Contributed By Tess Williams
On Thursday January 24th, Monk’s Coffee Shop downtown was packed wall to wall with people drinking coffee, listening to live music and comedy, eating delicious baked goods and entering a raffle for some great prizes from local businesses including Abi-Haus, The Leaf, and Betty and June. Monks holds an open-mic night every Thursday, but this night was a special one.
The coffee shop was hosting a fundraiser for Huntington’s Disease organized by McMurry women’s social club Alpha Psi Alpha, spearheaded by AYA member and Monk’s barista Kaitlin Klarer. Klarer said she has wanted to do a fundraiser in Abilene for quite a while, but has been apprehensive, not only because there is no Huntington’s Disease Society of America chapter in Texas, but also because of her very personal connection to the disease.
Klarer’s mother passed away from HD in December of 2009. When she finally decided to make it happen, the support for the event overwhelmed Klarer. $700 was donated to the Huntington’s Disease Society of America (HDSA) that night, and “there’s still people asking if they can give me checks,” Klarer said. The event has also brought personal connections for Klarer. On some advertising for the event was a picture of Klarer with her mother and a description of Huntington’s Disease, which remains without a cure. She knew that “having a picture connected to the cause is what makes people care.” By bravely connecting herself personally to the cause of curing Huntington’s Disease, Klarer and the girls of AYA got many people in the McMurry community and beyond invested in the event and in learning about the devastating disease. She has also, through this event, connected with someone in the community who is living with Huntington’s Disease. She hopes to be able to continue to provide support to those living with Huntington’s Disease and raising awareness. Kaitlin Klarer sits on the National Youth Alliance Committee for the Huntington’s Disease Society of America and regularly attends conferences and networks with others who are passionate about finding a cure for Huntington’s Disease.
If you’d like to learn more about Huntington’s Disease and how you can help raise awareness, go to the Huntington’s Disease Society of America’s website at hdsa.org.
What is Huntington’s Disease?
Huntington’s Disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complication. Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it on to each of their children. Presently, there is no effective treatment or cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD. Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.