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By Matthew Santamaria (msantamaria@hdsa.org)

In life, you need peace of mind in order to function throughout the day. For Karina Krepp and her family, that peace led to action.

Karina married Christien Methot and has two boys, Luca (aged 17) and Kalev (aged 12). After the children were born, Christien’s mother Sandy was diagnosed with Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

At the time, the family was happy that they can categorize her ailments. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, weight loss, and difficulty swallowing.

“She was diagnosed with HD when Kalev and I were very young and the doctors said she didn’t have long to live,” Luca explains. “However, my grandma is a fighter and is still battling HD to this day.”

The family would then go into research mode as they found out more about the disease. They found out that Christien and the children have a chance of having the disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

There are 5-10% of at risk patients that get tested for the disease. Christien decided not to get tested for the disease. “Since we already had our kids, there was no debate for us about testing,” said Karina. “We see no upside in knowing and adding that potential concern to the boys' existence. Whatever is true for my husband is already true.”

Their peace of mind for Sandy led to raising money to find a cure for the disease. “This served as inspiration to our family and we decided that we would fight too,” said Luca. “We decided to push the things that people without HD take for granted: our physical and mental abilities.”

In 2014, the family started their first event called Crank for the Cure. The family organized a 600 mile bike trip from New York City to Toronto, Canada. This event raised more than $20,000 for HDSA.

“We wanted to take a plan of action towards helping her,” said Kalev. “We kept brainstorming about things we could do to raise money for her. Three weeks later, we came up with the idea to bike from New York to Canada and have people to donate to us so we can give money to doctors and scientists to find a cure.”

In 2016, they launched Pump for the Cure. According to Luca, this would consist of cycling pull-ups, push-ups, and squats and completing the same number of repetitions as the day of that year. In total, that is more than 66,000 total daily actions throughout the year.

“HD has had a major effect on our family and many other families that have loved ones struggling with this disease,” Luca explains. “Together, we can do our part in this fight.”

This helped prepare the family for the 2017 event called Climb for the Cure. During that summer, they reached the summit of Mount Kilimanjaro, tallest mountain in Africa, to raise awareness for HD.

“Doing the fundraising has been very healing,” Karina explains. “The cure is within reach and we feel very fortunate to have done our part to move the needle. Along the way our family has grown stronger. Every event involved a year of preparation and execution. We have spent hours, the four of us, physically training for the events. We now know each other in the moments when we aren't sure if we can go on. We have cheered and cried together.”

On July 8th, the family plans to take a Kayak and journey down the Connecticut River. This event is called Paddle for the Cure as Sandy lives in Connecticut. They plan on going into the land of unknown as none of them has frequently paddled but have compared HD to this latest adventure.

“We have a goal to be of service,” said Karina. “This year, we are challenging ourselves to do something none of us has done before. No member of this family is a pro nor even frequent paddle person. We've taken some lessons. The results were often upside down. And wet. But funny! Our plan is to paddle our way from White River Junction to Brattleboro.”

Currently residing in New York City, the family is inspiring others to join the cause as they are going in the land unknown to them. They are willing to do this because people with HD are battling someone worse in life and the family wants to take advantage of every opportunity they can to raise money as this has brought them closer as well.

“Most of this has been solitary time,” said Karina. “Alone with breath, thought and action. We know ourselves better. Should HD strike again, we will be ready for that challenge too.”

For more information about the Thursday, June 27th event Paddle for the Cure, click here.

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org.