NEALS is the Northeast Amytrophic Lateral Sclerosis Consortium. According to the NEALS definition: they are an international, independent, non-profit group of researchers who collaboratively conduct clinical research in Amyotrophic Lateral Sclerosis (ALS) and other motor neuron diseases. Their mission is to translate scientific advances into new treatments for people with ALS and motor neuron disease as rapidly as possible.
As I said before I am a nurse, and according to the definition of a nursing - it is a profession within the health care sector focused on the care of individuals, families, and communities so they may ATTAIN, MAINTAIN, or RECOVER optimal health and quality of life. And believe me I became a nurse to do exactly that!
Now that we have established the definition of NEALS and Nurse, I can tell you that Bert and I are not the type of people to sit and do nothing. Whether it be sports, careers, raising our children, name it...we do it to the best of our ability. We are a team, we see a challenge, we set goals, we create a plan, and we go for it. So, as far as we are concerned that is exactly how we are going to approach this disease and one of a couple things will happen either we will find a treatment or a cure, or we will have the best quality of life that is possible and in the end no matter what we will have succeeded. The team: our family and anyone else we can recruit, the challenge: well thats obvious, this horrible disease ALS, the goals: treatment, a cure, awareness, best quality of life, and the plan: do whatever it takes to achieve the goal starting with believing, hoping, having faith, and a clinical trial.
There are many clinical trials out there, they can be found on the NEALS site, clinicaltrials.gov, and all the research hospital sites. I think medicine would be no where without them. Research is a must to find treatments and cures for diseases. Some people may be pessimistic and say Lou Gehrig had ALS in 1938 and we still don't have a cure...well I am not a pessimist, Bert is definitely not a pessimist, and neither was Lou Gehrig he said it himself after retirement "Don't think I am depressed or pessimistic about my condition at present, I intend to hold on as long as possible." He proclaimed he was the luckiest man alive. If you research ALS since 1938 you will see progress has been made, no there is not a cure or treatment but there have been things ruled out and medicine has become more advanced, scientists keep pushing forward and I believe they will solve the mystery of ALS. There is one drug Riluzole that was FDA approved in 1995, there is question by some whether it is worth taking or not since it states that it extends life only 3-6 months, but I found a really good article on the ALS Association site by Edward Kasarskis, MD, PhD the director of the ALS clinic at the University of Kentucky Neuroscience Center in Lexington, Kentucky. He says there is evidence that the drug slows the disease, that the package insert is conservative, and newer studies have shown that it makes some patients feel better...basically it's viewing it as the glass being half full or half empty, and I am going to view the glass as half full! Bert is taking Riluzole and we both believe it slows ALS.
The drug trial Bert chose to participate in is a trial called A Novel Immunosuppression Intervention for the Treatment of Amyotrophic Lateral Sclerosis (ALS). Without boring anyone this trial in the nut shell is based off of another trial of neural stem cell injections into the spinal cord of patients with ALS at Emory University, Atlanta Georgia. In that trial one patient demonstrated improvement by objective clinical and electrophysiological measures (this has really never happened before). They believed five other patients in the stem cell trial seemed to have very slow disease progression. It was thought by some that the immunosuppression treatment given to the stem cell patients may have caused the improvement hence the basis for this trial. The trial is 15 months in total and every patient receives drug. If your interested in the details check it out on the NEALS link under browse recruiting trials.
So far we have had the interview and screening visit in January, they reviewed Bert's medical history and examined him to ensure he had ALS, then he gave blood and urine samples and we anxiously waited three days until finding out he got accepted! Three baseline visits come next, we will go on the second baseline visit this Tuesday and the third in April. These visits are to measure the progression of the disease then finally in May Bert will begin the drugs. The drugs consist of five immunosuppressive medications that are all FDA approved, they are the same drugs the patients in the stem cell trial were given. The trial is in Worcester, Massachusetts at the University of Massachusetts Medical School. Bert and I are excited to be participating in this research, we feel like it is important to play a part in contributing to improved health care for everyone living with ALS. As a team doctors, research centers, patients and caregivers can work together to work towards finding a treatment or a cure.
If you are an ALS patient or family following this blog then I hope you will browse clinical trials and find one to participate in that is right for you. If you are part of this journey with our family I hope you will follow Bert's progress with this trial and Believe as hard as you can, Hope as hard as you can, have as much Faith as you can, donate to ALS and research, and Pray.
Never stop believing in hope, because miracles happen everyday.
xoxo Jennifer
As I said before I am a nurse, and according to the definition of a nursing - it is a profession within the health care sector focused on the care of individuals, families, and communities so they may ATTAIN, MAINTAIN, or RECOVER optimal health and quality of life. And believe me I became a nurse to do exactly that!
Now that we have established the definition of NEALS and Nurse, I can tell you that Bert and I are not the type of people to sit and do nothing. Whether it be sports, careers, raising our children, name it...we do it to the best of our ability. We are a team, we see a challenge, we set goals, we create a plan, and we go for it. So, as far as we are concerned that is exactly how we are going to approach this disease and one of a couple things will happen either we will find a treatment or a cure, or we will have the best quality of life that is possible and in the end no matter what we will have succeeded. The team: our family and anyone else we can recruit, the challenge: well thats obvious, this horrible disease ALS, the goals: treatment, a cure, awareness, best quality of life, and the plan: do whatever it takes to achieve the goal starting with believing, hoping, having faith, and a clinical trial.
There are many clinical trials out there, they can be found on the NEALS site, clinicaltrials.gov, and all the research hospital sites. I think medicine would be no where without them. Research is a must to find treatments and cures for diseases. Some people may be pessimistic and say Lou Gehrig had ALS in 1938 and we still don't have a cure...well I am not a pessimist, Bert is definitely not a pessimist, and neither was Lou Gehrig he said it himself after retirement "Don't think I am depressed or pessimistic about my condition at present, I intend to hold on as long as possible." He proclaimed he was the luckiest man alive. If you research ALS since 1938 you will see progress has been made, no there is not a cure or treatment but there have been things ruled out and medicine has become more advanced, scientists keep pushing forward and I believe they will solve the mystery of ALS. There is one drug Riluzole that was FDA approved in 1995, there is question by some whether it is worth taking or not since it states that it extends life only 3-6 months, but I found a really good article on the ALS Association site by Edward Kasarskis, MD, PhD the director of the ALS clinic at the University of Kentucky Neuroscience Center in Lexington, Kentucky. He says there is evidence that the drug slows the disease, that the package insert is conservative, and newer studies have shown that it makes some patients feel better...basically it's viewing it as the glass being half full or half empty, and I am going to view the glass as half full! Bert is taking Riluzole and we both believe it slows ALS.
The drug trial Bert chose to participate in is a trial called A Novel Immunosuppression Intervention for the Treatment of Amyotrophic Lateral Sclerosis (ALS). Without boring anyone this trial in the nut shell is based off of another trial of neural stem cell injections into the spinal cord of patients with ALS at Emory University, Atlanta Georgia. In that trial one patient demonstrated improvement by objective clinical and electrophysiological measures (this has really never happened before). They believed five other patients in the stem cell trial seemed to have very slow disease progression. It was thought by some that the immunosuppression treatment given to the stem cell patients may have caused the improvement hence the basis for this trial. The trial is 15 months in total and every patient receives drug. If your interested in the details check it out on the NEALS link under browse recruiting trials.
So far we have had the interview and screening visit in January, they reviewed Bert's medical history and examined him to ensure he had ALS, then he gave blood and urine samples and we anxiously waited three days until finding out he got accepted! Three baseline visits come next, we will go on the second baseline visit this Tuesday and the third in April. These visits are to measure the progression of the disease then finally in May Bert will begin the drugs. The drugs consist of five immunosuppressive medications that are all FDA approved, they are the same drugs the patients in the stem cell trial were given. The trial is in Worcester, Massachusetts at the University of Massachusetts Medical School. Bert and I are excited to be participating in this research, we feel like it is important to play a part in contributing to improved health care for everyone living with ALS. As a team doctors, research centers, patients and caregivers can work together to work towards finding a treatment or a cure.
If you are an ALS patient or family following this blog then I hope you will browse clinical trials and find one to participate in that is right for you. If you are part of this journey with our family I hope you will follow Bert's progress with this trial and Believe as hard as you can, Hope as hard as you can, have as much Faith as you can, donate to ALS and research, and Pray.
Never stop believing in hope, because miracles happen everyday.
xoxo Jennifer
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