FOR IMMEDIATE RELEASE New York Researcher Receives $240,000 for Myasthenia Gravis Research Funded by American Brain Foundation and Myasthenia Gravis Foundation of America PHILADELPHIA – A New York researcher will receive $240,000 to continue his research into myasthenia gravis— a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness—through the Clinician-Scientist Development Award in Myasthenia Gravis and Related Disorders of the Neuromuscular Junction funded by the American Brain Foundation and Myasthenia Gravis Foundation of America. The award was presented in Philadelphia during the American Academy of Neurology’s 66th Annual Meeting, the world’s largest meeting of neurologists. Ricardo Horacio Roda, MD, PhD, an assistant professor in the Department of Neurology at the New York University Langone Medical Center in New York, received this award for his investigation into a particular form of myasthenia gravis caused by antibodies against the LRP4 molecule, a component of the neuromuscular junction.  “Antibodies against the LRP4 molecule has just been identified as a cause of myasthenia gravis, and the mechanisms underlying this form of myasthenia are not well understood,” said Roda. “Understanding the mechanisms of the disorder will help to design better treatment strategies.” The three-year award will consist of an annual salary of $75,000 plus $5,000 per year in educational expenses. Clinical research is the fundamental transition stage between discovery and treatment. Clinical research provides the scientific basis for all forms of care, addresses patient and caregiver needs and is the backbone for drug development and cost-effectiveness studies needed to improve lives. Fellowships provide recipients with up to three years of “protected time,” with salary that allows them to continue important research projects. Added Roda, “I feel privileged to receive this award as it will allow me to further investigate the mechanism underlying some of the most difficult to treat forms of myasthenia gravis.” Learn more about myasthenia gravis at https://patients.aan.com and http://myasthenia.org. About the American Brain Foundation: The American Brain Foundation supports crucial research and education to discover causes, improved treatments, and cures for the brain and other nervous system diseases. One in six people is affected by brain diseases such as Alzheimer’s disease, traumatic brain injury, stroke, Parkinson’s disease, multiple sclerosis, autism, and epilepsy.   For more information about the American Brain Foundation and how you can support research, visit http://www.AmericanBrainFoundation.org or visit us on Facebook, Twitter, Google+, and YouTube. About the Myasthenia Gravis Foundation of America: MGFA is the only national organization dedicated to myasthenia gravis, working with both the MG Community and the health care professionals focusing on research, awareness and advocacy. For more information about the Myasthenia Gravis Foundation of America and how you can support research, visit http://myasthenia.org or visit us on Facebook.

Myasthenia Gravis Foundation of America, Inc. 355 Lexington A, 15th Floor | New York, NY 10017 ph: (212) 297-2156 or (800) 541-5454 | fax: (212) 370-9047 office@myasthenia.org | www.myasthenia.org

160 MYASTHENIA GRAVIS IN CYPRUS

ROUGHLY 160 Cypriots are estimated to suffer from myasthenia gravis, a disease that presents with various kinetic problems that often lead to disability, according to Health Minister Petros Petrides.
“It is an extremely rare disease, afflicting 20 in 100,000 people, which means that 160 Cypriot citizens suffer from it,” he said speaking at an event heralding the Annual European Myasthenia Gravis week – February 24 to March 2.
Petrides said “the disease can be met in any race, gender and age group, and is not contagious or hereditary, though it may develop in more than one member within a family.”
The introduction of a National Committee for rare conditions, he said, marks the first attempt at a holistic and coordinated effort against these diseases.
According to the minister, “the strategy will focus on four areas: prevention, treatment, supportive care and research”, as well as “the introduction of consistent record-keeping of incidents of rare conditions in order to best organise services offering care to those in need.”
The health ministry offers all related services for free, including specialised neurological exams, up-to-date pharmacotherapy, treatment interventions, as well as supportive treatments like physiotherapy and ergotherapy.
“We aim to continually improve our services, and hope that implementation of our new strategic plan on rare conditions will see patients enjoying significantly more advantages than they currently do,” the minister concluded.

WANTED AN ASSISTANT TO HELP WITH HEALTHCARE

I was not quit aware of have it was to have an illness. I not talking about just the symptoms and the medications. I am speaking about keeping up with the appointments. To truly be a full time patient takes work. First you are of course monitoring your self. Making sure you are eating the correct foods. As much as I would love to eating whole cakes and gallons of ice cream is not a good look. especially when you may already have deficiencies. So eating healthy would be the most logical thing to do. Then there is the medications.You must make sure you are update with refills.Get them rewritten at time of Doctor visit. If you are using mail order services. No how long they take to process orders and if you need a hard copy script versus e-script. Because without  all his knowledge it can leave you with no medication. I have experienced this first hand.If you have a pharmacy plan no your co-pay. (For the sake of sanity I will not go into Medicare programs.)So while monitoring what yo put into your mouth. You must also monitoring how it effects your body. Side effects and the symptoms or action of drug. So yo must research. Research what side effects are for a particular drug. An report if you are experiencing any of the side effects. Are you experiencing some type of symptom. If so what is it? Is it apart of your illness? Or a result of a side effect?

HEALTHCARE WORKER UNHARDEN THY HEART.

Not until my current situation had I noticed how insensitive health care workers can become. Since diagnosed with Myasthenia Gravis,over 3 years ago I have been traumatized. You see I am a former healthcare worker. And I have been on the other side as well. So I empathize with a lot of the woes that can effect the profession. The work conditions,long hours,difficult patients and unyielding family members,rules and regulations.Oh I no I can go on and on. But I always performed my job the same whether watched or not watched. I feared not doing the correct thing could bring harm upon my patient. Or talking rudely or disrespectfully was not warranted.I respected the fact I was the Healthy one.  But it comes to my attention as a patient myself how condescending and rude healthcare workers can be. I am sure it happens over a period of time thru many cases of abuse. Abuse by the system,patients,colleagues and others. I have had a technician speak harshly to me because of my disability benefits. She all but said her friend was much more deserving of the benefits and was unable to obtain . Or a Nurse who was so condescending that she questioned my symptoms I experienced. As if the information received in a textbook could stand up against a real live patient. Mentally writing me off as not knowing what I felt or able to interpret the feelings. As well as a Practitioner who refused to believe the pain she was inflicting upon me was not an acceptable part of a treatment. And I should swallow the pain with out complaining.And this is just to name a few. I practiced Nursing for 0ver 22 years. S o to say I don't understand would be wrong. I do understand the plight of the Hospital Nurse,Nursing Home Nurse, Home Health Nurse, Managerial Nurse,Private duty Nurse and a host of scenarios attached. Because I lived them. Some where along the way some of us experience an hardening of the heart. And a smug exterior supported by medical knowledge. Which is a plus and a minus. Because I know the difference between "Good Care" and "Minimal Care". And it makes me ever so much more anxious when it comes to Doctor visits. Not knowing if I am safe to be a patient benefiting from the expertise of the Medical Professional. Or the Healthcare worker/Patient that has to identify my self to guarantee some respect for my reporting of problem.Which only places the worker on their guard. It often worries me to think of the patients without the small amount of Medical knowledge I have. To not have the chance to correct the errors that I have experienced all because they didn't know. Or the healthcare workers that perform at minimal capacity because they feel they are safe in their ignorance. As a closing note. I did not choose my current condition. Nor did I have an idea I would have to end my Nursing career because of illness. So with that said,remember  Healthcare Worker that patient you gave poor service to could one day be you!

Myasthenia Gravis Awareness

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THE GOOD OLD DAYS

The Good old days for some might have been when you were a child. Under most circumstances I would agree. But for me the good old days are when I had the energy and the strength to do anything I wanted. For me that is my Pre-Mayasthenia days. I cannot speak for most people. But I feel I have had Myasthenia long before  I was diagnosed. Although prior to diagnosis I lived my life like I thought it was normal. I made adjustments for my lack of energy. And supplemented with coffee when ever needed. But I was able to hold down 2 jobs and raise 4 children without the help of their father or Government assistance. The good old days! Now I long for the days when my butt seems  NOT to be glued to the chair. And it appears I cannot seem to get going. I must admit that I do not have the energy lapse everyday. But on the days that I do. It frustrates me so when I can not physically  perform the duties I want to do. It is when I really feel Handicapped. Wow I said handicapped. But that is how I feel when I can not accomplish a task. I continue to have the drive and desire to excel as always. But even when I am having a great day I pay for it later. So today is one of the payback days. I understand it,but I just don't agree with it.....lol.. But it prompted me to write this post..... I just had to share........Awwww...... THE GOOD OLD DAYS!

New cause found for muscle-weakening disease myasthenia gravis

New cause found for muscle-weakening disease myasthenia gravis

Posted By News On November 11, 2013 - 4:31pm

Augusta, Ga. – An antibody to a protein critical to enabling the brain to talk to muscles has been identified as a cause of myasthenia gravis, researchers report.
The finding that an antibody to LRP4 is a cause of the most common disease affecting brain-muscle interaction helps explain why as many as 10 percent of patients have classic symptoms, like drooping eyelids and generalized muscle weakness, yet their blood provides no clue of the cause, said Dr. Lin Mei, Director of the Institute of Molecular Medicine and Genetics at the Medical College of Georgia at Georgia Regents University.
"You end up with patients who have no real diagnosis," Mei said.
The finding also shows that LRP4 is important, not only to the formation of the neuromuscular junction – where the brain and muscle talk – but also maintaining this important connection, said Mei, corresponding author of the paper in The Journal of Clinical Investigation.
Mei and his colleagues first reported antibodies to LRP4 in the blood of myasthenia gravis patients in the Archives of Neurology in 2012. For the new study, they went back to animals to determine whether the antibodies were harmless or actually caused the disease. When they gave healthy mice LRP4 antibodies, they experienced classic symptoms of the disease along with clear evidence of degradation of the neuromuscular junction.
LRP4 antibodies are the third cause identified for the autoimmune disease, which affects about 20 out of 100,000 people, primarily women under 40 and men over age 60, according to the National Institutes of Health and Myasthenia Gravis Foundation of America, Inc.

This is Dr. Lin Mei, Director of the Institute of Molecular Medicine and Genetics at the Medical College of Georgia at Georgia Regents University.
(Photo Credit: Phil Jones)

An antibody to the acetylcholine receptor is causative in about 80 percent of patients, said Dr. Michael H. Rivner, MCG neurologist and Director of the Electrodiagnostic Medicine Laboratory, who follows about 250 patients with myasthenia gravis. Acetylcholine is a chemical released by neurons which act on receptors on the muscle to activate the muscle. More recently, it was found that maybe 10 percent of patients have an antibody to MuSK, an enzyme that supports the clustering of these receptors on the surface of muscle cells.
"That leaves us with only about 10 percent of patients who are double negative, which means patients lack antibodies to acetylcholine receptors and MuSK," said Rivner, a troubling scenario for physicians and patients alike. "This is pretty exciting because it is a new form of the disease," Rivner said of the LRP4 finding.
Currently, physicians like Rivner tell patients who lack antibody evidence that clinically they appear to have the disease. Identifying specific causes enables a more complete diagnosis for more patients in the short term and hopefully will lead to development of more targeted therapies with fewer side effects, Rivner said.
To learn more about the role of the LRP4 antibody, Mei now wants to know if there are defining characteristics of patients who have it, such as more severe disease or whether it's found more commonly in a certain age or sex. He and Rivner have teamed up to develop a network of 17 centers, like GR Medical Center, where patients are treated to get these questions answered. They are currently pursuing federal funding for studies they hope will include examining blood, physical characteristics, therapies and more.
Regardless of the specific cause, disease symptoms tend to respond well to therapy, which typically includes chronic use of drugs that suppress the immune response, Rivner said. However, immunosuppressive drugs carry significant risk, including infection and cancer, he said.
Removal of the thymus, a sort of classroom where T cells, which direct the immune response, learn early in life what to attack and what to ignore, is another common therapy for myasthenia gravis. While the gland usually atrophies in adults, patients with myasthenia gravis tend to have enlarged glands. Rivner is part of an NIH-funded study to determine whether gland removal really benefits patients. Other therapies include a plasma exchange for acutely ill patients.

Source: Medical College of Georgia at Georgia Regents University