Founded in 2012, the foundation brings together over 20 countries to fight a rare disease affecting the vision of children and adolescents. This disease, called keratoconus, often times is undiagnosed, and when in the progressive state, the disease often causes legal blindness. Children and adolescents are at the most risk because the disease is most aggressive during pubescent years.
The mission of Project Light for Sight is to eliminate preventable blindness among children and adolescents with keratoconus.
Specifically, Project Light for Sight strives to achieve the following five main goals:
(1) Outreach: To increase awareness amongst patients & families
(2) Education: To increase and improve awareness among healthcare professionals
(3) Partners: To create screening and treatment referral sites
(4) Financing: To provide medical coverage for at-need patients
(5) Research: To investigate, understand and treat the cause.
Down Syndrome (Trisomy 21) children and adolescents have a substantially increased risk for having this disease, and thus, special attention is placed on this population group.
Although keratoconus affects 1:1’500 in the general population, the incident rate among the Down Syndrome population is around 1:67.
Before CXL treatment, the only other method would be to provide a corneal transplant. This particular patient group counts many chronic eye rubbers, which puts a transplant at risk for rupture of sutures and related complications.
The single most promising way of treating this disease is early-detection. Therefore, Light for Sight is striving to educate general ophthalmologists about the disease and current treatment methods (CXL), to encourage parents to have regular eye exams, especially when their children are at high risk (Down Syndrome and eye rubbers), and to build awareness about the disease and symptoms among Down Syndrome medical specialist (and teams).