• We want to equip HD families with tangible resources to meet the physical needs of their daily living activities, and to optimize the quality of life for the whole family.

Helping Families with Huntington’s Disease in the Kansas City Region

The mission of Help For Huntington’s Kansas City is to mobilize our Kansas City community to increase the safety and well-being of individuals with Huntington’s Disease (HD) and their family members who care for them at home. By mobilizing our community, we want to bring together team members to help raise people’s awareness of and the need for our program, assist in the delivery of resources and services, and strengthen community participation for sustainability and self-reliance.

Our nonprofit organization is based in Kansas City, Missouri. If you want to know more about donations, activities, events, or campaigns, send us an email or connect with us on social media.

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You are not alone.

Although there is currently no cure or treatment that can slow or stop the progression of Huntington’s Disease, community support for the individual and family goes a long way in making the journey more bearable.

A necessity that has been identified in our community is to provide direct, tangible goods to meet a given need. Providing specific spoons suggested by an occupational therapist, installing handrails in a home, and providing cookbooks that contain recipes for high-calorie density foods are just a few examples of these needs. Our goal is to provide these specific resources as the needs arise.

We will have at least one event per year where the entire family can come and have fun together in a safe and supportive environment. Examples include: a family bingo night, a BBQ party, etc.

Upcoming Events

What is Huntington’s Disease?

Huntington’s Disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.
HD deteriorates a person’s physical and mental abilities during their prime working years, usually appearing between the ages of 30-50 and worsening over 10-25 years.
HD symptoms have been described as simultaneously having ALS, Parkinson’s, and Alzheimer’s disease.
The effects of Huntington’s Disease extend beyond the individual who suffers from it.
Every child of a parent with HD has a 50/50 chance of carrying the faulty gene that causes HD. If the child has not inherited this expanded gene, they will not develop the disease or be able to pass it on to their children.
Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.