News

UPDATE: MSAV Mini-Retreat/ Snowball Events

This is going to be an Exciting Weekend March 6-8th at the Holiday inn Valley View

The MS Awareness Month Mini-Retreat & Snowball
Introducing

“Of The Earths Wellness”
Presented By: Dr. Dave Hamilton
Specializes in nutrition and herbal medicine
Specializes in botanical medicine, family medicine, pain management and clinical tritium

Behind the Closed Door
Presented By Leading Therapist : Roxana Navab-Boushehri, MA, LPC
She will guide you to open the door to a more positive approach to living with MS

Nia
When your legs don’t work like they used to before, come dance with Felicia
Presented By: Felicia Berger Smith a Black Belt Nia Trainer
(can be done standing or a seated position)

Attitude of Gratitude
Presented By: Sara Ingram

Pathway2Empowerment with a Certified Life Coach
A Certified Life coach specializing in women’s empowerment, life transitions, cancer survivors
and parents with special needs children.

East Mental Health
Presented By: A Mental Health Clinician / Crisis Counselor
Informative discussion

Plus Enjoy and Relax at the Many Amenities That Holiday Inn Valley View has to offer. Don’t forget your Swimsuit they have a indoor pool. Hope to see all our friends family and caretakers at this event. See You There

MS Awareness Month Kickoff and Mini-Retreat March 6th – 8th 2020

Known for years as the Snowball is scheduled for March 6-8, 2020 at Valley View Holiday Inn.  Check in begins at 3 pm March 6, dinner at 5:30.  The hotel has recently gone through a multi million dollar makeover and it is beautiful, fully accessible, adequate parking, wonderful indoor heated pool, super exercise room, elegant rooms and lovely meeting space.

Register For Event by going to the Program tab and click on the MS Awareness link

Stressed? Overloaded with information and opinions? This program will offer tools and teachings that can open your heart to all the wonderful possibilities in store for you in the warmer months, and beyond. We invite you to set aside your routine, to savor the opportunity, explore new and relaxing experiences in store for you at this retreat. All events are free to attend. Just come have a great time.

Scheduled speakers, programs & Discussion Groups:                        

  • Caregiver 
  • Newly diagnosed
  • Alternative Treatments
  • CBD
  • Fatigue
  • Stress
  • Chair Yoga
  • Doctor Panel
  • Nutrition
  • Resources for people with MS
  • Our MS Stories
  • Pharmaceutical Educational Programs

Special room rates available by calling 540-362-4500, ask for MS Alliance Kickoff room block, before February 20, 2020. Scholarships are a vital part of our mission. We strive to make our programs available to as many people as possible. For Limited Financial..

Assistance please email:  MS Alliance of Virginia at msav4hope@gmail.com

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/

FDA Approves Generic Versions of Gilenya®

On December 5, 2019, the United States Food and Drug Administration (FDA) announced that they had approved the applications from three separate pharmaceutical companies for the first generic versions of Gilenya® (fingolimod) capsules for the treatment of relapsing forms of multiple sclerosis (MS) in adult patients. Approved in September 2010, Gilenya was the first oral drug available for the long-term treatment of relapsing-remitting MS. Generic treatments carry the same benefits and risks of the initially approved medication. While this medication has been shown to slow disease activity, such as reducing the frequency of relapses as well as reducing the number of lesions as shown on magnetic resonance imaging (MRI), Gilenya’s potential side effects and adverse events include a temporary slowing of the heart rate, edema (swelling) behind the eye, and liver changes. Usually occurring in patients with weakened immune systems, progressive multifocal leukoencephalopathy (PML) is a rare but serious brain infection that could potentially occur. Along with some of the other long-term treatments for MS, PML has been reported in a small number of individuals taking Gilenya. To read this article in its entirety click here: https://mymsaa.org/news/fda-approves-generic-gilenya/?utm_source=latest_news&utm_medium=email&utm_campaign=generic_gilenya_approval&utm_content=email_body

Disclosing MS in the Workplace : How, What, Where , and When

MS is not as disabling as people presume. Separating fact from fallacy, however, takes time. Once you’ve come to accept your diagnosis, and the adjustments it entails, new questions immediately begin to surface. Whom do you tell about your illness? When is it appropriate to disclose this information? How much do you tell and how do you tell it?

From a career standpoint, disclosure can be a complicated issue. You may be uncertain of the risk involved or whether your current job status will be jeopardized as a result. It is recommended that you familiarize yourself with your rights under the Americans with Disabilities Act, as well as seeking professional advice before disclosing any information. To read this story in its entirety Click on the link below: https://www.msfocusmagazine.org/Magazine/Magazine-Items/Posted/Disclosing-MS-in-the-Workplace-How,-What,-Where.aspx

Diabetes drug offers hope of new treatment for multiple sclerosis

Scientists have raised hopes of a new treatment for multiple sclerosis after animal studies showed a common diabetes drug can repair nerve damage caused by the disease.The effect of the drug was so striking that doctors in Cambridge are now planning a clinical trial of MS patients next year.If the treatment works as expected, it could potentially halt the progression of the disease and even allow patients to recover from some of the disabilities that typically develop as the condition worsens.“It’s always a leap in the dark when you go from lab experiments to humans, but the data is as strong and as compelling as it is ever likely to get,” said Robin Franklin, a professor of stem cell medicine at Cambridge University. “I am very optimistic that this is going to work.” To read the article in its entirety click the link below https://www.theguardian.com/science/2019/oct/02/diabetes-drug-offers-hope-new-treatment-multiple-sclerosis

 

Mayzent® (Siponimod) Tablets Approved by the FDA

In a news release dated March 26, 2019, the United States Food and Drug Administration (FDA) announced the approval of Mayzent® (siponimod) oral tablets to treat adults with relapsing forms of multiple sclerosis (MS). The approval includes individuals with clinically isolated syndrome, relapsing-remitting MS (RRMS), and active secondary-progressive MS (SPMS). Mayzent is the only disease-modifying therapy (DMT) to be approved in recent years for active secondary-progressive MS. To read this article in its entirety Click the link https://mymsaa.org/news/mayzent-fda-approved/

Vumerity Approved in US as Treatment for RRMS and Active SPMS

The U.S. Food and Drug Administration (FDA) has approved Vumerity (diroximel fumarate) for the treatment of relapsing forms of multiple sclerosis (MS), including clinically isolated syndrome (CIS), relapsing-remitting MS (RRMS), and active secondary progressive disease (SPMS). Vumerity (previously known as ALKS 8700) was developed by Alkermes in collaboration with Biogen, the latter of which now holds the exclusive worldwide rights to commercialize the therapy. Taken orally, Vumerity is able to regulate immune responses and lower oxidative stress, helping to prevent the degeneration of myelin (the protective coat of nerve cells) in MS patients without inducing a systemic inhibition of the immune system. The therapy is rapidly converted into monomethyl fumarate (MMF), and although its mode of action is not fully understood, MMF is believed to have fewer gastrointestinal side effects than Tecfidera (dimethyl fumarate, also marketed by Biogen), an FDA-approved oral therapy for relapsing MS.To read this complete article click this link https://multiplesclerosisnewstoday.com/news-posts/2019/10/30/biogen-and-alkermes-announce-fda-approval-of-vumerity-diroximel-fumarate-for-multiple-sclerosis/

MS Muscle Spasticity: What It Is, and What to Do About It

The definition of spasticity reads like a description from a medical school textbook, but the National Multiple Sclerosis Society (NMSS) calls it a “feeling of stiffness” as well as “involuntary muscle spasms” or “sustained muscle contractions or sudden movements.”

These symptoms may be as mild as simple muscle tightness, but they may become severe enough to produce painful muscle spasms as well as pain and stiffness in and around the joints.

Spasticity has been estimated to affect anywhere from 30 to 80 percent of people with MS. It most often impacts the legs in those with MS, often producing problems with balance and strength.

Still, the degree of spasticity, the muscles involved, and the resulting impairments vary from person to person, according to Alexius Enrique G. Sandoval, MD, medical director of the Multiple Sclerosis Rehabilitation Program at Johns Hopkins Medicine in Baltimore. To read this whole article click here: https://www.everydayhealth.com/multiple-sclerosis/symptoms/muscle-spasticity/

How a PT Can Help With MS-Related Fatigue

Multiple sclerosis (MS) is a disease of tremendous variability, but the most common — and often most debilitating — symptom of MS is fatigue.

Unlike “ordinary” tiredness, fatigue in multiple sclerosis is disproportionate to the activity being performed. And it’s not just associated with physical activity.

In addition to contributing to impaired balance and a reduced ability to walk, MS-related fatigue can cause diminished mental capacity and a feeling of tiredness no matter how much rest you receive.

Fatigue in MS is extremely complex and can have debilitating effects. But there’s evidence that an individually tailored exercise program can help, and that’s where a physical therapist (PT) can be of assistance. To read this article in its entirety click on this link: https://www.everydayhealth.com/columns/health-answers/how-pt-can-help-with-ms-related-fatigue/?eh_uid=84911080&slot=3&xid=nl_EHNLms_2019-07-20_17539216&utm_source=Newsletters&nl_key=nl_living_with_multiplesclerosis&utm_content=2019-07-20&utm_campaign=Living_With_Multiple_Sclerosis

FDA expands approval of Gilenya to treat multiple sclerosis in pediatric patients

The U.S. Food and Drug Administration today approved Gilenya (fingolimod) to treat relapsing multiple sclerosis (MS) in children and adolescents age 10 years and older. This is the first FDA approval of a drug to treat MS in pediatric patients.

“For the first time, we have an FDA-approved treatment specifically for children and adolescents with multiple sclerosis,” said Billy Dunn, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “Multiple sclerosis can have a profound impact on a child’s life. This approval represents an important and needed advance in the care of pediatric patients with multiple sclerosis.” to read the entire article click here:https://www.fda.gov/news-events/press-announcements/fda-expands-approval-gilenya-treat-multiple-sclerosis-pediatric-patients

 

UVa identifies surprising contributor to multiple sclerosis

School of Medicine researchers Megan S. Chappell, Alban Gaultier and Anthony Fernandez-Castaneda have identified a surprising contributor to multiple sclerosis that could lead to new treatments for the condition and possibly help doctors promote brain repair after injury.

Previously ignored cells are key contributors to multiple sclerosis, according to new research from the University of Virginia.

School of Medicine researchers were trying to establish the beneficial aspects of cells known as oligodendocyte progenitor cells, which make up about 5% of the brain and spinal cord and were thought to protect the myelin sheath that surrounds nerve cells.

In fact, they learned, progenitor cells contribute to the immune system’s attack on healthy cells during neurological diseases such as MS. To read the complete article click here: https://www.roanoke.com/news/uva-identifies-surprising-contributor-to-multiple-sclerosis/article_9a5e4405-eab7-592f-9f27-c2825099f73c.html

 

Bowel, Bladder Problems Linked to Higher Levels of Fatigue and Disability, Study Reports

Bladder and bowel problems, such as constipation and fecal incontinence, are associated with a higher level of fatigue in people with multiple sclerosis (MS), according to a study in Australia. The findings also showed that greater fatigue and experiencing bowel and bladder problems are associated with a higher level of disability. The research, “The frequency of bowel and bladder problems in multiple sclerosis and its relation to fatigue: A single center experience,” was published in the journal PLOS ONE. Bladder or bowel problems are frequent in people with MS, and may manifest as urinary incontinence or retention, slow intestinal transit, and chronic constipation. it is estimated that more than 50% of MS patients experience these problems. However, research on bowel dysfunction specifically, and on whether bladder and bowel symptoms are associated with fatigue and disability in MS, remain scarce. Now, a team at Neuroscience Research Australia conducted a single-center study to address these gaps. To continue to read more on this study refer to: Multiple Sclerosis News Today. com

FDA Approves Siponimod (Mayzent) for Multiple Sclerosis

The US Food and Drug Administration (FDA) has approved siponimod (Mayzent, Novartis) to treat adults with relapsing forms of multiple sclerosis (MS), including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive (SP) disease, the agency announced.

Approval was based on results of the phase 3 trial, which randomly assigned 1651 patients with SPMS and an Expanded Disability Status Scale score of 3.0 to 6.5 to oral siponimod 2 mg once daily (1105 patients) or placebo (546 patients) for up to 3 years or until the occurrence of a prespecified number of confirmed disability progression events.

For most people, MS starts with a relapsing-remitting course, in which episodes of worsening function (relapses) are followed by recovery periods (remissions). These remissions may not be complete and may leave patients with some degree of residual disability. Many, but not all, patients with MS experience some degree of persistent disability that gradually worsens over time. In some patients, disability may progress independent of relapses, a process termed secondary progressive multiple sclerosis (SPMS).  In the first few years of this process, many patients continue to experience relapses, a phase of the disease described as active SPMS. Active SPMS is one of the relapsing forms of MS, and drugs approved for the treatment of relapsing forms of MS can be used to treat active SPMS. Later, many patients with SPMS stop experiencing new relapses, but disability continues to progress, a phase called non-active SPMS. To read more on this subject and review details on the trail performed, click here http://www.medscape.com And for additional information, click here https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm634469.htm