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OUR TEAM

Board of Directors

Our board is comprised of passionate citizens, medical professionals and an SJS/TENS survivor who are dedicated to bring awareness to this deadly disease.

 

Our Board of Directors are responsible for ensuring that the organization’s vision is realized through our aim and mission statements. The Board of Directors also serves to provide an overall governance of the organization’s activities, goals and priorities.​

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Sonia Whyte-Croasdaile

​Founder / President

Sonia Whyte-Croasdaile RPN, RSW is a wife, mother, nurse, Registered Social Worker, a trained Relaxation/Life Coach, and the Founder and President of Stevens-Johnson Syndrome Canada. She is experienced in community-based work, support group development and facilitation, couples, individual and group counselling. Like many other professionals, Sonia aspired to maintain her professional career of over 25 years until she was ready for retirement. However, in 2011 she battled and survived Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN), a debilitating skin condition that has since completely transformed and rearranged her life.

For approximately six weeks in 2011, Sonia fought for her life in the Intensive Care Unit and Burn Unit alike in the hospital. After being discharged from the hospital, she stated that she felt like she has become a stranger to her own body. The body she once knew was now unrecognizable and painfully falling apart due to the burning of her skin and other membranes because of the disease. Sonia desperately and passionately searched for community resources to support her challenging recovery journey but found none. She realized then that community supports for patients like her, was non-existent in Canada. Having survived this life changing ordeal, it has since become her mission to create a Canadian-based organization to assist others on their journey with SJS/TEN. To fill that void, Sonia founded this organization, Stevens-Johnson Syndrome Canada with the help of her supportive family, friends, and medical experts in the field.

Sonia Whyte-Croasdaile frequently shares her story with the medical fraternity as well as and the general community to inspire hope, bring awareness, educate, and support within and outside of the SJS/TEN patient community. Through her efforts, the organization has reached and supported numerous individuals from all over the world. Her primary goal is to help this organization improve the lives of those affected by Stevens-Johnson Syndrome.  Please join us in supporting the cause of SJS Canada in its fight to bring awareness to and possible find a cure to this life-threatening disease, through your generous monetary donation, or offering your time to help the organization in its efforts to spread the word, solicits funds, or in any other way you can.

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Vanessa Legair

​Chair

Vanessa Legair is a certified Wedding and Special Events Planner with more than 17 years of experience assisting charities, businesses and individuals in the planning and execution of charity galas, benefit concerts, anniversary lunch/dinner parties and wedding events. Prior to launching her own business in 2012, Vanessa’s work and volunteer history included Chair of the Board of Directors for Conflict Mediation Services of Downsview (2001-2009) and Manager of Annual Giving Programs with York University Foundation (2004-2011). Her breadth of knowledge, insight and experience strengthens the inner workings of the businesses and charities she has helped, particularly their fundraising campaigns and strategy.

Stevens-Johnson Syndrome almost took the life of her aunt. Through her aunt’s diagnosis, treatment, survival and after effects, Vanessa learned of this rare disease and joined the Board to support her aunt and countless others who have been affected. Vanessa is the current Board Chair with Stevens-Johnson Syndrome Canada and has held the role since the charity’s inception in 2012. She is committed to advancing SJSC’s mission to provide supports to the patient community and to build awareness and educational resources for the public.

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Justina Melkis

Board Secretary

Justina Melkis is a first-generation Canadian born and raised in Toronto. She completed her Honours Bachelor of Science at the University of Toronto and her Masters of Science at McMaster University. Currently, Justina is a third year medical student at the University of Ottawa.

She has worked in various settings that strive to empower, support and educate the diverse population of Canadians. She is passionate about gender equity in healthcare, promoting wellness and balance as a medical student, especially through social media, and engaging in research and advocacy opportunities that improve healthcare for all Canadians.

Justina has a profound interest in dermatology and working closely with individuals who have gone through a varying degree of skin-related illnesses. She believes in learning from the patients directly to understand how she, as a future health care professional, can provide her patients with the utmost care and be an advocate for them in the medical community.

Justina first learned about Stevens-Johnson Syndrome as a medical student and reached out to SJSC in hopes of learning more from survivors and being involved with SJSC to bring more awareness about this illness to her medical peers.

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Frank Linhart (Jr)

Financial Officer

Frank has been a qualified accountant (CMA, CPA) since 1992. He has been a Vice-President of Finance, Director of Finance & Corporate Controller in several industries including the Marketing Industry, Retail, Telephone Analytics, and the Gambling sector.

He joined the SJS/TEN Board of Directors in 2017 to assist with their financial goals of becoming the leading advocate for SJS/TEN in Canada. Frank’s passion is the mentoring of young financial accountants and giving back to the community through his many charities.

He is President of the Halton-Peel CPA Ontario Association, Treasurer of SJS/TEN Canada, Treasurer of Oakville Meals on Wheels and a volunteer Tax Preparer for the Region of Peel.

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Coleen Lambert

Member at Large

Coleen Lambert is a licenced Financial Broker and Coach. Prior to building her own Financial Services and Financial Coaching company in 2020, Coleen worked as a Legal Professional for more than 16 years in various areas of law such as: Real Estate, Labour and Employment, Corporate Commercial, Litigation, Oil and Gas, etc. Her knowledge and experience, expertise in presentations, administration and connection to the legal community have brought in a generous donation, strengthened the awareness in other industries, and helped with the visuals for community presentations and network fundraising. Coleen is a current Board Member with Stevens-Johnson Syndrome Canada and has held the role with the charity since 2018. Coleen has strong perspective of the early signs of Stevens-Johnson Syndrome and TEN (SJS/TEN) and the after affects because a close family member of hers is a survivor of SJS/TEN. Coleen is committed to the aim, mission and vision of Stevens-Johnson Syndrome Canada to “Promote health by providing people suffering from SJS/TEN as well as their families and caregivers with access to related counselling, support groups and information programs.
To advance education by providing workshops, forums and seminars about the SJS/TEN to the public and medical professionals.
To facilitate an umbrella of services for the SJS/TEN patient community in Canada.”

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Jeremy Falk

Patient Representative

My name is Jeremy Falk and I live in Los Angeles. In 2005 I had a bacteria staph infection.  After taking two weeks of a 21-day supply of Bactrim (a Sulfa-based antibiotic), my eyes and throat started to feel inflamed and irritated. I went to the hospital and was told I had an eye infection and was giving sulfa eye drops in addition to the oral sulfa antibiotics that I was already taking. Later that day I developed bumps on my body, my face began to swell and the skin around my face started peeling and flaking. I took a picture and sent it to my dad and brother.  My brother’s pharmacist friend told him I was having a severe allergic reaction while my dad and I read up on the possible side effects of Bactrim. Everyone agreed I need to go to the ER now.

By the time I was admitted to the hospital, my eyes were swelled shut, my skin was peeling and raw from my scalp to torso. During my 13-day week stay in a quarantined hospital room, they stitched amniotic membrane to underside of my eyes lids in the hopes that I would not lose my vision. My family took me home and helped me recover.

After one month without sight, they removed the stitches from my eyes and I was able to see, thank goodness. However, my tear ducts no longer worked and I could barely open my eyes. They were extremely photosensitive and dry.

Years later In 2012, while working with the incredible team at USC Roski Eye Institute in Los Angeles I met Dr. Gloria Chiu. Dr Chiu specializes in caring for patients with extreme eye conditions, like my SJS-effected eyes. She introduced me to PROSE contacts, and that changed everything for my eyes and me. These custom-made prosthetic lenses allowed me to open my eyes more and drastically reduced the photosensitivity. PROSE also helps to decrease the irritation and redness of my eyes.

In 2020 I began the process of cataract surgery in both eyes. The healing process has proven to be tricky due to the dryness of my eyes. I am still healing due to accidental scratches during healing.

Other than my cataract surgery woes I am in good shape. Although my nailbeds are damaged and fragile from SJS and my finger nails don’t work very well, I am very grateful that I’m healthy and was able to resume my full life of continuing my career as an Apple Consultant, running regularly (including two marathons), and all the travel and activities I enjoy and love, including attending Burning Man!

In June 2020, I found and joined the SJS Canada group and have been delighted by the support that the group provides for each other.  Sonia’s care and attention to the members of this group is greatly appreciated, her leadership has helped gain awareness and momentum for the SJS community.  It has been a pleasure to be a part of this group. Thank you.

Medical Adviors

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Dr. Bruce Carleton
PharmD, FCP, FISPE

Professor and Chair

Division of Translational Therapeutics, Department of Pediatrics

Faculty of Medicine

University of British Columbia

Director

Pharmaceutical Outcomes Programme

BC Children’s Hospital

Senior Clinician Scientist

BC Children’s Hospital Research Institute Vancouver

Dr. Bruce Carleton has over 30 years of experience in clinical pharmacology and investigating the safety and effectiveness of drugs used in both children and adults. He is the founder and CEO of the Canadian Pharmacogenomics Network for Drug Safety (CPNDS), established in 2004 and based in Vancouver, BC. One of the overarching goals of the CPNDS is to prevent adverse drug reactions (ADRs) by identifying predictive genomic markers for specific ADRs through active surveillance. These markers are incorporated into diagnostic tools used to predict and prevent ADRs through specific dosing and alternative therapeutic recommendations for commonly used drugs. The CPNDS has established extensive collaborations within the province of BC, across Canada and internationally, to conduct patient-oriented research and disseminate findings to help patients.


One of the specific areas, where Dr. Carleton is a recognized leader whose scientific accomplishments have been acknowledged internationally, is in Severe Cutaneous Adverse Reactions (SCAR). His work has identified genetic variants that cause a variety of ADRs including carbamazepine-induced hypersensitivity reactions e.g., Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), phenytoin-induced maculopapular exanthema, and the development of clinical practice guidelines for predictive pharmacogenetic testing.


In 2017, Dr. Carleton was invited and asked to speak at the SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation Meeting, the second in a series of biennial meetings of experts to take place in North America. Dr. Carleton also hosted and chaired the organizing committee for the SJS/TEN 2019: From Science to Translation Meeting which successfully engaged 164 participants, including 43 SJS/TEN patients and their families from six continents. Establishing international network meetings is a significant component in advancing the science to understand these rare, severe ADRs as well as showcasing the latest innovations for treating SJS/TEN. Attendees are then able to further enhance the support systems and technologies to improve care for patients. Dr. Carleton continued his involvement and participation at the SJS/TEN 2021: Collaboration, Innovation and Community Meeting held virtually during the COVID-19 pandemic.


Dr. Carleton is currently investigating genomic causes of antibiotic-induced severe cutaneous adverse reactions in pediatric and adult patients, as well as common genetic traits for all drug-induced serious cutaneous adverse reactions.

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Dr. Neil H. Shear
MD, FRCPC FACP

Professor Emeritus

Dermatology; Internal Medicine, Clinical Pharmacology & Toxicology

University of Toronto

Dr. Shear’s primary academic research is in Drug Safety, including basic mechanisms that lead to increased risk for drug-induced harm. His practice is considered advanced medical dermatology. His clinical and research endeavors have focused on severe drug-induced diseases, such as Stevens-Johnson Syndrome/Toxic Epidermal Necrolysis (SJS/TEN), atopic dermatitis, psoriasis, auto-immune blistering disease, hidradenitis suppurativa, cutaneous lymphomas and auto-immune skin disease.

Shear trained in Engineering Science (University of Toronto), Medicine (McMaster), Internal Medicine (FRCPC), Dermatology (University of Toronto; FRCPC) and Clinical Pharmacology (Hospital for Sick Children, Toronto). Professor Shear was the Head of Clinical Pharmacology at the University of Toronto for 9 years, and the Head of Dermatology at the University for the 16 years following.

Past positions include President of the Canadian Dermatology Association, President of the Canadian Society of Clinical Pharmacology, President of the Canadian Professors of Dermatology, President of the Canadian Dermatology Foundation and Head of Dermatology at University of Toronto. He has received two Presidential Citations from the American Academy of Dermatology. He has been an honoured as a visiting professor over 50 times. Shear was made an honorary member of the Société Française de Dermatologie (2017) and the Scottish Dermatological Society, recipient of the Lifetime Achievement Award of the Ontario Medical Association, and many teaching awards.

Dr. Shear has been an author of over 60 text book chapters, Editor of Litt’s Drug Eruption Manual, as well as over 400 peer-reviewed publications. Shear has had the pleasure of mentoring 40 postgraduate fellows from Canada and abroad; as well as a large number of dermatologists and clinical pharmacologists in Canada.

Included in his multiple peer-review publications Dr. Shear has been a leader of about 20 major global meetings on this subject, and is recognized globally as an expert.  Many of the contributors in the field today are former fellows (trainees) of Professor Neil Shear.

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Dr. Elizabeth J. Phillips MD, FRCPC, FRACP, FIDSA, FAAAAI

Professor of Medicine, Dermatology, Pathology, Microbiology, and Immunology

John A. Oates Chair in Clinical Research

Director, Center for Drug Safety and Immunology

Director, Personalized Immunology, John A. Oates Institute for Experimental Therapeutics

Vanderbilt University Medical Center

Professor of Pharmacology

Vanderbilt University School of Medicine

Dr. Elizabeth Phillips is a physician-scientist clinically trained in infectious diseases, immunology, and clinical pharmacology who has established new clinical and research programs in drug hypersensitivity, pharmacogenomics, and personalized immunology across different healthcare systems. She has published over 350 peer-reviewed articles and book chapters on hypersensitivity reactions to drugs and vaccines.

For over 25 years, Dr. Phillips has led research programs in Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN) and other severe immune-mediated adverse drug reactions across different medical systems. She is recognized for elucidating mechanisms and genetic determinants of drug hypersensitivity, which have transformed research, clinical practice, and training in the United States and internationally. Her discovery through a translation pipeline continues to pioneer strategies to prevent, diagnose, and mitigate harm from true drug hypersensitivity. She is also applying novel technologies to understand the single-cell pathology of drug hypersensitivity at the site of tissue damage, leading to the identification of new therapeutic targets. Additionally, Dr. Phillips is a principal investigator on National Institutes of Health (NIH) funded research to define genetic and other markers that can lead to the prediction, prevention, and earlier diagnosis of SCARs, including the North American Therapeutics In Epidermal Necrolysis Syndrome (NATIENS) study to determine the most effective treatment for SJS/TEN.

Dr. Phillips has also led the development of clinical guidance and practices related to the care of drug hypersensitivity in patients. She presently dedicates her clinical outpatient practice to drug hypersensitivity at VUMC and her clinics have acted as a model for others within the United States and abroad, and her efforts have transformed care across multiple disciplines.

An additional passion of Dr. Phillips is advocating for members of the community with severe cutaneous adverse drug reactions and working alongside patients and foundations to advance education, awareness, and science of drug hypersensitivity. She founded and led SJS/TEN 2017, 2019, 2021, and 2023 meetings and the DRESS 2022 meeting to unite science with the community. These meetings have provided a diversity of scientific information to an international audience. The SJS/TEN 2023 meeting, for example, drew an overall attendance of 428 individuals from 57 countries, including 72 representatives of the SJS/TEN community and 356 members of the scientific community.

Advisory Committee

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Dr. Seema ManeKondvilkar

TBA

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Vincent Cornish

Vincent Cornish, FICB. Vincent is a “Fellow of the Institute of Canadian Bankers”;

he obtained his FICB designation through extensive studies at: York University,

TMU (Toronto Metropolitan University – formally Ryerson University) and Queens

University, Kingston Ontario.

He is a former Assistant Vice President of Bank of America Canada where he

served in various managerial roles over 36 years of employment.

Vincent has been recently certified as a Chaplain with the Canadian International

Chaplaincy Association and received his Badge of Honor. He is equipped to

perform Chaplaincy duties to individuals/groups in: schools, colleges, universities,

hospitals etc.

Stevens - Johnson syndrome almost took the life of his sister. Through his sister’s

diagnosis, treatment, survival and after effects, Vincent learned of this rare

disease and joined the Advisory Committee to help provide advice on the

accomplishment of the organizational aim and knowledge on the nature of

Stevens - Johnson syndrome and the health care it needs.

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Karen Worthy PhD, MPH, RN, CNE

Dr. Karen Worthy is an Associate Professor at the University of South Carolina College of

Nursing. Dr. Worthy has a 26-year history in professional nursing and has been a nurse educator

for 17 years. She received an ADN, BSN, MSN, MPH, a Graduate Certificate in Leadership

Studies, and PhD in Higher Education Administration from the USC. Her research interests

include simulation methodology, social determinates of health, and DEI initiatives. She is

currently co-directing two grants from the CDC totaling $1.8 million to increase the number of

diverse, underrepresented nursing graduates in South Carolina. Dr. Worthy is a Certified Nurse

Educator, Sigma Theta Tau International Honor Society of Nursing Alpha Xi Chapter

(President), Midland’s Black Nurses Association (Bylaws Committee), and

Amy Cockcroft Fellow. Selected awards include the USC CON Community Engagement Award

(two years), USC CON Outstanding Equity and Justice Advocacy, and USC Clinical Practice

Teaching Award.

Dr. Worthy was diagnosed with SJS/TEN in 2020 and treated at the JMS Burn Center at Doctor’s

Hospital in Augusta, Georgia. Please read her incredible story below for more details.

"A Nurse Educator’s Journey to a New Normal: Surviving SJS/TEN" - BRCA Article

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Lorna Baker

Lorna has been a Registered Nurse since 1996 and served as a Community  Health Nurse from 1997 to 2010. Following this, she held the position of  Certified Diabetes Educator at Unison Health and Community Services  from 2010 to 2017. Since 2013, Lorna has been the Hub and Satellite  Manager at Unison Health and Community Services. In 2017, she founded  and presided over the Resiliency Club Foundation. Demonstrating  continued dedication, Lorna became the Owner/CEO of Phoenix Health/Home Care Services in 2023.

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