Illinois Chapter - HDSA fights to spread awareness

This month the Illinois Chapter of the Huntington’s Disease Society of America launched their “Turn Chicago Blue” for HD awareness campaign. The Illinois Chapter of the Huntington’s Disease Society of America is teaming up with the ‘City of Broad Shoulders’ to advocate for Huntington’s Disease.

“We are not re-inventing the wheel with our campaign. We have seen the results a great visual idea can produce to advance a cause and we’re using it to introduce Chicagoans and the world to this rare and always fatal disease.” says Danielle Karlson-Perrott, Co-Chair of Turn Chicago Blue campaign and IL Chapter volunteer board member of the HDSA.

Huntington’s Disease, or HD, is one of the most researched and studied neurological and hereditary diseases in the world. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Many describe the symptoms of HD as having ALS, Parkinson’s and Alzheimer’s – simultaneously. HD is triggered by one mutated gene and over 1500 families in Illinois and over 30,000 people throughout the United States suffer with this debilitating, life-taking malady. It is estimated an additional 250,000 people are at risk for inheriting the mutated form of the gene. Most people have never heard of HD as it probably does not affect their family. We would like to change that by making more people aware of the disease and by supporting HD families throughout the United States.

“We have no Lou Gehrig as an advocate for us (ALS or Lou Gehrig’s Disease), no Michael J. Fox (Parkinson’s Disease), or Glen Campbell (Alzheimer’s Disease), yet each of those neurological diseases are very similar to HD: they all affect a portion of the brain causing premature death. All of those diseases are well known. Yet the research discoveries in HD may in fact help to find a treatment for each of them.” says Dave Hodgson - Co-Chair of the Turn Chicago Blue campaign and former volunteer for the IL board.

HDSA was founded in 1968 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications in 1967 when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families. In 2009, the month of May was declared by the Act of U.S. Congress as Huntington’s Disease Awareness Month. Our goal is to turn businesses and homes across America blue during the month of May 2015 in honor of those who suffer with HD and their families.

If not you, then who will champion the HD cause for the families that suffer physically, emotionally, and financially from this devastating disease? We encourage residents of all communities to get involved. Please sign our petition! A downloadable Turn Chicago Blue campaign flyer and the link to our petition can be found at the following web sites: www.hdsa.org/il