By Jamie Arnette
If you want to support an event that makes a profound difference in people’s lives, then the Huntington’s Disease (HD) Walk and Bike-A-Thon is the event for you. The HD Walk and Bike-A-Thon is on Saturday, April 24.
There is a 5K walk/run/golf cart option on a predetermined course that begins and ends at the Train Depot. Participants can walk, run, or ride a golf cart on the 5K route. There are also two bike rides available for those who participate in the bike option. Bike rides include a 20K (13.3 miles) ride and a 65K (40.4 miles) ride that also begins and ends at the Train Depot.
The registration to participate is $30 per person for the 5K walk/run/golf cart and 20K events and $40 for the 65K event. Donations are also welcomed and accepted, and individuals and businesses may become event sponsors when they donate ($50 for personal sponsors and $100 for business sponsors).
Sponsors who submit their sponsorship a week before the event will get their name on a sponsor board and on the event t-shirt.
Participants can register or donate online at southcarolina.hdsa.org/bikeathon2021 or register at First Baptist Church’s office. Participants can also register on the day of the event at 7:30 a.m.
All funds raised will to the Huntington’s Disease Society of America (HDSA).
You may ask, “What is Huntington’s Disease (HD) and why should I want to support it?” There are many diseases which are similar to Huntington’s Disease, such as Alzheimer’s Disease, Parkinson’s Disease, and Lou Gehrig’s Disease (ALS). Alzheimer’s, Parkinson’s and Lou Gehrig’s Disease are all horrific, debilitating diseases and many families have experienced their devastating impact.
Can you imagine how devastating it would be to have all the symptoms of Alzheimer’s, Parkinson’s and Lou Gehrig’s in one disease? Huntington’s Disease has the symptoms of each of these diseases in one disease.
Huntington’s Disease is a genetic disease that is passed from a parent to their children. The child of a HD parent has a 50/50 percent chance of inheriting the disease. In some families, every child inherits the devilish disease.
Onset of HD typically begins in the prime of a person’s life (in the mid 30’s); however, onset can begin in early childhood. Families may have several members battling HD at the same time, which results in financial, physical and caregiving stress. A person with HD struggles with uncontrolled movements, mood swings, walking, talking, eating, and thinking.
In early onset, people often mistake a person with HD as being intoxicated because of their slurred speech and awkward movements. In later stages, a person with HD becomes completely dependent, unable to communicate, swallow, dress themselves, walk, or even stand.
One of those in the community battling Huntington’s Disease is the family of Kathy Arnette.
She has been battling the disease for 17 years and is completely dependent on a large group of caregivers.
One group of caregivers includes ladies from First Baptist Church who have nurtured and “spoiled” her for the last 11 years. These caregivers include Diane Gooden, Cindy Herring, Connie Johnson, and Jean Norris. Other ladies also have helped to give Kathy excellent care during the last 17 years.
When you support the HD Walk and Bike-A-Thon, you give hope and resources to those battling Huntington’s Disease. Since the HD Walk and Bike A-Thon began, some wonderful things have taken place in South Carolina. South Carolina is now an HDSA Affiliate, and South Carolina opened it’s first Huntington’s Disease Center of Excellence in Columbia in 2015.
A second HD Center of Excellence was opened at MUSC in Charleston, SC and there is the hope of a third Center of Excellence opening in Greenville, SC.
The HD Center of Excellence offers wonderful and compassionate care to Kathy and many others in their fight against HD.
They provide Education Days to help HD patients and their caregivers adjust to the ever-changing demands of HD.
There are a number of support available for HD patients and caregivers in Columbia, Charleston, Greenville and Online. These are essential resources for families battling HD.
Unlike many other diseases, there are few resources available for Huntington’s Disease.
HDSA provides education and support for families and caregivers. HDSA also keeps HD families aware of research studies available to patients.
Currently there is no cure or treatment for HD. Unfortunately, two of the most promising research studies were discontinued in March 2021.
Despite the devastating news of those studies being terminated, other research avenues are still emerging. When you support the HD Walk and Bike A-thon, you give hope to families that would otherwise have no support or avenues of care. For more information about Huntington’s Disease, visit HDSA.org.