Caring for Caregivers

My son, Trenten, was diagnosed with Juvenile Huntington's Disease when he was 13 years old in 2021. By 2024 he needed constant care, so I took a leave of absence from work to be home with him.  For 24 hours a day and seven days a week I was his primary caregiver. I learned that there were very few organizations that focused on the caregivers. Knowing that caregiver burnout is a real thing, I knew this had to change and so TAG4Care was born in the Spring of 2025. 

Huntington's disease (HD) is a progressive, inherited neurodegenerative disorder that affects the brain and causes a wide range of symptoms. Juvenile Huntington disease (HD) is a less common, early-onset form of Huntington disease that begins in childhood or adolescence. It is a progressive disorder that causes the breakdown of brain cells in certain areas of the brain. This results in uncontrolled movements, loss of intellectual abilities, and emotional disturbances. Juvenile HD is defined by the onset of symptoms before age 20 years and accounts for 5-10% of all HD cases.