Hélène Campbell recognized the Govenor General for Organ donation efforts.

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Cayse and Hélène pose for a picture after Outlive Yourself’s Ride Along the Rideau

 

On December 11 was awarded a Meritorious Service Medal by Govenor General David Johnston for her efforts to raise awareness for organ and tissue donation.

At age 20, Campbell was diagnosed with idiopathic pulmonary fibrosis a fatal lung disease which would require a double lung transplant. In response she founded Give2Live to raise awareness about organ donation, catching the attention of Justin Bieber, and appearing on the Ellen Show.

“I want people to know why I’m still here,” she told Global News said. “It’s because someone made that choice in a time that was really hard for them.

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Campbell also lent her time to Outlive Yourself when Cayse made a stop in his hometown of Ottawa, joining the Outlive yourself team and 40 people in riding along the Rideau River. Afterwards a total of about 80 people attended a rally where new donors were signed up and Campbell and others shared the stories about their journeys waiting for lifesaving transplants.

 

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ONTARIO SETS ORGAN AND TISSUE DONOR REGISTRATION RECORD IN Q3

Q2-Nearly-1000-Onts-Rgtr-Dly-Graphic-Nov1715More than 89,000 Ontarians registered their consent for organ and tissue donation between July 1, 2015 and September 30, 2015, setting a new record for registrations in one quarter. Since the province adopted an affirmative registry in 2008, Trillium Gift of Life Network has seen a significant increase to the registration rate, growing from 16 per cent to 28 per cent today. Currently, 3.34 million individuals in Ontario are registered organ and tissue donors. Every day 1,600 people in this province are waiting for a lifesaving call, making registering consent vital. When TGLN coordinators share with a family that their loved one wished to be a donor and had registered consent, families in the majority of cases fulfill their loved one’s wish to give the gift of life. Between July 1, 2015 and September 30, 2015 there were 255 organ transplants in Ontario. Registration rates vary widely across the province. Nearly 1,000 individuals register each day and over 90 per cent of those come through a ServiceOntario office, either in-person when renewing a driver’s license or health card, or by mail.

 

Registration data is available for 179 communities across the province at https://beadonor.ca/scoreboard

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Fifty physicians to champion organ and tissue donation in Ontario hospitals

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The Gift of Life medal is presented to families in tribute of those who passed and gave the gift of life through organ and tissue donation (Photo credit: Trillium Gift of Life Network)

 

TORONTO, Dec. 8, 2015 – Hospital Donation Physicians are now working to support organ and tissue donation within Ontario hospitals, following closely the example set by successful international programs. Physician engagement is credited with improving donation rates by encouraging a culture of donation within hospitals. These specially trained physicians complement existing supports available through Trillium Gift of Life Network (TGLN).

“The opportunity for organ donation is rare, as less than three per cent of hospital deaths allow for organ donation,” explains Ronnie Gavsie, President and CEO of TGLN. “Hospital Donation Physicians are available to staff to provide educational support and share expertise, and to ensure that no family misses the opportunity to create a lifesaving legacy for a loved one by choosing donation.”

With over 1,600 Ontarians waiting for a lifesaving transplant, TGLN is committed to supporting hospitals as they incorporate donation into quality end-of-life care.

This is the second phase of Ontario’s plan to create an integrated network of donation physicians, both within and external to the hospital. In December 2014, TGLN appointed five Regional Medical Leads responsible for supporting hospital donation performance within a specific region of Ontario.

Dr. Sonny Dhanani, TGLN’s Chief Medical Officer of Donation says: “Since we implemented the donation physician model in Ontario, we’ve seen an increase in the number of potential donors referred to TGLN. This means there are fewer missed opportunities for donation, and more families are being given the chance to make a lifesaving choice. This is improving end-of-life care for Ontarians.”

Dr. Eric Hoskins, Ontario Minister of Health and Long-Term Care says: “Organ and tissue donation is incredibly important. One donor can save up to eight lives and help 75 more by donating tissue.  I thank the physicians who are taking on the critical task of working with their colleagues and patient families to help increase the number of donations. This new initiative has the potential to save countless lives.”

See below for the list of Ontario hospitals with Hospital Donation Physicians.

Quick facts

Ontario hospitals with Hospital Donation Physicians:

Bluewater Health
Brockville General Hospital
Cambridge Memorial Hospital
Chatham-Kent Health Alliance
Children’s Hospital of Eastern Ontario
Cornwall Community Hospital
Georgian Bay General Hospital
Grand River Hospital
Guelph General Hospital
Halton Healthcare
Hamilton Health Sciences
Health Sciences North
Hôpital Montfort
Humber River Hospital
Huron Perth Healthcare Alliance
Kingston General Hospital
Lakeridge Health
London Health Sciences Centre
Mackenzie Health
Markham Stouffville Hospital
Mount Sinai Hospital
Muskoka Algonquin Healthcare
Niagara Health System
North Bay Regional Health Centre
North York General Hospital

Orillia Soldiers’ Memorial Hospital
Pembroke Regional Hospital
Peterborough Regional Health Centre
Queensway Carleton Hospital
Quinte Healthcare Corporation
Rouge Valley Health System
Royal Victoria Hospital
Sault Area Hospital
The Scarborough Hospital
Sick Kids
Southlake Regional Health Centre
St. Joseph’s Health Centre
St. Michael’s Hospital
St. Joseph’s Healthcare Hamilton
St. Mary’s General Hospital
St. Thomas Elgin General Hospital
Sunnybrook Health Sciences Centre
The Ottawa Hospital
Thunder Bay Regional Health Sciences Centre
Toronto East General Hospital
Trillium Health Partners
University Health Network
University of Ottawa Heart Institute
William Osler Health System
Windsor Regional Hospital

 

 

 

 

 

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1000 Lives: Teaming up with Ivey to make an Impact

Ivey MBA Students spent Aug 2nd signing up new donors in downtown London.
Ivey MBA Students spent Aug 2nd signing up new donors in downtown London.

 

The MBA program at the Ivey School of Business hosts a twice annual Impact day where students are given a day off of school to give back to the local community. Last week on Wednesday August 5th, this year’s MBA class participated in the first of two impact days where students had a chance to make an impact on various social responsibility initiatives within the community. Initiatives for this year included case competitions including working with Reforest London on a tree planting initiative, determining how to measure social impact ROI with Verge Capital and working with socially responsible enterprises with SoJo and Klink Coffee. Additionally 16 MBA’s from this years program took to the streets of downtown London to sign up new Donors for the day.

Outlive Yourself Team Member Robert Antolin, Matthew’s brother, is currently enrolled at Ivey completing his MBA when he was approached by Ivey Impact Day’s student organizers about helping to spearhead an initiative around organ donation for Impact day. Teaming up with Rob to champion the initiative were current MBA students Sarah Brown and Courtney Skene-Hamilton.

Sarah had an especially close connection to organ donation. Her father found out in late 2010 that he would need a liver transplant and the family thought that he would have to wait one to two years to receive it.  He ended up moving up the list quickly with his wait only being six months. When her dad met his surgeon he found out there was an additional connection to the family. Sarah’s grandma was the 4th person in Canada to receive a liver transplant in the 1980’s. Her father surgeon was doing his residency at the time and was part of the operating team on Sarah’s grandma. He remembered the procedure so well because it was so new and ground-breaking at the time. Sarah also currently has a friend waiting for a kidney.

 

The day started with discussions about our goal and basic logistics before the team set out the goal of helping to save 1,000 lives by signing up 125 new organ donors during the day. After a morning briefing in which a few members discussed their connections to organ donation and key talking points for getting people to sign up a team of 16 students headed to downtown London to canvas the city.

While most students had little experience in talking about organ donation the day proved to be a huge success with 143 people taking the time to sign up via the school’s BeADonor page. Those 143 new sign ups represent the chance to save 1144 lives with life saving transplants and improve 10,725 other through the transplant of skin and non vital organs. A big thanks goes out to the whole Ivey Team, the Trillium Gift of Life Network, the Canadian Transplant Association and all of the local Londoners who took the time to sign up.

“I think it is important to take time to find ways to contribute to the community.  At our classes first Ivey Impact Day I had the opportunity to contribute to the organ donor awareness initiative.” said Skene-Hamilton “Through this process I was able to learn more about the importance of organ donation and the widespread impact it can have.  Seeing the impact that organ donation has had on the families and lives of our classmates inspired a number of our classmates to take part in this initiative and allowed us to reach a large portion of the London community and exceed our organ donor sign-up goals.””

 

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RECORD NUMBER OF ONTARIO FAMILIES SAVED LIVES IN 2014/15

Trillium Gift of Life Network reports an increase in organ donors, transplants and registrations

 

In 2014/15, more Ontario families than ever were provided with the opportunity to save and enhance lives through organ and tissue donation by giving consent for their loved one to be a donor at the end of life. Trillium Gift of Life Network coordinators were involved in over 3,000 end-of-life conversations between April 1, 2014 and March 31, 2015, providing information and support to help the family of potential donors make a lifesaving choice.

“Those who register to be an organ and tissue donor have my greatest respect. I was very pleased to hear more Ontarians than ever before registered this year through www.BeADonor.ca.” said Dr. Eric Hoskins, Ontario Minister of Health and Long Term Care, “I am proud of these steps forward but there is still more work to be done. Have the conversation, register your consent, save a life.”
Along with generous living donors, in 2014/15 the families of deceased donors made it possible to save the lives of over 1200 transplant recipients in Ontario and enhance the lives of thousands more through tissue donation.

This information is part of new data comprising the complete picture of donation and transplant in the province, available at www.giftoflife.on.ca/statistics.

Highlights include:

  • 271 deceased organ donors helped to save the lives of 960 transplant recipients.
  • 278 living organ donors helped to save the lives of a further 213 kidney recipients and

    65 liver recipients.

  • 1953 tissue donors enhanced the lives of thousands of Ontarians through the gift of

    eyes, skin, heart valves and bone.

  • The provincial registration rate has reached 27 percent of the eligible population, which

    means 3.2 million Ontarians are now registered donors.

  • Hospitals in Ontario achieved a Routine Notification Rate of 94 percent, up from 93

    percent in 2013/14. These rates demonstrate that in the vast majority of cases, hospitals

    notified TGLN of potential donors.

  • The average conversion rate, how often potential organ donors go on to save lives through donation, was 55 percent, up from 52 percent in 2013/14.

For Ronnie Gavsie, President and CEO, Trillium Gift of Life Network, this represents a step in the right direction, but is far from the end game stating “Thanks to the support of our partners, Ontario continues to be a leader in donation and transplant in Canada. Unfortunately, too many still wait too long. This knowledge fuels us to do more, achieve more and miss no opportunity.”

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The Globe and Mail is helping to raise the conversation around organ donation

Dr. Jennifer Bender was an endurance athlete and an organ donation advocate. Source: GlobeandMail.com

Three in four Canadians claim to be in favour of organ donation, but only 25% of us have registered our consent as organ donors. The process only takes a few minutes of your time, but still come who claim to support it still haven’t found the few minutes to do so in their busy lives.This has been a banner year for organ donation in the news. With stories being published on Eugene Melnyk, the Wagner twins, and friend of Outlive Yourself Dave Allingham doing his part to raise awareness through his work with the Heart and Stroke Foundation. As one of Canada’s leading National newspapers the Globe and Mail has done a fantastic job lately about sharing stories and hopefully starting more conversation around the process.

In May, an appeal was made on behalf of Eugene Melnyk which helped to attract over 500 people willing to donate part of their livers. Melnyk’s plea was successful but also brought up some difficult questions about organ donation. How to manage public solicitations in the age of social media? A person can now leverage their status, or following to solicit help from a large network of people, but does it give them an unfair advantage over those without the same advantages or background? In a June 28th article in the Globe and Mail journalist Wency Leung investigated these questions.

 

On June 26th the Globe’s Madeline Smith shared the story of Dr. Jennifer Bender. Dr. Bender passed away unexpectedly on June 19, at the age of 41. She was an anesthesiologist and endurance athlete and passionate about organ donation, having spoken about the issue with the Globe and Mail in April 2014

In April, 2014, Dr. Jennifer Bender told The Globe and Mail about watching preparations for a potential organ donor abruptly stop when the family members involved decided against the donation. As an anesthesiologist, she said it was difficult to see the potentially life-saving process come to a halt.

 

“There is a bit of a sense of waste,” Dr. Bender told The Globe at the time. “To take that little bit of hope and then just turn it all off, and see it wash away, is a bit sad

If each news story that appeared in Canadian media encouraged only 10 people to sign up, a single article would have the the potential to help 5% of the nearly 1,600 Canadians who are added to organ wait lists yearly. Considering your own mortality can be a difficult proposition. The hope is that stories like the ones recently highlighted by the Globe and Mail and other Canadian publications and broadcasts help encourage people to sign up. One person can save up to eight lives. Who wouldn’t want to Outlive Yourself?

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Melnyk’s plea for a living donor was successful, but what about normal people waiting for a transplant?

 

Ottawa Senators owner Eugene Melnyk recently came forward with a public plea for a living liver donor. He needed a life saving transplant to treat liver complications that started in January of this year. Melnyk’s public profile has resulted in a very encouraging response drawing over 500 potential donors to the cause.

Some ethical considerations have been raised regarding how Eugene’s prominent status was used as a vehicle to spread awareness. While most people do not have the reach that he does, if the general public understood the stories of individuals in positions of struggle similar to him, would they be more likely to step forward and help?

The overwhelming consensus is that it is positive for the organ donation, bringing much needed attention to the cause. This also serves as a very important reminder that much work is to be done with regards to raising the profile of organ donation in Canada. According to James Breckenridge, the president of the Canadian Transplant Society, only 15 out of every million Canadians are signed up as organ donors with waitlists for organ donation sitting at over 1500 people.

Furthermore, Dr. Atul Humar who is the director of the University Health Network Multi-organ Transplant Program at Toronto General Hospital stated that he was pleased at the attention garnered from this case  ” It raises awareness for organ donation and it frees up a spot on the deceased donor list, essentially saving two lives”.

Since the time of Melnyk’s public plea, he has successfully undergone surgery and is currently in recovery. Not only has this case stimulated healthy debate, it has also been beneficial by bringing to light the possibilities of living donors. While liver transplants involve a major surgery, donors can save a life while expecting to regenerate 90% of their liver within three months.

 

 

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The Organ Donation movement loses a champion

 

Barbara Turnbull in a newsroom photo taken in 2012. SOURCE:LUCAS OLENIUK / TORONTO STAR

 

On Sunday afternoon Toronto Star journalist Barbara Turnbull passed away at the age of 50 due to complication from pneumonia. In 1983, she was shot in the next, resulting in a severed spine resulting in her becoming a quadriplegic in 1983. By 1990, she graduated from Arizona State University as class valedictorian, joining the Toronto Star and becoming a champion of disability rights and organ donation.

 

Barbara was one of the journalists who covered Outlive Yourself during Cayse’s ride sharing the story about his ride across Canada, helping to spread the word about his journey as well promoting an event we held at the Centre for Social Innovation when he reached Toronto. Her efforts have been appreciated within the organ donation community where she helped ensure that information regarding donation rates and events such as the Transplant Games found an audience among the Toronto Star’s in print and online.

 

Cayse Toronto Star
Outlive Yourself in the Toronto Star

 

The organ donation community has lost a champion within the national media. But more importantly the community at large has lost a daughter, a champion of two important causes and a friend. Please keep Barbara, her family and friends in your thoughts and prayers.

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Kidney Transplant Summit recommends presumed consent legislation to increase organ donation in BC.

Kidney Transplant Summit recommends presumed consent legislation

BURNABY, BC, May 6, 2015 – The Jury at the first-ever BC Kidney Transplant Consensus Summit hosted by The Kidney Foundation has recommended that British Columbia adopt presumed consent legislation, with the appropriate safeguards in place, to increase the number of kidney transplants in this province.

The Jury, chaired by the Hon. Wally Oppal QC, also considered but rejected the idea of offering financial incentives to organ donors. Living organ donors are currently reimbursed for expenses incurred in donating an organ, but not for the kidney itself. “As a society, we do not condone the sale of organs,” said Oppal.

Jurors stated that Asian, South Asian, and Aboriginal communities in BC are over-represented in kidney disease numbers, and under-represented in kidney transplants. They flagged this as an area requiring more culturally appropriate and community driven research to identify and solve cultural and systemic barriers.

Set up court room style, the eight-member Jury heard experts support kidney transplantation as the most cost-effective option for BC dialysis patients and then weighed the evidence for and against three controversial topics: Should British Columbians automatically be considered organ donors when they die, or not?  Should people be paid to be organ donors or to register as organ donors? Is it a systemic or a cultural barrier that results in lower organ donation in Aboriginal, Asian and South Asian communities?

“Kidney disease is serious and until there is a cure, the best available therapy for a dialysis patient is a kidney transplant,” says Dr. David Landsberg, Medical Director of the Kidney Transplant Program for BC Transplant.  “Unfortunately the demand for kidney transplants far exceeds the available supply. Right now there are 361 British Columbians on the official waitlist for a transplant, and many of them will die before they get one.”

While 95% of British Columbians say they support organ donation, only 19% are actually registered on BC’s official organ donor registry.

“Kidney patients are why we hosted this Summit,” says Karen Philp, Executive Director, The Kidney Foundation ofCanada, BC & Yukon Branch.  “Far too many people die from this serious disease and the rest of us in the kidney community need to speak out and change this story”.

The Kidney Transplant Summit profiled the best available evidence to support recommendations made by 2,500 British Columbians on how The Kidney Foundation of Canada could achieve its commitment to increase kidney transplants and organ donor registration by 50% by 2019.

“I commend The Kidney Foundation on the work that they do to improve the lives of those living with kidney disease and their work with organ transplantation,” says MLA for Surrey-Tynehead Amrik Virk.  “Being an organ donor is offering a piece of yourself to save someone’s life – a huge positive for everyone involved, and something I hope more British Columbians sign up for.”

Over 361 Kidney patients traveled to the Kidney Transplant Summit from all parts of the province along with family members and caregivers, to speak out on the urgency of the need for more organ donor registration and kidney transplants.

“I was overcome with emotion at the Summit,” says William Stewart, who is waiting for a kidney.  “It was so inspiring to see hundreds of people from all over the province coming together to speak out for kidney patients on dialysis like me.  For the first time in a long time I felt hope for a better future for me, my wife and my kids.”

About The Kidney Foundation of Canada, BC & Yukon Branch
The Kidney Foundation of Canada, BC & Yukon Branch exists to help prevent kidney disease or delay the onset.  We provide support services to patients who have chronic disease and promote organ donation to increase kidney transplant rates.  We are here to help each and every kidney patient until there is a cure.

SOURCE The Kidney Foundation of Canada, BC & Yukon

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An open letter to donor families from the daughter of a donor

Alyshia Lynn is many things; A health care communicator, a blogger, a synchronized skater and a wine lover. On top of the many hats she wears, she is also a passionate advocate for Organ Donation.  Many organ donation advocates are born when they or someone in their immediate family receives an organ transplant. Before that time, organ donation is not something spoken about often by many people. Discussing your own mortality is a difficult thing. Alyshia’s story comes from a different perspective; she speaks from the perspective of being part of a Donor family.

 

Alyshia with her father (Source: Unfiltered Discourse)

Alyshia recently published an open letter to donor families on her personal blog.  She lost her dad at age 24, as the result of a single vehicle car accident in 2010. As his eldest daughter she was appointed his substitute decision maker. She learned that her dad suffered a brain injury and would never awake

I remember the day so vividly: the fear, the heartbreak and the devastation were almost too much to bear. I also remember another feeling: comfort. My Dad met the criteria for organ donation. We were fortunate that our father had been very vocal about his wishes – should he ever be eligible to donate, he wanted to do so.

Through his gift, one man received a double-lung transplant; two men each received a kidney, freeing them from the rigorous routine of dialysis; and two more received the gift of sight through his corneas.

In our darkest moments, the thought that something positive could come out of our heartbreaking tragedy provided immeasurable comfort. While our family was getting the worst news of our lives, five other families were getting the best phone call of theirs – their loved ones were getting a second chance.

Organ donation has an impact far beyond the person receiving the transplant. It affects families, communities and as Alyshia highlights even the donor’s family.  Alyshia’s father’s organs went on to save three lives.   She finds peace in knowing how it feels to have a family member who is a hero. If you have a chance we would highly recommend you read her letter.

You can also read more of Alyshia’s work on her blog, Unfiltered Discourse https://unfiltereddiscourse.wordpress.com/ or follower her on twitter  https://twitter.com/alyshia_lynn

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