Tag Archives: May 2014

ALS Awareness

ALS (amyotrophic lateral sclerosis) is a devastating progressive neurodegenerative disease which destroys the ability to walk, speak, eat and breathe. ALS was first recognized as a disease in 1869, by Jean-Martin Charcot, a French Neurologist. However, ALS is sometimes referred as Lou Gehrig’s disease; named after Lou Gehrig, a famous baseball first basemen, whose career was stopped in 1939 when he developed ALS at the age of 36. At that time, ALS was given widespread public attention due to the high profile of this baseball player.

The aim of ALS awareness month is to raise awareness about ALS, gather support for those affected by this condition and to encourage funding and research into a treatment or cure.

Raising Awareness About The Effects Of ALS
ALS affects the body by attacking motor neurons (nerve cells) of the brain and spinal cord. Motor neurons are cells which process and transmit signals which help to control muscles. Destruction of motor neuron cells leads to symptoms related to loss of muscle control. Typical symptoms of ALS include inability to walk, speak, eat and even breathe.

As ALS is a progressive disease, more motor neurons are destroyed overtime worsening the symptoms. Difficulty breathing and swallowing are later symptoms; paralysis can also develop. After the onset of this disease, fatality usually occurs within 2-5 years.

Healthy People In Their Prime Can Also Get ALS
ALS typically affects people over the age of 40, including those who were previously enjoyed excellent health in the prime of their lives. Whilst ALS affects a minority of the population (in the US about 30,000 people have this condition), ALS is indiscriminate in the types of people who will be affected by it. Famous people who had ALS include NBA player George Yardley, Senator Jacob Javits and former vice president of the US, Henry Wallace.

ALS can be devastating to both the person and to their friends and family. At present there is no known treatment or cure for ALS. If a cure or greater understanding of ALS is achieved, then it is likely that this will benefit research into related conditions like Parkinson’s, Huntington’s and Alzheimer’s disease. There could be a similar underlying neurodegenerative condition in each of them.

Supporting ALS Awareness Month
Several organizations which represent people with neurodegenerative diseases back ALS Awareness Month to support those with this condition and to raise funds for research into a cure. These include the Muscular Dystrophy Association and the ALS Association who host seminars and other activities throughout the United States, during May.

To coincide with this awareness month, the ALS Association have in more recent years run a campaign, ‘ALS Across America’. Established in 2008, ‘ALS Across America’ aims to raise awareness about ALS by sharing with the media and public the experience people throughout the United States have with ALS. When we become aware of the plight of people with this serious disease, we are more likely to support them and the related organizations which work to find a cure.

A person can get involved in ALS awareness month by:

donating money to help fight this disease
becoming inspired after reading and listening to stories about people with this condition
advocating for people with ALS
staying connected with ALS News and Updates
getting involved in the 31 ways to fight ALS in 31 days

Nurses Leading the Way

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National Nurses Week begins each year on May 6th and ends on May 12th, Florence Nightingale’s birthday. These permanent dates enhance planning and position National Nurses Week as an established recognition event. As of 1998, May 8 was designated as National Student Nurses Day, to be celebrated annually. As of 2003, National School Nurse Day is celebrated on the Wednesday within National Nurses Week (May 6-12) each year. International Nurses Day is celebrated around the world on May 12th of each year.

The theme for National Nurses Week in 2014 is “Nurses Leading the Way…”

A Brief History of National Nurses Week
1953 Dorothy Sutherland of the U.S. Department of Health, Education, and Welfare sent aproposal to President Eisenhower to proclaim a “Nurse Day” in October of the following year. The proclamation was never made.

1954 National Nurse Week was observed from October 11-16. The year of the observance marked the 100th anniversary of Florence Nightingale’s mission to Crimea. Representative Frances P. Bolton sponsored the bill for a nurse week. Apparently, a bill for a National Nurse Week was introduced in the 1955 Congress, but no action was taken. Congress discontinued its practice of joint resolutions for national weeks of various kinds.

1972 Again a resolution was presented by the House of Representatives for the President to proclaim “National Registered Nurse Day.” It did not occur.

1974 In January of that year, the International Council of Nurses (ICN ) proclaimed that May 12 would be “International Nurse Day.” (May 12 is the birthday of Florence Nightingale.)Since 1965, the ICN has celebrated “International Nurse Day.”

1974 In February of that year, a week was designated by the White House as National Nurse Week, and President Nixon issued a proclamation.

1978 New Jersey Governor Brendon Byrne declared May 6as “Nurses Day.” Edward Scanlan, of Red Bank, N.J., took up the cause to perpetuate the recognition of nurses in his state. Mr.Scanlan had this date listed in Chase’s Calendar of Annual Events. He promoted the celebration on his own.

1981 ANA, along with various nursing organizations, rallied to support a resolution initiated by nurses in New Mexico, through their Congressman, Manuel Lujan, to have May 6, 1982, established as “National Recognition Day for Nurses.”

1982 In February, the ANA Board of Directors formally acknowledged May 6, 1982 as “National Nurses Day.” The action affirmed a joint resolution of the United States Congress designating May 6 as “National Recognition Day for Nurses.”

1982 President Ronald Reagan signed a proclamation on March 25, proclaiming “National Recognition Day for Nurses” to be May 6, 1982.

1990 The ANA Board of Directors expanded the recognition of nurses to a week-long celebration, declaring May 6-12, 1991, as National Nurses Week.

1993 The ANA Board of Directors designated May 6-12 as permanent dates to observe National Nurses Week in 1994 and in all subsequent years.

1996 The ANA initiated “National RN Recognition Day” on May 6, 1996, to honor the nation’s indispensable registered nurses for their tireless commitment 365 days a year. The ANA encourages its state and territorial nurses associations and other organizations to acknowledge May 6, 1996 as “National RN Recognition Day.”

1997 The ANA Board of Directors, at the request of the National Student Nurses Association, designated May 8 as National Student Nurses Day.

Huntington’s Disease Awareness

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What is Huntington’s Disease?
Huntington’s disease (HD) is an inherited brain disorder that results in the progressive loss of both mental faculties and physical control. Symptoms usually appear between the ages of 30 to 50, and worsen over a 10 to 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complication.

Everyone has the HD gene but it is those individuals that inherit the expansion of the gene who will develop HD and perhaps pass it onto each of their children.

Presently, there is no cure. Although medications can relieve some symptoms, research has yet to find a means of slowing the deadly progression of HD.

Current estimates are that 1 in every 10,000 Americans has HD and more than 250,000 others are at-risk of having inherited it from a parent. Once thought a rare disease, HD is now considered one of the more common hereditary diseases.

Every person who inherits the expanded HD gene will eventually develop the disease.
Over time, HD affects the individual’s ability to reason, walk and speak

Symptoms Include:

Personality changes, mood swings and depression
Forgetfulness and impaired judgment
Unsteady gait and involuntary movements
Slurred speech and difficulty in swallowing

The Scope of HD
Approximately 30,000 Americans have HD, but the devastating effects of the disease touch many more. Within a family, multiple generations may have inherited the disease. Those at-risk may experience tremendous stress from the uncertainty and sense of responsibility. In the community, lack of knowledge about HD may keep friends and neighbors from offering social and emotional support to the family, fostering unnecessary isolation. The Huntington’s Disease

Society of America (HDSA) has a nationwide network that provides support and referrals for individuals with HD and their families.

Genetic Testing for HD
Individuals can be tested for the gene that causes HD. The test may be used to confirm a diagnosis of HD, but may also be used as a predictive test before symptoms arise. Some individuals at-risk for HD feel that it is important to know whether they carry the gene. Others ultimately choose not to be tested. While the actual procedure is simple, the decision to have the test is not. HDSA recommends that persons wishing to undergo presymptomatic testing for HD do so at one of our HDSA Centers of Excellence, or at a testing center with specific training in working with HD. A list of these testing centers is available from HDSA

HD affects both sexes and all races and ethnic groups around the world.
The Decision to test is highly personal and should never be rushed or forced.

Who is At-Risk?
Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

Genetic Information Nondiscrimination Act of 2008 (GINA)
The Genetic Information Nondiscrimination Act (GINA) protects people from discrimination by health insurers and employers on the basis of their DNA information. This federal law also enables individuals to take part in research studies without fear that their DNA information might be used against them by health insurers or in the workplace.

However, GINA protections do not extend to long term care, disability or life insurance policies. Anyone contemplating testing should first consider adding one or more of these types of policies before starting the testing process.

Advocacy
HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals. Learn more at www.hdsa.org/advocacy.

Join us in the fight against HD
YOU can help HDSA in our efforts to end HD and provide resources for those who must face this disease daily. Both funds and volunteers are needed. Contact the HDSA National Office to find out how YOU can help.

HD does not skip generations; if one does not inherit the expanded gene, one cannot pass it on

An End To HD?
In 1993, researchers identified the gene that causes HD. Since then, research has moved quickly towards developing treatments and, ultimately, a cure. HDSA supports the goals of clinical and basic research at leading research facilities globally.

Clinical and observational trials are an important way you can help to sustain the momentum of HD research and move potential new therapies through the approval process. Visit the Research section of the HDSA website for more information and to find a trial in your area. There are opportunities for all HD family members – gene positive, at-risk, gene negative, and caregivers – to participate.

About HDSA
The Huntington’s Disease Society of America (HDSA) is the largest 501(C)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington’s disease. Founded in 1968 by Marjorie Guthrie, wife of folk legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD and the 250,000 at-risk in the United States.

Where to find help
You are not alone in facing HD. HDSA has developed a nationwide network that includes Chapters and Affiliates, HDSA Centers of Excellence, Support Groups, and Social Workers that are ready to assist you with referrals and resources in your area. To learn more, please visit www.hdsa.org or call 888-HDSA-506.

Research worldwide is working to unlock the mystery of HD and find a cure

Stroke Awareness

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Stroke is the 4th leading cause of death in America & a leading cause of adult disability.
Up to 80% of strokes are preventable; you can prevent a stroke!

What is a stroke?
A stroke or “brain attack” occurs when a blood clot blocks an artery (a blood vessel that carries blood from the heart to the body) or a blood vessel (a tube through which the blood moves through the body) breaks, interrupting blood flow to an area of the brain. When either of these things happen, brain cells begin to die and brain damage occurs.

When brain cells die during a stroke, abilities controlled by that area of the brain are lost. These abilities include speech, movement and memory. How a stroke patient is affected depends on where the stroke occurs in the brain and how much the brain is damaged.

For example, someone who has a small stroke may experience only minor problems such as weakness of an arm or leg. People who have larger strokes may be paralyzed on one side or lose their ability to speak. Some people recover completely from strokes, but more than 2/3 of survivors will have some type of disability.

History of National Stroke Awareness Month
National Stroke Awareness Month takes place in May every year. On May 11, 1989, President George H. W. Bush signed Presidential Proclamation 5975 designating May as National Stroke Awareness Month at the urging of National Stroke Association. Since then, National Stroke Association has been honoring this special time of the year to increase public awareness of stroke in an effort to conquer it.

Over the years, public education campaigns have been conducted during May to increase awareness of different aspects of stroke that directly affect specific populations, such as women or those at high risk for stroke. Today, National Stroke Association continues educating the public through campaigns such as the Faces of Stroke℠ and by designing easy-to-use tools and resources that initiate individuals and groups to raise awareness on a local level.

There is a great movement of stroke champions already engaged in heightening the awareness of stroke in the U.S. By joining the thousands of people already committed to stroke awareness, you adopt stroke as a cause and put everyone further down the road to reduced incidence.

What Does it Mean to Raise Awareness?
Raising stroke awareness is about:

Elevating stroke in the mindset of everyone in the U.S. so more people care about supporting stroke research and education.
Ensuring that everyone understands the emotional, physical and financial impacts that stroke has on our country.
Influencing others to improve their health by sharing personal stories of how stroke has already affected the lives of so many.
Talking to legislators and thought leaders about how their decisions can positively affect survivors throughout their recovery.
Providing a platform for the more than 7 million survivors and their families to discuss their experiences and live with dignity. Stroke survivors possess the most influential and inspiring knowledge needed to make an impact on society. Their voices are so important.

Raising awareness knows no boundaries. Even the smallest efforts matter.

ALS Awareness Month

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ALS Awareness Month 2014
ALS (amyotrophic lateral sclerosis) is a devastating progressive neurodegenerative disease which destroys the ability to walk, speak, eat and breathe. ALS was first recognized as a disease in 1869, by Jean-Martin Charcot, a French Neurologist. However, ALS is sometimes referred as Lou Gehrig’s disease; named after Lou Gehrig, a famous baseball first basemen, whose career was stopped in 1939 when he developed ALS at the age of 36. At that time, ALS was given widespread public attention due to the high profile of this baseball player.

The aim of ALS awareness month is to raise awareness about ALS, gather support for those affected by this condition and to encourage funding and research into a treatment or cure.

The Event ‘Walk To Defeat ALS’ Helps Raise Awareness & Support For People With ALS

A person can get involved in ALS awareness month by:

donating money to help fight this disease
becoming inspired after reading and listening to stories about people with this condition
advocating for people with ALS
staying connected with ALS News and Updates
getting involved with various events to help raise awareness
participating in ‘Walk to Defeat ALS’