Huntington’s Disease Walk & Bike-a-Thon: Supporting Courage and Compassion in the Battle against Huntington’s Disease
Written by Jamie Arnette - Pearl of the Pee Dee Pedal Pushers is sponsoring a Walk or Bike-A-Thon fundraiser for Huntington’s Disease on Saturday, April 29. Kathy Rowell heads up the Pearl of the Pee Dee Pushers fundraiser, and she is inviting everyone to support this effort to raise funds to help families in their fight against Huntington’s Disease (HD). 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 option will be a 5K (3.2 miles) walk around a predetermined course beginning at the train station. Two bike rides are available for those who participate in the bike-a-thon option: a 10-mile ride and a 15-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. Participants can register or donate online at www.Eventbrite.com by searching for "City of Dillon or Pearl of the Pee Dee" 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 light 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).
Huntington’s Disease (HD) is a rare devastating genetic disease that robs a person of their independence, including his or her ability to perform the most basic tasks such as eating, walking, and speaking. HD is often referred to as "The Dancing Disease" because of the awkward swaying movements a person makes when walking. Occasionally, symptoms are misdiagnosed as alcoholism or as other muscular or psychiatric diseases. The Huntington’s Disease Society of America (HDSA) has pushed for greater awareness and accurate instruction in medical training regarding HD. Early symptoms of HD can be very subtle, typically beginning in a person’s mid 30’s. However, the disease can manifest itself in young children and older adults. Every child with a parent who has Huntington’s Disease (HD) has a 50% chance of inheriting the dreaded gene. Currently there is no cure for HD, though the push for a cure continues. Battling HD takes a financial, physical, mental, and spiritual toll on families and caregivers. Complicating the disease’s demands is the reality that many children of parents of HD often begin developing symptoms of the disease while still caring for their ailing parents.
Despite the horrific impact HD has on those who are confronted with the ravenous disease, those who combat HD and those who care for people with HD portray remarkable courage and compassion. Notable people who have experienced HD include Woody Guthrie (folk musician), Charles Sabine (NBC journalist), and Trey Gray (drummer for Brooks & Dunn). Tragically, Woody Guthrie, who had a profound impact on music legends Bob Dylan, Johnny Cash, Bruce Springsteen, John Mellencamp, and Harry Chapin, was misdiagnosed by an ill-informed medical community as being an alcoholic and having schizophrenia. Guthrie’s second wife, Majorie, asked Guthrie to leave their home because she was afraid of his aggressive behavior (a characteristic of HD) and later divorced him. When Woody Guthrie was correctly diagnosed with Huntington’s Disease, Marjorie Guthrie began a campaign of awareness to help medical professionals and others better understand the disease. Her efforts resulted in what is now known as the Huntington’s Disease Society of America (HDSA). Charles Sabine and Trey Gray continue to use their influence to promote HD awareness and to push for a cure.
Two local families impacted by HD and who exhibit tremendous strength and courage are the families of Kathy Arnette and Karen Massengale. Kathy is the daughter of Jimmy Herring, who passed the diseaseto his daughter. She was diagnosed with the HD in 2004 and has continued to be an example of suffering with grace and joy. The other family impacted by HD is the family of Karen Massengale, whose father, Ron Shanks, is currently in a healthcare facility in Indiana. Ron discovered he had the dreaded disease shortly after Kathy Arnette was diagnosed in 2005.
While both of these families have courageously fought the battle with HD, the local community, local churches, and family members have displayed godly compassion. For instance, a group of ladies from First Baptist of Dillon have provided care for Kathy Arnette for nearly seven years. Many others have given prayer support and displayed sincere compassion. On one occasion while visiting a busy Cracker Barrel, Kathy asked her husband, Jamie, to take her to the restroom. Seeing the large crowd and realizing the impossibility of taking his wife to the restroom, Jamie was uncertain as to what to do. Two older ladies with canes observantly offered to escort Kathy to the restroom. Jamie protested saying there is a risk she could fall and cause them to fall also. Without hesitation, these two unknown ladies grabbed Kathy’s arms and escorted her into the restroom. Meanwhile, Jamie, knowing the risk, prayed everyone would return safely. Another account of compassion was mentioned recently in a news article describing how a waiter at IHOP actually fed one of his customers who contends with HD. He fed her, not once, but many times over a five year period. There are many other examples of courage and compassion in the lives of those with HD and those who care for them. To find out more, visit www.hdsa.org, or search Huntington’s Disease videos on Google. Join the team of the courageous and compassionate and walk or ride for a cure for HD.