Tragedy is thrown our way to give us a purpose. Doing my part to find a cure for Huntington’s Disease is mine.
During my birth, my mother displayed some abnormal movements that soon were determined to be Huntington’s Disease. Because she was adopted at birth, nobody in our family was aware she was even at risk for this horrible disease. While growing up, my dad and I took care of her full time until eventually we could not safely leave her side. At that point we made a decision to put her in Ingleside Nursing Home in Mt. Horeb, where they took wonderful care of her. On March 2nd 2013 she lost her long battle with this disease on the evening of the HDSA Re-Prom in her honor. Her memory will forever live on and we will not give up the fight against this disease.
In 2014, with my wonderful husband by my side, I took the genetic test and learned I am free of this awful disease, and our son Greyson will never have to live in fear.
Huntington's Disease (HD) is a devastating, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington’s Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood. HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50-50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals “at risk” elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington’s Disease and its effects upon different individuals. By continuing to increase our investment in both clinical and basic HD research each year, breakthroughs in treatment – and a cure – will be forthcoming.
Save the date for Saturday March 2nd, 2019 as we host yet another memorable evening at Madison's Monona Terrace. Dinner. Drinks. Dancing. FUN.
Peter and I are hosting four HDSA Team Hope Run/Walks in 2018. Milwaukee, Madison, Eau Claire and the Fox Valley.
The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $10 million for the cause.