The Hereditary Disease Foundation (HDF) is honored to take part in the historic meeting of Huntington's disease families with Pope Francis at the Vatican in Rome on May 18, 2017. This landmark event brings international attention to the tremendous suffering of HD patients and families throughout the world and particularly South America.
The global HD community coming together with Pope Francis will help dispel the stigma and fear that multiply the suffering of patients and families with HD. By mobilizing action to improve the lives of HD families, we offer hope and sustenance for the future.
Even today, worldwide, men, women and children with HD are still hiding in the shadows. Huntington’s disease is a family disease affecting those with the disease and all other family members.
Families often feel shame and embarrassment about the illness. Its unique combination of symptoms affecting movement, mood and memory attacks our humanity so patients and families face tremendous challenges. In many cases, patients and their families are forced to live on the fringes of society due to fear and misunderstanding.
Nancy Wexler, Ph.D., President of the Hereditary Disease Foundation, will be attending this historic meeting with Pope Francis. Since 1979, she has led the international team working with Venezuelan Huntington's disease families. Venezuela has the world’s highest prevalence of Huntington's disease. Dr. Wexler has 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 HDF’s discoveries launched the Human Genome Project. The Hereditary Disease Foundation acknowledges the Venezuelan families publicly for all they have helped to accomplish. They changed the face of medicine today. Dr. Wexler continues her work as a passionate scientist and advocate for treatments and cures for HD.
Margot De Young, M.D., who, with the support of the Hereditary Disease Foundation, created and directs the Casa Hogar de Amor y Fe, a clinic and nursing home in Maracaibo, Venezuela, has also been invited. The Casa Hogar provides integrated and unique medical care for treating people with Huntington's with love, dignity and respect. Sir Michael Rawlins, M.D., an active HD researcher and advocate, will attend as well.
We are grateful to Charles Sabine, of London, former NBC war correspondent and television journalist; neuroscientist Ignacio Munoz-Sanjuan, Ph.D.; and Elena Cattaneo, Ph.D., distinguished Huntington's researcher in Milano and Lifetime Senator in the Italian Parliament, for organizing this event.
Details for this historic meeting between the Huntington's disease community and Pope Francis are being finalized. Please check www.HDdennomore.com for further developments.