A Long Walk for Ataxia
Donation protected
Hello Good People,
My name is Michael De Rosa Sr. and I was diagnosed with Ataxia (Spinocerebellar Ataxia) after returning from spending three years in Iraq (2008-2011). This is highly likely from numerous concussions from military airborne operations while in the Army and the close proximity of impact from a rocket attack while serving the Army after retirement. Due to numerous symptom changes I was going through and how progressive they were happening, I was first told it could be ALS (Lou Gehrig’s disease). After some tests, the doctors ruled this disease out and said it was very likely Primary Progressive Multiple Sclerosis (MS). This went on for 10 months until I fired my doctor and spent a week at the Mayo Clinic in Rochester, MN. All the tests and doctor’s conferring presented me with the diagnosis of Spinocerebellar Ataxia (SCA). At that time there were approximately 48 different types of SCA and in order to determine which one I had, I would need genetic testing. Unfortunately, my medical insurance did not cover the $17K tests and I battled with my military insurance and the VA for three years until it was finally approved. At the time of testing, the number of types increased to nearly 65 and the cost increased to $20K. My tests turned out negative for the full panel. So, this means that the mutation I have has yet to be discovered within the medical research community.
Ataxia is a degenerative disease of the nervous system. Many symptoms of Ataxia can mimic those of being drunk – slurred speech, stumbling, falling, and incoordination. All are related to degeneration of the part of the brain, called the cerebellum, which is responsible for coordinating movement. Ataxia is a disease that affects people of all ages. Age of symptom-onset can vary widely, from childhood to late adulthood. Complications from the disease are serious, oftentimes debilitating, and can be life-shortening. Ataxia is an umbrella term used to classify a group of diseases that include: Ataxia Telangiectasia / Episodic Ataxia / Friedreich’s Ataxia / Multiple System Atrophy / Sporadic Ataxia / and Spinocerebellar Ataxia. Speech and language therapy, occupational therapy, and physical therapy are common treatment options. They are sometimes used in conjunction with medication therapy to help manage symptoms. There is no treatment or cure for Ataxia yet.
My current physical status remains fair and decent where I am still capable of testing my character and strength. A challenge event that I have always wanted to conduct is the Bataan Memorial Death March www.bataanmarch.com. This is a challenging march being conducted on 25 March 2018 through the high desert terrain of the White Sands Missile Range consisting of 26.2 miles of high desert and forging ahead with pure perseverance. The memorial march is conducted in honor of the heroic U.S. and Filipino service members who defended the Philippine Islands during World War II, sacrificing their freedom, health, and, in many cases, their very lives. Since I am retired military it only seems like the perfect event to conduct for raising donations.
The end-state is to raise as many funds as possible (Goal of $10,000(+)) for continued research from some of the most renowned doctors and researchers dedicated to finding a cure for all types of Ataxia. Though I live with this disease every day and have adjusted and readjusted my physical norms each year, I am extremely motivated and feel compelled to endure this challenge for my own disease and the tens of thousands of peers affected with Ataxia in the United States and the world. I would like to present a huge check to the National Ataxia Foundation at this year’s Annual Conference in Philadelphia.
Thank you in advance for your support and catch my FB page (https://www.facebook.com/mike.derosa.50) on the day of the event and after for postings at the mile markers throughout the course.
My name is Michael De Rosa Sr. and I was diagnosed with Ataxia (Spinocerebellar Ataxia) after returning from spending three years in Iraq (2008-2011). This is highly likely from numerous concussions from military airborne operations while in the Army and the close proximity of impact from a rocket attack while serving the Army after retirement. Due to numerous symptom changes I was going through and how progressive they were happening, I was first told it could be ALS (Lou Gehrig’s disease). After some tests, the doctors ruled this disease out and said it was very likely Primary Progressive Multiple Sclerosis (MS). This went on for 10 months until I fired my doctor and spent a week at the Mayo Clinic in Rochester, MN. All the tests and doctor’s conferring presented me with the diagnosis of Spinocerebellar Ataxia (SCA). At that time there were approximately 48 different types of SCA and in order to determine which one I had, I would need genetic testing. Unfortunately, my medical insurance did not cover the $17K tests and I battled with my military insurance and the VA for three years until it was finally approved. At the time of testing, the number of types increased to nearly 65 and the cost increased to $20K. My tests turned out negative for the full panel. So, this means that the mutation I have has yet to be discovered within the medical research community.
Ataxia is a degenerative disease of the nervous system. Many symptoms of Ataxia can mimic those of being drunk – slurred speech, stumbling, falling, and incoordination. All are related to degeneration of the part of the brain, called the cerebellum, which is responsible for coordinating movement. Ataxia is a disease that affects people of all ages. Age of symptom-onset can vary widely, from childhood to late adulthood. Complications from the disease are serious, oftentimes debilitating, and can be life-shortening. Ataxia is an umbrella term used to classify a group of diseases that include: Ataxia Telangiectasia / Episodic Ataxia / Friedreich’s Ataxia / Multiple System Atrophy / Sporadic Ataxia / and Spinocerebellar Ataxia. Speech and language therapy, occupational therapy, and physical therapy are common treatment options. They are sometimes used in conjunction with medication therapy to help manage symptoms. There is no treatment or cure for Ataxia yet.
My current physical status remains fair and decent where I am still capable of testing my character and strength. A challenge event that I have always wanted to conduct is the Bataan Memorial Death March www.bataanmarch.com. This is a challenging march being conducted on 25 March 2018 through the high desert terrain of the White Sands Missile Range consisting of 26.2 miles of high desert and forging ahead with pure perseverance. The memorial march is conducted in honor of the heroic U.S. and Filipino service members who defended the Philippine Islands during World War II, sacrificing their freedom, health, and, in many cases, their very lives. Since I am retired military it only seems like the perfect event to conduct for raising donations.
The end-state is to raise as many funds as possible (Goal of $10,000(+)) for continued research from some of the most renowned doctors and researchers dedicated to finding a cure for all types of Ataxia. Though I live with this disease every day and have adjusted and readjusted my physical norms each year, I am extremely motivated and feel compelled to endure this challenge for my own disease and the tens of thousands of peers affected with Ataxia in the United States and the world. I would like to present a huge check to the National Ataxia Foundation at this year’s Annual Conference in Philadelphia.
Thank you in advance for your support and catch my FB page (https://www.facebook.com/mike.derosa.50) on the day of the event and after for postings at the mile markers throughout the course.
Organizer
Mike De Rosa
Organizer
Carthage, NC
