By Matthew Santamaria (firstname.lastname@example.org)
With the Spotlight On A Cure
event coming up, 2018 Miss South Central of Michigan and musician Shelby Lentz took the time to talk about her history with Huntington’s disease (HD) and the upcoming event:
When did you know about Huntington's Disease?
I found out in 2016 after my grandfather was diagnosed. Originally, after my grandfather was diagnosed, I had no idea it was genetic. My father also received a positive diagnosis that summer and my sister also received a JHD diagnosis. It was a very tough pill to swallow, trying to come to terms and understand the disease while you’re grieving the positive diagnosis of three of your family members. After my father and sister being tested, my perspective of the severity of this disease changed quickly.
When did you hear about HDSA’s Michigan Chapter and why did you want to be involved?
I decided to be tested after my father and sister were. I was going out of state for school at the time, so I waited 9 months until I came home for the results. After receiving a positive diagnosis in May of 2017, I went to an HDSA Michigan state conference literally the next day. It gave me a lot of hope and made me want to become as heavily involved as possible. That led to me getting involved in fundraisers and support groups and, ultimately, getting an offer to join the Michigan board last fall. It’s been a true blessing.
What has your experience been with HDSA’s Michigan Chapter?
I am the NYA representative for the Michigan chapter so I focus heavily on building a community of support for youth in Michigan who are at risk, positive, or caring for or living with a loved one with HD. It is so important to have a support system who understands your struggles and that’s why I am grateful to be working with a team who recognizes the importance of this as well.
What should people know about Spotlight On A Cure? What has your experience been there?
It is an amazing event with so much incredible talent and all for a great cause. Last year was my first year attending and it is by far one of my favorite events. I had the honor to be one of the performers and I WILL BE performing again this year as well! It’s the 10th anniversary so it just proves how fun and successful this event is!
What are you currently doing now and your message to the HD community?
In 2017, I released an EP titled “Unbroken”. I am currently working on new music but am still working on the details. Along with that, I’m blessed to be on the HDSA’s Michigan Chapter board. I really have felt so much comfort and therapy in performing my music, sharing my story, and supporting and giving back to others who are walking in the same shoes as myself and my own family.
The Spotlight On A Cure event will be taking place on Saturday March 9th at 7:00 PM (EST) in the Enchantment Hall. For more information, click here.
Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.
To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.
This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at email@example.com