Our Mission to Help

After watching Huntington’s Disease (HD), take my grandma’s independence and quality of life, and now seeing my mom affected by many of the same symptoms, I feel a strong sense of urgency to do my part to fight this disease.

My mother, Lee Smith, is 56 years old.  She was diagnosed with HD in February 2012.  Prior to Beginning in 2012, we saw symptoms of nervousness, coughing spasms, mind racing and deteriorating motor skills, making it harder for her to speak and move smoothly. Her symptoms continue to progress since her diagnosis.  This was a very difficult and sobering experience for my family, as we had watched my grandma experience similar symptoms caused by HD. My sister and I had watched our grandma suffer through the latter 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 has to 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.


 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 fiancée, Allie LaForce, and I reached out to the Cleveland Clinic and Dr. Mayur Pandya to discuss ways to enhance the quality of life for HD victims.


We are up for the challenge and going full steam ahead.


The Cleveland Clinic

Cleveland Clinic is a nonprofit multispecialty academic medical center that integrates clinical and hospital care with research and education. Located in Cleveland, Ohio, it was founded in 1921 by four renowned physicians with a vision of providing outstanding patient care based upon the principles of cooperation, compassion and innovation. Cleveland Clinic has pioneered many medical breakthroughs, including coronary artery bypass surgery and the first face transplant in the United States. U.S.News & World Report consistently names Cleveland Clinic as one of the nation’s best hospitals in its annual “America’s Best Hospitals” survey. More than 3,000 full-time salaried physicians and researchers and 11,000 nurses represent 120 medical specialties and subspecialties. The Cleveland Clinic health system includes a main campus near downtown Cleveland, eight community hospitals, more than 75 Northern Ohio outpatient locations, including 16 full-service Family Health Centers, Cleveland Clinic Florida, the Lou Ruvo Center for Brain Health in Las Vegas, Cleveland Clinic Canada, and, scheduled to begin seeing patients in 2015, Cleveland Clinic Abu Dhabi. In 2012, there were 5.1 million outpatient visits throughout the Cleveland Clinic health system and 157,000 hospital admissions. Patients came for treatment from every state and from more than 130 countries. Visit us at www.clevelandclinic.org




Other Huntington's Disease Groups and Information

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To assist NEO people  and families affected by Huntington's Disease to cope with the problems presented by the disease. To educate the public and health professionals about Huntington's disease.


Phone: (269) 629-5452

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