The month of May is Huntington’s disease awareness month. 30,000 people nationwide have the disease and another 150,000 are at risk. Becky Blaine, current board member and former President of HDSA, Utah Chapter and Brian Pratt, current Vice-President of HDSA, Utah Chapter joined ABC4 to speak about the disease and how you might make a difference in the local community.
Huntington's Disease is a progressive, degenerative neurological disease characterized by a loss of motor skills, a loss of cognitive skills and severe involuntary movements. It is a fatal disease and, sadly, it is like having ALS, Alzheimer's and Parkinson's all at once. Patients normally experience forgetfulness, mood changes (sometimes irritability and irrationality), and clumsiness. As the disease progresses the patient will have gait issues, slurred speech, possible involuntary movements and eventually paralysis.
Approximately 400 people are symptomatic and 2600 are at risk in the state of Utah alone. HDSA is an organization dedicated to improving the lives of those with HD. The HDSA is an advocacy group that raises awareness and provides support and education. For the local Utah chapter, a day of education is coming up this Saturday, May 18th for families affected and those interested in learning more. The HDSA always hosts the Team Hope Walk and carnival in the Fall, with other possibly fundraisers in the Summer.
The HDSA needs support and is greatly underfunded. Donations to utah.hdsa.org will ensure that Utah people are helped first. The money goes to social workers, support groups and research. With potential treatments around the corner, you can donate now and within months you’ll see headlines where your dollars have made a difference. Solving Huntington’s Disease holds the key to solving so many other diseases: ALS, Alzheimer's and Parkinson's and even cancer.