By: Sheryl Sowell | Category: In Our Communities | Issue: September 2015
Register now as a team or individual to walk the “Hope Walk” to support HD research.
Register now as a team or individual to walk the “Hope Walk” to support Huntington’s disease (HD) research. HD slowly diminishes an individual’s ability to walk, think, talk and reason. Symptoms usually appear between ages 30 and 50 and progress over a 10 to 25 year period. Cases of juvenile HD have been diagnosed in children as young as two years of age. Eventually, a person with HD becomes totally dependent upon others for his or her care. More than 30,000 people in the United States are currently diagnosed with the disease. Each of their siblings and children has a 50 percent risk of developing the disease; therefore 250,000 are at risk. Although medications can relieve some symptoms in certain individuals, research has yet to find a means of conquering or even slowing the deadly progression of the disease.
According to Peggy Kilhefner, coordinator of the Tulsa “Hope Walk,” “A great description of Huntington’s disease is to have ALS, Alzheimer’s and Parkinson’s disease all at the same time.” Peggy’s husband, Paul, was diagnosed with Huntington’s in 2010 at the age of 56. Life with the disease has caused major changes in both of their lives. “In 2011, Paul was struggling with his job and was no longer able to make decisions necessary to manage it, so with the help of his neurologist, the decision was made to start the disability process,” Peggy shares. “When someone with HD walks down the street, others become very aware of their existence, as they perceive them to be drunk. Balance is hard to maintain, speech is slurred, and movements are exaggerated. Parents steer their children (and themselves) away from them. In most cases, it is too much work for others to be friends so friendships are many times dissolved. And HD families are left alone.”
This is where you can help. Support the Huntington’s Disease Society of America through walking (as an individual or a team) or by making a donation. The Tulsa “Hope Walk” will be held Saturday, October 3 at the Floral Haven Memorial Gardens Family Service Center, 6420 S. 129th E. Ave. in Broken Arrow. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. Registration begins at 8:30 a.m. and the walk begins at 9.
Huntington’s disease is a devastating, hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control, and for which there is no cure.
In 2013, HDSA launched a new research initiative with the goal of better understanding HD biology as it occurs in humans. HDSA currently funds 21 Clinical Centers of Excellence across the United States. The new research program will support collaborations between basic HD researchers and the HDSA Centers to address important biological questions in HD patients.
The Hope Walk is HDSA’s largest national grassroots fundraising event, which takes place in over 100 cities across the country and has raised over $6 million since its inception in 2007. Thousands of families, friends, co-workers, neighbors and communities walk together each year to support HDSA’s mission. To volunteer or support the Tulsa “Hope Walk,” please contact Peggy Kilhefner at (918) 607-1517 or email eat0@eau0eav0eaw0
The Huntington’s Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by this disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie, who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at risk in the United States.
Registration for the Tulsa “Hope Walk” is $30 early registration ($10 for children 12 and under) and $40 the day of the walk. Register online at http://hdsa.donordrive.com/event/thwtulsa. “By donating or walking, you are helping provide awareness of Huntington’s disease and fund research to find a cure, or at least an effective treatment to help with this devastating disease,” adds Peggy.
Sheryl Sowell was born and raised in Tulsa, OK. She graduated from Will Rogers High School and received her Bachelor of Arts in English from Northeastern State University in 2007. She has worked for Value News as editor, writer and advertising copywriter since 2008. She enjoys meeting and interviewing people for Value News articles, learning about their backgrounds, and helping to promote their businesses and local events. In her free time, she enjoys reading, trying new recipes and crafts from Pinterest, attending concerts and sporting events, and spending time with family and friends. Sheryl lives in Tulsa with her fiancé Paul, their daughter Scarlett, and their two dogs, Gunner and Boo.
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