Empowered Patient Coalition

Knowledge is power. That’s a statement we’ve all heard many times but age and life experiences often reveal the truthfulness of this trite expression. In particular, knowledge can be extremely powerful when someone is confronted with a serious or life-threatening health condition.

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September is Blood Cancer Awareness Month

I can hardly bleukemia logoelieve it’s September already. Summer vacations are over, kids are back at school, mornings have a chill in the air and the days are growing ever shorter. But September also brings a very important recognition for many of our patients and their families:  it’s Blood Cancer Awareness Month. Although incredible strides have been made in the treatment of blood cancers, every four minutes someone in the United States is newly diagnosed.
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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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Giving Thanks for Hospitality Homes

HospitalityHomesThanksgiving is traditionally a time to give thanks and reflect with gratitude on the many blessings in our lives. We gather with family and friends in celebration as we share a bountiful feast. Here at Boston Foundation for Sight we are thankful for partner organizations that help us fulfill our mission of restoring sight and transforming lives by treating complex corneal disease. [Read more…]

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…]

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…]

Help Raise Awareness of Ectodermal Dysplasias in June

Ectodermal Dysplasia is one of many rare diseases that we see and treat at the Boston Foundation for Sight, which is why we couldn’t be happier that June is Ectodermal Dysplasias Awareness Month! The National Foundation for Ectodermal Dysplasias (NFED) invites you to help celebrate this important month with a theme of: Ectodermal Dysplasias? Don’t Sweat It! Many support and fundraising events have been organized across the country this month and the NFED encourages everyone to get involved in their own communities to educate others about ectodermal dysplasias. [Read more…]

We Went Blue! Did You?

On Monday, we went Go Bold Blue at BFS in support of the Sjögren’s Syndrome Foundation (SSF) and Sjögren’s awareness month. We were clad in blue and denim and helping to educate others about Sjögren’s syndrome as well as share our knowledge of treatments for the dry eye that is one of the hallmarks of this disease. Informational brochures, fliers, and stickers were available in our office.

With the help of matching staff contributions, BFS donated hundreds of dollars to the Sjögren’s Syndrome Foundation. These funds will help support the SSF’s new goal to shorten the time to diagnosis by 50% in 5 years.

Did you go blue? We hope you did as it supported this cause that is important to so many of us in the BFS community. Thank you.