The Utah Chapter of the Foundation Fighting Blindness is honored to have a very dedicated volunteer on our board – Sarah Eliason.
As a mother of two young boys with juvenile retinoschisis, Sarah felt she needed to be active in promoting awareness and generating funds for research. X-linked juvenile retinoschisis (XLRS) is a rare hereditary disease of the retina. XLRS affects males and is most commonly diagnosed in childhood. The gene for this disease is located on the X chromosome, so females typically are unaffected, but can pass the gene to their sons, who are then affected by the disease.
The degree of vision impairment can vary greatly. Some boys are only mildly affected, while others are legally blind, and serious complications can lead to complete blindness. Some boys experience a rapid decline in vision early in childhood, while others can keep useful vision into adulthood.
As Sarah began researching her sons’ disease, she found the Foundation Fighting Blindness web site. Inspired by the research and dedication of FFB, Sarah organized a group of individuals with XLRS, their parents, siblings, spouses, and loved ones to help drive research for juvenile retinoschisis. She felt her best source to drive this research forward was through FFB and sent an email to the Utah Chapter asking to volunteer. “We want to do all we can so our boys' visions can have healthy futures,” said Sarah. “We are committed to uniting the medical community to jump start research of X-linked juvenile retinoschisis. The time for generating XLRS-specific research studies is now. With new scientific advances, medical experts can find effective treatments for XLRS.”
Sarah made a website for juvenile retinoschisis (www.fightRS.org) and linked her site to the FFB national web site and a local Utah Chapter site. In the summer of 2008, Sarah traveled to Washington, D.C., with another Utah Board Member, Elaine Winger, for the FFB annual Visions Conference. At the Visions Conference, Sarah served as the moderator for the “Parents of Affected Children” breakout session. Upon returning from the conference, both Sarah and Elaine shared their experiences at a local Chapter meeting in Salt Lake City.
Sarah’s dedication to her children and her determination to find a cure has made a tremendous impact on the Utah Chapter. Families are inspired by her hope and passion. Thank you Sarah for making a difference! |
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