Huntington's Disease Society of America
My name is Kim Austin and I am from South Carolina. I became aware of HD in 1996 when my ex-father-in-law was diagnosed. Shortly after my ex-husband started showing signs and was diagnosed in 1999. I know the pain of losing a loved one to this awful disease and I see the pain of their descendants who sometimes live in fear of being at-risk themselves. I firmly believe that a cure is out there in our future. We just have to come together and be strong for each other when someone might need an extra word of encouragement not to forget that.
As I started researching the disease I found that there were very little resources in South Carolina for our family. There were no HD support groups or Centers for Excellence to turn to. A couple of years ago, I began contacting HDSA in an effort to find out how I could get a chapter started here. For those of you who are involved with the HDSA Chapters, you know that you have to crawl before you can walk. So last year, I completed the HDSA peer support group facilitator training and started the Facebook group HD in SC Hope for a Cure. Then at last year’s HDSA Convention, several South Carolinians showed an interest in starting an HDSA Chapter and holding a Team Hope Walk! I was so excited to hear that there were other people out there who were ready and willing to step up and bring HD awareness to SC.
Since then we have had many more wonderful people throughout the state who have stepped up to join in and assist in South Carolina’s first ever HDSA event. We will be holding a Strike Out HD Bowling Bash on Saturday, June 7, 2014. And later this year we will be hosting our first ever Team Hope Walk. My dream is to establish an HDSA Chapter, then a Center of Excellence, but most importantly find a cure.
For those of you who are out there and feel like there’s no one to turn to. YOU ARE NOT ALONE! Each of us are here for sharing information, emotional support, and love as we learn and grow with each other through this terrible but one day curable disease.
All it takes is a willing spirit!