Pope Francis will meet May 18 in the Vatican with patients and others who are fighting Huntington’s disease in what organizers are billing as the world’s largest gathering ever of the Huntington’s community.
The event is part of Huntington’s advocates’ HDennomore global initiative. The phrase, which means Hidden No More, is Mai Più Nascosta in Italian and Oculta Nunca Más in Spanish.
The plight of Huntington’s families in Colombia, Venezuela and Argentina is what inspired the gathering, which will include Huntington’s community members from around the globe, according to a a press release.
Many families from South America, which has one of the highest prevalences of Huntington’s, will meet with Pope Francis on May 18. They hope the high-profile event raises awareness and lifts the stigma associated with the disease.
Scientists identified the huntingtin gene, which causes Huntington’s, almost 25 years ago. It was identified largely thanks to families in Venezuela’s Lake Maracaibo area that agreed to participate in a large-scale study, changing the course of the disease forever.
Nancy Wexler was the geneticist and neuropsychologist whose research led to the gene’s identification. Her research with fruit flies proved that genes are located in specific areas of chromosomes, and that their inheritance is governed by principles first articulated by the Austrian scientist Gregor Mendel in 1866.
Wexler started working on Huntington’s in 1979, when she took her research team to Venezuela to gather genetic information from the world’s largest family with the disease — more than 18,000 members over 10 generations.
The trip was the beginning of a 24-year study of the disease’s genetic origins. Wexler said her father was a major inspiration for her effort. Psychologist Milton Wexler founded the Hereditary Disease Foundation to honor his wife, who died of Huntington’s.
The meeting at the Vatican will start at 10 a.m., although the city-state’s doors will open at 8 a.m.
Anyone with Hungtington’s can take part in the event. If you are unable to attend, there are other ways for you to get involved.
You can read more about the disease and watch informational videos, which you can share, along with photos and other material, at HDennomore infographics.
And you can register for the event here. After you register, you will receive an email confirming your registration.
Travel information — including train schedules, suggested accommodation options, and a map of the event location on the Vatican grounds — is available here.