New York – The Hereditary Disease Foundation will be participating in an historic meeting of Pope Francis with individuals and families with Huntington’s disease on Thursday, May 18, 2017 at the Vatican. This special audience with Pope Francis brings international attention to the tremendous suffering of people affected by Huntington’s disease throughout the world and particularly in South America.
Attending this landmark meeting is Nancy Wexler, PhD, President of the Hereditary Disease Foundation, an organization dedicated to finding treatments and cures for Huntington’s disease and other brain disorders.
Dr. Wexler says, “Even today, men, women and children with Huntington’s disease in South America and around the world are hiding in the shadows. This audience with Pope Francis will shine a bright light on Huntington’s disease and help dispel the stigma and fear that multiplies the suffering of patients and families. We are honored to participate and deeply grateful to Pope Francis and the Vatican.”
Huntington’s is a hereditary disease causing an irreversible decline in control over movement, mood, and memory. It is caused by a single dominant gene. Each child of a parent with Huntington’s has a 50% risk of inheriting the same lethal gene. There is no cure and it is fatal over a 10 to 20 year period. Huntington’s usually strikes between the ages of 30 and 40, though children as young as two and adults in their eighties may develop symptoms. People in the late stages of the illness require enormous assistance. They lose the ability to walk, talk, and feed themselves, but are still often conscious, aware and know themselves and their families.
Among special invitees to the historic visit with Pope Francis are Sir Michael Rawlins, FMedSci, MD, a distinguished Huntington’s researcher, advocate and supporter of the Hereditary Disease Foundation. Also invited is Margot de Young, MD, who together with the Hereditary Disease Foundation, created and has directed a clinic and nursing home in Maracaibo, Venezuela for Huntington’s patients.
The Vatican meeting is organized under the auspices of HDdennomore, a global coalition of patient advocates dedicated to raising awareness of Huntington’s disease and ending the stigma and shame that surround the disease. www.HDdennomore.com
The Hereditary Disease Foundation and the Venezuelan HD Families
Since 1968, the Hereditary Disease Foundation’s mission is to discover and fund innovative, catalytic research towards curing Huntington’s disease and impacting other brain disorders. Beginning in 1979, Dr. Wexler has led the international team of researchers working with Venezuelan Huntington’s disease families. Venezuela has the world’s highest prevalence of Huntington’s disease. Dr. Wexler and her team have assembled a family tree encompassing more than 18,000 individuals over 10 generations. With the extraordinary collaboration of the Venezuelan families, the Hereditary Disease Foundation has made crucial medical and scientific discoveries. The Venezuelans’ critical contribution allowed the Hereditary Disease Foundation, in 1983, to find the first DNA marker for any genetic disease. A decade later, the Hereditary Disease Foundation discovered the HD gene itself. The Hereditary Disease Foundation’s discoveries launched the Human Genome Project. The Foundation proudly acknowledges and thanks the Venezuelan families publicly for all they have helped to accomplish. They have actually changed the face of medicine today. Dr. Wexler continues her work as a passionate scientist and advocate for treatments and cures for Huntington’s disease. www.hdfoundation.org
Live English Broadcast of Historic Huntington’s Community Papal Audience on
Vatican Radio: http://en.radiovaticana.va/
Live Streaming on Vatican TV: www.ctv.va
Source: Hereditary Disease Foundation
Contact: Myrna Manners, Manners Dotson Group, 718.986.7255