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Wednesday, May 26, 2010
Saturday, May 15, 2010
Team Hope Walk was a SUCCESS!!
TEAM MABRY!
Today was our first annual walk in Albuquerque, NM for Huntington's Disease! We had 90 people register with 35 volunteers! We were told that this was the biggest showing for a first walk!
Can't wait for next year all ready!!
I also filled out my papers for NYA (National Youth Alliance) which is a section of the HDSA for the youth sector. I've been asked to lead NM's NYA if I can be accepted to be a part of it. But it's not just NM its the entire Rocky Mountain Chapter, which includes Colorado, Wyoming, and Utah. This would be so great to do, and I can spread the word and inspiration! Plus have the opportunity to go to the annual HDSA Convention.
Till next time!!
Wednesday, May 12, 2010
Life.
I'm sitting here on my couch thinking about life and how things come to be. And I'm thinking about HD and how it affects me personally. I usually think about what I would do if I got tested, and being faced with this disease more and more each day I've begun to self diagnose. I notice my legs are having movement, my toes, and I feel incredibly ansty all the time. Sitting for more than 30 minutes becomes a huge inconvenience.
One of the doctors who came to our HD Education day said something about being tested and how once they give you those results they can't take them back. Which I understood. I didn't want to get tested until I was ready to settle down and have children. But now, I'm not so sure that is the best choice. When I was younger I wanted to know asap. But then I decided having HD would get in my way of moving on with my life.
I know each day is a gift from God and we should live it to the fullest, but lets be honest with ourselves. Not many of us do that. I would want to hope for the best and that my results would be negative. But if they were postive, I wonder how I would cope. How my mother would take it. I've been thinking of how I would tell my friends and family and how they would take this.
HD in my family was passed from my great grandmother Mary Webb Mabry to my grandfather Walter Mabry, to my father Edwin Mabry, and recently to my brother Bryan Mabry. My papa Walter had three siblings, the oldest was negative, second child positive, third negative and my papa the last child was positive. By the time I was old enough to know my papa he was already taken over by the disease and it was too late. I know he was in the Navy, didn't spend much time with my dad and married a Japanese woman named Michyo who is my grandma and took care of him till the day he died. My dad was raised in New Zealand with his mom and older brother, who as far as we know is HD negative. As far as my dad's side of the family we don't know much of their history or what all happend.
I hope when I come to terms and have to face this disease for myself I will be strong enough to face the consequences of my decision but God will hopefully be by my side...
One of the doctors who came to our HD Education day said something about being tested and how once they give you those results they can't take them back. Which I understood. I didn't want to get tested until I was ready to settle down and have children. But now, I'm not so sure that is the best choice. When I was younger I wanted to know asap. But then I decided having HD would get in my way of moving on with my life.
I know each day is a gift from God and we should live it to the fullest, but lets be honest with ourselves. Not many of us do that. I would want to hope for the best and that my results would be negative. But if they were postive, I wonder how I would cope. How my mother would take it. I've been thinking of how I would tell my friends and family and how they would take this.
HD in my family was passed from my great grandmother Mary Webb Mabry to my grandfather Walter Mabry, to my father Edwin Mabry, and recently to my brother Bryan Mabry. My papa Walter had three siblings, the oldest was negative, second child positive, third negative and my papa the last child was positive. By the time I was old enough to know my papa he was already taken over by the disease and it was too late. I know he was in the Navy, didn't spend much time with my dad and married a Japanese woman named Michyo who is my grandma and took care of him till the day he died. My dad was raised in New Zealand with his mom and older brother, who as far as we know is HD negative. As far as my dad's side of the family we don't know much of their history or what all happend.
I hope when I come to terms and have to face this disease for myself I will be strong enough to face the consequences of my decision but God will hopefully be by my side...
Tuesday, May 11, 2010
Team Hope Walk- Finding a Cure one Step at a time...
MAY 15TH, 8AM, TIGUEX PARK NEAR OLD TOWN ALBUQUERQUE.
$35 per person, $100 per group of four.
Register online at firstgiving.com/hdsa-rm
You can also donate at this website too...
HDSA.org
Here is a link to the Huntington's Disease Association of America. This is where I will get most of the information you see here on my page.
firstgiving.com/hdsa-rm
This is a link to the First Giving website where you can donate money to our up coming Team Hope Walk on May 15th.
Here is a link to the Huntington's Disease Association of America. This is where I will get most of the information you see here on my page.
firstgiving.com/hdsa-rm
This is a link to the First Giving website where you can donate money to our up coming Team Hope Walk on May 15th.
Huntington's Disease
Huntington's Disease: a devastating, hereditary, degenerative brain disorder for which there is, at present, no effective treatment or cure. HD slowly diminishes the affected individual's ability to walk, think, talk and reason. Eventually, the person with HD becomes totally dependent upon others for his or her care. Huntington's Disease profoundly affects the lives of entire families -- emotionally, socially and economically.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure can be forthcoming.
Named for Dr. George Huntington, who first described this hereditary disorder in 1872, HD is now recognized as one of the more common genetic disorders. More than a quarter of a million Americans have HD or are "at risk" of inheriting the disease from an affected parent. HD affects as many people as Hemophilia, Cystic Fibrosis or muscular dystrophy.
Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, clumsiness, involuntary twitching and lack of coordination. As the disease progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase. Walking, speaking and swallowing abilities deteriorate. Eventually the person is unable to care for him or herself. Death follows from complications such as choking, infection or heart failure.
HD typically begins in mid-life, between the ages of 30 and 50, though onset may occur as early as the age of 2. Children who develop the juvenile form of the disease rarely live to adulthood.
HD affects males and females equally and crosses all ethnic and racial boundaries. Each child of a person with HD has a 50/50 chance of inheriting the fatal gene. Everyone who carries the gene will develop the disease. In 1993, the HD gene was isolated and a direct genetic test developed which can accurately determine whether a person carries the HD gene. The test cannot predict when symptoms will begin. However, in the absence of a cure, some individuals "at risk" elect not to take the test.
Since the discovery of the gene that causes HD, scientific research has accelerated and much has been added to our understanding of Huntington's Disease and its effects upon different individuals. By continuing to increase investment in both clinical and basic HD research each year, breakthroughs in treatment - and a cure can be forthcoming.
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