May. We began this journey of awareness big time when we went to Rome in May 2017, five years ago, and Pope Francis gave a papal audience for families affected by Huntington Disease and doing “something no other world leader has done before” as the newspaper The Guardian put it. He pronounced the “hidden no more” words that gave to some people a sense of hope and pride they have probably never felt before. You can see our documentary film about this incredible trip on YouTube “Dancing at the Vatican” subtitled in several languages.
Huntington’s disease (HD) is a rare, hereditary, neurodegenerative disease that typically strikes during mid-life, between 35-55 years old, and is characterized by voluntary and involuntary motor movements, behavioral impairment and cognitive decline, leading to complete dependence, and ultimate death after a slow but unrelenting progression over two decades. Every child of an affected parent has a 50% chance of inheriting the mutated gene and therefore developing the disease. There are treatments for some symptoms of the disease (motoric and psychiatric symptoms), but no therapies slow it or prevent their ultimate demise. Factor-H is an American nonprofit organization focused on helping people affected with Huntington disease in Latin America where conditions are even more dramatic, due to the context of extreme poverty many families experience. We work in Peru, Colombia and Venezuela where the HD community was critical in helping to identify the mutation in the gene that causes the disease.
May is the worldwide month to make people aware of Huntington disease and, today, Factor-H joints these efforts to help people understand the disease better, particularly on May 15, and by focusing on the suffering of HD families in Latin America, due to the extremely hard conditions in which they live.
WHAT CAN YOU DO?
First, try to be aware about the campaign #letsTalkAboutHuntington from HDSA. From now on… you will find it in many places, with the color blue as the protagonist.
You can post in Instagram yourself saying “let’s talk about Huntington” or in Spanish “hablemos de Huntington” and using hashtags #letstalkabouthuntington AND #hablemosdehuntington.
Our campaign in Spanish:
If you are in Medellín… on Sunday, May 15, if you can join the Biking for Huntington (ciclovía) event. It will start at Estación Estadio del Metro by 7:30am. You can join our friend Dimitri Poffe (exploreforhuntington) and our supporters. Find out more via WhatsApp number +57-3043578440. The event is organized by the Antioquía University (Universidad de Antioquía), the Liga Antioqueña de Hemofilia, and Factor-H.
You can donate to any organization supporting communities affected by Huntington. If you choose to do so with FACTOR-H, you can do so aquí.