THE HELPCUREHD FOUNDATION
Huntington’s Disease is a hereditary brain disorder with no current known cure. There are over 30,000 people suffering from Huntington’s Disease in the United States alone. The disease causes a deterioration in nerve cells, making it difficult to complete everyday tasks- walking becomes difficult, cognition slows, and the individual becomes completely unable to care for him or herself. The HelpCureHD Foundation was created to help those suffering from this neurological disorder as well as helping aid in the journey to finding a cure. HelpCureHD was inspired by Lee Smith, mother to Joe Smith, pitcher for the Cleveland Indians, who was diagnoses with Huntington’s Disease in 2012. Joe and his family have been greatly affected by Huntington’s Disease.
Joe recalls his mother’s journey:
“Prior to the official diagnosis, we saw symptoms of nervousness, coughing spasms, mind racing and deteriorating motor skills, making it harder for her to speak and move smoothly. This was a very difficult and sobering experience for my family, as we had watched my grandma experience similar symptoms causes by HD. My sister and I had watched our grandma suffer through the later stages of HD and saw her lose her ability to drive, take a shower, get dressed, prepare meals. Eventually she was unable to even enjoy a simple walk on a beautiful summer day.
When my mom’s test results came back, it was hard for her to accept her new reality of living with HD. She had devoted so much of her life to caring for her mother as she struggled with the disease, and the diagnosis was a harsh blow for all of us, particularly my mother. The first few months were difficult for my mother and she struggled to cope with the fact that she had inherited this terrible disease for which there is currently no cure. She had to confront the fact that her life would change… and change fast. Our family and close friends came to comfort her and the support from them was overwhelming. Everyone was willing to help.
My mother visited numerous doctors and received many opinions and options. Finding the right combination and dosage of medications proved challenging and led to a variety of complications: making her sleep 12 or 13 hours; simple walks would wear her out; medicines would chap her whole lip area and face. It took about 2 years to get her on the right medications and refine the dosages. Even with the help of the best medications available, my mother must live with the cruel symptoms of HD; memory loss, difficulty with daily tasks, trouble responding in conversation, and slowing motor skills. My mom has been stoic and courageous and simply wants to be there for us as a parent and grandparent.
My sister and I have a 50/50 chance of inheriting Huntington’s Disease. We will deal with that when it comes along.”
Joe and his family have made a commitment to helping those suffering from the disease, “Right now, we are committed to saving our mother and other parents, siblings and friends. Many organizations are searching for cures and we hope that many of the promising studies will produce results in the future. However, for my mom and many others currently living with HD, this may come too late. We are committed to finding ways to improve the quality of life for those living with HD and mitigate the harsh symptoms. That is why my wife, Allie LaForce, and I created HelpCureHD.”
The Mission of Cleveland Clinic is to provide better care of the sick, investigation into their problems, and further education of those who serve. The vision of Cleveland Clinic: Striving to be the world’s leader in patient experience, clinical outcomes, research and education. When Cleveland Clinic welcomed its first patients on February 28, 1921, its mission was clearly in place: “Better care of the sick, investigation into their problems and further education of those who serve.”
Learn more at: https://my.clevelandclinic.org