Living in the Light™ is a patient advocacy initiative that utilizes the potency of fine art photography, compelling written narratives, engaging film making, impeccable design, and specialty programming to educate and motivate the biotech and medical industries about the realities of living with a rare disease or life-limiting health condition and the effect it has on families, communities, and daily life.

No matter who the patient is, it is the entire family that receives a diagnosis— everyone is affected in some way. We understand this, and our approach is poised to honor and accommodate the families and affected individuals we have the privilege to meet and the responsibility to document. Our work reflects a high degree of fidelity and mutual vulnerability, engaging the viewer in an authentic experience of connection that shifts the focus from patient to Person.

Since our founding in 2012, telling these stories has been our sole focus. It is what we are most passionate about and what we do best. To date, we have interviewed and photographed over 600 families living with over 80 different rare conditions around the world, including various types of muscular dystrophy, leukodystrophy, lysosomal storage diseases, genetic heart disease, rental disease and rare forms of cancer.

We are driven by our mission of empowering individuals affected by rare diseases to advocate for their needs. In doing so, we help our partners form lasting relationships with these families, patient advocacy organizations, and other industry leaders who are dedicated to developing new therapies with the potential to treat a broad range of rare diseases and related conditions.

Statement on Diversity : We recognize that systemic racism, ableism, poverty, as well as discrimination toward genetic differences, indigenous peoples, LGBTQ+ or gender non-conforming, and members of the undocumented community all contribute to global health crises. We seek to dismantle these models of oppression by ensuring that cultural, racial, and socioeconomic diversity remain central to our process and are made more visible. Our team is comprised of artists, advocates, activists, parents and allies, who work to highlight the intersectionality between advancements in the life sciences and the needs of marginalized people. We are not perfect, but in the face of an imperfect and unfair world, we do our best to strive for equity.

Land Acknowledgment : We acknowledge that the land upon which we work, live and raise our families is the traditional homeland of the Nipmuc Tribal Nation, who are the People of the Fresh Water. This land was seized and taken through intentional acts of violence, forced removal and deceit. Today, as the beneficiaries of these past actions, we wish to name our awareness of this dark history and recognize the unceded territory of the Nipmuc and nearby Pocumtuc, as well as the Massachusett and Wampanoag to the East; the Mohegan, Narragansett, Schaghticoke, and Pequot to the South; the Mohican and Mohawk to the West; and the Abenaki and Pennacooks to the North. These Native peoples and their descendants are still living among us. They have not gone and we welcome the return and growth of their families, communities and culture. 

We strive to continue learning from our indigenous neighbors and doing what we can to support the preservation and return of their traditions and ways of life. We encourage you to get to know your own indigenous neighbors, to learn their stories and better understand their needs. To learn more about some of the Native-led groups local to our area of western Massachusetts please visit: Ohketeau Cultural Center; No Loose Braids and The Nolumbeka Project.