois-Rivières and Val-d’Or • Sunday, June 4: Gatineau and Granby • Sunday, June 11: Châteauguay and Montreal • Saturday, June 17: Tour de rein (80-km cycling tour in Laval)
Over the years, the Kidney Walk has become the not-to-be-missed event for patients, their family members and health professionals. The Walk has been so successful in the past because so many of you have taken part. Thanks to you, the Kidney Walk has become a major fundraising event and a huge celebration bringing together Foundation supporters year after year. And thanks to the Walk, the Foundation can pursue its mission of funding patient services and research while promoting organ donation. Join us this year and help us celebrate the 2017 edition of The Kidney Walk.
Mark the Walk and Tour de rein on your calendar! * As of April 6, 2017
5 EASY STEPS TO A MORE SUCCESSFUL FUNDRAISER ASK people to contribute KEEP your sponsors updated It’s not enough to tell people that you’re taking part in the Kidney Use social media to keep your followers up to date on your Walk. Ask them to support you or, even better, to join you for the Walk! Use calls to action like “Donate today!” and “Join my team!” to get people to take action.
SHARE your story Tell your friends why you’re walking the Walk. Tell them about your journey with kidney failure and explain to them why the cause is so dear to you. And ask them to tell others your story! SET the bar a little higher Thanks to the Kidney Walk website kidney.ca/quebecwalk, it’s easy for your friends to share your messages with others. Encourage them to Like your personal Kidney Walk page on Facebook and to share it in order to expand your network.
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fundraising progress. Have you almost reached your goal? Tell people how much you’re missing to hit that goal. Example: I’m getting close to my goal of raising $1,000 for The Kidney Foundation of Canada’s Kidney Walk. Would you help me reach my goal by donating $25 for my Kidney Walk? (this is where you insert the URL for your personal fundraising page).
people is just as important as asking them THANKING for something
Publicly thanking your donors on social media is just one of many excellent ways to tell them just how much their support means to you. Example: Thank you, (insert donor name here)! Your donation as part of The Kidney Foundation of Canada’s Kidney Walk has brought me that much closer to reaching my fundraising goal. More importantly, your donation will help lighten the burden kidney disease places on patients and their loved ones.
The Kidney Walk would not exist were it not for the invaluable commitment and involvement of countless volunteers and participants. Read their stories to find out what motivates them to get involved and walk the Walk with the Foundation.
THE MONTREAL WALK
THE RIMOUSKI WALK
In 2015, 343 kidney transplants were performed – a record year - and my boyfriend, Daniel Paradis was among them. In August 25, 2015, Dan’s sister Katie selflessly donated her kidney to Dan. We were lucky that she was a match. I know that not everyone is as fortunate to have a family member willing to undergo such an intense surgery to save their loved one. I will never be able to fully thank Katie for giving my boyfriend his life back, but I will do my best in raising awareness and speaking out for organ donation so hopefully we can find better ways to treat and care for those with kidney decease.
KATIE AND DANIEL ERIC ST-PIERRE AND MARC CÔTÉ, PHARMACIE ERIC ST-PIERRE AND MARC CÔTÉ, FAMILIPRIX AFFILIATED
I am sure that this cause means a great deal to everyone. It is important to show our support by raising funds for the Kidney Walk and reminding everyone we know that it is extremely important to become an organ donor. No one chooses to live with kidney disease, but we can choose to dedicate our time and efforts to help save someone who does.
We were delighted to come on board to serve as Honorary Chairs of the Rimouski Kidney Walk to be held on May 21 at Beauséjour Park.
Montreal Kidney Walk spokesperson Amanda will be at La Fontaine Park on June 11 to walk with people living with kidney disease. DANIEL AND AMANDA
THE CHÂTEAUGUAY WALK For 15 years, kidney disease made life very difficult for my mother, Louise. I saw her determination, courage and hope, but also her sense of hopelessness and the injustices she faced. She died in 2013. At her bedside, she kept the following words: CHRISTINE AUGER
“How many people, sadly, have given up and stopped fighting, when it would have taken only one more step to transform failure into success. Taking a single step is never too hard, so you just need to have enough courage and determination to take one more step.”
As pharmacists, we meet and regularly give advice to patients with kidney problems. We have to make sure that they get the right treatment and that it’s safe for them, so we check their renal function to adjust the dose. Sometimes, we even have to change the medication that was prescribed, so we’ll work with the doctor to do that. The Kidney Foundation of Canada plays a key role in keeping society healthy through the many services it provides to patients, the funds it invests in research, its efforts to raise awareness about organ donation, and its kidney disease prevention and screening activities. We therefore ask you to join us in supporting this vital cause. Éric St-Pierre and Marc Côté are inviting you to join the Rimouski Walk on May 21
The Walk is a symbol of this struggle for success. Châteauguay’s Centre de suppléance rénale Louise Auger is the product of this determination. I walk in her memory and for all those who face constant challenges each day, and my message is that when you’re tired, rest, but never give up. LOUISE AUGER
Christine Auger wants you to walk with her on June 11 on Île St-Bernard. The Kidney Community Newsletter SPRING 2017
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THE SAINT-JEAN-SUR-RICHELIEU WALK My name is Nathalie Faille. I’m 48 and I live on Montreal’s South Shore. This is my story. When I was 7, my parents brought me to Sainte-Justine Hospital, where Dr. Mongeau, a nephrologist, discovered that I was suffering from chronic kidney disease and that I would eventually need to undergo dialysis treatments. In 1981, when I was 12, the hemodialysis began. Not surprisingly, high school was tough for me, because I was only there two days a week! But through it all, I kept smiling because I’m a positive person. In 1983, I received the gift of a lifetime, a kidney transplant. But unfortunately the graft lasted only three years. I went back on hemodialysis in 1986 and after only a month, the phone rang: they had another kidney for me! But it didn’t work out at all and my body kept rejecting it, so the surgeon decided to remove it immediately. The whole NATHALIE FAILLE experience was physically and mentally traumatic, so I decided to take my name off the waiting list. When I turned 18, I was transferred to a hospital for adults in my home town. In 1991, I got my college diploma, found a full-time job, and got my dialysis treatments at night. I met the man of my life and, in 1994, we got married. After 13 years of dialysis, I decided to put my name back on the transplant waiting list. In 1999, I had my third transplant, this time at Notre-Dame Hospital in Montreal. Again the transplant failed, and the doctors decided to put me right back on the list. Two years later, in 2001, without going back to dialysis in the meantime, I had another transplant. It was the fourth, and like every time before, I never lost hope that this would be “the one.” While it did last four years, I once again found myself facing chronic rejection. By then, I had lost all hope, and so had my husband. His love for me had waned, and in 2008 we separated. Now I’m back on dialysis. The odds of a fifth transplant working are slim because over the years, I’ve built up a lot of antibodies, but I haven’t given up hope yet! I’m working part-time in accounting and I’m still on dialysis. The silver lining of the story is that, as I write this, my new husband, who was also on dialysis, had a kidney transplant and everything is going well. It’s a new lease on life for him and for me too!
THE GRANBY WALK When in August 2014 I learned that I’d need dialysis, the shock was enormous. I imagined myself going to the hospital three times a week for hours at a time. To my great surprise, the nephrologist told me it could be done at home thanks to a procedure called peritoneal dialysis. Here was an alternative, a way for me to maintain my quality of life: I could be with my loved ones and go about my normal activities. At Hôpital du Haut-Richelieu in Saint-Jean, I met Dr. Yale, the nephrologist who explained what it would involve: installing a catheter in my abdomen so my peritoneum can serve as a filter; buying some equipment (a scale, a blood pressure monitor, an IV pole); rearranging furniture at home to make the dialysis process smoother; and a monthly follow-up with the peritoneal dialysis team. At the time, I was overwhelmed and worried: it seemed so hard and scary. I hadn’t yet realized how much help I’d get from the peritoneal dialysis team at the hospital in Saint-Jean. I went to the first meeting with a long list of questions, and the nurses answered every one of them with patience and respect. I never got the impression that I was wasting their time. I never felt hurried and above all, they were by my side, reassuring me at every step of the training process. Not once was I left to my own devices. When the time came to do my first home dialysis (drainage and infusion), a nurse came to my house to watch me do it. I was reassured by her presence. This year, I had the great privilege of having a kidney transplant at CHUS. I was very happy to witness, in the clinical transplant staff at CHUS, all the same dedication, compassion, respect and helpfulness I had so appreciated when I was undergoing peritoneal dialysis. A big thank-you goes out to all of you who made a potentially trying experience much easier. And thank you, too, to the team at CHUS who will be with me for what’s yet to come: you’re very important and are brightening up my future. Elyse Racine encourages you to walk with her at Granby’s Daniel-Johnson Park on June 4.
ELYSE RACINE
Nathalie Faille will be walking at the Centre de plein air Ronald-Beauregard in Saint-Jean-sur-Richelieu on May 28.
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PORTRAIT OF A VOLUNTEER
Éric Chandonnet, who suffered from kidney failure, received a kidney in 2013 after undergoing three years of peritoneal dialysis. He is also the originator and organizer of the Tour de rein, an 80-km cycling tour held in Laval every year for the past five, which has raised around $75,000 for the Foundation. Éric tells us the story of his illness, his transplant and his hope to make a difference for everyone living with kidney disease.
LEFT TO RIGHT, SAMUEL, NADINE, ÉRIC AND CÉDRIC WEARING THE TOUR DE REIN JERSEY
Since I was a young boy, I’ve wanted to join the police or the army. Then came the day I chose to go study at a police academy in Ottawa. I became a police officer in Northern Quebec and later took on a range of jobs in parapolicing. I finally got a job as a bodyguard with the public service in 2001. In 2009, I applied to the RCMP, knowing that the hiring process usually takes 18 to 24 months. I passed all the tests and physically, I was in better shape every day. I had only one last step with the RCMP doctor: blood and urine tests. That’s when they found blood in my urine and slightly high blood pressure. I met with nephrologists at Sacré-Cœur Hospital, who tried to make the practically uncontrollable phenomenon known as kidney failure go away. A year later, I received a letter from the RCMP that put an end to my candidacy, for obvious reasons.
which wasn’t improving. He told me that his offer stood, so I agreed. It was like being in a movie. A beautiful story unfolding, a tragic event that is slowly eclipsed, intrigue, a hero who appears out of the blue, a happy ending and the bad guys are gone.
And that’s when the problems really started. I had just put my foot into a trap that life had laid for me, and all I could do was accept it. One day when my kids had a ped day, I took them to one of my appointments to see how my health was developing. The nephrologist, powerless, announced that I had to go on dialysis and eventually have a kidney transplant if I were to survive. Wow, that was a shock! We had just lost my mother a month earlier. The nephrologist couldn’t have broken the news to me at a worse time. I broke down in tears in front of my kids, who didn’t understand what was going on.
During the three years I was on dialysis, being reassigned to another job within my department, my wife raised the idea of doing something for kidney patients.
The peritoneal dialysis started in November 2010 and went on for three years and I didn’t miss a single night. We continued doing what we’d always done, like camping in our trailer, travelling a little, going to parties and sports dinners, cycling and so on. A friend of mine, Fred, talked to his wife Marie about the possibility of giving me one of his kidneys. When he offered it to me, I refused. At the time, Marie and Fred had eight kids living under their roof! I didn’t think it was a good idea for them to embark on this kind of adventure. I had only just started dialysis treatments when I met Fred. Our kids were on the same hockey team and had known each other for two or three years. He heard about my condition and had already noticed my skin colour and the overall state of my health,
“Ti-rein” (Lil’ Kidney) made his big debut during a magnificent transplant on September 24, 2013. Thirty hours after the organ donation took place, Fred was back home, whereas I nursed my kidney back to health in the hospital for almost two weeks. But then we were released and free to go home, where my two tough boys, who hadn’t asked for a sick dad, were waiting for me.
That’s when I created the Tour de rein. In 2012, there were 15 of us, cycling 45 km with few means and a small group of volunteers, including my parents-in-law Danielle and Serge, my sister-in-law Fanny, my brother Daniel and Hélène, all of whom were faithfully by my side. By the 5th edition, more than 400 cyclists cycled over 350 km around the Island of Laval, raising nearly $75,000 for The Kidney Foundation of Canada. The Tour de rein story isn’t nearly over. We sincerely hope that more and more people will become aware of the importance of organ donation and join in. A big thank-you to my wife Nadine, kids Cédric (13) and Samuel (11), parents, friends and colleagues for helping me through this challenge. Éric encourages you to join the Tour de rein (Cycling Tour) in Laval on June 17. For more details, please visit kidney.ca/quebecwalk
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PLANNED GIFTS
DONATING A LIFE INSURANCE POLICY
LIVING ON AFTER YOU GO For a long time, I had been asking myself if there was a concrete and significant way to reaffirm my attachment to the kidney disease cause, even after I die, but one that wouldn’t cripple my budget for the coming years or one day deprive my loved ones of an inheritance. Regardless of the various kinds of planned gifts that are available, such as testamentary donations, in cash or shares, it occurred to me that contracting a life insurance policy with The Kidney Foundation of Canada as the beneficiary would allow me to reach many of my goals, while giving the Foundation the security of knowing how much funding it will be able to rely on in the future. In fact, the Foundation’s Planned Gifts Committee has just put together such a financial product in conjunction with Mr. Rémi Gilbert, insurance broker. By subscribing to this kind of policy, I know that the Foundation will benefit from the capital the policy generates long after I pass on. The policy will also generate returns on top of the insured capital. Moreover, in my lifetime, the premiums I pay each year will enjoy favourable tax treatment. Not bad, eh? If only I had known about this when I was younger, I would have made use of it much earlier.
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Now, thanks to this option, I really do feel as though I’m doing something concrete to contribute to the sustainability of the Foundation’s activities, especially considering that others will surely do the same. By choosing this course, I know that the Foundation and I will be sharing this journey for years to come and sustaining our commitment to kidney disease research, patient services and the promotion of organ donation. Speak to your loved ones about it, because this option might just interest them, especially if you’ve been told that you don’t meet the insurability criteria. My experience with the Foundation has shown me time and time again that the people in your life can be very appreciative of the time and energy you invest in such a wonderful cause. If you are interested in this approach, please take the time to find out more about the benefits and terms by speaking with Mr. Rémi Gilbert (450) 641-1515 ext. 233 Claude Pigeon Kidney Foundation of Canada volunteer since 1994
RESEARCH
A RESEARCHER IN THE SPOTLIGHT
Dr. Indra R. Gupta, Pediatric nephrologist at the Montreal Children’s Hospital My laboratory studies how kidneys and their drainage systems form during the development of the human embryo. We are inspired to study this because most children with kidney failure have a defect that occurs during the formation of the kidneys and the drainage systems. These types of organ defects arise as early as the 4th week of pregnancy when many women are unaware they are pregnant.
REsEaRch By thE NUmBERs
Our work has identified specific changes in DNA-the building blocks that define us- that result in kidney and drainage system defects.
DR. INDRA GUPTA (RIGHT) AND HER TEAM
My research program is focused on understanding how congenital kidney and urinary tract defects occur in children. I am passionate about this pursuit because in my work as a pediatric nephrologist, I see the incredible challenges that children face as they undergo dialysis and renal transplantation. In one project, we are identifying genes that lead to a congenital urinary tract defect known as vesico-ureteric reflux that puts children at risk for recurrent urine infections. In a second project, we are studying the role of the tight junction proteins, or claudins, during kidney development. The third project examines a kidney disorder known as nephrotic syndrome, in which there is excessive loss of protein in the urine. At the bench, we are using cell lines and animal models to understand these defects, and at the bedside, we are translating our findings by studying affected children. Dr. Gupta is supported by The Kidney Foundation of Canada and received a $100,000 research grant from the 2015–2017 Biomedical Research Program.
The Kidney Foundation of Canada supports research into all aspects of kidney health, disease, and treatment by providing Canadian researchers with more than $115 million in grants since the start of the Foundation over 50 years ago. Research offers hope to people living with kidney disease: for a cure, for improved treatments and understanding of their condition, for fewer side effectsofofCanada medications may needthey tomay take, fortoincreasing need take, for The Kidney Foundation supports theymedications increasing organ for discovering research all aspectsfor of kidney health, genetic organ into donation, discovering causes of donation, kidney disease, and disease, and treatment by providing Canadian genetic causes of kidney disease, and much much more. more. researchers with more than $115,000,000 in grants since the start of the Foundation over 50 years ago. Research offers hope to people living with kidney disease: for a cure, for improved treatments and understanding of their condition, for fewer side effects of
In 2016, The Kidney Foundation funded In 2016, The Kidney Foundation funded over $3 million in research, over $3 million in research, and leveraged over million through partnerships other and leveraged over $8 million through$8partnerships with otherwith funders funders across Canada and the US. across Canada and the US.
tOtal INvEstED IN REsEaRch IN 2016: $3,068,782 % aCross EaCh ThEME*:
*Themes of research:
Basic/Biomedical
Basic/Biomedical: research with the goal of understanding normal and abnormal human functioning, at the molecular, cellular, organ system and whole body levels.
Clinical
Health Systems and Services
Social, Cultural, Environmental & Population Health
66% 24% 8% 2%
Clinical: research with the goal of improving the diagnosis, and treatment (including rehabilitation and palliation), of disease and injury; improving the health and quality of life of individuals as they pass through normal life stages. Clinical research usually encompasses research on, or for the treatment of, patients. health services: research with the goal of improving the efficiency and effectiveness of health professionals and the health care system, through changes to practice and policy. social, Cultural, Environmental, and Population health: research with the goal of improving the health of the Canadian population, or of defined sub-populations, through a better understanding of the ways in which social, cultural, environmental, occupational and economic factors determine health status.
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The Kidney Community Newsletter SPRING 2017
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La Division du Québec de La Fondation canadienne du rein2017
THE QUEBEC BRANCH OF THE KIDNEY FOUNDATION OF CANADA 2300 René-Lévesque Blvd West Montreal, Quebec H3H 2R5boul. René-Lévesque Ouest 2300, Phone: (514) 938-4515 • 1 800 565-4515 (Québec) H3H 2R5 Fax: (514) 938-4757Montréal • infoquebec@kidney.ca Tél. : (514) 938-4515 • 1 800 565-4515 www.kidney.ca/quebec
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