News

How To Zoom … Join The Next Support Group Meeting

Zoom is a video conferencing tool for virtual meetings and hangouts. It can be used for work and to livestream things like classes while we’re all in self-isolation. Like Skype or FaceTime, Zoom allows you to see the users in a chat face-to-face, on a phone, tablet, or computer. As many as 100 participants can join a Zoom conference at once!

To Download Zoom

Zoom is a free platform, which means it can be accessed on any device with an app store. You can download it from the app store on your phone, on your computer, or on a tablet. You can download Zoom from the Apple Store if you have iOS or on Google Play if you have an Android.

 

If you have an iPhone, click “get” and then open once the app downloads; if you have an Android, click “install” then open the app once it’s finished downloading.Alternatively, you can download Zoom for your computer by visiting Zoom’s online Download Zoom

COVID-19: UVA DISCOVERY SPURS CLINICAL TRIAL OF ANTIDEPRESSANT TO FIGHT VIRUS

UVA researchers Dorian Rosen, left, and Alban Gaultier found last year that fluvoxamine may stop deadly sepsis inflammation, in which the immune response spirals out of control.

An antidepressant medication is being tested as a potential treatment for COVID-19 after University of Virginia School of Medicine researchers determined it may prevent dangerous overreactions by the immune system.

Researchers at the Washington University School of Medicine in St. Louis are launching a clinical trial to determine if the drug fluvoxamine can prevent “cytokine storms,” in which the body is flooded with immune cells called cytokines. This frenzied immune response can lead to life-threatening organ failure and has been a major concern in patients with severe COVID-19 infections.
to read this article inits entirety click here:UVA Research / covid 19

Mother’s Day, multiple sclerosis, and motherhood

Happy Mother’s Day to all you moms, grandmothers, stepmothers, godmothers, foster mothers, and mothers-to-be. This weekend (at least for those of us in the Northeast) is often the first lovely, warm, sunny time to be out of doors with the family doing things together. We rake, reseed, plant, weed, and mulch our yards and gardens or take time out to go for a hike in the springtime that promises summer is coming. We get the grills out and cleaned and let the family cook for us and wait on us instead of the other way around. It is a time of joy, newness, relaxation, and hope.

Over the years of living with multiple sclerosis, I have discovered this day is also often a day when I can succumb easily to being overheated. With that, my MS symptoms can often reawaken and put a damper on the day’s activities. You would think that after more than 20 years of knowing this to be a cause of problems, I would recognize immediately and take action to get ahead of this. But it often takes someone noticing I am not my usual chipper self to get me into the shade or remind me to put on a vest, collar, or hat to assist in cooling me down and putting that spring back into my step. After a long winter with much time spent indoors, we naturally want to go and do things that, for us, are rites of spring, things that get us closer to nature, the soil, and our families. For those of us with MS, that may mean preparing our loved ones to pick up on cues that may save the day and keep the joy in time together.
To read this article in its entirety click here:MS and Motherhood

Bafiertam™ Oral Capsules Approved by the FDA for Relapsing Forms of MS

On April 30, 2020, Banner Life Sciences LLC (Banner), a privately held specialty pharmaceutical company, announced the United States Food and Drug Administration (FDA) approval of Bafiertam™ (monomethyl fumarate) delayed-release oral capsules to treat relapsing forms of multiple sclerosis (MS). This approval includes the treatment of clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), and active secondary-progressive MS (SPMS). Banner has not yet announced when the medication will be available to the MS community.

Bafiertam is a “bioequivalent alternative” to Biogen’s Tecfidera® (dimethyl fumarate), which means that the active ingredient and site of action do not differ significantly between the two medications. The therapeutic effect is assumed to be equivalent. Similar to Vumerity™ (diroximel fumarate), which was approved in October 2019 and is also in the same class of MS therapy as Tecfidera, Bafiertam is believed to cause fewer gastrointestinal (GI) side effects. Examples of these side effects include diarrhea, nausea, vomiting, and abdominal pain. This reduction in GI symptoms may especially occur early in the treatment regimen.

The exact mechanism of action by which these medications exert their therapeutic effect in MS is not completely understood. However, the monomethyl fumarate molecule is thought to activate an antioxidant protein that reduces oxidative stress, which in turn slows damage to protective nerve fibers in the brain. Clinical trials with Tecfidera showed a reduction in relapse rate, a delay in progression of physical disability, and a slowing in the development of brain lesions, as compared to placebo. Click on link to read the article in its entirety:  Bafiertam

Sensor detects biomarker of early-stage multiple sclerosis

Researchers at the Federal University of São Carlos (UFSCar) in Sorocaba (state of São Paulo, Brazil) have developed a technique to diagnose early-stage multiple sclerosis, a disease of the central nervous system, and distinguish it from neuromyelitis optica, a rare, yet severe autoimmune inflammatory process also affecting the central nervous system.

The immune system of a person with these diseases produces antibodies that attack and damage part of the myelin sheath, an insulating layer that protects nerves, including those in the brain and spinal cord, and aids the transmission of electrical impulses. Permanent lesions form in brain regions over time.
To read this article in its entirety click on link: Biomarker for early MS detection

 

Isolation, Communication and Connection: Keeping the Lifelines Open

Today’s climate is unlike anything we have seen before. News reports and daily briefings continue to change from one day to the next while our search for answers continues to fall flat. We must not allow ourselves to linger in a state of unpredictable limbo or the toxic fear of the unknown. Instead, we need to focus on what’s most important today, tomorrow, and the next days to come. We must take the steps needed to care of ourselves, to be present, and to be there for others. It’s up to each and every one of us to be safe, informed, responsible and compassionate.

Although some people may feel they’ve been somewhat abandoned or left to deal with everything by themselves, this is not the case. We may be physically distanced from one another, but we still have the opportunity to remain connected socially. There are many solutions available which can help keep the lifelines open.
Click this link to read the article in its entirety: Keep Lifelines Open

May Events Canceled to help stop spread of illness

Roanoke Valley MS Support Groups – Day Group & Night Group meetings Canceled

All other MS Alliance events for May 2020 canceled.  The cancellations are to help STOP the spread of illness. People with MS are high risk so let’s help each other out.

Don’t forget MS Awareness share your story and educate others about MS. Now that we are in May and this virus has us staying at home, please reach out to your MS family and friends by making a call or social media check on one another. Bring a smile to someones face by a short phone call today.

Dealing with Doubters: The Secret Side Effect of Unpredictable and Invisible Symptoms

The unpredictable nature of relapsing MS can make life especially difficult. Balancing home-life, work, parenting, and self-care is tough on its own, but when your symptoms come and go, it’s hard to know what level of responsibility you’ll be able to handle from day to day. It’s also tough to plan for social occasions, travel, household projects, or career advancement when the fear of a symptom flare-up constantly looms over you. As challenging as this uncertainty is to manage, it can be even more difficult to explain your concerns to those who have never lived through it. As a result, it’s not uncommon for people with unpredictable symptoms to be met with doubt by people who don’t fully understand the nature of their condition.

The problem is compounded when your symptoms are both unpredictable and invisible. Invisible symptoms are sometimes treated with not only doubt, but outright disbelief. For example, you may have heard stories of people with invisible symptoms who have had cruel things said to them for using disabled parking spaces. But when a person has both invisible and unpredictable symptoms, it is not only uninformed strangers that may doubt them, but sometimes even those closest to them.
To read this article in its entirety click here: Dealing with Doubters

COVID-19 and Multiple Sclerosis: What You Need to Know

The corona-virus, COVID-19, is a respiratory virus that is transmitted from person to person. The virus began in Wuhan, China, in December 2019 and has since spread worldwide. Symptoms can vary from mild to severe and can include fever, cough, and difficulty breathing. The virus spreads through direct contact with other individuals who have been infected, particularly through coughing and sneezing. When the virus lands on hard surfaces and an individual touches that surface and proceeds to touch their nose, face, or mouth, they are at risk for transmission. The virus is more likely to spread in group settings, so it is recommended to avoid gatherings or groups of 10 or more.

Having multiple sclerosis does not increase the risk of developing COVID-19; however, certain factors associated with MS could increase the risk of infection. These factors include taking certain disease-modifying therapies, having lung disease or heart disease, significantly restricted mobility (spending most of your day seated or in bed), or being older than the age of 60. Often times, when the body is responding to infection, there may be a worsening of MS symptoms. For example, patients with MS may experience worsening fatigue, numbness, difficulty thinking, and/or vision problems if they become infected.
To read this article in its entirety click the link: COVID-19 and your MS

 

iConquerMS seeks participants for COVID-19 study

iConquerMS, together with researchers at Massachusetts General Hospital, are conducting a study to understand how people living with MS have been affected by the COVID-19 pandemic. The study is open to everyone, whether or not they have been diagnosed with, exposed to, or have symptoms of COVID-19. Information gathered through this survey will help people affected by MS and their doctors during the current pandemic and in the case of future viral outbreaks.
Participating in the COVID-19 in MS study is easy:

  • Go to www.iConquerMS.org, click “Join Now,” and provide your email address.
  • Participants will receive an email from iConquerMS. Click the link to return to iConquerMS to set up a password and complete a brief profile.
  • Click on “COVID-19 Survey” in the list of surveys. Read and accept the consent, and then complete the survey.

The data generated from a patient perspective will be shared with a global COVID-19 data initiative organized by the MS International Federation and the MS Data Alliance. Researchers are also collaborating with the NMSS/CMSC clinical data collection effort, which has also recently launched.
To get all the details on this study Clink the Link: iConquerMS Study

 

FDA Approves Zeposia® (ozanimod) for the Treatment of Relapsing Forms of MS

On March 26, 2020, Bristol Myers Squibb announced that the United States Food and Drug Administration (FDA) approved Zeposia® (ozanimod) for the treatment of adults with relapsing forms of multiple sclerosis (RMS), including clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), and active secondary-progressive MS (SPMS). Zeposia is an oral medication given once daily as a 0.92 mg pill.

Patients taking Zeposia for the first time start with a titration, which means that it is begun at a lower dose and gradually increased until the full dose is reached. With this newly approved medication, starting at a lower dose reduces the risk of a transient decrease in heart rate and atrioventricular conduction delays, which may occur if a larger dose is introduced too quickly.

Zeposia is a sphingosine-1-phosphate (S1P) receptor modulator that binds with high affinity to S1P receptors 1 and 5. It joins two other previously approved S1P receptor modulators: Gilenya® (fingolimod) and Mayzent® (siponimod); additional S1P receptor modulators are also under investigation. Ponesimod is among those still under investigation and it was recently submitted to the FDA for approval. According to the manufacturer, Zeposia is the only approved S1P receptor modulator that offers RMS patients an initiation that does not require a genetic test or label-based first-dose observation.

S1P receptor modulators are thought to work by blocking potentially damaging immune-system cells (lymphocytes) from leaving lymph nodes, lowering their number in the blood and tissues. These treatments may reduce damage to the central nervous system (CNS). In clinical trials of more than 2,600 adults with relapsing forms of MS, Zeposia was shown to have a significant effect on reducing the annual relapse rate (ARR) as well as the number of brain lesions, when compared to Avonex® (interferon beta-1a).

Bristol Myers Squibb is delaying the launch of Zeposia and released the following statement, “As the country’s healthcare system is dealing with the unprecedented COVID-19 pandemic, Bristol Myers Squibb has made the decision to delay commercialization of Zeposia. The Company made the decision based on what’s in the best health interest of our patients, customers and employees. Bristol Myers Squibb will continue to monitor the environment and will partner with the neurology community to inform launch timing.” MSAA will inform the MS community of a launch date once it is announced.
Read the full article by clicking FDA Approves Zeposia

 

New Study Gives Hope for Early Detection and Treatment of MS

Everyone I know who has multiple sclerosis (MS) can tell me the date they were diagnosed with the disease. Most have at least a vague recollection of their first symptoms. But when did their MS actually begin?

MS May Begin Before Symptoms Manifest

In a study published in September 2019 in JAMA Neurology, researchers from the Harvard T.H. Chan School of Public Health in Boston and collaborators reviewed blood serum samples from 60 members of the U.S. military who later went on to develop MS. They found increased concentrations of a biomarker called serum neurofilament light chain in those samples relative to a control group. (A biomarker is a measurable substance in the human body.)
Couple this information with previous research, published in The Lancet in April 2017, that was conducted in four Canadian provinces (British Columbia, Saskatchewan, Manitoba, and Nova Scotia). It showed an increased use of health services in the run-up to an MS diagnosis. It seems there is a good argument to be made that we all had MS before we exhibited symptoms.  To read this article is its entirety click the link: Everyday Health

When Specialists Are Few and Far Between, Online Tools Can Help

Although I’ve been living what I refer to as a “healthy life with multiple sclerosis” for quite a few years now, a serious medical complication coupled with New Year’s resolution time had me looking for a better way to cope with symptoms of multiple sclerosis (MS) and issues of broader well-being. The roadblocks to reaching beyond my own abilities and understanding are real, and they are significant. I live 45 minutes away from the nearest neurologist in a country with no MS-specializing doctors. Many rural physiotherapists are unfamiliar with the particular needs of people with multiple sclerosis. In short, if you desire to live your best life with MS here, you’re going to have to take a large portion of the burden onto yourself. I suppose that many factors besides where one lives could have a similar effect. One’s financial resources, transportation situation, and overall support network could have many of the same results. To read in its entirety Click the link : https://www.everydayhealth.com/columns/trevis-gleason-life-with-multiple-sclerosis/when-specialists-few-far-between-online-tools-can-help/

How I’m Using My Brain to Overcome a Damaged Cerebellum

I got to the secondary-progressive stage of multiple sclerosis (MS) three decades after my diagnosis. At this point in my life, every small thing seems difficult to do, even picking up something that was dropped on the floor. I do it, complaining the whole while about my loss of finesse. Three decades ago, I had finesse; now I do not.

But no matter — now I work with what I have.

I will admit that not every problem has a clear-cut solution. But sometimes just taking a stab at making something even a little bit easier is time well spent. My life with  progressive MS has taught me that small steps can lead to big rewards. To read this story in its entirety Click the link : https://www.everydayhealth.com/columns/my-health-story/how-im-using-my-brain-overcome-damaged-cerebellum/?slot=1&eh_uid=84911080&xid=nl_EHNLms_2020-01-27_19253762&utm_source=Newsletters&nl_key=nl_living_with_multiplesclerosis&utm_content=2020-01-27&utm_campaign=Living_With_Multiple_Sclerosis

Research Reveals Another Possible Epstein-Barr Virus Link to MS

For years researchers have believed a link exists between the Epstein-Barr virus (EBV) and multiple sclerosis. But scientists have had a hard time finding a precise association.

Now, the National Institutes of Health (NIH) are reporting another possible connection. Researchers at the Center for Autoimmune Genomics and Etiology at Cincinnati Children’s Hospital Medical Center have found a viral protein in EBV-infected cells. They think that the protein may turn on a “switch” that activates genes that are associated with an increased risk of autoimmune diseases. MS, of course, is an autoimmune disease.

Scientists know that the EBV infection can produce a protein called EBNA2. In this new research, they found that EBNA2 activates some of the human genes associated with the risk of lupus and several other autoimmune diseases, including multiple sclerosis. Simply put, it flips that autoimmune disease “switch.” To continue to read more click the link https://multiplesclerosisnewstoday.com/2018/04/24/another-possible-ms-epstein-barr-virus-link-revealed/?utm_content=bufferf77d9&utm_medium=organic+social&utm_source=facebook.com&utm_campaign=buffer

Governor Northam Signs Sweeping Executive Actions to Expand Opportunities for Virginians with Disabilities

Importance of the Issue:
The way ahead for Virginia means inclusion and opportunity for all Virginians, including individuals with disabilities. An estimated one in ten Virginians have a disability.1 The Americans with Disabilities Act of 1990 defines disability as any “physical or mental impairment that substantially limits one or more major life activity; [having] a record of such impairment; or being regarded as having such impairment.”2 This definition is expansive and it is the responsibility of the Commonwealth to empower and provide supports to all Virginians with disabilities to maximize their inclusion, employment, and independence. All Virginians, including those with disabilities, have a right to enjoy the benefits of choice in society and the freedoms of everyday life.

The read this article in its entirety click here: https://www.governor.virginia.gov/media/governorvirginiagov/executive-actions/EO-47-Expanding-Opportunities-for-Virginians-with-Disabilities.pdf

How to Manage Thinking and Memory Problems in MS

Just like physical symptoms of Multiple Sclerosis, cognitive symptoms result from damage to the myelin covering of nerve fibers in the brain and the nerve fibers themselves. Since the areas of damage are different in different people, the effects on cognition vary from person to person. Depending on the cognitive symptoms you’re experiencing and their severity, the following suggestions may help you manage your symptoms, minimize their impact on your life, and prevent new symptoms. To stay focused, avoid multitasking. Nicholas LaRocca, PhD, a psychologist and a consultant for the NMSS, says, “In MS, divided attention tasks, or paying attention to more than one thing at a time, are frequently affected.” To improve your ability to focus on any one task, don’t multitask! to read this article in its entirely clink the link: https://www.everydayhealth.com/multiple-sclerosis/symptoms/thinking-memory-problems-ms/

A View Into the MS Brain: What New Imaging Techniques Reveal

The human brain is made up of two types of tissue: gray matter, which is composed of nerve cells, and white matter, which is composed of bundles of nerve fibers that connect nerve cells in different areas of the brain and carry nerve impulses between them.

“The traditional way of thinking is that MS is primarily a white matter disease,” says Lael Stone, MD, formerly a neurologist specializing in multiple sclerosis (MS) at the Cleveland Clinic in Ohio.

But “most [experts] in MS at this point would say that there is clearly involvement of both white and gray matter,” says Dr. Stone. Still, “you could put 10 MS specialists in a room, and they would have a hard time agreeing on which is more important and which comes first.” The read this article is its entirety click this link: https://www.everydayhealth.com/multiple-sclerosis/treatment/ms-brain-white-matter-gray-matter-mri-research/