*sign up for T-shirts/race on next page*
Race information:
Race Date: June 29, 2024 Location: 8701 McAfee St, Parkville, MO 64152
Time: (Registration starts at 7PM, race begins at 8PM)
Runners, walkers, and volunteers, please join us on June 29th, for the first annual Sunset Run for Huntington's Disease! The race will be a 5k, held at English Landing Park. T-shirts, snowcones, water, and snacks will be provided. A twenty-dollar donation will be requested at the door. Cash, Venmo, credit card, or check are accepted at the event.
Together we will promote awareness for HD and raise money for local individuals and families with Huntington's. All money donated goes straight to Help for Huntington's KC, a Nonprofit Organization, with a mission to provide resources, services, and a safer environment to individuals with HD.
If you have any questions or concerns, feel free to contact me!
816-872-2047
gianna.ezekwe@gmail.com
Course Map:
Why donate?
Help for Huntington's serves over 50 families in the KC metro area. Your donation goes directly to Help for Huntington's KC which aids local families struggling with this disease such as the Black's.
The Black Family has a long, unfortunate history with Huntington's Disease (HD). In previous generations, the disease concealed from others and was not talked about around the family dinner table. But it was always there in the movements and daily struggles of her grandfather, her aunt, her dad, her cousin, her brother - and now Meshanne fights the same battle.
Before HD she was a banker, drove a car, had an adult life. But that got harder to do as symptoms emerged forcing her to leave her career, give up her license and start a new life. The ability to multi-task and prioritize is often one of the first signs of HD and can lead to depression and anger. Meshanne also lost multiple family members in a short time span. This left her heartbroken. Trauma and stress accelerate onset of HD. Things were not going well.
Meshanne is a woman who struggled in her denial. A woman who did her best, but knew she needed help. A woman who looks this awful disease in the face with the biggest joy-filled grin.
It is not easy accepting the help of others. It is not easy knowing they are healthy and you are not. It is not easy losing your independence little by little, while trying to be the best daughter, sister, aunt and mom you can be.
But when you meet the Meshanne of 2024 you can't help but feel happy. She is everyone's friend. She requires endless cups of coffee and trips to thrift stores. And don't even get her started about her beloved Kansas City Chiefs!
HD is still there. It has always been there.That is how genetics work. But HD cannot take away her ability to teach others. Those who meet her see her exuberant love for living every moment with joy, and not the HD. She knows it's hard to take care of people with HD. Yet she does everything in her control to lean into it, accept it and support those who support her.
A heart of gratitude has replaced the denial and anger. Every single day is challenging. She is losing weight, she can't do simple daily tasks without help, and she depends solely on others to get her where she needs to be. But she adapts and moves forward - accepting her role in this life - fervently praying in thanks for a life lived well, knowing God is in control.
Without the help of organizations like H4HKC, Meshanne's life would have a few more challenges. Their assistance, support and love have helped her family live a little easier so they can focus on being together.
To help families, such as Meshanne's, please donate at https://h4hkc.org
What is HD?
Huntingtons Disease (HD) is a genetic disorder that causes the progressive breakdown of nerve cells in the brain. It impacts a person's functional abilities, typically resulting in movement, cognitive, and psychiatric disorders. Today there are 41,000 Americans with Huntington's, and 200,000 at risk of inheriting the disease.
Causes: The disease is caused by a mutation in the HTT gene, which encodes for the huntington protein. HD is an autosomal dominant disorder and passed through generations. If a parent has the disease, each child has A 50% chance of inheritance.
Symptoms: Symptoms usually start around age 30- 50, but can start earlier or later. These symptoms include movement issues, such as uncontrolled movements (chorea), muscle stiffness, trouble speaking, and difficulty balancing. Cognitive problems, such as impulsive behavior, and difficulty organizing. Symptoms also can be emotional and psychiatric, such as depression and mood swings, obsessive-compulsive behaviors, and irritability and aggression.
Treatment: There is currently no cure or treatment to slow or stop the progression of the disease, however, there are methods to manage symptoms in the forms of medications, therapies, and supportive care.
To find out more about HD, go to: https://hdsa.org