The Huntington’s Disease Association of Ireland (HDAI) is spreading the word about a new documentary that tells the improbable story of Huntington’s disease (HD) families and their cross-continental journey to a Huntington’s gathering that included a meeting with Pope Francis.
The recently released “Dancing at the Vatican” is available for free on YouTube. In addition to the HDAI, the documentary received high marks from Carmichael, an Ireland-based organization that, through training and other efforts, supports nonprofits.
The documentary was written by Emmy award-winning war reporter Charles Sabine and follows several Latin American families who, despite poverty and the isolation caused by Huntington’s, made a trek to Rome in 2017 for Pope Francis’ special audience with members of the Huntington’s community. There, the pope is said to have become the first world leader to publicly recognize the plight of those affected by this disease.
The global gathering of thousands of individuals sought to promote Huntington’s awareness and lift stigmas around the neurodegenerative disorder. Among event attendees were families from Columbia, Venezuela, and Argentina. The HDAI of Ireland also participated.
Prior to the event, physicians, patient associations, and patients from Latin America attended a special meeting held in the Senate chamber in Italy. Doctors from Latin America also met with those from Gamelli University Hospital in Rome to exchange experiences in Huntington’s treatment and care.
“The film comes at a time when the need for HD families to participate in research has never been more important,” Carmichael states in a press release about the film and HDAI’s support, which helped make possible a Dublin, Ireland screening last year.
The documentary chronicles the journey of the Latin American families, some of which had never ventured outside their remote villages. Before the excursion, many family members didn’t have birth certificates, let alone passports. None had been on a plane or travelled abroad, and the disease makes travel, especially long distances, challenging.
The families soldiered on, arriving in Rome for a landmark day.
“This is a beautifully made, powerful, and very emotional film,” Niall Pender, a neuropsychologist and head of the psychology department at Beaumont Hospital Dublin, said in the release.
The trip was put together with the help of Sabine, a disease advocate with Huntington’s. Also assisting were neuroscientist Ignacio Munoz-Sanjuan and geneticist Claudia Perandones, founders of Factor-H, a nonprofit organization that helps Huntington’s patients in Latin America. Pharmacologist and Huntington’s researcher Elena Cattaneo also helped to make the journey possible.
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