Help Eddie Pires Beat MS!
Donation protected
Hello, my name is Ed Pires and I am 55 years old and have MS. I am hoping to raise the funds that I will need for a stem cell procedure in Moscow, Russia that has a good chance of stopping further progression of my Primary Progressive Multiple Sclerosis and giving me my life back for me and my family.
Approximately 5 years ago, I started to have some difficulty with tripping and noticed that my legs would tire easily when walking or exercising. This is from a person who had been a lifelong athlete and been riding his road bicycle between 100 and 200 miles per week for years. After seeing a number of Dr's and having many tests performed, it was determined that I suffered from Multiple Sclerosis. Since diagnosed I have been fighting the disease with exercise, medications and alternative therapies, but it is now getting the better of me. It has been exhausting and financially taxing, but I won't give up!
I was initially diagnosed with Relapsing/Remitting MS, which is characterized by intermittent attacks and remissions of the disease, with a gradual worsening of overall physical capabilities. The problem I had with the diagnosis is that I never experienced attacks, just a gradual worsening of my symptoms. It became clear to me that I was not in fact Relapsing/Remitting, but either Primary or Secondary progressive MS. My Dr. now concurs that I am primary progressive, which is the worst type of MS to have. It involves a steady, inexorable physical decline and will in most cases, leave it's victim's unable to
care for themselves over time. If severe enough, it can lead to death.
My disease is moving quickly and I find it difficult to walk more than 1/10th of a mile without experiencing sheer exhaustion. There are no drugs for Primary Progressive MS. It is incurable with the current array of drugs on the market today. My neurologist can do nothing to slow or avoid my deterioration.
In the last decade, a process that has been used with Cancer patients has shown effectiveness in dealing with MS, even in its most severe form. It is called HSCT (Hematopoietic Stem Cell Transplantation), and involves the extraction of your own stem cells and then storing those cells while your immune system is severely weakened by chemotherapy. Once your immune system is sufficiently compromised to "forget" it has MS, the stem cells are reintroduced to the system. The immune system is then reset, hopefully without the mechanism intact that was causing it to attack the nerves.
This therapy has shown to have an efficacy rate of between 60-85% in clinical trials ongoing in the US and elsewhere. Unfortunately, unless you can get into one of these trials, the cost of doing this here in the US is over $150,000. I don't have the money to do that, nor the time to wait for this procedure to be
approved here. My body is breaking down quickly and I am galloping toward disability.Fortunately, the therapy is available overseas for far less money and has been done so many times that it is now safe as well as effective. I have applied and been accepted to have the therapy performed in Moscow, Russia under the care of Dr. Dennis Fedorenko. He waived his stated age criteria of 50 years old and admitted me on a compassionate basis because of the aggressiveness of my disease. I have a date of November 10, 2013 to begin my treatment.
I am coming to all of you because, although less expensive in Russia, the procedure will still cost $40,000 not including travel and aftercare here in the US. When the final bills are tallied, I believe that it will cost closer to $60000 or more. I am currently working and plan on paying for this one way or the other, but any financial assistance I can get will be a huge help. Despite having healthcare I have spent the last 5 years depleting my savings fighting this disease.
Unfortunately ,I will miss literally months of work after having this procedure and I am not sure my fledgling business will survive my prolonged absence. This also makes every penny that I receive even more meaningful. I am putting my life on hold to have a chance at regaining a portion of my former self and need to make this my number one priority at this time for me and my family. It's now or never.
Approximately 5 years ago, I started to have some difficulty with tripping and noticed that my legs would tire easily when walking or exercising. This is from a person who had been a lifelong athlete and been riding his road bicycle between 100 and 200 miles per week for years. After seeing a number of Dr's and having many tests performed, it was determined that I suffered from Multiple Sclerosis. Since diagnosed I have been fighting the disease with exercise, medications and alternative therapies, but it is now getting the better of me. It has been exhausting and financially taxing, but I won't give up!
I was initially diagnosed with Relapsing/Remitting MS, which is characterized by intermittent attacks and remissions of the disease, with a gradual worsening of overall physical capabilities. The problem I had with the diagnosis is that I never experienced attacks, just a gradual worsening of my symptoms. It became clear to me that I was not in fact Relapsing/Remitting, but either Primary or Secondary progressive MS. My Dr. now concurs that I am primary progressive, which is the worst type of MS to have. It involves a steady, inexorable physical decline and will in most cases, leave it's victim's unable to
care for themselves over time. If severe enough, it can lead to death.
My disease is moving quickly and I find it difficult to walk more than 1/10th of a mile without experiencing sheer exhaustion. There are no drugs for Primary Progressive MS. It is incurable with the current array of drugs on the market today. My neurologist can do nothing to slow or avoid my deterioration.
In the last decade, a process that has been used with Cancer patients has shown effectiveness in dealing with MS, even in its most severe form. It is called HSCT (Hematopoietic Stem Cell Transplantation), and involves the extraction of your own stem cells and then storing those cells while your immune system is severely weakened by chemotherapy. Once your immune system is sufficiently compromised to "forget" it has MS, the stem cells are reintroduced to the system. The immune system is then reset, hopefully without the mechanism intact that was causing it to attack the nerves.
This therapy has shown to have an efficacy rate of between 60-85% in clinical trials ongoing in the US and elsewhere. Unfortunately, unless you can get into one of these trials, the cost of doing this here in the US is over $150,000. I don't have the money to do that, nor the time to wait for this procedure to be
approved here. My body is breaking down quickly and I am galloping toward disability.Fortunately, the therapy is available overseas for far less money and has been done so many times that it is now safe as well as effective. I have applied and been accepted to have the therapy performed in Moscow, Russia under the care of Dr. Dennis Fedorenko. He waived his stated age criteria of 50 years old and admitted me on a compassionate basis because of the aggressiveness of my disease. I have a date of November 10, 2013 to begin my treatment.
I am coming to all of you because, although less expensive in Russia, the procedure will still cost $40,000 not including travel and aftercare here in the US. When the final bills are tallied, I believe that it will cost closer to $60000 or more. I am currently working and plan on paying for this one way or the other, but any financial assistance I can get will be a huge help. Despite having healthcare I have spent the last 5 years depleting my savings fighting this disease.
Unfortunately ,I will miss literally months of work after having this procedure and I am not sure my fledgling business will survive my prolonged absence. This also makes every penny that I receive even more meaningful. I am putting my life on hold to have a chance at regaining a portion of my former self and need to make this my number one priority at this time for me and my family. It's now or never.
Organizer
Edmund Pires
Organizer
Bristol, RI
