Lee Durdon

My Journey: Lee Durdon, President and Founder, Sjogren’s Society of Canada

Sjogren’s Syndrome is the second most prevalent autoimmune disorder that few have heard of. Sjogren’s takes an average of 5–9 years to be diagnosed. Sufferers may not look sick on the outside adding to the delay in diagnosis. Affects 430,000 Canadians; 3 x more than Multiple Sclerosis and Lupus; and 9 out of 10 are women, but men and children also suffer.

After a long road and finally being diagnosed with Sjogren’s Syndrome several years ago, I was fortunate to find excellent doctors and excellent care, but it still wasn’t enough. As many of us living with Sjogren’s are all too well aware of, just as we seem to get one symptom under control, another equally annoying, disruptive, painful symptom appears or an unwanted one returns again. The unpredictability of Sjogren’s is particularly difficult to live with. So goes the journey.

I felt I owed it to my husband and family but more importantly, I owed it to myself to find a way to try to live a better life or even have a life with Sjogren’s. I needed to find support from other people with the same disease that could understand [...] continue the story

Mandy Maresky

Mandy Maresky My son Aaron was diagnosed with Crohn’s disease at the tender age of 7. In 2009, shortly after my son’s diagnosis my family and I started Aaron’s Apple.

Parents of children with chronic illness are faced with the harsh reality that they are unable to control the illness that their child has been diagnosed. One of the options to ease the suffering of these children comes in the form of highly priced medical treatments. Some parents are fortunate enough to have medical insurance that will cover such high costs. However many are not so fortunate and simply don’t have the financial means to ease the intolerable pain that their child is experiencing.  Aaron’s Apple’s primary goal is to help families cope with overwhelming medical costs. As the costs of delivering healthcare rises, the ability of families to afford the appropriate and necessary healthcare diminishes. This places enormous stress upon families. In their time of need, Aaron’s Apple helps families pay for expensive medication and treatments.

Aaron’s Apple has raised over $400,000 in it’s short existence, and amazingly has helped 20 families gain access to unaffordable medications. In addition, in 2013 Aaron’s Apple donated $50,000 to the Aaron’s Apple Amenities fund, administered by [...] continue the story

Joan Park

Joan Park Joan Park’s enthusiasm about her work and commitment to superior patient care has gained her admiration and respect from patients, colleagues, nursing leadership, physicians and other disciplines.  Collaboration, innovation, scholarship and advanced practice are the hallmarks of her leadership.

In 1998 the dynamics of the healthcare system were changing to be more dollar efficient and yet of higher quality and more responsive to patients.  Joan was selected to develop the role of Case Manager at St. Michael’s Hospital.  This journey led her to discover that the potential of Case Management is to optimize quality patient care while at the same time managing the effective and efficient use of resources.

Her definition of quality became:

“Right Place, Right Time, Right Care, Right Provider = Right Cost”

From there, the spark of leadership grew to a roaring flame as she created momentum to both define and promote Case Management nationally.

By connecting with others, a small network of Case Management providers representing diverse disciplines, sectors, provinces and territories was formed. The National Case Management Network of Canada was launched in November 2006.  As President of the National Case Management Network (NCMN) she spearheaded the creation of the Canadian Standards of Practice for Case Management in 2008.  [...] continue the story

Guida Clozza

Guida Quaglia Clozza Guida Quaglia Clozza (B.PHE; B.ED) is a retired secondary school teacher with 31 years of experience in Physical and Health Education and has a specialist in Special Education. Her passion for teaching and advocating for the rights and the needs of exceptional students have led her over the years to become a voice of support for fairness, in both the educational and medical communities.

Guida has always been a strong advocate for special needs children and promoting inclusion in school and in the community. She has sat on parent school councils, presented workshops on navigating the school system, and has been involved in many school and community special education programs and parent workshops

(Erinoak Kids Treatment Center, Hospital for Sick Kids, Geneva Center for Autism, Community Living in Peel region, Dufferin Peel Catholic School Board Special Education Advisory Committee). In 2009, Guida was recognized for ‘her advocacy and efforts on behalf of special needs students’ by the Ontario Association for Developmental Education as the recipient of the Fred Soplet Humanitarian Award.

Guida has actively been involved in Epilepsy awareness as an Epilepsy ambassador for 20 years working through Epilepsy Toronto, where she received the H.O.P.E Award (Helping Out People with Epilepsy) [...] continue the story

Dee Christensen

Dee Christensen Dee Christensen is a writer, social advocate and the owner of Canada’s leading addiction magazine. This former street junkie turned entrepreneur used her life experiences and an academic background in Criminology and Social Work to found Recovery Wire Magazine. This common interest publication has become a vehicle for uniting the broader addiction community, and a medium to reach people who might not be ready to get help yet. As Editor in Chief, Dee is passionate about joining the fight to educate people about addiction, and end the cycle of isolation and recidivism. This grass roots magazine, written by people impacted by addiction personally, has become a major resource for addiction professionals and individual subscribers around the globe: from Canada to the United States, Australia, Italy, the United Kingdom and even China.

Derek Forgie of MTV Canada writes, “One would be hard-pressed to find a hipper, slicker, unapologetically honest approach to the important issue of recovery.” 

Dee credits her success to the everyday, hard working heroes in the mental health field that she met along the way. For every person who steered her in the right direction and cheered her on during her voyage back to life, she works tirelessly to pay [...] continue the story

Shirley Williams

Shirley Williams Chief Transformation Officer

New Media Enthusiast and Advocate

Experience Enabler

Shirley is a result-driven and passionate leader. She has led numerous business transformation initiatives across the globe that has included Canada, US, South Americas, Europe and Australia.  Her 20 -year career has spanned Biotechnology, Brand & Generic Pharmaceuticals, IBM Global Business Consulting, Healthcare and New Media.

In addition to her own blogs on global leadership [William Pearl] and social media [Social Media Pearls], Shirley is a blogger for Pharma iQ , Huffington Post and currently produces her own talk radio shows including, Rise Of The Patient. Shirley has introduced the term COMsumers to reflect today’s informed and empowered consumer. Shirley helps organizations to become better through the eyes of the consumer, by improving the consumer experience.

Leveraging her talk radio show, business transformational know-how, Shirley facilitates engaging conversations, collaborations and performance to improve systems, processes and operations.  Academically, Shirley is a scientist with a Master of Science degree in Pharmacology. Shirley is also a certified practitioner and professional in Change Management (Prosci), Project Management (PMP/PMI) and Social Media (OMCP, Online Marketing Certified Professional). INITIATIVES 1. Rise Of The Patient. Elevating The Voices in Health Care to Drive Collaboration

There is a movement happening. It is a quiet one, however [...] continue the story

Christine Janus

Christine Janus Christine Janus has been the Executive Director of the Canadian Skin Patient Alliance (CSPA) since 2007. A skin patient herself, she has grown the ‘for patients, by patients’ organization to a nationwide support, education and advocacy organization serving affiliated patient organizations and the millions of Canadians living with skin conditions, diseases and traumas. Christine is an active patient advocate and works on a number of committees with the Best Medicines Coalition, has represented skin cancer patients on the Canadian Cancer Action Network and is currently involved in 2013 with the formation of a federal patient voice initiative. Christine represents skin patients in Canada here at home and globally, seeking to always pass on the message that skin disease is more than skin deep.

Under Christine’s leadership the CSPA has won 3 awards –for its excellent website, for its widely read national magazine ” Canadian Skin” (à propeau in French), and this last year for a very thorough analysis of access issues faced by dermatology patients in Canada called “ Skin Deep : A Report Card on Access to Dermatological Care and Treatment in Canada”. Under her watch the CSPA also offered skin, hair and nail patients their very own conference [...] continue the story

Megan Oates

Megan Oates Diagnosed with cancer at 17, author and budding philanthropist Megan Alexandria Oates decided to pen her own memoir ‘Would You Like Your Cancer?’ Provocative and honest, she crafted a must-read story that is entertaining in its boldness and captivating in its intimacy. She shares the innermost details of her journey through cancer and recovery, hoping to inspire, raise awareness and positively impact the lives of others.

Megan is a twenty-something survivor, young adult advocate and leader in her community. She contributes regularly to Thyroid Cancer Canada’s ‘Thry’vors’ Newsletter and has spoken at events held by the Canadian Cancer Society and Valerie’s Flutter Foundation. Through her story, the experience of cancer is all the more real, invoking compassion, sparking conversation and helping to change the lives of cancer patients and survivors. Making a Difference Being diagnosed with cancer in her teens, Megan struggled with fear, anxiety and feelings of isolation. To help support patients who are courageously battling cancer, and enable those who love and care for them to better understand the many different impacts of this disease, Megan has provided copies of her book to several hospital libraries across Canada and the United States. She hopes her story helps to strengthen and [...] continue the story

Colleen Young – Online Social Innovator and Community Manager

Colleen Young – Online Social Innovator and Community Manager “The most exciting innovation of the connected health era is people talking with each other.” ~ Susannah Fox from the Pew Research Center.

Thanks to the social web, we can build close-knit and far-reaching networks and join communities online when we need help or advice easier and more quickly than ever before.

As an online community manager and social innovator, Colleen Young witnesses this phenomenon every day. Patients, caregivers, family, friends, and other supporters are increasingly taking part in online health communities to share information and find support, and invariably build a collective knowledge that is second to none.

Colleen is the Founder of Health Care Social Media Canada (#hcsmca) and Manager of Social Innovation at ELLICSR, Princess Margaret Hospital. Colleen is an online community manager who builds virtual health communities that thrive. Health Care Social Media Canada is a community of practice exceeding 7000 members who share and learn via online social tools, making health care more open and connected. As the Community Manager for Canadian Virtual Hospice, Colleen built an community for patients and caregivers seeking online peer support at the end of life and through bereavement.

Talking about how to build and sustain a successful online [...] continue the story

Annette McKinnon

Annette McKinnon After enduring progressive symptoms for two years, when I was finally diagnosed with RA at 32 it was a life changing event. It led me to build a rewarding career in market research over the past 25 years. For the first few years of dealing with the RA I felt alone: isolated and in the dark.

Once I joined the online world I found communities and support to be plentiful. I also discovered that I liked to share my experiences with others in ways that I hoped would be helpful. That motivated me to become active — both online and in real life — talking about support, advocacy and sources of information.

Now I share my experiences through my blog “Your Gold Watch – Rheutired”. It’s about being a patient and having a chronic disease in a general sense that could apply to almost any ailment.

I hope that my efforts will help patients to deal with challenges they face in healthcare, and enable them to become self-managers of their health issues and active participants in bringing change.

Here are some of the ways I have learned about being an active patient.

I’m a volunteer member of Patient Partners in Arthritis. This group provides trained patient [...] continue the story