About Donna's Dugout
DONNA’S DUGOUT
PITCH TO THE “KATCHER"
STRIKE OUT ALS
It was June 22, 2005 when I received my diagnosis of ALS, Lou Gehrig’s Disease. When I was asked by my doctor, Dr. Mackin, how I felt about this, my response was, “well, I’m not going home to die”. There were too many things I knew I wanted to do before this thing would take the best of me but I needed time to figure out exactly what I wanted to do with this time.
Three months later my sister, Dawn and I were going down to the University of Delaware to see our niece, Stephanie, play rugby. Dawn had heard about the Lehigh Valley Walk to Defeat ALS that was having their walk the same day. She asked me about stopping at the walk before we left for the game to “just check things out”. So we stopped. We walked around, observed the things going on for a short time and we left.
Months had passed and it was in August of 2006 that Dawn mentioned about putting together a team to walk in the Lehigh Valley Walk to Defeat ALS. At this point I felt I was ready to be a part of something that would become a mission in my life. That mission was to raise funds that would go towards patient services that would help people live with ALS and research to hopefully one day find treatments and a cure for ALS.
At my clinic visit on August 31, I picked up a packet of information regarding registering a team for the walk. The first thing we needed to do was come up with a name for our team. I knew I wanted a name that had something to do with, what for many years was the love of my life, softball. I had the slogan in no time, Pitch To The “Katcher”, Strike Out ALS but we needed a team name. This wasn’t coming as easy. Dawn sought the help of her friend, Lisa, at work and with some quiet time thinking they came up with the name of Donna’s Dugout. It was the prefect fit I was looking for.
I wasn’t finished yet. I wanted a team t-shirt that all of my family and friends would wear on walk day to show their support of Donna’s Dugout. We still had two issues, how to pay for the t-shirts and who could I get to make the shirts? I came up with the idea of finding sponsors for the t-shirts and for a minimal donation their business name would be listed on the back of the t-shirts. I then spoke with Dr. Brad Lilly, who I was currently working for, and he spoke with his father who owns Lilly daVid, a garment manufacturing business and they agreed to make the t-shirts for us. Paul and I met with David and Brenda and with our logo design and the 13 sponsors Brenda then did a wonderful job designing the shirt. All people walking for Donna’s Dugout will proudly wear our t-shirt.
In 2006, our first year of participation in the Walk to Defeat ALS our team of over 70 walkers came out to support my mission of raising awareness and funds to support ALS research and patient services and raised over $11,000. In 2007 with over 100 walkers our team raised over $24,000.
On August 4, 2007, Donna’s Dugout sponsored an event with the Philadelphia Phillies Ballgirls vs. The Allentown Patriots Old-Timers in which all proceeds went towards the Walk to Defeat ALS. Not only did this event raise $2,507 but it also raised awareness and support in the Lehigh Valley of ALS and my mission of HOPE for all patients that one day treatments and a cure will be found to strike out ALS.
We look forward to participating in future walks and events. Check back to see future events. I’d like to thank everyone for your support of Donna’s Dugout.
PITCH TO THE “KATCHER"
STRIKE OUT ALS
It was June 22, 2005 when I received my diagnosis of ALS, Lou Gehrig’s Disease. When I was asked by my doctor, Dr. Mackin, how I felt about this, my response was, “well, I’m not going home to die”. There were too many things I knew I wanted to do before this thing would take the best of me but I needed time to figure out exactly what I wanted to do with this time.
Three months later my sister, Dawn and I were going down to the University of Delaware to see our niece, Stephanie, play rugby. Dawn had heard about the Lehigh Valley Walk to Defeat ALS that was having their walk the same day. She asked me about stopping at the walk before we left for the game to “just check things out”. So we stopped. We walked around, observed the things going on for a short time and we left.
Months had passed and it was in August of 2006 that Dawn mentioned about putting together a team to walk in the Lehigh Valley Walk to Defeat ALS. At this point I felt I was ready to be a part of something that would become a mission in my life. That mission was to raise funds that would go towards patient services that would help people live with ALS and research to hopefully one day find treatments and a cure for ALS.
At my clinic visit on August 31, I picked up a packet of information regarding registering a team for the walk. The first thing we needed to do was come up with a name for our team. I knew I wanted a name that had something to do with, what for many years was the love of my life, softball. I had the slogan in no time, Pitch To The “Katcher”, Strike Out ALS but we needed a team name. This wasn’t coming as easy. Dawn sought the help of her friend, Lisa, at work and with some quiet time thinking they came up with the name of Donna’s Dugout. It was the prefect fit I was looking for.
I wasn’t finished yet. I wanted a team t-shirt that all of my family and friends would wear on walk day to show their support of Donna’s Dugout. We still had two issues, how to pay for the t-shirts and who could I get to make the shirts? I came up with the idea of finding sponsors for the t-shirts and for a minimal donation their business name would be listed on the back of the t-shirts. I then spoke with Dr. Brad Lilly, who I was currently working for, and he spoke with his father who owns Lilly daVid, a garment manufacturing business and they agreed to make the t-shirts for us. Paul and I met with David and Brenda and with our logo design and the 13 sponsors Brenda then did a wonderful job designing the shirt. All people walking for Donna’s Dugout will proudly wear our t-shirt.
In 2006, our first year of participation in the Walk to Defeat ALS our team of over 70 walkers came out to support my mission of raising awareness and funds to support ALS research and patient services and raised over $11,000. In 2007 with over 100 walkers our team raised over $24,000.
On August 4, 2007, Donna’s Dugout sponsored an event with the Philadelphia Phillies Ballgirls vs. The Allentown Patriots Old-Timers in which all proceeds went towards the Walk to Defeat ALS. Not only did this event raise $2,507 but it also raised awareness and support in the Lehigh Valley of ALS and my mission of HOPE for all patients that one day treatments and a cure will be found to strike out ALS.
We look forward to participating in future walks and events. Check back to see future events. I’d like to thank everyone for your support of Donna’s Dugout.
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WHAT IS ALS
Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the
motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable. Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more, up to ten percent will live more than ten years.
Although the cause of ALS is not known and there is still no cure or means to control this devastating disease, there is hope through continued research and drugs in clinical trials that hold promise. Funding for research is essential to the fight against this debilitating condition.
In 1941 ALS took baseball great Lou Gehrig’s life. Lou Gehrig brought National attention to ALS in 1939 when he abruptly retired from baseball after being diagnosed with ALS. Known as the “Iron Horse” he became a hero through his courageous battle with ALS. He was elected to the Hall of Fame posthumously and was in the first class to be inducted.
Who Gets ALS?
ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.
The most common form of ALS in the United States, 90 to 95% of all cases is "sporadic" ALS. It may affect anyone, anywhere. "Familial" ALS (FALS) means the disease is inherited, occurring more than once in a family lineage (genetic dominant inheritance) accounts for a very small number of cases in the United States. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS.
What are the Symptoms of ALS?
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.
As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilator support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
How is ALS Diagnosed?
ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:
• electro diagnostic tests including electromyography (EMG) and nerve conduction velocity (NCV)
• blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals
• spinal tap
• x-rays, including magnetic resonance imaging (MRI)
• myelogram of cervical spine
• muscle and/or nerve biopsy
• thorough neurological examination
What is the Treatment for ALS?
Treatment is directed toward symptom management, e.g., cramps, spasms, shortness of breath, secretions. Drugs, physical therapy, occupational therapy, swallowing and speech therapy, and respiratory therapy are all used in the care of the patient with ALS. Ventilators and feeding tubes may also be used to support life as weakness increases. There is no cure for ALS, and there is only one drug approved by the FDA that is specifically designated for ALS. The drug is riluzole, brand name Rilutek®, and is thought to extend survival time for people with ALS.
ALS CAN STRIKE ANYONE
motor neurons in ALS eventually lead to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable. Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more, up to ten percent will live more than ten years.
Although the cause of ALS is not known and there is still no cure or means to control this devastating disease, there is hope through continued research and drugs in clinical trials that hold promise. Funding for research is essential to the fight against this debilitating condition.
In 1941 ALS took baseball great Lou Gehrig’s life. Lou Gehrig brought National attention to ALS in 1939 when he abruptly retired from baseball after being diagnosed with ALS. Known as the “Iron Horse” he became a hero through his courageous battle with ALS. He was elected to the Hall of Fame posthumously and was in the first class to be inducted.
Who Gets ALS?
ALS is a disorder that affects the function of nerves and muscles. Based on U.S. population studies, a little over 5,600 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) It is estimated that as many as 30,000 Americans have the disease at any given time. According to the ALS CARE Database, 60% of the people with ALS in the Database are men and 93% of patients in the Database are Caucasian.
Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.
The most common form of ALS in the United States, 90 to 95% of all cases is "sporadic" ALS. It may affect anyone, anywhere. "Familial" ALS (FALS) means the disease is inherited, occurring more than once in a family lineage (genetic dominant inheritance) accounts for a very small number of cases in the United States. Only about 5 to 10% of all ALS patients appear to have genetic or inherited form of ALS.
What are the Symptoms of ALS?
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
• muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
• twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
• impairment of the use of the arms and legs
• "thick speech" and difficulty in projecting the voice
• in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people. One person may experience tripping over carpet edges, another person may have trouble lifting and a third person's early symptom may be slurred speech. The rate at which ALS progresses can be quite variable from one person to another. Although the mean survival time with ALS is three to five years, many people live five, ten or more years. In a small number of people, ALS is known to remit or halt its progression, though there is no scientific understanding as to how and why this happens. Symptoms can begin in the muscles of speech, swallowing or in the hands, arms, legs or feet. Not all people with ALS experience the same symptoms or the same sequences or patterns of progression. But, progressive muscle weakness and paralysis are universally experienced.
Muscle weakness is a hallmark initial sign in ALS, occurring in approximately 60% of patients. Early symptoms vary with each individual, but usually include tripping, dropping things, abnormal fatigue of the arms and/or legs, slurred speech, muscle cramps and twitches and/or uncontrollable periods of laughing or crying.
The hands and feet may be affected first, causing difficulty in lifting, walking or using the hands for the activities of daily living such as dressing, washing and buttoning clothes.
As the weakening and paralysis continue to spread to the muscles of the trunk of the body the disease, eventually affects speech, swallowing, chewing and breathing. When the breathing muscles become affected, ultimately, the patient will need permanent ventilator support in order to survive.
Since ALS attacks only motor neurons, the sense of sight, touch, hearing, taste and smell are not affected. For many people, muscles of the eyes and bladder are generally not affected.
How is ALS Diagnosed?
ALS is a very difficult disease to diagnose. To date, there is no one test or procedure to ultimately establish the diagnosis of ALS. It is through a clinical examination and series of diagnostic tests, often ruling out other diseases that mimic ALS, that a diagnosis can be established. A comprehensive diagnostic workup includes most, if not all, of the following procedures:
• electro diagnostic tests including electromyography (EMG) and nerve conduction velocity (NCV)
• blood and urine studies including high resolution serum protein electrophoresis, thyroid and parathyroid hormone levels and 24 hour urine collection for heavy metals
• spinal tap
• x-rays, including magnetic resonance imaging (MRI)
• myelogram of cervical spine
• muscle and/or nerve biopsy
• thorough neurological examination
What is the Treatment for ALS?
Treatment is directed toward symptom management, e.g., cramps, spasms, shortness of breath, secretions. Drugs, physical therapy, occupational therapy, swallowing and speech therapy, and respiratory therapy are all used in the care of the patient with ALS. Ventilators and feeding tubes may also be used to support life as weakness increases. There is no cure for ALS, and there is only one drug approved by the FDA that is specifically designated for ALS. The drug is riluzole, brand name Rilutek®, and is thought to extend survival time for people with ALS.
ALS CAN STRIKE ANYONE
