I have received a letter from NIH that is totally confusing for me. I have been researching MS for only 3 years now, non-stop. I know I am not the most intelligent person in the world. I have however, been around for 57yrs. and have not been idle during that time. I will tell you what. I will just post the information received and let you come to you own conclusions.
.
.
Multiple Sclerosis (MS) is the most common disabling neurological disease of young adults, with approximately 200 new cases diagnosed each week1, most of whom are people 20-40 years old. Although disease-modifying therapies are available for the 80-90% of patients diagnosed with relapsing-remitting MS (a form of MS in which temporary flare-ups of symptoms are followed by periods of partial or complete recovery), many of these therapies have potentially serious side effects, and none of them cure the disease. There are no FDA-approved treatments for progressive MS (a form of MS characterized by gradual decline in function with no distinct remissions).
The National Institute of Neurological Disorders and Stroke (NINDS) is the lead institute for MS research at NIH. In fiscal year 2014, NIH spent $102 million on MS research, with NINDS grants accounting for just over half of that total ($56 million). MS research at NINDS is focused on understanding the disease processes and on developing treatments for both the relapsing-remitting and progressive forms of MS.
Understanding MS disease processes:
• MS is an autoimmune disease in which a person’s own immune system attacks nerve fibers and myelin — the fatty substance that insulates nerve fibers —within the brain and spinal cord. NINDS-funded scientists are conducting MS studies exploring:
o myelin formation/degeneration
o immune system function and dysfunction in the brain and spinal cord
o blood-brain-barrier breakdown
o factors that repair or protect against neurodegeneration in MS.
• Studies indicate 2 – 3 times as many women are affected by MS as men, so NINDS-funded scientists are investigating the mechanisms underlying sex differences in MS, with emphasis on the role of hormones.
Nature vs. Nurture – Genetics and Environment in MS:
• Scientists have identified at least 110 gene variants2 that place people at risk of developing MS. NINDS-funded investigators continue explore whether and how these gene variants contribute molecular pathways that cause MS.
• As MS is up to 5 times more prevalent in temperate climates (e.g. northern U.S.) than in tropical climates, NINDS-funded researchers are investigating whether vitamin D levels, which are affected by sunlight, contribute to the risk of developing MS.
• Other environmental factors, such as exposure to viruses, cigarette smoking, and dietary salt,3 may also contribute to risk of developing MS.
Translating discoveries into therapies
• NINDS funds preclinical therapy development that is focused on finding better methods/tools to diagnose and monitor MS and treatments that stop or reverse the course of the disease. Potential therapeutic targets include:
o modulating immune system function
o repairing damaged myelin
o protecting neurons from damage.
Clinical trials of MS therapies
• Researchers in the NINDS NeuroNEXT4 phase II clinical trials network are testing a potential neuroprotective drug for progressive MS called ibudilast.
• Combination Therapy: The initial results from CombiRx, an NINDS-funded phase III trial to test the efficacy of combining two different FDA-approved treatments for relapsing remitting MS, showed glatiramer acetate and interferon β-1a together decreased the rate of MS-associated brain lesions5.
• Immunosupression and Hematopoietic Stem Cells: 3-year interim results from a phase II trial funded by the National Institute of Allergy and Infectious Disease (NIAID) showed high-dose immunosuppression followed by hematopoietic (from blood) stem cell transplant induces sustained remission in relapsing-remitting MS6.
NINDS Intramural Research Program on MS
• NINDS Intramural researchers helped establish and continue to improve MRI as a critical tool for monitoring disease progression and assessing the effects of treatments being evaluated in clinical trials.
• NINDS Intramural research played an important role in understanding why some patients develop a rare and potentially fatal brain infection (Progressive Multifocal Leukoencephalopathy, PML) when taking the MS-drug Tysabri.
• Within the NIH Clinical Center, NINDS investigators are conducting several early-stage clinical trials to test treatments for both primary and secondary progressive MS. These include Trials of Idebenone for Primary Progressive Multiple Sclerosis, which is testing the safety and effectiveness of the experimental drug idebenone, and RIVITaLISe, which is testing the safety and effectiveness of rituximab (a drug used to treat rheumatoid arthritis) in patients with secondary progressive MS.
1 Neurology. 2007 Jan 30;68(5):326-37
2 Nat Genet. 2013 Nov;45(11):1353-60.
3 http://www.nih.gov/researchmatters/march2013/03182013autoimmune.htm
4 https://www.neuronext.org/nn102-sprint-ms
5 Ann Neurol. 2013 Mar;73(3):327-40.
6 JAMA Neurol. 2015 Feb;72(2):159-69
MAR
2016
About the Author:
A little about myself: I was born Carl Levon Jones in Conway hospital in 1959 to Hazel Elizabeth Jones. I am the third of four children. My mother never married. This today would be normal but in the old days, it was different. Maybe it was the beginning of the change in view. I was raised by my grandparents from the age of 1 when we moved to Maryland. My mother was still a big part of my life, as she and a few sisters had moved to New York to try to make a living instead of the depressed south. I lived and grew up with my grandparents, brother and sister and cousins until I entered the military at 19 years of age. I spent 12 years in the Army learning to be an electronics technician, just to have computers take over the industry. I, therefore, had to relearn electronics with computers being the main focus. No, I am not talking Windows and Microsoft, but Fortran and different flavors of UNIX creating GUIs. I rose through the IT Field from the bottom, to be a Manager at different DOD Contractors. I was married to my wife, Patt in 1981. We have been together ever since, 38yrs. We had one son, Carl Levon Jones II the following year while still serving in the military. I am a man who believes strongly in family and relatives. I am as close to Patt’s family as I am to my own. Closer in some cases. Unfortunately, my rise in IT was interrupted when I contracted the Autoimmune Disease, Multiple Sclerosis in 2012, diagnosed in 2013. I had to leave work in late 2014. I have been dealing with the nerve damage(Neurological) the disease caused. I went to Clinica Ruiz in Puebla, Mexico for a procedure called Hematopoietic Stem Cell Transplantation (HSCT). It is not offered for my type of MS PPMS in the United States. A battle we have been fighting for some time now. This Blog is about my; MS Journey, my thoughts (Poetry) throughout the years, my experiences and my friends and family (Photo Gallery). Hopefully, this Blog will help at least one person in their decision to conquer the MS Beast, and help to get this procedure available in the United States and covered by the Insurance we pay so much for.