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…]

Keratoconus Patient-Education Seminar in Florida

The National Keratoconus Foundation (NKCF) will be presenting a keratoconus education seminar in Fort Lauderdale, Florida, on May 5 for keratoconus patients and their family members. [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…]

Telephone Education and Support Group for Coping with Chronic Graft Versus Host Disease

In our previous post, we talked about types of support groups, why you might consider one, and how to locate and evaluate the available choices. Here is a great support opportunity for our community members with chronic GVHD.

The National Bone Marrow Transplant Link (nbmtLINK) is offering a free 4-week Telephone Education and Support Group on four consecutive Tuesdays starting April 10, 2012 through May 1, 2012 from 7:00 – 8:15 pm (EST) for survivors and caregivers who are coping with the late effects of chronic Graft versus Host Disease (cGvHD). [Read more…]

Kids’ Creations Wanted to Support the SJS Foundation

The Stevens Johnson Syndrome Foundation, dedicated to promoting awareness and education about this devastating illness, is sponsoring a children’s art contest this month. The contest is open to children ages 3 to 18 years old who are SJS survivors or their family members. Children are invited to submit colorful creations on any theme of their choice. [Read more…]

Willard Traub Exhibits Recovery at Boston Photographic Resource Center

Photographer and BFS patient Willard Traub, who was featured in the December PROSE Eye View e-bulletin, is again exhibiting his Recovery series in Boston. This series by Mr. Traub chronicles his journey of cancer diagnosis, bone marrow transplant, and recovery in a collection of photographs and poems that successfully capture his reflections of hope and healing. Recovery will be shown at the Photographic Resource Center in Boston as part of a Global Health in Focus exhibition that highlights critical global health issues through documentary photography. [Read more…]

Get Fit and Support the Sjögren’s Syndrome Foundation

The Sjögren’s Syndrome Foundation is seeking participants for its 2012 Team Sjögren’s:  a training program to help prepare and support team members to run a marathon (26.2 miles) or half-marathon (13.1 miles). This year’s team will run in the 2012 Country Music Marathon and Half-Marathon in Nashville, Tennessee, on April 28, 2012. [Read more…]

National GvHD Health Symposium

Of interest to our community members with GVHD and their families and caregivers is the upcoming 2011 National GvHD Health Symposium on Friday, November 4, in Cleveland, Ohio.

This all-day informational event will focus on the most recent research related to the causes, treatment, and management of GvHD. Two tracks will be presented: one for BMT survivors and their families and caregivers and the other for health-care professionals for which continuing education credit will be offered. [Read more…]

Keratoconus Seminar in Chicago

For those of you living in or near the Chicago metro area, the National Keratoconus Foundation (NKCF) is hosting a free educational seminar on November 13, 2011 where you will be able to learn more about keratoconus and the current treatment options available. You will also have the opportunity to meet with others whose lives have been affected by keratoconus. A complimentary continental breakfast will be provided. [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…]