October 9 is World Sight Day

NABIf you ever needed a platform from which to take action on behalf of eye health, here is a wonderful opportunity to become involved in this effort. October 9, 2014 marks World Sight Day, sponsored by Vision 2020, a global initiative seeking to eliminate avoidable blindness.  [Read more…]

My SJS Care Week 2014

This post was written by Mariam, an SJS survivor from Chicago. She has been attending SJS patient events at BFS for four years. 

survivors with proclamation at BBQI arrived in Dedham, MA around four in the afternoon, exhausted and worn down from my long trip from home. We checked in, dropped off our luggage, and waited. That period between arrival and meeting other SJS patients and their families is one filled with anticipation. I sat there on my bed thinking about how our first meeting and how the rest of the week would play out. Who would I meet? Who did I already know? And most importantly, what could I learn this time around? My family and I have been to four SJS Care Weeks and with each trip I left with something new. I left with new friends, new support systems, new tips and tricks concerning lenses and general medical care. When the time came, I got up and walked down the hall, nervous about what I would see behind the “SJS CARE WEEK” door.  I did find something when I opened that door- and that was love.

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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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National Symposium for Blood and Marrow Transplant Survivors

Symposium-Banner_2014_webIf you or a loved one is a survivor of a bone marrow, stem cell or cord blood transplant, please join us for a weekend of learning, sharing and celebration. Celebrating a Second Chance at Life, hosted by the Blood and Marrow Transplant Information Network (BMTinfonet.org), is a two day event, with expert presenters from cancer centers all over the country. This year’s symposium will be held in East Rutherford, NJ, about 10 miles from Manhattan.

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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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You Will Be Missed, Dr. Johns!

This month we said goodbye to Dr. Lynette Johns, who left BFS to pursue a teaching opportunity. Doctor Johns joined BFS in 2005 as an optometrist working beside BFS founder Dr. Perry Rosenthal. Among her many achievements during the last eight years, she provided compassionate care to more than a thousand patients, co-authored 15 publications and presentations on PROSE treatment and educated hundreds of doctors from around the world. [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…]

Free Museum Teaches All About Eyes

Many of us who live with serious eye health issues are well versed in the details of our diagnosis. We are all too familiar with the symptoms that plague us, the standard treatment methodologies, and the latest research on our conditions. However, sometimes what we miss in our knowledge are the basics. [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…]

National Family Conference for Ectodermal Dysplasias July 19-21 in Orlando

Last month, we celebrated Ectodermal Dysplasias Awareness Month and we wanted to be sure to let you know about the upcoming 31st Annual Family Conference for Ectodermal Dysplasias taking place July 19-21 in Orlando, Florida. [Read more…]