Huntington’s Disease Awareness Month

May is Huntington’s Disease Awareness Month

Huntington’s Disease Awareness Month occurs in May. The Huntington’s Disease Society of America sponsors the event. Huntington’s disease is a fatal genetic disorder. It causes the progressive breakdown of nerve cells in the brain. In addition, it deteriorates a person’s physical and mental abilities. Huntington’s disease has no cure. Further, every child of a parent with HD has a 50/50 chance of carrying the faulty gene that causes HD.

Today, there are 30,000 symptomatic Americans. More than 200,000 are at-risk of inheriting the disease. Many describe the symptoms of HD as simultaneously having ALS, Parkinson’s, and Alzheimer’s diseases. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of Huntington’s disease patients. It is the world’s leader in providing help for today. And it provides hope for tomorrow for people with HD. Wear blue for Huntington’s disease. Personalized Cause offers blue enamel awareness ribbon pins, fabric ribbons, and silicone awareness wristband bracelets. All are available in both a personalized and non-personalized version.

In addition, the color combination purple and blue represents Huntington’s disease. We offer enamel pins in this color combination in both a personalized and non-personalized version.

Wear Blue or Purple and Blue for Huntington’s Disease Awareness Month

All across the globe, you can find events that celebrate HD Awareness Month. This is from advocacy organizations to research institutions and the pharmaceutical industry. HD Awareness Month is a focal point for planned events, celebrations, and outpouring of support for the HD community. A blue ribbon or purple and blue pin helps visually signify recognition of the Huntington’s disease shared fight. In addition, social media messaging prominently features the color blue. It also raises awareness during events such as building light-ups.

Why May?

Of all the days or months, why is HD awareness in May? To explain, we need to travel back to the year 1992. This is just one year before the discovery of the HD gene. This gene was discovered by Dr. Nancy Wexler and her team in Venezuela. It was on May 18, 1992, that United States President George H. W. Bush signed a proclamation declaring May as National Huntington’s Disease Awareness Month. Since then, the next 30 years have seen some of most incredible progress against the disease. This includes from foundational scientific knowledge to novel new therapies. And, in addition, a focus on improving quality of care.

Finding Events and Raising Awareness

Looking for an event near you to get involved with? The best places to start are with HD advocacy organizations. Groups such as HDYO, Help 4 HD, Huntington Society of Canada, European Huntington’s Association, EHDN, HD Reach, and HDSA are all great starting points. Most have planned events. They may be in-person or virtual. Get involved in or have connections to local chapters holding HD Awareness Month activities.

About HD

Huntington’s disease is an insidious, hereditary neurological disorder that causes the gradual deterioration of one’s ability to speak, move, and think. The National Institute of Neurological Disorders and Stroke reports that some 25,000 Americans have Huntington’s disease. Each of their children has a 50 percent chance of inheriting the defective gene that is associated with it.

One of the tragic facts about Huntington’s disease is that it usually manifests in the middle years, after an individual has established a career and a family. The estimated 125,000 Americans who are at risk of developing the disease may spend years anxiously awaiting the appearance of symptoms, such as tics, lapses in memory, and unsteadiness. If an individual develops Huntington’s disease, the resulting dementia, slurred speech, and uncontrollable movements progressively worsen. For those fortunate not to develop the disorder, Huntington’s disease can nevertheless take an emotional and financial toll as they care for stricken loved ones.

Today, patients and their families have just cause for hope. A new era of discovery is unfolding in research on Huntington’s disease. Members of the biomedical research community are aggressively pursuing studies to identify the exact location of the gene associated with Huntington’s disease and to learn how it functions in the body. Finding the gene location and its mechanism of action will allow scientists to possibly correct the defect. This would allow them to conquer Huntington’s disease once and for all. Until scientists achieve these goals, however, affected individuals and families will continue to need understanding and support.