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By Matthew Santamaria (msantamaria@hdsa.org)

Originally from East Windsor, New Jersey, Steven Feigenbaum is an avid inline skater. He uses his love for inline skating to raise awareness for Huntington’s disease (HD).

HD 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.

In 1995, his aunt Brenda was diagnosed with the disease.

“Like so many other HD families in the same unfortunate position, mine worked lovingly and tirelessly to care for her,” said Steven.

As his aunt was battling the disease, he became involved with a number of HDSA fundraisers in New Jersey which include hoop-a-thons at Rutgers University, basketball tournaments, and variety shows (featuring music performances and one-act plays) produced by his brother Eric in Princeton.

Ten years later, aunt Brenda died due to complications with HD.

“My family misses her terribly, as do her friends and the countless people she touched during her life—a life cut too short,” Steven explains. “Agonizingly, her death may not be the end of our family’s fight against this cruel disease.”

Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Brenda’s daughter Kristen has a chance of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

“Aunt Brenda was like a mother to me, and Kristen is like a sister,” said Steven. “Therefore, I skate both in honor and in memory of those who have HD or who are at risk, and in memory of my dear aunt Brenda and all others who have ultimately succumbed to this awful affliction.”

Now, Steven is the co-founder of an organization called In Motion for a Million (IMFM). Through long-distance treks, the organization raises money and awareness for worthy causes. On their 2010 USA trek, IMFM helped raise money for HDSA as Steven skated ocean-to-ocean across America (2,917 miles / 4,694 KMs) from St. Augustine, Florida, to San Diego, California.

“Athletically, my ultimate goal is to become the first person in history to skate across at least one country in every continent (excluding Antarctica),” Steven explains. “Charitably, my ultimate goal is to continue to utilize my long-distance expeditions as a medium to assist people in need.”

In 2019, this was IMFM’s third major trek and it will be raising awareness for HD. This summer, Steven inline skated more than 1,000 miles across Europe. He skated the Eurovelo 6 cycling route through France, Switzerland, Germany, Austria, Slovakia, and Hungary.

“The HD community has been a significant part of my life ever since Aunt Brenda was diagnosed nearly a quarter of a century ago,” said Steven. “I would like to ask for your generous help in support of my HDSA skating fundraiser. Your donation brings us that much closer to the day in which this deadly disease will no longer take its toll on our loved ones. 100% of your donation goes towards research for a cure, and of course, no donation is too big or too small!”

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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