The week of Gratitude day, 23rd of March, has seen an inclusion of community events inside the HD communities of San Luis and Barranquitas. The celebration of the partnership between scientists and HD families has taken an unexpected turn this year and also became a celebration of the history of these communities who gave so much to the scientific enterprise. At Factor-H, one of our key goals is to illuminate and keep alive the historical memory of the incredible contributions of the Venezuelan families to the field of HD research. HD families have been stigmatized for generations and there is a collective need to honor the lives of those passed to this devastating disease. By honoring – and not hiding- the historical legacy of these communities, we seek to generate a collective sense of pride, and the inclusion of new generations of at-risk and affected individuals, in their communities’ well-being.
One event that took place in Barranquitas this year was a candle light vigil to honor the lives of those lost to Huntington’s disease. Below is a video showing scenes from this beautiful event, accompanied by the words of our dear colleague Marina González de Kauffman, president of Habitat LUZ.
The Night of the Candles
Marina González de Kauffman
That night began with the images of familiar faces of family and friends from Barranquitas, who
left a long time ago… or not so long ago, and were arranged on the street in the form of giant
and nameless photographs, product of the “magical eye” of Vladimir Marcano.
The impact that the photographs had on the people who at six in the afternoon busily
distribute the fish to sell and some other that gather around to have a chat, was very
impressive. Motorcycles passed from one side of the street to the other, as did pedestrians. The
workers on the cargo trucks carrying the loads of fish and crab, passed by murmuring and made
those move slowly. The main images were someone’s father, mother, son, daughter or friends
and of course they were only identified by their nickname, since the given name does not matter
much in Barranquitas and almost no one knows it.
Finally, it became completely dark and people waited patiently, gathering in the street, while we
improvised lighting because the public street lights did not turn on, or were insufficient. The
emergency lights, which came from everywhere, and a powerful light for filming saved the
moment. Then, after having toured the exhibition at our own pace, we all gathered together to
explain its meaning and that of the “Night of the Candles”. Until that moment, the “Night of the
Candles” was our idea… but, I am sure that from that moment on it will be an event that will
continue every year promoted by the community.
Love and friendship, the many memories and everyone’s need to honor those who were no
longer here, silently surrounded us and united us all. These feelings moved the
girls, who weave in our macramé workshop, to offer a dance inspired by music that reaffirmed
the hope of a life, beyond death. The people passing by respected our meeting and diverted
their vehicles to go the other way towards the beach.
When the girls finished their dance, we were 50 people or more that, with candles in hand,
began the route marked by the photograph’s exhibition to conclude at a “fishing beach” on the
shores of the Lake, where the boats were already lined up, to spend the night. There was a lot
of wind and the Lake displayed strong waves while the moon, almost full, not only illuminated our
arrival but also the giant images around the place of the final meeting and the fishermen who
were preparing their fishing gear for the next day.
There, the representatives of the various religions began their prayers and songs and each of us
hugged our neighbor without letting go of the candles. It was a sublime moment, full of love and
great emotions, that did not need more words or explanations than the closing that the girls did
with their dance full of spirituality, while we all moved the candles, symbols of eternity, high
and slowly saluting to the heavens.
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