When Robert first came to the CLF 12 years ago, he saw an opportunity to learn about his own liver disease while helping others cope with theirs. “At the time, the tainted blood scandal was a hot issue and lots of people were just discovering that they had hepatitis C,” recalls Robert. “The CLF was considered to be the ‘go-to’ resource in B.C. so we had patients, caregivers, doctors and nurses calling us for information.”
To respond to the need, Robert helped establish a Help Line so people could ask their questions and get answers anonymously if desired. “I had a nursing background which helped in explaining how hepatitis viruses are transmitted, what blood tests were needed for diagnosis and so on. Over time, we developed scripts and Q&As so whoever was answering the Help Line would be providing consistent information.”
The next step was setting up an Information Resource Centre with videos, pamphlets and books that visitors could use onsite or sign out. “Our goal was to empower people to help themselves,” explains Robert. “Whether it was finding a doctor, understanding blood work or applying for compensation, we wanted to give them the information and support they needed to manage their own illness.”
Today, Robert spends most of his time responding to email inquiries and helping provide orientation to new volunteers and staff. “My role has definitely changed since I first started,” says Robert. “We don’t receive as many calls or visitors now because people look for answers online and there is so much more information available. The questions we receive today are more sophisticated since people already know some of the basics. I think the CLF has had a big role in building that foundation of awareness and knowledge.”
“ Kyla taught many people not just about liver disease, but about how to embrace life fully in spite of challenges. Getting involved with the Canadian Liver Foundation was a natural extension of the work she started,” says Laurie. “I had personally faced the ignorance and stereotypes associated with liver disease in the minds of the public and even the medical community, so I was passionate about bringing about change.”
Laurie took an active role in the CLF’s children’s liver health program including travelling throughout GTA talking to Rotary Clubs about the need for greater awareness and financial support for children’s liver disease. She then helped recruit more volunteers who were required to found the first CLF Chapter in Durham.
Her advocacy efforts naturally led to fundraising and Laurie played a significant role in establishing Durham’s Stroll for Liver and the GTA’s What a Girl Wants (WAGW) event. One of Laurie’s good friends, owner of a high fashion consignment clothing boutique, soon became a major sponsor of What a Girl Wants. “Theresa knew Kyla from the days I used to bring her into her store and is one of the many people who have been touched by Kyla’ life.” says Laurie. Thanks in part to Laurie’s enthusiasm and hard work, What a Girl Wants has raised an estimated $80,000 over the past three years.
Whether she’s speaking in front of groups or collecting pledges and sponsorships, Laurie will continue to tell Kyla’s story. “There remains a great need for education of both medical personnel and the public about liver health.” says Laurie, “and Kyla’s story brings home the relevance and the urgency of this health issue. Transplants are a treatment for end-organ failure and so are only part of the big picture. We gained 7 extra years with Kyla thanks to a liver transplant but in the end we still lost her. Funding research is the only way we’re going to learn more about the causes and prevention of children’s liver disease.”
The Nagpal Family
To lose a child is tragic – to lose a child with no real warning, a child who had seemed in perfect health, poised on the threshold of a promising future, is even more heartrending.
In March 2005, Daljit and Kamal Nagpal’s second daughter Trisha, a brilliant student and popular teen, complained of swollen feet and mild bloating. Eleven days later in the midst of an emergency liver transplant, Trisha’s heart gave up and she passed away. It wasn’t until after the autopsy that the family found out that Trisha’s death was directly related to Wilson disease, a rare liver condition leading to copper build-up that had quietly and insidiously caused the deterioration of her liver with no warnings or symptoms.
To honour Trisha and to help others avoid their tragedy, the Nagpals decided to volunteer with the Canadian Liver Foundation (CLF) to help raise awareness, raise funds for research, and to encourage people to learn about the importance of liver health.
Led by Trisha’s sisters Sonya and Simrin, the family has found many positive ways to celebrate Trisha’s life and to motivate others to get involved. The Nagpals have become the driving force behind the annual CLF Stroll for Liver in Ottawa and the money raised made it possible to establish the Canadian Liver Foundation’s Trisha Nagpal Memorial Summer Studentship. This research award goes to an undergraduate student to pursue liver-related research with one of Canada’s top specialists.
“We are doing this to remember Trisha,” says Daljit, “but we’re also raising awareness of liver disease so that what we lived through won’t happen to other families. When people hear of liver disease, they generally don’t associate it with children or teens. We want to encourage parents to have their children screened for hereditary and other liver diseases, and to learn about symptoms that tragically escaped all of us when Trisha fell ill.”
In addition to their contributions to the Stroll for Liver, the Nagpals have held a Valentine’s Day fundraising dinner and dance and Trisha’s friends have also raised funds through activities at the University of Ottawa.
We want to thank the Nagpals and their extended family and friends for their generosity and support of the Foundation. They are a terrific example of the passion and commitment of our volunteers!
Dale O’Connor, Guysborough County, Nova Scotia
Dale O’Connor is a transplant recipient, wife and mother of 4 in Guysborough County, Nova Scotia. She has been a volunteer with the Halifax Chapter of the Foundation for 3 years. Dale is committed to raising funds for liver disease research. She has talked to businesses large and small successfully securing sponsorship for Halifax’s Annual Spring Dinner. She sold 900 stems of live daisies in last year’s daisy campaign approaching both schools and businesses. Her Annual Guysborough Walk to Live”r” over the past 2 years has seen over 150 participants and raised over $15,000 from a community of only 1500. Her passion is raising awareness for the need for organ and tissue donors and this is her message in all of her efforts.