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…]

Sjögren’s Syndrome Foundation Aims to Shorten Time to Diagnosis

The Sjögren’s Syndrome Foundation (SSF) has recently launched a campaign with the goal of reducing the time to diagnose Sjögren’s by 50% within 5 years. Sjögren’s Syndrome, a systemic autoimmune disorder in which the body’s immune system attacks its own moisture-producing glands, affects as many as 4 million Americans with an estimated additional 3 million more cases undiagnosed. [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…]

Lea Morrison: A Winner on Many Levels

At age 32, Lea Morrison, had recently gotten married and was looking forward to starting a family with her husband. At this time, Lea did not know that over the next four years she would learn just how important her eyes were in communicating deeply with those around her. It was during this year of her life that she received shocking news from her doctor: Lea was diagnosed with chronic myelogenous leukemia (CML). [Read more…]

White Cane Day Event in Massachusetts

To commemorate International White Cane Day, the Massachusetts Commission for the Blind invites you to join them in celebration on Friday, October 14, at the Grand Staircase of the State House in Boston (intersection of Beacon and Park Streets) from 10:00am until Noon. White Cane Day promotes increased awareness of the significance of white canes and the importance of pedestrian and motorist laws to improve the safety of people with impaired vision who use long canes and guide dogs for greater mobility. [Read more…]

World Sight Day in October

If 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 13, 2011, marks World Sight Day sponsored by Vision 2020, a global initiative seeking to eliminate avoidable blindness. [Read more…]

A Call for Sjögren’s Syndrome Ambassadors

Sjögren’s Syndrome is certainly not a condition that most people have heard about, yet it affects the lives of many of our patients here at BFS. The recent announcement by tennis star Venus Williams that she has been diagnosed with Sjögren’s Syndrome may help to increase awareness of this disorder. Williams sought treatment for many of her symptoms, which included joint pain, hand swelling, dry eyes and mouth, numbness, fatigue, but received numerous misdiagnoses before now. Estimates indicate that nearly four million Americans have Sjögren’s, yet only one-fourth of them have been accurately diagnosed. Williams’ experience and these statistics highlight the great need for increased awareness and improved diagnosis of this life-changing condition.

Sjögren’s Syndrome is a chronic autoimmune disease that is characterized by dry eyes and dry mouth. This condition is systemic and can cause dysfunction in other organs as well, such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Extreme fatigue and joint pain may also be present. Although there is no cure for Sjögren’s, symptoms can be managed through medical treatments and lifestyle adjustments to improve quality of life and prevent complications.

Currently, the Sjögren’s Syndrome Foundation is reaching out to local communities across the U.S. to promote awareness of this disease. You can help make a difference in your own community by becoming an Awareness Ambassador. If you are interested in learning more about this exciting program, please contact Kathy Ivory at the Sjögren’s Syndrome Foundation (by phone at 800-475-6473, extension 213, or by email at kivory@sjogrens.org). Help spread the word and make Sjögren’s Syndrome a household name.

 

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…]