By Matthew Santamaria (msantamaria@hdsa.org)
With the Madison Re-Prom: Back to the Eighties event coming up, Event Coordinator Shana Verstegen took the time to talk about the upcoming event and her history with Huntington’s disease:
Q: Talk about Huntington’s disease and how it changed your life.
Shana: My mother was diagnosed with Huntington’s disease in 1986. My mom passed away from this disease in 2013 and I tested negative in 2014. Although we no longer have Huntington’s in our family, we find joy in giving back to the community that gave us so much. I cannot put my description of the people with HD into a short writing. Through this disease I have met the strongest, most resilient, inspirational and hopeful people in the world
Q: What is your association with HDSA’s Wisconsin Chapter?
Shauna: We quickly because associated with HDSA and HDSA Wisconsin for resources and support on managing a family member with Huntington’s. In 2006 I joined the HDSA-Wisconsin Board to give back and was the president for many years. When my children were born, I stepped off of the board but continue to manage 6 events: The HDSA Re-Prom, The Midwest Log Rolling Championships, and our 4 Run/Walks across the state.
Q: With the Madison Re-Prom coming up, can you explain the event and how long is has been going on?
Shauna: At the 2010 HDSA National Convention, I began brainstorming this idea with some of my friends in the National Youth Alliance. In 2011, I got together an amazing group of women and we had our first “HDSA Wisconsin Re-Prom” that next year.
Q: Since then, what have you seen from this event?
Shauna: Since then the event has been going strong with 200 - 300 attendees in attendance annually pulling in close to a half a million dollars for HDSA’s Wisconsin Chapter. We can celebrate those who we have lost, but also take a night to have FUN, and celebrate HOPE that this disease will one day be gone from our lives.
The Madison Re-Prom Event: Back to the Eighties will take place on Saturday, March 2nd at 5:30 pm (CST) in the Madison Monona Terrace Community and Convention Center. For more information about the event, 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 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.
With the Madison Re-Prom: Back to the Eighties event coming up, Event Coordinator Shana Verstegen took the time to talk about the upcoming event and her history with Huntington’s disease:
Q: Talk about Huntington’s disease and how it changed your life.
Shana: My mother was diagnosed with Huntington’s disease in 1986. My mom passed away from this disease in 2013 and I tested negative in 2014. Although we no longer have Huntington’s in our family, we find joy in giving back to the community that gave us so much. I cannot put my description of the people with HD into a short writing. Through this disease I have met the strongest, most resilient, inspirational and hopeful people in the world
Q: What is your association with HDSA’s Wisconsin Chapter?
Shauna: We quickly because associated with HDSA and HDSA Wisconsin for resources and support on managing a family member with Huntington’s. In 2006 I joined the HDSA-Wisconsin Board to give back and was the president for many years. When my children were born, I stepped off of the board but continue to manage 6 events: The HDSA Re-Prom, The Midwest Log Rolling Championships, and our 4 Run/Walks across the state.
Q: With the Madison Re-Prom coming up, can you explain the event and how long is has been going on?
Shauna: At the 2010 HDSA National Convention, I began brainstorming this idea with some of my friends in the National Youth Alliance. In 2011, I got together an amazing group of women and we had our first “HDSA Wisconsin Re-Prom” that next year.
Q: Since then, what have you seen from this event?
Shauna: Since then the event has been going strong with 200 - 300 attendees in attendance annually pulling in close to a half a million dollars for HDSA’s Wisconsin Chapter. We can celebrate those who we have lost, but also take a night to have FUN, and celebrate HOPE that this disease will one day be gone from our lives.
The Madison Re-Prom Event: Back to the Eighties will take place on Saturday, March 2nd at 5:30 pm (CST) in the Madison Monona Terrace Community and Convention Center. For more information about the event, click here.
###
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 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.