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…]

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.

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…]

NKCF Presents Educational Seminar in New Jersey

The National Keratoconus Foundation (NKCF) and The Cornea and Laser Eye Institute are pleased to present a patient education seminar for keratoconus (KC) patients and their families and caregivers on December 3 in Teaneck, New Jersey. You will be able to increase your understanding about keratoconus and learn about the latest treatment options from scientists and clinicians who specialize in this field. There will also be ample opportunities to meet others whose lives have been affected by KC. [Read more…]