.- Pope Francis’ gathering this week with a group of Huntington’s disease patients was a major inspiration for those seeking to increase awareness and research about the condition.
“In the U.S. this is HD Awareness Month, so we’re working on just telling the story of families affected by Huntington’s disease, and this brings it to a whole different platform,” said Louise Vetter, CEO of the Huntington’s Disease Society of America.
“Really, with Pope Francis setting the tone I think it offers so much hope and inspiration.”
On Thursday, Pope Francis became the first world leader to publically recognize the plight of those suffering from Huntington’s disease, as he welcomed an audience of some 150 people with the condition. The pontiff stayed for nearly an hour after the audience to offer each individual a hug and a greeting.
Huntington’s disease (HD) is an incurable genetic brain disorder characterized by rapid, uncontrollable muscle movement known as chorea. As the disease progresses, it can lead to loss of control over speech and memory, dementia and death.
The gene which causes Huntington’s was discovered nearly 25 years ago, but there is still no cure and relatively limited treatment options.
This is especially true for people living in South America, where prevalence of the disease is almost 1,000 times higher than in the rest of the world and often combined with extreme poverty. Because the disease affects families generationally, they are often caught in a cycle of need.
In 2013, Ignacio Munoz-Sanjuan, a neuroscientist working to develop treatments to fight the progression of Huntington’s disease, traveled to South America to see first-hand the difficulties faced by communities with high numbers of Huntington’s patients, particularly in Venezuela and Colombia.
While there, he noticed that a lot of the help people needed wasn’t related only to the immense difficulties of the…