The kidney community newsletter | Fall 2016

FALL 2016

The Kidney Foundation of Canada – Quebec Branch

newsletter

The Quebec Branch gets a new president page 2

The 2016 Kidney Walk: an unparalleled success page 3

Marie-Josée Lord and the Orchestre Métropolitain in concert for the Foundation page 7

The Kidney Foundation’s summer camp in Saint-Alphonse-Rodriguez: a week in the great outdoors for young dialysis patients and transplant recipients page 8

ORGAN DONATION

Heartening organ donation statistics page 10

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 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.

PRESIDENT’S MESSAGE

A NEW PRESIDENT FOR THE QUEBEC BRANCH On May 1, 2016, Sylvie Charbonneau became the new president of the Quebec Branch of The Kidney Foundation of Canada. She replaces Simon Brodeur, who held the title for two years.

Sylvie held a number of volunteer positions within the Foundation, including as a member of the executive committee, serving as VicePresident of Financial Development from 2013 to 2016. She also served on other committees including the Montreal Kidney Walk’s Organizing Committee, where she served as chair in 2014 and 2015, and the committee in charge of last year’s benefit concert.

Sylvie has a special connection to the kidney disease cause: in 2012, she gave a kidney to her son Benoit, who suffered from a degenerative kidney condition.

Sylvie and her family took part in the Télé-Québec TV show Format familial on which she shared her story.

She dreams of a better future where dialysis has become increasingly unnecessary because researchers will have found a permanent way to fight and even cure renal insufficiency.

Sylvie is a dedicated and passionate woman who cares deeply about the kidney disease cause. She will serve as Quebec Branch President for the next two years.

The Foundation wishes her an excellent presidency.

“ This whole episode has made me realize that things we sometimes take for granted are anything but sure things. But more than that, I discovered the importance of medical research and support for patients as they struggle through such a difficult time.

Conducting research requires substantial funding that is all too often lacking. Fundraising activities help raise money for research, patients and their loved ones. In practical terms, the money is used to change lives for the better. Without the research carried out over the past 50 years, my son would not be alive today”

DONATING THROUGH YOUR WILL: HAVE YOU CONSIDERED IT? A bequest to The Kidney Foundation of Canada is a gift that will have a lasting impact and bear witness to the values we cherish. | 2 |

The Kidney Community Newsletter FALL 2016

To find out how to make your own bequest, please contact Martin Munger at martin.munger@rein.ca or 1 800-565-4515 / 514-938-4515, ext. 231.

REVIEW OF OUR EVENTS & ACTIVITIES

THE 2016 KIDNEY WALK WAS AN UNPARALLELED SUCCESS WITH OVER 4,000 PEOPLE SUPPORTING THE KIDNEY DISEASE CAUSE The Quebec Branch of The Kidney Foundation of Canada would like to thank all the participants and local and national partners, as well as all donors, who supported the 23 Kidney Walk events and the Tour de rein cycling event this year.

The 2016 Kidney Walk held last May and June raised over $575,000, which will enable thousands of people with kidney disease or awaiting

a transplant in Quebec to hope for better days in the knowledge that research and patient programs and services are well funded.

The Foundation would also like to thank all the Honorary Chairs and volunteers who worked tirelessly to make the event such a huge success.

Without their contribution, the Kidney Walk would not have been possible.

See you next year!

The Kidney Community Newsletter FALL 2016

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REVIEW OF OUR EVENTS & ACTIVITIES

THE QUEBEC CITY CHAPTER GOLF TOURNAMENT: A HOLE-IN-ONE!

THE ORGANIZING COMMITTEE (LEFT TO RIGHT): DR. SIMON DESMEULES NEPHROLOGIST, ANDRÉ VILLENEUVE PHARMACIST, FERNAND DUFRESNE, PRESIDENT, PRÉVERCO INC. AND CHARLES DEBLOIS, GROUPE DEBLOIS ET TREMBLAY, RBC DOMINION.

The 21st edition of the Quebec City Chapter Golf Tournament held on June 13, 2016, at Le Montmorency golf club netted $42,390.

We salute and extend our heartfelt thanks to all the golfers and sponsors for their immense generosity. Their support will help the Foundation improve quality of life for people living with kidney disease.

THE WAITER FOR AN EVENING EVENT IN LA MAURICIE RAISES $900 FOR THE FOUNDATION The “Waiter for an Evening” event was held on September 1, 2016, at Bistro La Sangria in Trois-Rivières. Thanks to the 40 or so people who came out, the event raised $900 for the Foundation.

If you would like to organize your own event to benefit the Foundation, give us a call at 514-938-4515–we’ll gladly help you get your project off the ground.

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The Kidney Community Newsletter FALL 2016

REVIEW OF OUR EVENTS & ACTIVITIES

THE MONTREAL KIDNEY GOLF CLASSIC RAISES $210,000

UPCOMING ACTIVITIES

THE FOUNDATION WILL BE TAKING PART IN THE NEXT SCOTIABANK CHARITY CHALLENGE On September 19, 2016, the Foundation held its annual golf tournament at the Royal Montreal Golf Club, raising $210,000 for the cause.

Co-chaired by Luciano D’Ignazio, CPA, CA, partner at Schwartz Levitsky Feldman LLP, and Honorary Chair Tony Loffreda, CPA (Illinois), Regional Vice-President, Commercial Financial Services for Western Quebec, RBC Royal Bank, the Kidney Golf Classic has become one of the Foundation’s most prestigious fundraisers.

We are infinitely grateful to the Organizing Committee and the countless volunteers for their dedication, as well as to the golfers and cherished sponsors who have contributed to the event’s continued success. As always, Catherine Verdon-Diamond (host of City TV’s morning show Breakfast Television) was an outstanding emcee. A big thank-you to the sponsors and corporate foursomes who helped make the event a success.

The Quebec Branch of The Kidney Foundation of Canada will be taking part in the Scotiabank Charity Challenge on April 22 and 23, 2017, at Jean-Drapeau Park in Montreal.

The event will include a number of races.

You can choose between the Montreal kids’ race and the 5K, 10K and 21K races. In 2016, the 66 participating charities raised a total of $1.2 million.

Join us for the two days of festivities and run alongside The Kidney Foundation of Canada.

We look forward to seeing you there!

MANY THANKS TO OUR KEY SPONSORS

The Chelminski Family Foundation

For more information, contact Patrick Marais at 514-938-4515, ext. 233, or patrick.marais@rein.ca

The Kidney Community Newsletter FALL 2016

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UPCOMING ACTIVITIES

PHASE 2 OF THE DOOR-TO-DOOR CAMPAIGN WILL BE STARTING SOON

THE 2016 JEAN-JACQUES BÉGIN BENEFIT DINNER IS SET FOR NOVEMBER 4, 2016 The Jean-Jacques Bégin Benefit Dinner benefiting the Eastern Townships Chapter of The Kidney Foundation of Canada will take place on November 4, 2016, at the Sherbrooke Golf Club. Now in its 22nd year, this annual event is named in honour of Jean-Jacques Bégin, a man who was well known in the region and was a long-time, active Foundation volunteer. This event unlike any other in the region—an oyster dinner with all-youcan-eat buffet—is a delightful opportunity to support the kidney disease cause.

Phase 2 of the door-to-door campaign will be held from October 29 to November 20, 2016, in the following cities: • Sept-Îles, Lennoxville and Coaticook (Eastern Townships) • St-Elzéar, St-Joseph and Ste-Marie (Beauce) • All municipalities of the greater Quebec City area and the North Shore During this period, volunteers from The Kidney Foundation of Canada will take to the streets in these cities to collect donations that the Foundation will use to deliver patient services and fund kidney disease research.

Over the past year, the Foundation has delivered many services to patients in Quebec: · Over $60,000 in emergency funding was provided to hundreds of people in need. · Eleven study grants were awarded as part of the patient scholarship program. · Forty children attended the free summer camp for young transplant recipients and dialysis patients last August. · Over 1,800 Living with Kidney Disease patient manuals, published in six languages, were distributed to patients free of charge. · A free pager service is also available to patients awaiting a transplant, as are a range of other services aimed directly at patients and their loved ones.

Did you know?

Every year, the Quebec Branch earmarks nearly $1 million for kidney disease research and national programs.

Thank you for giving people a new lease on life!

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This year’s event will be presided over by Honorary Chair Marie-Claude Bibeau, MP for Compton–Stanstead and Minister of International Development and La Francophonie, and Dr. François-Xavier Caillé, emergency room physician at CHUS. You may already purchase tickets online or by contacting Josée Parenteau at 819-348-0964 or fondationreinestrie@gmail.com

AT THE LAUNCH OF THE 22ND JEAN-JACQUES BÉGIN BENEFIT DINNER (FROM LEFT TO RIGHT): JOSÉE PARENTEAU, PRESIDENT OF THE EASTERN TOWNSHIPS CHAPTER AND KIDNEY TRANSPLANT RECIPIENT, THE HONOURABLE MARIE-CLAUDE BIBEAU, MEMBER OF PARLIAMENT FOR COMPTON-STANSTEAD AND MINISTER OF INTERNATIONAL DEVELOPMENT AND LA FRANCOPHONIE, AND DR. FRANÇOIS-XAVIER CAILLÉ, EMERGENCY ROOM PHYSICIAN AND KIDNEY PATIENT.

Mauricie/Centre-du-Québec Chapter

A BENEFIT SPAGHETTI LUNCH FOR THE FOUNDATION IN TROIS-RIVIÈRES A spaghetti lunch will be held starting at 11:30 a.m. on October 16, 2016, at Salle la Franciade, 100 De la Mairie Street in Trois-Rivières. Tickets are $15 per person.

For more information and to reserve your seats, contact René Gélinas at 819-699-0186.

The Kidney Community Newsletter FALL 2016

UPCOMING ACTIVITIES

MARIE-JOSÉE LORD AND THE ORCHESTRE MÉTROPOLITAIN IN CONCERT TO BENEFIT THE KIDNEY FOUNDATION OF CANADA

We are pleased to invite you to the 2nd edition of the New Lease on Life Concert on November 11, 2016, at the Maison symphonique de Montréal. A VIP-only cocktail buffet will be served starting at 6:30 p.m. and the concert will begin at 8 p.m.

This second edition will shine the spotlight on world-renowned soprano Marie-Josée Lord, who will deliver her rendition of some popular standards, from Carmen to West Side Story. Ms. Lord will be accompanied by the Orchestre Métropolitain under the direction of Dina Gilbert.

Your participation will help the Quebec Branch of The Kidney Foundation of Canada raise money to fund medical research, deliver patient services, advocate for access to quality healthcare for all Quebecers and promote organ donation.

A one-of-a-kind event you will not want to miss!

To buy tickets or find out about partnership possibilities, visit kidney.ca/concert or contact Patrick Marais, Director of Financial Development, at 514-938-4515, ext. 233, or patrick.marais@rein.ca

About the Orchestre Métropolitain Founded in 1981, the Orchestre Métropolitain has been conducted by Maestro Yannick Nézet-Séguin for over 15 years and has unrelentingly pursued its mission of making quality classical music accessible to all and performing concerts for as wide an audience as possible. Made up of home-grown musicians, most of whom trained in Quebec, the Orchestre Métropolitain is a world-class organization dedicated to the democratization of classical music from near and far for the benefit of the entire Montreal-area community and its various cultural organizations.

MARIE-JOSÉE LORD

About Marie-Josée Lord Haitian-born Marie-Josée Lord grew up in Quebec. Trained as a pianist and violinist, Marie-Josée was 22 when she discovered and decided to focus on classical singing. The richness of her soprano voice and her unique timbre, together with hard work, led her toward a career as an opera singer starting in 2003 with the Opéra de Québec in its performance of Puccini’s Turandot, in which she played the role of Liù.

About Dina Gilbert Known for her energy, precision and versatility, Dina Gilbert brings her passion to the great symphonic repertoire while leaving plenty DINA GILBERT of room for musical creativity. The Beauce native is the founder and artistic director of Ensemble Arkea, a Montreal-based chamber music orchestra that delivers innovative arrangements of orchestral music.

FROM CARMEN TO WEST SIDE STORY New Lease on Life Benefit Concert for The Kidney Foundation of Canada

Guest MARIE-JOS Sopr

with the Orchestre métropolitain

FRIDAY, NOVEMBER 11 8 p.m.

Under the d DINA GI

Maison symphonique

The Kidney Community Newsletter FALL 2016

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PATIENT SERVICES

kidneycommunitykitchen.ca :

A PRACTICAL TOOL FOR PEOPLE WITH RENAL INSUFFICIENCY Most people living with renal insufficiency feel that managing their diet is a full-time job. Kidney Community Kitchen to the rescue! This website was launched by the Foundation with the specific goal of easing the burden placed on kidney patients by their dietary needs.

Free and easy to use, the Kidney Community Kitchen website helps people plan meals and keep track of the quantities of key nutrients they eat.

ANOTHER SUCCESS FOR THE KIDS’ SUMMER CAMP The Kids’ Summer Camp run by the Quebec Branch of The Kidney Foundation of Canada took place from August 9 to 14, 2016. This year, 40 young dialysis patients and transplant recipients took part. The camp allows kids with kidney disease and those who’ve had a kidney transplant to have some fun in the summer sun in a setting created with their special needs in mind. It also provides parents who need it with a week of respite.

Thanks to a medical team from the Montreal Children’s Hospital and Sainte-Justine Hospital, children got to enjoy a week of fun in the great outdoors while continuing their treatments. The camp is also an opportunity for children to swap stories with other kids with the same condition and make new and special friendships. Many thanks to everyone who supports the Foundation’s Kids’ Camp!

A big thank-you to our sponsors!

Fédération Italienne St-Joseph | 8 |

The Kidney Community Newsletter FALL 2016

Some of the site’s benefits at a glance: • Kidney-friendly, dietitian-approved recipes • A drag-and-drop meal planner to calculate quantities of key nutrients consumed • Weekly meal plans with a drag-and-drop function, created by dietitians • The opportunity to suggest recipes to improve the site and have them reviewed by dietitians • A place to ask dietitians about nutrition • Forums for sharing experiences, ideas and recipes • A substitute calculator, useful for people who have to follow a specific diet for both diabetes and renal insufficiency • Tips, an FAQ section and other information about diet and the kidneys

ORGAN DONATION

TWO BROTHERS AND A SISTER: A FAMILY CONFRONTS KIDNEY DISEASE TOGETHER Serge Pisapia suffered from kidney disease and was on dialysis; he was also on the kidney transplant waiting list. His brother Jean-Marc, who found the waiting times extremely long, decided to give Serge one of his kidneys. But tests revealed that Jean-Marc had a small kidney stone, which meant he couldn’t donate a kidney. So their sister Christine decided to give one of her kidneys to Serge, who by then had spent two years on dialysis.

Watch the 10-minute video of the Pisapia’s story by visiting www.donatingakidney.ca.

KIDNEY DISEASE RESEARCH

REDUCING THE RISK OF KIDNEY TRANSPLANT REJECTION AND LOSS Dr. Ruth Sapir-Pichhadze is a new investigator at the McGill University Health Centre and Assistant Professor, Division of Nephrology and Multi-Organ Transplant Program.

She completed subspecialty training in nephrology and kidney transplantation at the University of Toronto. She also completed the Eliot Phillipson Clinician Scientist Program and the Royal College of Physicians and Surgeons of Canada Clinician Investigator Program, where she undertook a PhD in Clinical Epidemiology and Health Care Research.

Her PhD focused on the pathogenesis, diagnosis and prognosis of antibody-mediated injury secondary to anti-HLA1 antibodies in kidney transplant recipients and candidates.

Rejection is the leading cause of kidney transplant loss. Antibody-mediated rejection occurs when kidney transplant recipients develop antibodies toward the donor. Donor-specific antibodies emerge as a consequence of structural incompatibility between donor-recipient human leukocyte antigens.

The objective of Dr. Sapir-Pichhadze’s research is to identify strategies to minimize such mismatches between donors and recipients and thereby diminish the risk of rejection and kidney transplant loss.

1. HLA: human leukocyte antigens

Dr. Ruth Sapir-Pichhadze received two grants from The Kidney Foundation of Canada: · A 2015–2018 KRESCENT New Investigator Award worth $210,000 · A 2015–2016 KRESCENT infrastructure support award worth $25,000

The Kidney Community Newsletter FALL 2016

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ORGAN DONATION

HEARTENING ORGAN DONATION STATISTICS

On September 9, 2016, Canadian Blood Services, in conjunction with the Canadian Organ Donation and Transplant Network, released a report detailing a decade’s worth of information on national organ donation and transplantation. The Organ Donation and Transplantation in Canada: System Progress Report 2006–2015 includes the most current Canadian statistics on deceased and living donation and transplantation performance. While the figures contained in the report are cause for hope, much work remains to be done to eliminate the need for a transplant waiting list.

The national transplant rate (with organs from living and deceased donors) rose from 63.7 to 71.4 transplants per million inhabitants. The actual number of transplants increased 23% from 2,074 to 2,559. Despite these modest gains, Canada still lacks donor organs. Currently, over 4,600 patients are awaiting a transplant.

Transplants: good for patients, good for governments It’s no secret that transplants constitute the best treatment for patients living with endstage renal failure. Compared with dialysis, a transplant can at least double a patient’s life expectancy.

It’s also the most cost-effective option for these patients. As of the second year after the transplant, the healthcare system saves between $33,000 and $84,000 per transplant recipient for every year of dialysis.

If you wish to donate your organs, you can indicate your consent in a number of ways.

1. The organ donation consent registry managed by RAMQ, Quebec’s health insurance board Quebecers can formalize their consent by registering with RAMQ’s Organ and Tissue Donation Consent Registry.

Along with the RAMQ health insurance card renewal form, Quebecers receive a second form enabling them to signify their consent to organ donation. New arrivals to the province receive their form along with their RAMQ registration. You may also contact RAMQ directly at any time to request a form, particularly if you wish to register your consent the next time you renew your RAMQ card.

RAMQ is in charge of receiving completed forms. They are then compiled and entered in the registry; the process is completely confidential.

Only Transplant-Québec and Héma-Québec have access to the information in the registry.

When the time comes, these organizations are able to check, on request from a physician or another authorized person, whether a person had consented to donate his or her organs and tissues once deceased.

2. The sticker on the back of your health insurance card You may also consent to donating your organs and tissues by signing the sticker and placing it on the back of your RAMQ card.

3. The organ donation consent registry managed by the Chambre des notaires du Québec Drafting a will or mandate in anticipation of incapacity is the perfect occasion to consider donating organs and tissues.

If you consent to do so after discussing the matter freely with your notary, he or she will note your consent in your will or mandate in anticipation of incapacity. The consent will then be added to a registry set up for just such a purpose by the Chambre des notaires du Québec.

In the event of your demise, authorized staff will be able to check whether you had consented to donate your organs and tissues. The confidentiality of the information is maintained at all times.

DID YOU KNOW? Over 90% of Canadians approve of organ donation, but only 51% have decided to donate their own organs upon their death.

When you donate your organs and tissues upon your death, you can save up to eight lives and give 15 other people their health back.

HOW TO HELP To donate, volunteer or obtain more information, contact us at: 1-800-565-4515 · 514-938-4515 – infoquebec@kidney.ca

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The Kidney Community Newsletter FALL 2016