By Jamie Arnette
The Huntington’s Disease Walk and Bike-A-Thon is on Saturday, April 27. The Walk & Bike ride will begin at 8:00 am at the Town Clock located at the Train Station on MacArthur Avenue and Main St. in Dillon, SC. The walk/run option will be a 5K (3.2 miles) predetermined course beginning at the Train Station. Participants can also ride their golf carts on the 5K route. Two bike rides are available for those who participate in the bike-a-thon option: 15-mile ride and 25-mile ride. The registration fee is $30.00 per person for either event. Donations are also accepted, and individuals and businesses may become event sponsors when they donate ($50 for personal sponsors and $100 for business sponsors). Participants can register or donate online at www.hdsa.donordrive.com/event/1651 or at 7:30 am on the day of the event. Early registration forms are also available at the First Baptist Church’s Office for those who wish to register early. Participants who register early will receive an event t-shirt and a free lite breakfast. Those who wish to donate can also make donations on the day of the event at the Registration Table. All funds raised will go to the Huntington’s Disease Society of America (HDSA). Kathy Rowell, who heads up the Pearl of the Pee Dee Pedal Pushers fundraisers, is inviting everyone to support this effort to raise funds to help families in their fight against Huntington’s Disease (HD).
Most people want to join efforts that make a positive impact in people’s lives. The Walk and Bike A-thon is a movement that is changing the lives of those affected by Huntington’s Disease (HD). Since the first Walk and Bike A-thon in 2015, the state’s first HD Center of Excellence opened at Palmetto Health in Columbia, SC. The Center of Excellence provides necessary and accessible medical care and social networking for families who are fighting Huntington’s Disease. Families fighting HD now have access to help.
One of those who have benefitted from the HD Center of Excellence is Kathy Arnette. She was diagnosed in 2004 and has been waging a courageous battle since then. Kathy has benefitted not only from the Center of Excellence, but also by family and friends who have supported her. One of her greatest sources of support comes from her church, First Baptist. Ladies from First Baptist Church have made it their mission to care for Kathy. These ladies have been providing care since 2011, often spoiling her with snacks and manicures. Only God can repay these wonderful ladies for their ministry of love. Without the support of families, friends and the church, the fight against HD would be impossible. The theme verse for the Walk and Bike A-thon is Deuteronomy 31:6: “Be strong and of good courage, do not fear nor be afraid of them; for the LORD your God, He is the One who goes with you. He will not leave you nor forsake you.” God uses His people as His source of comfort, support, and strength.
There are many heartbreaking stories of people fighting HD. In the documentary, “Alive and Well,” the story is told of a mother with three sons. Her husband began demonstrating symptoms of HD in his 40’s. He was a brilliant city planner; however, he lost his job due to his disability. The disease took a toll on him, their marriage and their family. In the documentary, she said her husband was not the man she married. The disease had ravaged his mind and body. One day, as she was watching her four year-old son ride his tricycle, she noticed he started falling over. The horrible thought ran through her mind that it looked like HD. She was incredulous. But when she had him tested, he was positive for the disease and had a form of the disease called “Juvenile HD.” She immediately became the caregiver for a husband and a four year-old son with HD. This is just one of the many stories of courageous battles with HD.
Many people are curious about Huntington’s Disease, but do not know much about it. The disease is named after a physician named George Huntington. George Huntington was a 22 year-old physician in the late 1800’s who wrote an essay in 1871 that described the disease with an amazing accuracy. Without access to modern technology, he relied mostly on his father’s and grandfather’s insight and experience with the disease to help him understand it. He also met a mother and daughter who were both crippled from the disease. The sight of the emaciated mother and daughter was so disturbing that it left an indelible impression on him. George Huntington became intensely curious about the disease and began writing about it. His essay on Huntington’s Disease was used by other medical personnel to better understand the rare disease.
George Huntington recognized the disease was hereditary, and he observed people with the disease had difficulty talking, walking, eating, and swallowing. One other observation the young physician noticed was the psychological impact of the disease. The disease causes a person to make facial grimaces and have uncontrolled movements, but the disease also changes a person’s demeanor. Tragically, Dr. Huntington observed patients rarely sought medical help because they knew there was no cure. Families battling the disease in the 1800’s and early 1900’s were left hopeless and helpless.
Because of George Huntington’s emphasis on the disease in 1871, the disease was later named Huntington’s Disease, after George Huntington. Since 1871, many strides have been taken to bring hope to families fighting HD. In 1993, the Huntington Gene was identified.
With the discovery of the gene, researchers believed the discovery would one day lead to a cure.
In 2000, researchers were able to treat a Huntington’s Disease mouse. Researchers thought they could stop the disease in mice. To their surprise, they not only stopped the progression of the disease, but reversed the symptoms. This gave hope for a human cure, but none of the efforts were successful in human trials. One HD person said they needed a pill to turn humans into mice.
Currently, there is still no cure; however, clinical trials are being performed at many of the HD Centers of Excellence. There are several promising studies being tested and researchers and the HD community are hopeful for an effective treatment. It is believed other diseases such as Parkinson’s Disease, ALS, and MS may benefit from the breakthroughs in the HD research. Until a cure is discovered, families and friends must continue to fight for a cure and battle the symptoms of this disease.