By Matthew Santamaria (email@example.com)
There can be a challenge when you first meet someone. First challenge, ask the person out. They say yes and challenge complete. Next challenge, going on dates. You want to dress to impress and always be honest as honesty is a key virtue in life. Danny Miller was honest about his family on the third date.
“Danny explained that Huntington’s disease (HD) runs in his family, on his father’s side, and that there was a 50% probability that he, along with his two sisters Kelli and Kenya, could also have the HD,” said Katie Miller, his wife of over 4 years. “As scary as that was to hear, my heart told me that I could not run away from this; I had to stay and see where this relationship might go.”
She eventually married him but the disease can be scary. This 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. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.
As time went on, Danny decided that he wanted to best tested for HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. There is 5-10% of at risk patients that get tested. He would then find out that the test came back positive. Because of the positive test result, the couple decided not to have children as they do not want to pass the gene down.
“We knew that there was a good chance that it would be positive, but we had crossed our fingers and prayed for a negative result, with no such luck,” Katie explains. “We looked into the research being performed and the clinical trials taking place, but because Danny was not symptomatic at the time he was unable to participate. We were at a standstill.”
As the months would go by, the couple stumbled on the Huntington’s Disease Society of America’s (HDSA) Team Hope Walk
. This is the organization’s signature grassroots campaign that was designed to provide hope and support for those effected by the disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.
Since the inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $4 million for the cause. The Millers attended HDSA's Central Florida affiliate Team Hope Walk. “It was at this event that we were exposed to the HD community for the first time,” Katie explains. “It was so comforting to know that we were not alone.”
Since then, the couple has been very active in the HD Community. “Danny and I have volunteered at a number of events, helped organize the 2018 Walk site, formed the Central Florida Affiliate Board of Volunteers, and established monthly HD support group meetings for the Orlando area,” Katie explains.
Danny has used his technical skills to create flyers and video stream live for the fundraisers. Katie is co-chairing the 2019 Team Hope Walk in Orlando alongside Craig Mayers, Southeast Regional Development Manager.
“They were the first HD couple I’d met in Central Florida that was actually willing to help me shoulder the responsibility of rebuilding our presence in this vastly underdeveloped region for HDSA,” Craig explains. “The Millers brought a substantial crowd to every event I hosted, which made an exponential difference in the success of our events. Without Katie and Danny, the 2018 Orlando Team Hope Walk fundraising efforts would not have enjoyed the vast success that they did.”
According to Craig, they were instrumental in raising over $26,000 which is $10,000 over budget for the 2018 event. “Katie is truly leveraging her personal, professional and social networks in 2019 to hopefully raise more funds than any other Team Hope Walk in the Southeast, which is her goal,” said Craig. “Her outreach efforts in this regard are reminiscent of how the phenomenal fundraisers on the Board of Trustees conduct their fundraising outreach, which is incredibly inspiring.”
With the amount of outreach support, the couple is not giving up hope in finding a cure. “We may not know what the future holds for us, but we are not ready to give up hope that someday, someone will find a cure,” Katie explains. “Our message to the HD community is to never stop fighting to live your life fully. You only have one life, so you might as well give it all you've got. We’re the Millers, and we are not going down without a fight!”
Recently, they spoke to WNDU News about their HD history and experimental therapy that may help people with the disease. To watch the interview, click here
Katie wants others to know that they are not alone in this battle. She facilities monthly support group meetings at the University of Central Florida. The meets are held during the first Tuesday of every month at 6:30 PM. 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 firstname.lastname@example.org.