We are very fortunate at Factor-H to count on the friendship and talent of amazing individuals working in the visual arts. Over the years, documenting the lives of people with Huntington’s disease in their communities has been essential to our mission – if we can’t capture the humanity behind the disease, the love between kids and parents that persists despite this terrible disease, we can’t remain optimistic about our mission, a more just system for those affected by HD and living on the fringes of our communities. To achieve this, we have worked with an illustrator Matt Rota , street artist DJ Lu Juegasiempre, journalist/film maker Gindel Delgado, and two photographers, Vladimir Marcano and Charlie Cordero, who in their countries, have lent their talent to help with our mission. Artists perceive the world around us in different ways, and with their strokes, their spray paints, and their lenses, they enable a wider perception of the problems – and the solutions – that have brought us together. We are indebted and honored to have such wonderful, passionate, and humane photographers sharing their talent with us.
Few things compare to the power of an image, a moment in time that captures the essence of a life, or of the toll the disease takes, or of the hope in the face of a child, or of the the strength of the afflicted individuals trying to live their lives as best as they can.
The portraits of the individuals whose lives we are striving to impact positively, might be those of children hoping for a chance of a better future, or of a late-stage patient being cared for by their kids, or their parents.
Images that capture the reality of death, but also the reality of love and the resilience of our humanity.
Below are a few images that I thought capture the spirit of our friends in Colombia and Venezuela. The images convey purpose, love, strength and the fate of people affected by HD. We are warmed by their love, compassion, and spirit.
Let these photographs be the motivation we need to continue on our quest to bring hope and dignity to every person affected by this disease, no matter where they live.