Huntington’s Disease Heroes: Inspiring Stories Of Resilience From The HD Community

If you've been with us a while, you may have heard about Huntington Disease.

This is a genetic based or family disease that has a high passage rate from one generation to the next. Each child born to a parent with Huntington's has a 50% risk of inheriting it. The same risk as flipping as coin and getting heads or tails. This is a terrifying fact for both parents and children affected by HD. 


Early on, a person with HD or their friends and family may notice difficulties with planning, remembering, and staying on task. They may develop mood changes like depression, anxiety, irritability, and anger. Most people with HD become “fidgety” and develop movements of the face and limbs known as chorea, which they are not able to control.

Because of the uncontrolled movements (chorea), a person with HD may lose a lot of weight without intending to, and may have trouble walking, balancing, and moving around safely. They will eventually lose the ability to work, drive, and manage tasks at home, and may qualify for disability benefits. Over time, the individual will develop difficulty with speaking and swallowing, and their movements will become slow and stiff. People with advanced HD need full-time care to help with their day-to-day activities, and they ultimately succumb to pneumonia, heart failure or other complications.

The symptoms of HD are sometimes described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.



Huntington disease is a genetic disorder. The HD gene is dominant, which means that each child of a parent with HD has a 50% chance of inheriting the disease and is said to be at-risk. Males and females have the same risk of inheriting the disease. HD occurs in all races. Symptoms usually appear between the ages of 35 and 55, but the disease can appear in youth (under 20 years – Juvenile HD) or older adults (Late Onset HD). ~ Huntington Society of Canada

" states, 

"Huntington's disease has a wide impact on a person's functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.
Huntington's disease symptoms can develop at any time, but they often first appear when people are in their 30s or 40s. If the condition develops before age 20, it's called juvenile Huntington's disease. When Huntington's develops early, symptoms are somewhat different and the disease may progress faster.

Medications are available to help manage the symptoms of Huntington's disease. But treatments can't prevent the physical, mental and behavioral decline associated with the condition."

This means there is no cure.


But, there is hope.

Our family deep dove into family planning research and we wondered if there were scientific options that aligned with our values. This was challenging as there was not much information available online or via HD societies around 2010. Could In Vitro Fertilization (IVF) have options? What was PGT/PGD? 

 If Lindsay was negative for or did not have the HD genetic mutation, our family development would look unassisted and natural. If Lindsay was positive for or had the genetic mutation, we wanted to take other steps to grow our family all the while knowing it would be a lot more work, energy and money. 

This presented two very different paths. 


To find out more and support organizations that support families living with HD

 huntington disease heroes book Lindsay groot


50% of all proceeds are going towards the Huntington Disease Youth Organization which supports families on a global scale. They really are remarkable. 

Thank you for your interest and support for this meaningful project.

Much love, 

Lindsay Groot

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