By Nicci Johnson
May is Huntington’s Disease Awareness Month.
Huntington’s Disease, or HD, is a genetic brain disease that causes nerve cells in the brain to break down, deteriorating a person’s physical and mental abilities.
Two local women whose families have been altered due to this disease are on a mission to use their voices to raise awareness.
23-year-old Megan Osowski watched her father battle HD for about six years until he died in 2013.
Osowski’s dad was diagnosed with the disease when he was 44-years-old. After his diagnosis, she began raising awareness about HD with the help of Huntington’s Disease Society of America.
Osowski uses her story to educate children, teens, and young adults who might be at risk of getting the disease.
Osowski says, “There’s a juvenile onset as well. It’s rare. It’s even more rare than our typical expression of Huntington’s. So it affects roughly 40 thousand people in the United States and there are 200-thousand of us at risk so.”
EJ Garner is also an advocate for HD Awareness and is a former chair person for the Huntington’s Disease Society of America.
Garner’s family has also been impacted by the disease. That’s why she stresses the importance of The HD Parity Act which is a bipartisan Bill that HDSA is trying to bring before congress. The bill would ensure Medicare is made available to people with HD immediately after qualifying for disability.
Garner says, “If passed it will waive the two year waiting period for Medicare coverage for those with HD. If you think about it, 2 years is along time to be waiting for financial support.”
As of right now there is no cure for the disease.
Osowski is hosting a virtual walk that’s taking place May 22. You get to choose your own course in your own home, driveway, neighborhood or local park.