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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Celebrate May: It’s Healthy Vision Month

hvm_home_imageThere is much to celebrate in May: Memorial Day, Cinco de Mayo, and Mother’s Day probably come to mind quickly. What you might not know is that this month is Healthy Vision Month, a health observance established by the National Eye Institute (NEI), one of the National Institutes of Health (NIH). Healthy Vision Month is designed to elevate vision as a health priority for the entire nation.

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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…]

A National Summit on Eye Health: June 20 in Washington DC

Next week, Prevent Blindness America will host “Focus on Eye Health: A National Summit” in Washington, DC. This event will serve to launch the newly revised public health data on vision and eye health. This summit aims to bring focus to eye health at a critical time of severe reductions in funding for eye health care, research, and prevention. [Read more…]

27th Annual FD Family Day and Conference June 10 in NYC

The Dysautonomia Foundation is presenting its annual Family Day and Conference for families who have been affected by Familial Dysautonomia (FD). Some in our PROSE treatment community have FD, a rare genetic neurological condition that affects the sensory and autonomic nervous systems causing a number of severe health problems including ophthalmologic problems. Each year, the Dysautonomia Foundation, dedicated to research, support, and public awareness of FD, brings together FD families for a day of information sharing, networking, and fun. [Read more…]