Coming Soon: SJS Care Week at BFS!

We are so excited for our favorite week of the year: SJS Care Week! Beginning on August 5, Boston Foundation for Sight will welcome our Stevens-Johnson Syndrome (SJS) patients and their families for a week of medical treatment and social support.

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Raising the Profile of SJS – Awareness and Treatment

Crowdrise-LogoAnyone who is a survivor of Stevens Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TENS) will tell you that one of the toughest challenges that they faced when diagnosed was the lack of awareness of SJS – within the medical community and beyond.

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Help Make August SJS Awareness Month in Your State

SJS ribbonAs many in our BFS community know, Stevens Johnson Syndrome (SJS) can be a devastating diagnosis with lifelong consequences. Jean McCawley, founder of the Stevens Johnson Syndrome Foundation, knows this firsthand as she held vigil beside her young daughter Julie’s hospital bedside during her struggle to recover from Stevens Johnson Syndrome. Alone and afraid, Jean was unable to find information or support during those early days. She vowed that no parent should have to face this devastating illness without help and has devoted herself to educating, supporting, and advocating for patients and families who have been touched by Stevens Johnson Syndrome.

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FDA Issues Acetaminophen Product Warnings for Stevens Johnson Syndrome Risk

The timing of a recent Food and Drug Administration (FDA) announcement regarding the risk of Stevens Johnson syndrome (SJS) with acetaminophen products couldn’t have come at a more opportune time.  August is Stevens Johnson Syndrome Awareness Month and BFS is committed to help raise public awareness of this life-threatening disease. [Read more…]

Bailey Butler Lives a Full Circle of Life

Life rarely follows a straight path. Twists, turns, and unexpected surprises of all kinds appear along the way. Meet one of our patients whose life journey is taking her in a full circle:  Bailey Butler.  [Read more…]

Rare Disease Support Resources and Rare Disease Day 2013

A rare disease is defined as one that affects fewer than 200,000 Americans. Nearly 7,000 rare diseases impact the lives of almost 30 million Americans. Here at BFS, a number of these rare diseases are very familiar to us and to our patient community. [Read more…]

Proclamations Proliferate for Stevens Johnson Syndrome Awareness Month

We’ve wrapped another fabulous SJS Kids week here at BFS just in time to kick off Stevens Johnson Syndrome Awareness month. Thanks to help from you and from dedicated members of the Stevens Johnson Syndrome Foundation, state proclamations are being approved across that nation to declare August as Stevens Johnson Syndrome Awareness month. [Read more…]

Kids’ Creations Wanted to Support the SJS Foundation

The Stevens Johnson Syndrome Foundation, dedicated to promoting awareness and education about this devastating illness, is sponsoring a children’s art contest this month. The contest is open to children ages 3 to 18 years old who are SJS survivors or their family members. Children are invited to submit colorful creations on any theme of their choice. [Read more…]

An SJS Public Service Announcement from Julie McCawley

Julie McCawley developed Stevens Johnson Syndrome (SJS) at the age of 10 months. It was a harrowing ordeal for her single mother, Jean McCawley, as she had never heard of this disease and was unable to find any information about it. She felt alone, helpless, and afraid as her daughter fought for her life. [Read more…]

Biking for BFS!

Sometimes in life, an event occurs that is so profound it can bring about a sense of personal strength and courage that you didn’t even know you possessed. It might lead you toward trying something you never even imagined you would be capable of accomplishing. Ralf Jarchow, a lawyer from Brampton, Ontario, exemplifies how a life-changing event can be the inspirational spark for reaching far beyond the norm in order to help others. [Read more…]