Living in the Light

Living in the Light is a patient advocacy initiative utilizing the potency of fine art photography, compelling personal narratives, and engaging filmmaking to educate the biotech and medical community about the realities of rare diseases and the unprecedented effect they have on families and daily life. This distinct concentration grew out of an understanding that the rare disease community is comprised of many people and many voices. By shifting the focus from patient to person, Living in the Light presents the dignified and sincere perspectives of individuals and their families as they approach major life challenges. Our work is not simply to record, but to convey the deep resilience, unique wisdom, and profound beauty of people as their journeys unfold. No matter who the patient is, it is the entire family that receives a diagnosiseveryone is affected in some way. We understand this, and our approach is poised to honor and accommodate the families we document. Since our foundin...