Search Results

Stevens -Johnson Syndrome Canada. SJS Support group. Learn about the disease that burns the body from the inside out. Promoting health by providing people suffering from SJS/TEN as well as their families and care givers with access to related counselling, support groups and information programs. Welcome to Stevens-Johnson Syndrome Canada Providing support for survivors, family, friends, and caregivers in the SJS/TEN community Our Mission Our Goal, Vision & Commitment Our Events Register & Help Make Change Get Involved Volunteer, Participate, or Donate Upcoming Events Annual General Meeting (AGM) 2026 Mon, Apr 20 Zoom Meeting More info Save spot Multiple Dates SJSC Support Group Wed, May 20 https://us02web.zoom.us/j/82137370516?pwd=W More info Save spot Join the Circle of Hope Give Monthly. Create Lasting Impact. Every month, your generosity helps SJS Canada support survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) through advocacy, awareness, and education. By joining the Circle of Hope, you become part of a compassionate community that ensures no survivor faces their journey alone. Whether you give $5, $10, $20, or more, your steady support provides strength, stability, and hope all year long. Join today and make your impact last. Become a Monthly Donor Read More Donate Monthly Subscribe to Our Newsletter First Name Last name Email Sign Up At SJS Canada, we are committed to promoting health by providing those affected by SJS/TEN, as well as their families and caregivers, with access to counseling, support groups, and information programs. Read About the Center Jane G. I am now a part of a group of survivors from many places who zoom and talk, email, and encourage and support each other on a regular basis. It is a valuable asset in my post SJS overlapping TEN day to day feel good moments, a place to gather knowledge, ask questions and listen to others. Peace and love. ✌️🌸 Testimonials See all Donate Today Donate to Make a Difference. Your donation is crucial to our mission of supporting patients and their fa milies who are affected by SJS/TEN. Donate Now

Organization Information Organization Name* Contact person (First & Last name)* Title / Role* Phone Number Email address* Sessions Details Preferred Date and Time* Month Month Day Year Time : Hours Minutes AM Type of Session Requested* Virtual In-Person Fee Preference* Fee-for-Service Session Complimentary Session with Expected Donation Session Focus (check all that apply)* General SJS/TEN Awareness Early Signs & Recognition Survivor Experience & Long-Term Impact Caregiver & Family Education Other (please specify) Audience type* Community members Students Stall / Volunteers Mixed Audience Estimated Audience Size Additional Information Consent* I understand that submitting this form does not guarantee availability and that SJS Canada will follow up to confirm details. Submit

Upcoming Events Annual General Meeting (AGM) 2026 Mon, Apr 20 Zoom Meeting More info RSVP Multiple Dates SJSC Support Group Wed, May 20 https://us02web.zoom.us/j/82137370516?pwd=W More info RSVP Volunteer Appreciation Week – A Heartfelt Thank You During Volunteer Appreciation Week, we proudly recognize and celebrate the incredible individuals who give their time, compassion, and expertise to support the SJS/TEN community. Your dedication is the heartbeat of SJS Canada. Because of you, we are able to provide support, raise awareness, and continue advocating for those impacted by Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis. We are deeply grateful for all that you do. Your commitment truly makes a difference. Thank you for being part of our community . Events Calendar April 2026 Today Mon Tue Wed Thu Fri Sat Sun 30 31 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 3:30 PM SJSC Support Group 16 17 18 19 20 7:15 PM Annual General Meeting (AGM) 2026 21 22 23 24 25 26 27 28 29 30 1 2 3 4 5 6 7 8 9 10 We Need Your Support Today! Donate Past Events Multiple Dates Wed, Apr 15 SJSC Support Group / https://us02web.zoom.us/j/82137370516?pwd=W Details Apr 15, 2026, 3:30 PM – 4:30 PM EDT https://us02web.zoom.us/j/82137370516?pwd=W See All Thu, Feb 26 Rare Disease Month Webinar / Zoom Details Feb 26, 2026, 7:00 PM – 9:00 PM Zoom +34 more Multiple Dates Wed, Jan 21 SJSC Support Group / Virtual Zoom online Conference Details Jan 21, 2026, 3:30 PM – 4:30 PM EST Virtual Zoom online Conference See All Multiple Dates Tue, Dec 09 Elpizo Counseling / Zoom Meeting Details Dec 09, 2025, 6:00 PM – 7:30 PM Zoom Meeting See All Sun, Dec 07 December Benefits Concert / Virtual Zoom Event Details Dec 07, 2025, 6:00 PM – 9:00 PM EST Virtual Zoom Event Join us for an unforgettable night of performances, fun and entertainment at our year end Benefits Concert. +17 more Sun, Dec 07 Save the Date Christmas Concert / Zoom Details Dec 07, 2025, 6:00 PM – 9:30 PM Zoom Thu, Aug 28 SJS Webinar- Global Connections / Online: Virtual Zoom online Conference Details Aug 28, 2025, 7:00 PM – 9:00 PM Online: Virtual Zoom online Conference +22 more Fri, Aug 15 SJS Virtual Move-A-Thon / Zoom Details Aug 15, 2025, 7:00 AM – Aug 17, 2025, 11:00 PM Zoom Join Us for the SJS/TEN Awareness Virtual Walk-a-Thon See All Mon, May 05 Annual General Meeting (AGM) 2025 / Zoom Meeting Details May 05, 2025, 6:30 PM – 8:00 PM EDT Zoom Meeting +28 more Multiple Dates Wed, Apr 09 Elpizo Counseling / Zoom Details Apr 09, 2025, 6:00 PM – 7:30 PM EDT Zoom Tue, Feb 25 SJS Canada February Webinar / Zoom Details Feb 25, 2025, 7:00 PM – 9:00 PM Zoom +70 more Wed, Jan 15 SJSC Support Group / https://us02web.zoom.us/j/82137370516?pwd=W Details Jan 15, 2025, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W See All Multiple Dates Wed, Dec 18 SJSC Support Group / https://us02web.zoom.us/j/82137370516?pwd=W Details Dec 18, 2024, 3:30 PM – 4:30 PM https://us02web.zoom.us/j/82137370516?pwd=W Sun, Dec 08 Season of Hope Benefit Event / Virtual Zoom Event Details Dec 08, 2024, 6:00 PM – 8:30 PM EST Virtual Zoom Event Join us for an unforgettable night of live performances, fun and entertainment at the Season of Hope Benefit. +14 more Multiple Dates Wed, Dec 04 ElPizo Counseling / https://2ly.link/20Ymj Details Dec 04, 2024, 6:00 PM – 7:30 PM EST https://2ly.link/20Ymj Thu, Aug 29 SJS Awareness Month Town Hall / Zoom Town Hall Details Aug 29, 2024, 7:30 PM – 9:00 PM Zoom Town Hall +26 more Thu, Jul 11 Games Night - Virtual Edition / ZOOM Details Jul 11, 2024, 6:00 PM – 8:30 PM ZOOM Mon, Jul 01 SJSC Canada Day Booth | Free Event / Brantford Details Jul 01, 2024, 10:00 AM – 10:00 PM Brantford, Brantford, ON, Canada Load More

Contact Get in Touch Email BN info@sjscanada.org | 81927 7393 RR0001 Name Email Subject Your message Send Thanks for submitting! We Need Your Support Today! Donate

Programs and Services Survivor's Stories Here you'll find amazing stories from people. Read More Support Group We are here to help you. Send us a message. Read More Educational Want to learn more about SJS/TEN disease? Read More Volunteer Your help is greatly appreciated. Be part of our group. Read More How Can We Help We Care We care for supporters and SJS/TEN survivors on the recovery journey. Stay together The group is developed to join together those of us who are dealing with similar challenging circumstances – the long-term effects of SJS/TEN. Support Groups Through the sharing of our experiences, we’re able to offer support, encouragement, comfort to each other, and receive the same in return. Shared Experiences The SJS/TEN recovery journey can be very challenging, therefore one of the best medicines can often be the voice of people who have walked in your shoes. Medical Specialists Our monthly meetings provide the opportunity to have personal conversations with expert medical specialists in the SJS/TEN field. Together we can do better We are Stronger Together in the fight against SJS/TEN. #SJSCANTSTOPME SJS Awareness Month Read more... SJS Information Poster Download Poster Find a Doctor Read more... SJS Facts Sheet Download Sheet

Active Campaigns SJS Canada Virtual “Move-a-Thon” Fundraiser 2024 Register Here Join the SJS Move-a-Thon 2024 Fundraiser: Move for Those Who Can't From August 16-19, we invite you to be a part of something truly meaningful. Across Canada and the United States, people will be walking, running, or biking to support survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These rare, but devastating skin conditions change lives forever. Together, we can help them on their journey to recovery. Move for Those Who Can't Imagine the unimaginable pain of your skin burning from the inside out. This is the reality for those suffering from SJS/TEN. Many survivors are left with lifelong consequences that make it difficult or impossible to move freely. By participating in the SJS Move-a-Thon, you are not just moving your body; you are moving hearts and minds towards a cause that needs your support. Why Participate? Your participation in the Move-a-Thon sends a powerful message of solidarity and hope to survivors of SJS/TEN. Every step you take, every mile you bike, directly contributes to providing survivors with essential resources such as supportive counseling, educational sessions, and genetic testing through partnerships with health professionals. Your efforts help to rebuild lives and restore hope. Join us in this journey of compassion and action. Let’s come together to make a tangible difference. Your support will provide survivors with the care and support they desperately need, showing them they are not alone. How You Can Help: Participate: Walk, run, step, bike or move from August 16-19. Donate: Make a secure donation and help us reach our goal (campaign ends Sept, 2024) Spread the Word: Follow us on social media for updates and share our cause with your community. Together, we can bring awareness to SJS/TEN, support survivors, and make a real difference. Let’s move for those who can't. Join the SJS Move-a-Thon and be a part of a movement that changes lives. WE THANK YOU IN ADVANCE FOR YOUR SUPPORT. Join us in the fight against the disease that burns the body from the inside out because TOGETHER, WE ARE STRONGER . Contact Us Help us on this fight! Donate Now

Blog The Unseen Emergency: Understanding Ocular Involvement in SJS/TEN When we talk about Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), the immediate focus is often on the severe and visible impact on the skin. However, SJS/TEN is a mucocutaneous condition, meaning it attacks the mucous membranes just as aggressively. For up to 80% of patients, the eyes are directly on the front lines of this immune response. Because SJS/TEN is incredibly rare, bringing awareness to the different clinical topics within the disease is ess Mar 27 3 min read When a Rare Disease Is Missed: Misdiagnosis of Stevens–Johnson Syndrome and Why It Matters Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare, life-threatening reactions, most often triggered by medications. Despite their severity, early SJS/TEN is frequently misdiagnosed, delaying withdrawal of the offending drug and appropriate care. For a condition where hours and days matter, misrecognition can significantly worsen outcomes. As we recognize Rare Disease Month, it is important to examine why SJS/TEN is so often missed, what it is common Feb 18 3 min read Fueling the Fight: Nutrition and Physical Recovery After SJS/TEN Recovery from Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) does not end when the skin stops blistering. For many survivors, the weeks and months after hospitalization are defined by rebuilding strength, healing wounds, and restoring physical function. Two pillars of this recovery, nutrition and physical rehabilitation, are often under-discussed, yet they are central to healing. This post explores what research and clinical guidance tell us about how f Jan 8 4 min read Prevention Starts with Awareness: Reducing the Risk of Severe Drug Reactions Every October, Canadian Patient Safety Week reminds us of the importance of preventing harm before it happens. For rare but serious conditions like Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN), prevention means reducing risk for everyone: by improving drug safety, recognizing early signs, and responding quickly when reactions occur. While we cannot always predict who will develop them, greater awareness can help reduce the risk. Understanding the Risk Nov 18, 2025 3 min read Recognizing and Addressing SJS/TEN in Skin of Color Stevens–Johnson yndrome (SJS) and toxic epidermal necrolysis (TEN) are rare, life-threatening skin reactions that can affect anyone.... Oct 9, 2025 2 min read August Is Global SJS Awareness Month: The Power of Awareness and What You ShouldKnow Stevens–Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are rare but devastating drug reactions that can quickly escalate... Aug 14, 2025 3 min read 1 2 3 4 5

Community Organization We are working on this! Coming soon...

Global SJS Awareness Month: August August – A Month of Awareness, Advocacy, and Action Every August, SJS Canada joins organizations and individuals around the world to recognize Global Stevens-Johnson Syndrome (SJS) Awareness Month. A time dedicated to shining a light on Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN). These rare but severe reactions, most often triggered by medications, can be life-threatening and leave survivors with long-term physical and emotional impacts. Why Awareness Matters Early recognition of symptoms is critical to improving outcomes. Increased awareness among the public and healthcare professionals can lead to faster diagnosis, better treatment, and fewer preventable cases. By educating others, we can help save lives and reduce suffering. Our Goals During Awareness Month Educate about the signs, risks, and long-term effects of SJS/TEN Empower survivors and families to share their stories and connect with others Advocate for safer prescribing practices and stronger patient protections Engage communities through events, campaigns, and social media outreach How You Can Get Involved Join our events – including our annual Virtual SJS/TEN Educational Webinar and Move/Walk/Run happening mid to late summer Share your story – Survivor voices bring powerful awareness and connection Spread the word on social media using our downloadable graphics and hashtags Attend our Canada Day booth at Lion’s Park in Brantford (July 1st) to kick off the conversation early Support our Membership Drive – Help us grow and sustain our work year-round Together, We Are Stronger SJS Awareness Month is not just about information—it’s about community, compassion, and action. Whether you're a survivor, caregiver, healthcare professional, or supporter, your voice SJS Awareness Month Activities | This is how you can join the fight. We have some activities during August that you can join to support us in our fight. Check them out.

August 18th SJS Awareness Day August 18 – SJS Awareness Day? August 18th is recognized globally as SJS Awareness Day—a day to honour the lives lost to SJS/TEN and to stand in solidarity with survivors, families, and caregivers. It serves as a powerful reminder of the importance of early recognition, informed healthcare decisions, and strong support networks. On this day, we come together to: Remember those who have passed away due to SJS/TEN Celebrate the strength and resilience of survivors Educate the public and healthcare professionals about prevention and early signs Advocate for safer drug practices and improved treatment protocols How You Can Get Involved: Join our annual virtual webinar – Featuring survivors, healthcare experts, and advocates (August 28, 2025 – details to come) Share your story – Help raise awareness through your lived experience Support our campaigns on social media with facts, resources, and survivor voices Participate in our Move/Walk/Run event – Coming mid to late summer Visit us at community events, such as our Canada Day booth in Brantford Become a member – Join our growing community and help us expand our reach and impact Together, We Are Stronger SJS Awareness Month and SJS Awareness Day are powerful reminders that every voice matters. Whether you're a survivor, a loved one, a healthcare provider, or an advocate, your participation helps bring visibility to this rare condition and ensures that no one affected by SJS/TEN stands alone. Let’s continue working together to save lives through awareness, early detection, and compassionate support. To learn more or get involved, contact us at info@sjscanada.org or follow us on social media @SJSCANADA. Activities: Complete all checks for the day! We kindly ask you to post your photo or video as you engage in these activities with #sjscantstopme Follow us on social media to hear survivors share their stories with us Wear blue, the SJS official colour, and encourage others to do the same. Change your social media profile to blue. Be encouraged to tell someone about SJS/TEN throughout the day Join our virtual/in-person SJS/TEN awareness Move-A-Thon Survivors can get together, within a virtual space, with a facilitator and share their experience and support each other. Please feel free to spread the word or distribute SJS awareness materials within the community

Survivor's Stories We would be honoured to share your experience as a beacon of support and unity. Sonia's City TV Interview Julie’s story Meet Julie who miraculously survived SJS/TEN. YC’s story I was a completely healthy individual until I got the flu vaccine... Jeremy’s story I had a bacterial infection in 2005. After 13 days of taking antibiotics, I developed... Kathleen’s story My name is Kathleen, and I am from Washington, USA, just north of... Anastasia’s Story I was diagnosed with TEN in early 2016 when I was 28 years old. I was 5th grade... Jane’s story My name is Jane Grady and I’m an SJS/TEN survivor. I was prescribed a medication ... Jennifer’s Story My name is Jennifer Lane. I have just turned 48, and this is my SJS/Ten story. It all... Bruce’s Story Late February 2005, I developed symptoms of fever, headache, and... Kim’s Story The impact of Stevens Johnson Syndrome affects each victim differently depending on... Dr. Karen's Story Karen Worthy, Ph.D., MPH, RN, CNE, CNEcl University of South Carolina, College of Nursing Professor...

Meet The Team Founder/President Founder & President Sonia Whyte-Croasdaile 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 ... Read More Board of Directors Co-Chair Strategic & External Lead Sanjay Kumar Sanjay Kumar is a Sariel Entpreneure. His expertise includes Digital Marketing, IT Consulting Services, and Managing cross-functional teams. Sanjay helps enterprises ... Read More Board Member | Medical Advisor Dr. Bruce Carleton 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... Read More Board Member Sonia Bromfield-Cornish Sonia Bromfield-Cornish has been a practicing pharmacist for over 25 years, working across various sectors of the industry, including Community Pharmacy, Hospital Pharmacy, Compounding ... Read More Member at Large/Secretary Coleen Lambert 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... Read More Board Member Phatay Waraich Phatay is a Vendor Manager with TD Bank within the technology team. He has had various roles within the financial industry from procurement and third party risk management to... Read More Co-Chair – Governance & Operations Lead Dr. Karen Worthy Dr. Karen Worthy is a Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 28-year history in professional nursing and has been a nurse educator for 19 years. She received an ADN, BSN, MSN, MPH, a Graduate Certificate in Leadership Studies,... Read More Patient Representative Jeremy Falk 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 ... Read More Board Member Dr. Michele Ramien Dr. Ramien is a hospital-based academic dermatologist at the Alberta Children’s Hospital who is board-certified in both Canada and the United States. A first-generation... Read More Medical Advisors Dr. Bruce Carleton PharmD, FCP, FISPE 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... 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. Elizabeth J. Phillips MD, FRCPC, FRACP, FIDSA, FAAAAI 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... 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 Coordinators Francene Francis Administrative Assistant to the President Francene has served in this capacity since 2022. She has a personal stake in the organization as a close family member has persevered and survived the onslaught of the illnesses and still continues to live with the aftereffects. Alongside the President, Francene is responsible for overseeing the daily operations of the organization and ensuring that the President's visions for SJS Canada are carried out to the best of our volunteer capacity. Larba Ouedraogo Web Developer and Team Coordinator I worked as a Senior Audiovisual Technician before moving to the USA, where I completed a Master's degree in Mass Media and Strategic Communications. I volunteered with different organisations, such as Education Without Borders (EwB). At SJSC Canada, I manage the website development, lead the website team, ensure compliance, and improve user experience. I am using technology for better health outcomes. Jessica Chan Bookkeeper Coordinator Jessica joined SJS Canada as a bookkeeping coordinator back in October 2025. Her role with SJS Canada involves managing bookkeeping functions and preparing financial reports for the board in a timely manner. Jessica is a Chartered Professional Accountant and has 3+ years’ experience in public practice specializing in US tax and Canadian tax. She made the switch and went into industry a couple of years ago and is now working as Manager of Financial Reporting for the health authority on Vancouver Island. Jessica was born and raised in Toronto, but she met her husband and moved to the west coast to start a family and a new career. In her spare time, she loves practicing yoga and going for hikes with her family. Jenna Mistry Patient Support Coordinator TBA Mawish Masud Volunteer Coordinator I serve as a Volunteer Coordinator with SJS Canada, where I recruit, onboard, and support volunteers to ensure meaningful and positive engagement. I maintain structured systems to track volunteer roles and hours, collaborate with program leads to align volunteer resources with organizational needs, and help organize appreciation initiatives that strengthen retention and morale.With over six years of experience in operations and quality within automotive and service environments, I bring expertise in ISO 9001 compliance, internal audits, vendor development, and process improvement. My background in documentation management and cross-functional coordination allows me to build efficient, well-organized systems that support both people and programs. I am committed to fostering strong community relationships while delivering structured and results-driven support. DanaHufe Marketing and Communications Coordinator Dana is a passionate writer and dedicated teacher who has spent significant time living and working in Europe before making Toronto her home. She has extensive global experience in communications within the Rare Disease space, and has previously worked in content writing and design across nonprofit, education, and corporate spaces. Dana strongly believes in the power of communication in inciting change and raising awareness about critical healthcare issues. She is excited to use her skills to contribute to the SJS Canada team, and strives to improve her understanding of the challenges faced by those living with SJS/TEN. In her current role, Dana is responsible for the social media presence, email communication, and outreach for the organization. Dana hopes to connect patients, families, and healthcare professionals, fostering a supportive network that facilitates education and advocacy. Sarah Ahmed Community Outreach Coordinator TBA Advisory Committee Karen Worthy PhD, MPH, RN, CNE, CNEcl Dr. Karen Worthy is a Professor at the University of South Carolina College of Nursing. Dr. Worthy has a 28-year history in professional nursing and has been a nurse educator for 19 years. She received... Read More 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)... Read More 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... Read More