Awareness Can Lead to Action: SJS Awareness Month

Imagine keeping vigil all alone at the hospital bedside of your 10-month-old as she struggles to survive. You’ve just been told by medical staff that she has developed a severe disease that you have never heard of and you are unable to find any substantial information about this illness. You are grief-stricken and do not even know where to turn for support or information. [Read more…]

Stevens Johnson Syndrome Foundation Asks for Support for Mandatory Reporting System of Drug Reactions

SJS ribbonThe Stevens Johnson Syndrome Foundation is reaching out to our BostonSight® PROSE community to ask for help with promoting a citizen petition to the Food and Drug Administration (FDA) for a Mandatory Reporting System of Adverse Drug Reactions. This is a great and easy way to add your voice in support of a cause that is important to so many in our BFS community whose lives have been impacted by Stevens Johnson Syndrome (SJS). [Read more…]

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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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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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…]

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…]

The Sjögren’s Syndrome Foundation Needs Your Stories

If you or your family has been affected by Sjögren’s Syndrome, please take a few minutes to share your story with the Sjögren’s Syndrome Foundation (SSF) and lend your voice to their advocacy efforts as they testify on Capitol Hill next week. [Read more…]

April is Sjögren’s Awareness Month

Spring is in full swing across the country this month—a time of renewal and transformation as the days grow longer, temperatures rise, and flowers begin to bloom. The Sjögren’s Syndrome Foundation reminds us that April is also Sjögren’s awareness month with a focus on their new campaign to transform the level of awareness of Sjögren’s syndrome and shorten the time to diagnosis by 50% in 5 years. [Read more…]