By Matthew Santamaria (msantamaria@hdsa.org)
For most families that celebrate Christmas, every child loves running to the tree and opening up the presents.
Unfortunately, that is not the case for Bryanette “Bry” Blanco.
In 2001, on Christmas morning, her uncle passed away due to complications from 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.
She considered her uncle as a big brother and this news broke her heart, but made Bry and her family determined to find a cure. In that same year, her family started to get involved with HDSA. Her mother, Denise Thurmond, organized a walk in the area to raise awareness.
Bry and her sister wanted to be tested for the disease as they already knew their chances of inheriting it. 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.
Each year, 5-10% of at risk patients get tested. This is a difficult choice for at-risk patients. There are some people that see no benefit in knowing while others want to know so they can make informed choices about their future. There is no “right” answer as the decision is intensely personal.
HDSA encourages at-risk individuals considering genetic testing to go to a genetic testing center. This will provide you sessions with professionals who are knowledgeable with HD and the local services available. It may take several weeks to receive your results.
To find your local genetic testing center, click here.
A few years ago, Bry and her sister tested for HD.
“While we didn't know if our mom carried the gene or not, we wanted to know if we did,” Bry explains. “Fortunately, we both tested negative for the gene. She could go on to start her family and I could feel more at ease about my own children.”
This did not stop her spreading HD Awareness. For three years, she was the President of HDSA’s Texas Affiliate. She is currently organizing the upcoming Houston Texas Team Hope Walk on Saturday, October 19th at Stude Park. For more information about the event, click here.
The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. Since its inception in 2007, it has occurred in more than 100 different cities.
“Because we have lost family to this disease, volunteering, raising money, and awareness for HD will always play a huge role in my life,” said Bry.
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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
For most families that celebrate Christmas, every child loves running to the tree and opening up the presents.
Unfortunately, that is not the case for Bryanette “Bry” Blanco.
In 2001, on Christmas morning, her uncle passed away due to complications from 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.
She considered her uncle as a big brother and this news broke her heart, but made Bry and her family determined to find a cure. In that same year, her family started to get involved with HDSA. Her mother, Denise Thurmond, organized a walk in the area to raise awareness.
Bry and her sister wanted to be tested for the disease as they already knew their chances of inheriting it. 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.
Each year, 5-10% of at risk patients get tested. This is a difficult choice for at-risk patients. There are some people that see no benefit in knowing while others want to know so they can make informed choices about their future. There is no “right” answer as the decision is intensely personal.
HDSA encourages at-risk individuals considering genetic testing to go to a genetic testing center. This will provide you sessions with professionals who are knowledgeable with HD and the local services available. It may take several weeks to receive your results.
To find your local genetic testing center, click here.
A few years ago, Bry and her sister tested for HD.
“While we didn't know if our mom carried the gene or not, we wanted to know if we did,” Bry explains. “Fortunately, we both tested negative for the gene. She could go on to start her family and I could feel more at ease about my own children.”
This did not stop her spreading HD Awareness. For three years, she was the President of HDSA’s Texas Affiliate. She is currently organizing the upcoming Houston Texas Team Hope Walk on Saturday, October 19th at Stude Park. For more information about the event, click here.
The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. Since its inception in 2007, it has occurred in more than 100 different cities.
“Because we have lost family to this disease, volunteering, raising money, and awareness for HD will always play a huge role in my life,” said Bry.
###
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