For one day a year, the colours blue and purple boast more than their beautiful colour, they broadcast awareness, across Niagara Falls. For the past two years, the falls have broadcast these colours to represent Huntington's (HD) and Juvenile Huntington's Disease (JHD), a rare inherited brain disorder.
May is HD awareness month, and for the third year in a row, Niagara Falls will be lit up in May. While this event literally sheds light on this devastating disease, it also is how WeHaveaFace.org president, Cindy Moore celebrated her daughter Erin's birthday for the past two years on May 18th. This year the falls will light up blue and purple again at 10:00 PM on May 20th, on what would be Erin's father's birthday. He passed away at the age of 53 after suffering from HD.
I would like to say, "We all know someone suffering from this horrible disease." However, that is not the case. The reality is, not many people in Canada are probably aware of Huntington's disease unless they watched the season of 'House' where the character 'Thirteen' went through learning she had Huntington's. Other than that, rare genetic disorders are not something a person thinks about every day.
Except us; those of us who have tested positive for HD/JHD, those of us caring for someone with the disease, those of us who care enough to speak out about it and so on. For one night out of the year, we ask you to look at the colours blue and purple as more than just colours, but the colours worn by those with HD and JHD.
Just one night out of the year, Google the disease and read a few facts. Just one night out of the year, watch someone's video diary on Vimeo or YouTube about his or her experience with the disease. Just one night, take the time to learn our faces, our names, and our stories, because we may be just a handful that makes up society, but we are strong, and we are brave, and we are more resilient and stubborn than most people need to be in life.
Other locations across Canada will also light up for HD/JHD throughout the month of May.
For more information on HD/JHD visit www.WeHaveAFace.org.