On Feb. 29, the Concord Campus hosted its third annual march and scholarship fundraiser in support of Rare Disease Day. The event was the brainchild of junior Isabel Bueso, a Sociology major who attends classes at Concord. As a child, Bueso was diagnosed with a rare condition called Mucopolysaccharidosis Type VI (MPS VI), a family of diseases caused by enzyme deficiencies. Only a few thousand people in the world suffer from the genetic disease, which can often stunt growth and lead to numerous side effects including low life expectancy.
That hasn’t stopped Bueso, who plans to go into a career of advocacy for people that have rare diseases. Bueso makes it her mission to live life to the fullest. “Having a condition doesn’t limit you or put your dreams on hold!” says Isabel.
Bueso serves as an active part of the Concord Campus student leadership where she promotes student activities to support the entire student body. In the past year, Bueso served as the keynote speaker at the Make-A-Wish foundation gala, works as a volunteer at Children’s Hospital in Oakland and recently spoke to the United States Congress about the need for additional research to facilitate the development of treatments for rare diseases cures.
Bueso established the Rare Disease Scholarship in 2015. All funds from the yearly Rare Disease Day March support the disabled student scholarship for part-time or full-time students. Many disabled students are unable to attend college full time; and there are few scholarships available for part time students. The scholarship also provides information on accessibility services available to students.
Rare Disease Day started in the United States in 2009, one year after its launch in Europe by the European Organisation for Rare Diseases (EURORODIS). Several hundred events are planned across the United States and Europe on the last Tuesday in February. Cal State East Bay’s Concord Campus hosts a walk-a-thon, simultaneously, on the Concord and Hayward campuses.
Over 100 students, staff, faculty and community members walked to support Rare Disease Day. Their efforts raised over $2,700 to support the scholarship.
To view pictures from the Rare Disease Awareness Walk or to support the scholarship go to http://www.csueastbay.edu/rarediseaseday