On Thursday, Pope Francis will become the first world leader to recognize the growing global burden that is Huntington’s Disease
HD patients in South America, where the disease is most prevalent, will meet with the Pope to raise awareness of the disease. He intends to hold a special audience with hundreds of affected families and more than 30 patient organizations to drive action toward finding treatment of the currently incurable disorder.
HD, a hereditary brain disorder, has symptoms including involuntary movements, as well as cognitive and mental health challenges. Patients with the disease experience damaged nerve cells, causing various parts of the brain to deteriorate.
“Recognition by Pope Francis is an important step forward for the HD community especially given the influence of the Catholic church in South America,” said Elena Cattaneo, Senator for Life, Italian Senate, and professor at the Department of Bioscience and Center for Stem Cell Research, University of Milan.
“On May 18, HD patients, caregivers, researchers, students, advocates, industry, church leaders and servants, politicians and citizens willing to learn more and contribute will come together to shine a light on a disease that has been hidden for far too long,” she continued.
In addition to the Special Audience with Pope Francis, the HDdennomore
(pronounced “Hidden No More”) team has organized a series of related events to kick start this worldwide movement, including a learning exchange between representatives from Latin America and Italy’s Gemelli University Hospital, Rome, designed to create a platform where researchers and physicians can share learnings and best practices for the care and treatment of those affected by HD.
“Our hope is that this historic day will trigger further action by the political, medical and religious communities of every faith so that we may create lasting positive change in the lives of those affected by this cruel disease,” said Charles Sabine, HD patient, advocate and Emmy Award-winning news producer and correspondent. “Huntington’s disease needs to be hidden no more.”
The event will take place in Aula Paolo VI in Vatican City, Rome. from 9:30-1pm in Rome (3:30-7am EST), and will be livestreamed through the Vatican YouTube
channel starting at 11 am CEST. Those interested can visit hddennomore.com for more information.
RDR also previously reported on the Pope’s meeting with families affected by HD on May 8