Elizabeth De Virgilio wrote -
Hi, my name is Elizabeth De Virgilio, and my husband, Damian, has had nystagmus and an associated condition called ocular albinism since infancy. Although nystagmus takes several forms and is associated with a wide variety of different conditions, it generally refers to involuntary eye movement which usually results in some level of vision loss.
When I first met my husband, I knew nothing about nystagmus and its related conditions. In fact, at first, his abilities and resourcefulness downplayed the impact on his day to day life. However, before long, I grew to see the frustration and adversity faced by someone with this visual impairment which presently cannot be fully corrected. As our relationship evolved towards building a family, I still had many questions and concerns. How can I best prepare for raising children who may have the condition? What resources are available? Then Damian and I became involved with the American Nystagmus Network.
The American Nystagmus Network is a nonprofit organization founded in 1999 to serve the needs and interests of those affected by nystagmus. Though the degree of eye movement and vision loss varies from person to person and may depend on associated conditions, ANN seeks to provide help in coping with nystagmus through the exchange of information and ideas, guidance, and counseling. ANN’s initiatives include a regular biennial conference, a scholarship fund, and an assistive technology grant fund. In addition to being a not for profit organization, ANN’s Board of Directors is 100% volunteer.
The 2013 Newport Jersey City Half-Marathon is my very first attempt at running a long distance race, and I am honored to do so as a means of raising awareness for nystagmus and the American Nystagmus Network. We are extremely grateful for each and every contribution to help us meet our goal. Thank you for taking the time to read about our fundraiser.