Monday, September 11, 2023

Help support Team Hope Walk

The Huntington's Disease Society of America's (HDSA) Indiana Chapter will be hosting the Team Hope Walk - Central Indiana, on Saturday, September 16th at 10:00 AM, at Mulberry Fields, in Zionsville, IN.

Team Hope is HDSA’s largest national grassroots fundraising event, which takes place in over 100 cities across the U.S. and has raised more than $24 million for Huntington's disease since its inception in 2007. Thousands of families, friends, co-workers, neighbors, and communities walk together each year to support HDSA’s mission to improve the lives of people affected by Huntington's disease and their families. 

Huntington’s disease is a fatal genetic disease that affects the nerve cells in the brain that is described as having ALS, Parkinson's, and Alzheimer's disease all at once. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.

“While HD might be rare, there are other families and friends here to support you within your very own community,” said Camille Colletti, HDSA’s Upper Great Lakes Regional Development Officer. “With laughter, smiles, and a day of fun; our Team Hope events bring us all together to embrace our challenges, because Family is Everything.” 

As someone who has seen the effects of Huntington’s Disease in Multiple people, it is one of the most heartbreaking things to watch your loved ones lose mobility, and their memories and thoughts as time goes by. 

One of the people was this beautiful woman who I loved with all my heart. I referred to her as my other mother. They never had children. She was struggling with Huntington’s Disease but she was the sweetest and always upbeat regardless of how she was feeling. Her faith was everything to her. She always had a smile on her face and a warm hug for a friend. She was always such a joy and grateful for every day she was alive. She loved to play piano and loved music. She sadly passed away. I will always remember her persistence and her determination and her love for everyone. 

Did you know that Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Huntington’s Disease is both physical, neurological and cognitive.  Some of the symptoms of Huntington’s Disease:

  • Movement problems lead to activity limitations and falls in persons with Huntington’s disease.
  • Bradykinesia (slowness of movement)
  • Akinesia (delayed start of movement)
  • Uncoordinated movement
  • Motor impersistence (inability to sustain a movement like holding a cup in the hand without dropping it)
  • Difficulty with rapidly alternating movements (turning the palm of the hand face up then face down rapidly)
  • Difficulties performing sequences of movements (getting out of bed, standing up from a chair).
  • They can struggle with thinking clearly
  • Often have memory issues and forgetting things in day to day life. 
  • Multitasking 
  • As the disease progresses, they will start having a lot more memory loss and experience dementia. 

I feel like Huntington’s Disease, is one of those that not many people knows about. It’s such a hard thing for the patient and for their family and friends. I would love for you to please donate

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