As part of our Spring issue, HD Insights is proud to recognize and celebrate Huntington’s Disease Awareness Month throughout the month of May. While the fight to treat and eventually cure HD never stops, May is specifically set aside to focus on raising global awareness of the disease and to celebrate all those impacted by HD.
GOING BLUE IN SUPPORT OF HD
All across the globe, you can find events that celebrate HD Awareness Month. 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 helps visually signify recognition of our shared fight, while the color blue is prominently featured in social media messaging or events such as building light-ups.
Of all the days or months, how is it that May was chosen to be the hub of HD awareness? For that, we need to travel back to the year 1992, just one year before the discovery of the HD gene 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, and the tradition began. We have included the full text of that proclamation at the end of this article. Since then, the next 30 years have seen some of most incredible progress against the disease, from foundational scientific knowledge to novel new therapies, and 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, be they in-person or virtual, that you can get involved in or have connections to local chapters holding HD Awareness Month activities.
PROCLAMATION 6438—NATIONAL HUNTINGTON’S DISEASE AWARENESS MONTH, 1992
By the President of the United States of America
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, and that each of their children has a 50 percent chance of inheriting the defective game that is associated with it.
One of the tragic facts about Huntington’s disease is that it usually becomes manifest 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. Once the gene is located and its mechanism of action is exposed, scientists will be able to analyze and possibly to correct the defect, thereby conquering Huntington’s disease once and for all. Until scientists achieve these goals, however, affected individuals and families will continue to need to our understanding and our support.
In order to enhance public awareness of Huntington’s disease and to express concern for those affected by it, the Congress, by Senate Joint Resolution 251, has designated May 1992 as “National Huntington’s Disease Awareness Month” and has requested the President to issue a proclamation in observance of this month.
NOW, THEREFORE, I, GEORGE BUSH, President of the United States of America, do hereby proclaim May 1922 as National Huntington’s Disease Awareness Month. I encourage all Americans to observe this month with appropriate programs and activities.
IN WITNESS WHEREOF, I have hereunto set my hand this eighteenth day of May, in the year of our Lord nineteen hundred and ninety-two, and of the Independence of the United States of America the two hundred and sixteenth.
GEORGE H. W. BUSH