Where are Dorey and Yolanda today?
Dorey and Yolanda are still very much in the grieving process. When Leanndra passed away two years ago, it left an enormous void in their hearts and in their day-to-day lives. For 16 years, their entire lives were dedicated to caring for their children. Now that they are gone, they need to find a sense of purpose and rebuild their lives.
It’s still hard for Dorey to leave the house as he considers what to do in the future. Yolanda is devoting her life to her work in the hopes that it will bring renewed meaning to her life. They both still attend medical and genetic conferences around the reservation, advocating for genetic research within their community. They hope that if geneticists can identify the specific gene connected with XP, there may one day be a test that will help people understand whether or not their children will be at risk of having XP.
Has the film screened in Navajo communities?
The film has screened once on the reservation, and unfortunately we weren’t able to attend. But Tina, an XP mom who is also in the movie, was there with her family and was pleased with the audience’s response. The screening gave a human face to XP, which is otherwise still an undocumented disorder on the reservation. Audience members asked Tina questions about her life with XP, and we understand a discussion took place around the different themes the film raises, including the tug of war struggle between Navajo healing ways and western medicine, and the different taboos surrounding the Long Walk.
We hope to have and attend many more screenings on the reservation, increasing awareness of XP and creating a discussion around the themes of the film.
What is the latest research concerning treating and detecting XP?
The latest research deals with the skin manifestation of XP but not the neurological components. In a new study, XP patients are given a skin lotion containing a viral protein that simulates the action of the protein that XP patients lack. When the lotion is rubbed into the skin, the viral protein enters skin cells. It is hoped that this will result in the skin cells temporarily becoming more like normal cells, so that they repair UV damaged DNA better, resulting in reduced sunburns and skin cancer.
Currently there is no lab in the US that is able to detect and identify the XP gene and samples are sent to Europe to be diagnosed.
What are you working on next?
Maya Stark: This time around, I am working on a project in my neighborhood of Williamsburg, Brooklyn. In the heart of my neighborhood there are a few delis and businesses that are owned by Palestinians, and a couple of others that are owned by Israelis. My film will explore the very unique way in which these long time adversaries are able to communicate, talk and be friends, in part due to their shared status as foreigners in America. I’m also developing a project about the growing issue of illegal immigration in Israel, focusing on the children of Filipino families who work in Israel. The children who were born and raised in Israel speak Hebrew as their first language, but the Israeli government has decided to deport these families and their kids, many of who have never been to the Philippines, and now have to adjust to a whole new reality.
Adi Lavy: I’m working on a photography project titled “Once Upon a Sea” which documents the massive geological destruction that is occurring in the Dead Sea region. The Dead Sea is a no man’s land, and as a result of years of neglect by the Israeli and Jordanian governments, the destruction is rapidly progressing and the sink holes are evident everywhere. Environmentalists claim that the Dead Sea is "dying" as the water that used to feed it is diverted for industry and agriculture. If things continue, as they are, in less than 50 years, the Dead Sea as we know it will be gone for good. This project is a contemporary portrait of the Sea, documenting those who frequent it while admiring the new beauty of the land, which is revealed beneath its ruins.