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Stevens-Johnson Syndrome (SJS) is a rare but serious medical condition that primarily affects the skin and mucous membranes. While SJS can occur at any age, many cases commonly occur in children and younger adults. Although rare, the impact of SJS on a child’s health can be life-threatening, making awareness and early intervention critical. Causes and Triggers of SJS in Children One of the primary causes of SJS in children is an adverse reaction to medications. Studies have identified several drugs commonly linked to SJS, including: ●      Antibiotics (e.g., penicillins, sulfonamides, cephalosporins) ●      Anticonvulsants (e.g., carbamazepine, lamotrigine, phenytoin, phenobarbital, valproic acid) ●      Nonsteroidal anti-inflammatory drugs (NSAIDs) (e.g., ibuprofen, naproxen) In addition to medications, SJS can also be caused by infections, particularly Mycoplasma pneumoniae , a bacterial infection that affects the lungs. Viral infections such as herpes simplex and influenza have also been associated with cases of SJS in children. Symptoms and Diagnosis SJS typically presents with vague symptoms, making early diagnosis challenging. It often starts with flu-like symptoms and some early warning signs include: ●      Fever and body aches ●      Painful blisters in the mouth, nose, eyes, and genitals ●      Red or purplish skin rashes that spread quickly ●      Peeling or sloughing of the skin ●      Eye redness and irritation, which can lead to long-term vision problems Since these symptoms can be mistaken for other illnesses, doctors may use a combination of clinical evaluation and skin biopsy to confirm the diagnosis. Treatment Options for Children with SJS There is no single cure for SJS, so treatment focuses on stopping the progression, managing symptoms, and preventing complications. The key steps include: Discontinuing the Trigger  – If a medication is identified as the cause, it should be stopped immediately under medical supervision. Hospitalization  – Most children with SJS require admission to specialized units, such as burn centers or intensive care units, for close monitoring and treatment. Supportive Care  – Management includes pain control, wound care, intravenous fluids, and nutritional support to promote healing and prevent complications. Medication Therapy  – Cyclosporine has shown greater effectiveness in reducing disease severity compared to intravenous immunoglobulin (IVIG) and corticosteroids, which are not generally recommended. Specialist Care  – Given the multisystem involvement of SJS, early consultation with ophthalmologists, urologists, and gynecologists is essential to prevent complications such as lacrimal duct scarring, urethral and vaginal strictures, and long-term functional impairments. Complications and Long-Term Effects Even after recovery, many children experience long-term complications from SJS, including: ●      Chronic eye problems (dryness, scarring, vision loss) ●      Skin sensitivity and scarring ●      Psychological distress, such as anxiety or post-traumatic stress disorder (PTSD) Preventing SJS in Children Since SJS is mostly caused by drug reactions, careful medication use is crucial. If a child has had SJS in the past, avoiding the suspected medication and its drug class with a similar chemical structure is essential. Some genetic tests may help predict SJS risk in certain populations. Raising Awareness for a Rare but Serious Condition Although SJS is rare, its effects can be devastating. Awareness among parents, doctors, and caregivers can lead to earlier diagnosis and better outcomes. Understanding the signs, causes, and treatments is essential. Additionally, HLA genetic testing for drugs with strong associations can help identify at-risk individuals, enabling preventive strategies and reducing the incidence of SJS in children. References Del Pozzo-Magana BR, Lazo-Langner A, Carleton B, Castro-Pastrana LI, Rieder MJ. A systematic review of treatment of drug-induced Stevens-Johnson syndrome and toxic epidermal necrolysis in children. J Popul Ther Clin Pharmacol. 2011 Mar 21;18(1):121-33. Ferrandiz-Pulido C, Garcia-Patos V. A review of causes of Stevens–Johnson syndrome and toxic epidermal necrolysis in children. Archives of disease in childhood. 2013 Dec 1;98(12):998-1003. Forman R, Koren G, Shear NH. Erythema multiforme, Stevens-Johnson syndrome and toxic epidermal necrolysis in children: a review of 10 years’ experience. Drug safety. 2002 Nov;25:965-72. Lucia L, Silvia C, Paolo B, Roberto B, Fabio C, Francesca S, Francesca M, Giuseppe C, Fabrizio F, Carlo C. Clinical features, outcomes and treatment in children with drug induced Stevens-Johnson syndrome and toxic epidermal necrolysis. Acta Bio Medica: Atenei Parmensis. 2019;90(Suppl 3):52. White KD, Abe R, Ardern-Jones M, Beachkofsky T, Bouchard C, Carleton B, et al., SJS/TEN 2017: Building Multidisciplinary Networks to Drive Science and Translation. J Allergy Clin Immunol Pract. 2018 Jan-Feb;6(1):38-69. Chang WC, Abe R, Anderson P, Anderson W, Ardern-Jones MR, Beachkofsky TM, Bellón T, et al., SJS/TEN 2019: From science to translation. J Dermatol Sci. 2020 Apr;98(1):2-12.

Every February, Rare Disease Month brings attention to conditions that affect only a small percentage of the population. Although these diseases are rare, they still have a devastating impact on the lives of those affected. One such condition is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN)—two rare but severe skin reactions that require urgent medical care.  While SJS/TEN is life-threatening, it remains largely unknown to the public and even under-recognized in the medical community. This lack of awareness contributes to delayed diagnoses, mismanagement, and a struggle for adequate research funding. This Rare Disease Month, we’re shedding light on the importance of recognizing and supporting those affected by SJS/TEN.  How Rare is SJS/TEN?  SJS/TEN is one of the rarest life-threatening medical emergencies, affecting an estimated 1 to 2 people per million per year. Despite its rarity, the condition has a high mortality rate, with up to 35% of TEN cases being fatal, and patients often face lifelong complications.  Unlike many rare diseases that are present from birth, SJS/TEN can happen to anyone at any time. It is most often triggered by medications, including antibiotics, anticonvulsants, and allopurinol. Because SJS/TEN does not have a single genetic or hereditary cause, it is impossible to predict who will develop it, making prevention challenging.  Another alarming aspect of SJS/TEN’s rarity is the limited experience many doctors have in diagnosing it. Since the condition is so uncommon, many cases are initially misdiagnosed as common viral infections, allergies, or other skin conditions, leading to delays in stopping the triggering medication, which is a key factor in survival.  The Hidden Challenges of Rare Diseases  Being diagnosed with any rare disease can feel isolating, and SJS/TEN is no exception. The rarity of the condition creates several challenges for patients and healthcare providers, including:  1. Delayed Diagnosis and Treatment Since most doctors do not encounter cases of SJS/TEN often, early symptoms like fever, sore throat, and eye irritation are often mistaken for another condition. By the time the skin symptoms appear, the condition has already progressed, making early intervention difficult.  2. Limited Research and Awareness  Compared to other diseases, SJS/TEN research receives little funding. Since the disease is rare, clinical trials are limited, making it harder to find effective treatments. More research is needed to:  ● Identify better treatment options beyond supportive care.  ● Develop early warning tests for those at risk.  ● Improve long-term rehabilitation and mental health support for survivors. 3. Lifelong Health Complications  For those who survive SJS/TEN, the journey does not end with recovery. Many patients experience permanent complications, including:  ● Chronic eye problems, including severe dry eye, scarring, and even blindness. ● Skin sensitivity and scarring, sometimes leading to disfigurement.  ● Psychological distress, including PTSD and anxiety, due to the traumatic experience.  These long-term effects make post-recovery support essential, yet few resources exist to help survivors reintegrate into their daily lives.  Looking Ahead: Hope for the Future  While SJS/TEN remains rare, there is hope for better prevention, treatment, and awareness. Advances in pharmacogenetics have already identified genetic markers—such as HLA-B*1502—that can help predict a person’s risk of developing SJS/TEN when taking certain medications.  Additionally, increased research into drug safety and adverse reactions has the potential to reduce the number of new cases. By implementing stronger screening measures and improving early recognition, fewer people may develop SJS/TEN in the future.  However, more work still needs to be done. Advocacy efforts by patients, healthcare providers, and researchers are essential to ensuring that SJS/TEN is properly recognized, diagnosed early, and treated with urgency. Why Rare Disease Awareness Matters  SJS/TEN may be rare, but for those affected, it changes everything. This Rare Disease Month, we encourage people to take a moment to learn about SJS/TEN, support rare disease research, and help amplify the voices of those living with conditions that often go unnoticed.  The more we educate, advocate, and support those with rare diseases, the closer we come to a world where no one faces these conditions alone.  REFERENCES  Marks, M. E., Botta, R. K., Abe, R., Beachkofsky, T. M., Boothman, I., Carleton, B. C., ... & Phillips, E. J. (2023). Updates in SJS/TEN: collaboration, innovation, and community. Frontiers in Medicine, 10 , 1213889.  Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases, 5 (1), 39.  Desai, S., Yasmeen, N., Amgoth, N., Rama Rao, A., Vidhya, B., & Ragaswetha, J. (2022). A glance on medication triggered rare disease—Stevens Johnson syndrome as global challenge in healthcare system. Impending Inquisitions in Humanities and Sciences (ICIIHS-2022) , 484-486.  Cavero-Carbonell, C., Gimeno-Martos, S., Gras-Colomer, E., Páramo-Rodríguez, L., Alfaro, A., & Zurriaga, O. (2016). Stevens-Johnson Syndrome: identification of the risk factors in a rare disease. European Journal of Public Health, 26 (Suppl 1), 376.  Rzany, B., Mockenhaupt, M., Baur, S., Schröder, W., Stocker, U., Müller, J., & Schöpf, E. (1996). Epidemiology of Erythema Exsudativum Multiforme Majus, Stevens-Johnson Syndrome, and Toxic Epidermal Necrolysis in Germany (1990-1992): Structure and Results of a Population-Based Registry. Journal of Clinical Epidemiology, 49 (7), 769-773.  Lee, H. Y., Walsh, S. A., & Creamer, D. (2017). Long-term complications of Stevens-Johnson syndrome/toxic epidermal necrolysis (SJS/TEN): the spectrum of chronic problems in patients who survive an episode of SJS/TEN necessitates multidisciplinary follow-up. British Journal of Dermatology, 177 (4), 924-935.

What Exactly is Stevens-Johnson Syndrome? Stevens-Johnson Syndrome (SJS) is a rare but serious disorder affecting the skin and mucous membranes, often triggered by a reaction to medication or infection. This condition causes the skin to blister and peel, forming painful lesions. If left untreated, SJS can lead to life-threatening complications, including infection and organ damage. You might wonder how SJS differs from other skin conditions. SJS is characterized by its sudden onset, typically beginning with flu-like symptoms before the skin reaction occurs. Often-affected sites include the mucous membrane surfaces of the mouth, eyes, and genitals, making it a medical emergency requiring immediate care. Who is Affected by Stevens-Johnson Syndrome? SJS is rare, affecting about 1 to 2 people per million each year. It can occur in individuals of all ages, but some people are at higher risk than others. Certain medications, such as antibiotics, anticonvulsants, and allopurinol are common triggers. People with HIV, a weakened immune system, or a genetic predisposition are also at higher risk. Recognizing the Signs and Symptoms of Stevens-Johnson Syndrome The early signs of SJS can easily be mistaken for common illnesses. Flu-like symptoms such as fever, cough, and sore throat often appear first. However, within days, a painful red or purplish rash develops, spreading across the body. This rash quickly turns into blisters, causing the skin to peel and leave raw areas exposed, which can lead to infection. Other symptoms include: ●            Red, sore eyes that may be sensitive to light ●            Swelling and crusting around the lips or mouth ●            Difficulty swallowing due to sores in the mouth and throat If you or a loved one experiences these symptoms, especially after starting a new medication, seek medical attention immediately. What Causes Stevens-Johnson Syndrome? SJS is often triggered by medications, with antibiotics, anticonvulsants, and pain relievers being the most common culprits. Infections like pneumonia or herpes can also cause SJS in some cases. Although rare, SJS may occur in individuals with genetic markers that make them more susceptible to adverse reactions. The body’s immune system plays a role in SJS by mistakenly attacking healthy skin cells, leading to the characteristic rash and blisters. How is Stevens-Johnson Syndrome Diagnosed? Diagnosing SJS can be challenging because its early symptoms mimic other conditions. A specialist, such as a dermatologist, will examine the skin and mucous membranes and may perform a skin biopsy to confirm the diagnosis. It's crucial to seek care from medical professionals experienced in managing SJS, as it requires urgent treatment. Does Stevens-Johnson Syndrome Mean I’ll Always Have Skin Reactions? Once someone has had SJS, they are at higher risk of developing it again if exposed to the same medication or trigger. For this reason, it's essential to avoid the suspected trigger and wear medical alert bracelets to inform healthcare providers of the condition. Living with SJS can be difficult, but recognizing the condition early and avoiding known triggers are key steps in managing it. Reviewed by: Dr. Bruce Carleton References Schwartz, R. A., & McDonough, P. H. (2013). Stevens-Johnson syndrome: A review of the literature. Journal of the American Academy of Dermatology , 69(1), 32-42. Mockenhaupt, M. (2011). Stevens-Johnson syndrome and toxic epidermal necrolysis: Clinical patterns, diagnostic considerations, etiology, and therapeutic management. Seminars in Cutaneous Medicine and Surgery , 30(4), 255-261. Harr, T., & French, L. E. (2010). Toxic epidermal necrolysis and Stevens-Johnson syndrome. Orphanet Journal of Rare Diseases , 5(1), 39. High, W. A., Roujeau, J. C., & Stern, R. S. (2008). Stevens-Johnson syndrome and toxic epidermal necrolysis: Pathogenesis, clinical manifestations, and management.  Dermatologic Clinics , 26(4), 579-593.

What's SJS? What is Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) SJS is a rare, severe skin condition brought on by an adverse reaction to a medication. Countless drugs can precipitate SJS, but the most common medications include non-steroidal anti-inflammatory drugs (e.g. ibuprofen), antibiotics (e.g. penicillins), anticonvulsants (e.g. phenytoin), and allopurinol. SJS can affect anyone taking medications but typically targets those under the age of 30. SJS starts with flu-like symptoms and is followed by a painful rash that spreads over the body, blisters, and peels. SJS and TEN are differentiated by the proportion affecting the entire body. When less than 10% of the entire body is involved, it is recognized as SJS; over 30% is called TEN. Without an early diagnosis, SJS/TEN can lead to systemic bacterial infections, pneumonia, multiple system organ failure and death. The risk of death for SJS is approximately 1-5%, and for TEN 25%-35%. However, survivors of SJS/TEN have life-long complications affecting their eyes, hair, genitourinary tract, and more. While there are no definitive documented statistics on the effects of SJS/TEN within the Canadian population, there are over 50 known cases nationwide, including children, teens, adults and elders. The cases include both males and females of a variety of races. Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are severe skin reactions often triggered by medications or infections. They involve widespread skin detachment and mucous membrane involvement, leading to significant morbidity and mortality. SJS and TEN represent different degrees of severe, acute, life-threatening mucocutaneous reactions mainly resulting from drugs. SJS/TEN causes the skin to become red and purple, tender, and peel away from the body. These diseases affect not only the skin on the external surface of the body but also the moist lining of the mouth, nose, eyes, genitals, and other body parts. Both conditions are considered a medical emergency that requires hospitalization and patient management is usually provided in intensive care units or burn centers. Recovery can take weeks to months, and there are numerous long-term sequelae. Medications are the major precipitating cause and some drugs have a greater genetic risk factor. Newer treatments include safe anti-inflammatory biological injections like Etanercept. WOMEN are nearly 1.5x more likely to experience SJS/TEN than men. SJS/TEN AFFECTS 1-7 cases per million patients. Additional Information about SJS / TEN: Definition of syndrome A life threatening disease with blistering of the skin and eroding of mucous membranes (eyes, mouth, genitals). Cause 80% are caused by an identifiable drug, 20% are unknown. Drugs are varied but anti-seizure medications, sulfonamides and allopurinol are top of the list. Qualifiers of the syndrome The severity of SJS to TEN depends on the amount of skin involved (can be 100%) and all patients with SJS/TEN will need to be treated in an Intensive Care. The term SJS is used when the blistering of the skin involves less than 10% of the total body surface area. The term TEN is used when the blistering involves more than 30% of the body surface area. The term SJS/TEN overlap is used when there is blistering that covers between 10 to 30% of the body surface area. Impact on patients' quality of life Depending on the stage many patients will die. For the 80% who survive there are life-long medical, physical, and psychological traumas that persist. Treatment Early treatment is life-saving. Different stages might need different treatments. Intensive Care Burn Centers are optimal. Therapies include immune modulators like corticosteroids, anti-TNF (e.g., Etanercept) biologicals, and amnion for eye involvement. Prevalence rates in Canada Perhaps 1 to 2 per million Canadians will be afflicted per year. Some Facts The condition is rare so it might be missed. Delay is a risk for a poor outcome. There are genetic tests for some patients that might help reduce the risk. Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis are two rare, acute, but life-threatening skin conditions. Both conditions are usually allergic reactions to medication, however; in some cases, the causes remain unknown. Approximately 1-7 people per million are affected globally each year Here is a summary of their long-term effects: 1. Skin and Mucous Membranes: Scarring: Severe scarring and pigmentation changes can occur, especially in areas where the skin has detached. Dryness and Sensitivity: Chronic dryness and sensitivity of the skin can persist, requiring ongoing dermatological care. Nail Abnormalities: Permanent nail loss or deformities may occur due to damage to the nail beds. 2. Ocular Complications: Chronic Dry Eye: Damage to the tear ducts can lead to persistent dry eye syndrome. Vision Impairment: Scarring of the cornea, conjunctiva, or eyelids can result in vision loss or blindness. Photophobia: Sensitivity to light may persist due to ocular surface damage. 3. Respiratory System: Chronic Respiratory Issues: Damage to the respiratory mucosa can lead to chronic cough, bronchitis, or even pulmonary fibrosis. Airway Obstruction: Severe cases may lead to long-term airway obstruction requiring medical intervention. 4. Gastrointestinal Tract: Esophageal Strictures: Scarring in the esophagus can lead to strictures, causing swallowing difficulties. Malabsorption: Damage to the gastrointestinal lining may result in long-term absorption issues. 5. Genital and Urinary Tract: Strictures and Scarring: Scarring can cause strictures in the urinary tract and genital area, leading to difficulties in urination and sexual dysfunction. 6. Psychological Impact: Post-Traumatic Stress Disorder (PTSD): The traumatic experience and prolonged recovery can lead to PTSD, depression, and anxiety. Body Image Issues: Visible scarring and disfigurement can cause significant distress and impact self-esteem. 7. Neurological Complications: Peripheral Neuropathy: Some patients may experience nerve damage leading to chronic pain or sensory issues. 8. Immune System: Long-term Immunological Changes: SJS/TEN can lead to changes in immune system function, potentially increasing susceptibility to infections or autoimmune disorders. These long-term effects necessitate a multidisciplinary approach to care, involving dermatologists, ophthalmologists, pulmonologists, gastroenterologists, urologists, psychologists, and other specialists to manage the diverse and complex sequelae of these conditions. Regular follow-up and comprehensive care plans are essential for improving the quality of life for affected individuals.

Research Dr. O’Reilly and the research team at the University of Limerick are conducting a survey of Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis survivors. T heir research involves two rounds of surveys aiming to developing a Quality of Life (QoL) outcome measure specific for SJS/TEN patients. Existing general QoL outcome measures do not capture the specific experiences of SJS/TEN survivors; this tool may help more clinicians assess SJS/TEN survivors’ quality of life and identify areas of improvement. How to find out more and participate If you would like to learn more about the study or are interested in participating, please contact Professor Pauline O’Reilly at the Department of Nursing and Midwifery, University of Limerick. You can reach her via email at Pauline.OReilly@ul.ie. Click here to access the complete Research Information Sheet by Health Research Board What is the study about? Survivors of Stevens-Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) face numerous psychological and physiological challenges that significantly affect their quality of life. Many experience difficulties in returning to work and maintaining relationships. A substantial number, approximately 50%, remain hesitant to take medications even five years after their discharge. Feedback from patients, family caregivers, and clinicians indicates that current general quality of life (QoL) measures do not adequately reflect the unique experiences of SJS/TEN survivors. To address this gap, our project aims to develop and test a specific QoL outcome measure tailored for individuals affected by SJS/TEN, which we have named QoLTEN. We have created a draft version of this measure and would like to invite you to participate in a two-round survey designed to evaluate how effectively QoLTEN captures your quality-of-life experiences. Your input will be invaluable in refining this tool to better serve the needs of SJS/TEN survivors. Who is on the research team? This study is led by Professor Pauline O’Reilly from the Department of Nursing & Midwifery at the University of Limerick. The research team also includes Professors Sarah Walsh, Saskia Ingen Housz-Oro, Chris Bunker, Roni Dodiuk-Gad, Donal Fortune, Ailish Hannigan, and Ms. Sheila Ryan. Together, they are dedicated to advancing our understanding of quality of life for survivors of SJS/TEN. Who can participate? We are inviting adults who had SJS/TEN to take part in the two round online survey. What does it involve? Participants will be invited to take part in a two-round survey, with each round taking approximately 20 minutes to complete. The survey will be conducted online using GDPR-compliant software (Qualtrics). If you consent to participate, you will receive a link to the first survey, which will include the QoLTEN measure along with some additional questionnaires, including a brief demographic survey and two other quality of life assessments. Two weeks later, you will receive another link to repeat the process, allowing us to incorporate any feedback you provided into QoLTEN. The insights gathered from this study will be instrumental in finalizing the development of the QoLTEN measure. If you choose to participate, your name will be entered into a draw for a voucher or gift as a token of appreciation. What are the benefits? We hope that QoLTEN will provide significant benefits to patients diagnosed with SJS or TEN in the future. This initiative represents a practical step towards addressing the unique needs of SJS/TEN patients and has the potential to enhance care by aiding clinicians in assessing their condition and developing appropriate treatment plans. Furthermore, QoLTEN aims to facilitate communication between clinicians and patients, enabling more meaningful discussions about how the condition impacts their lives. What are the risks? There are no known risks associated with this research project. Participation in this study is entirely voluntary. If at any point you decide that you no longer wish to participate, you are free to withdraw without any consequences. Your decision to stop participating will be respected, and there will be no negative repercussions for changing your mind. How will data be protected? The Data Controllers for this study are the University of Limerick, Plassey, Limerick. All information collected from the survey will be kept confidential, with password protection applied to each file on the university’s computer systems. The Principal Investigator will securely store all data, including consent forms. Participants will not have their names attached to any published information; instead, they will be assigned a study ID code. Once the study is completed, all data will be retained for seven years in accordance with the Data Protection Act (2018) and will then be securely erased from electronic sources, including audio files, with any hard copies being shredded. The University of Limerick will not disclose your personal data to any third parties. For more information on Data Protection at the University, please visit www.ul.ie/dataprotection. You can also reach out to the Data Protection Officer at dataprotection@ul.ie or by writing to the Data Protection Officer, Room A1-073, University of Limerick, Limerick. How are the results shared? The data collected from the surveys will be analyzed and compiled by Professor Pauline O’Reilly and the research team. The primary aim of the surveys is to assess how effectively QoLTEN measures your quality-of-life experiences. The findings from this research will be submitted for publication in a peer-reviewed journal. Rest assured, the names of research participants and any identifying details will not be included in any publications. STUDIES ON GENETICS A research titled: – STUDIES ON GENETICS conducted by: Dr. Bruce Carleton Chair, Division of Translational Therapeutics Faculty of Medicine University of British Columbia As per Dr. Carleton, the central theme of his research program, Pharmaceutical Outcomes and Policy Innovations (POPi), is the study of drug therapy with the goal of improving human health and quality of life. He is interested in developing models for evaluating drug effectiveness, medication use models designed to improve patient health, and effective surveillance systems to improve the safe use of medication. He also has an interest in the clinical management of patients who experience serious adverse drug reactions. You can learn more about Dr. Carleton’s research program by emailing him at the email address listed below. FOR DETAILS ABOUT THIS RESEARCH PROJECT: Please email: bcarleton@popi.ubc.ca Survivors and family members of Stevens-Johnson Syndrome & Toxic Epidermal Necrolysis are encouraged to get involved

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