News

UPDATE: 2020 Get Together JULY 31st – AUGUST 2nd

 UPDATE: 2020 JULY 31st – AUGUST 2nd.

Hello everyone a few people that just need out are getting together if you would like to be there, here is Lodging Information with a link to the Hotels website so you can call and reserve your room for this special weekend, The MSAV has a SPECIAL CODE for this get together so when you call the Hotel tell them you want the “MSA Block Code” to be applied to your reservation.  PLEASE check back often for updates. BUT Please go ahead and make your  Hotel Reservations the MSA BLOCK CODE closes July 17th 2020.  YOU MUST CALL HOLIDAY INN VALLEY VIEW Directly at 540-362-4500 / And request the MSA BLOCK Code, to receive the 89.00 dollar a night special rate.

Special Announcement For a small donation of a dollar per ticket. To win a Plush MS Throw click on the following link to make your Donation. For every dollar you get one entry for the drawing, (10 Dollars ten ticket entries) : Click Here To Win  

Please understand that the reason for the picture looking the way that it is, Is because its still ” in plastic ” to protect it from stains and the Co-vid. But it is a Very nice throw

 

No photo description available.

Kroger and Amazon Smiles: A Great way to Support Us

The MSAV depends on the generous support of people like you to continue its mission.  To participate in one of our fundraising events online or to shop online with a small portion of your purchase going to support the MSAV, click one of the links below:

Kroger
Did you know you can support nonprofit organizations in your community just by shopping at Kroger? It’s easy when you enroll in Kroger Community Rewards®! To get started, sign up with your Plus Card using the Kroger link above, and select a local organization you wish to support. Once you’re enrolled, you’ll earn rewards for your chosen organization every time you shop and use your Plus Card!

Amazon Smile
AmazonSmile is a simple and automatic way for you to support your favorite charitable organization every time you shop, at no cost to you.  When you shop, you’ll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the bonus that Amazon will donate a portion of the purchase price to your favorite charitable organization.  On your first visit to AmazonSmile, you need to select MSAV to receive donations from eligible purchases before you begin shopping.  AmazonSmile will remember your selection, and then every eligible purchase you make at AmazonSmile will result in a donation to the MSAV.

If you already set yours up GREAT if not please conider doing so. We recently have heard of a few people that thought they had these setup but they werent. So if you would take a short moment and check to see if your still linked correctly that would be great. And Thank You for your contineing support.

 

New oral treatment, Zeposia, available for relapsing forms of MS

Zeposia (ozanimod) 0.92 mg, a new once-daily oral medication for adults for the treatment of relapsing forms of multiple sclerosis, including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, is now commercially available in the U.S. Zeposia (ozanimod) 0.92 mg, a new once-daily oral medication for adults for the treatment of relapsing forms of multiple sclerosis, including clinically isolated syndrome, relapsing-remitting disease, and active secondary progressive disease, is now commercially available in the U.S.

The Zeposia 360 Support program will facilitate access to Zeposia for appropriate patients with MS. This includes a copay of as little as $0 for eligible appropriate patients, assistance with financial support, reimbursement for some initial out-of-pocket medical costs – and a program that may help eligible patients with commercial insurance to receive free medication while they are waiting for insurance approvals. Terms, conditions, and eligibility criteria apply.

Before initiation of treatment with Zeposia, discuss treatment options with your doctor. For more information visit Zeposia.com.at this link:https://www.zeposia.com/

Your Invited to Thursday the 23rd, Zoom Meeting

MS Alliance MSAV is inviting you to a scheduled Zoom meeting.

Topic: Roanoke Valley Support Group Night Meeting
Time: Jul 23, 2020 06:30 PM Eastern Time

Join Zoom Meeting
https://us02web.zoom.us/j/85014087772

 

 

 

 

MS Miles Of Scarves

Katie Shafer will be with us at this years retreat. Representing a wonderful Orgaization called “Miles of Scarves”.

​Youth-led Miles of Scarves exists to improve the lives of those living with multiple sclerosis (MS). Their dedicated youth volunteers knit scarves to sell to raise money to provide assistance to families affected by MS and to fund research to find a cure.
Since 2009, over 80 elementary school through college students have participated in Miles of Scarves.  They knit scarves, hats, and other items to sell at craft fairs, MS Society events, and other venues.Every year they:

  • sponsor and volunteer at a rest stop on BikeMS: Colonial Crossroads
  • give a $2,000 scholarship to a graduating high school senior who has MS or a parent with MS
  • volunteer at MS Society events
  • give holiday gifts to a family affected by MS
  • donate to MS research projects at Virginia Commonwealth University
  • host the Yarn Ball, a silent auction and cocktail party where we raise money for research

In ten years, MoS has donated over $127,000. They are always looking for more volunteers to join them in knitting to find a cure!

History of Miles of Scarves

When Meredith Polk was ten years old, she read an article about a group of people knitting the world’s longest scarf to raise money for charity. Since Meredith knew how to knit, she taught some of her friends, and they set a goal to raise $1,500 to sponsor a rest stop on Bike MS. They exceeded that goal in their first year and have been growing ever since. Miles of Scarves is now a registered 501(c)(3) non-profit organization that is dedicated to finding a cure for MS.

Miles of Scarves fosters a sense of community, sparks interest in all aspects of nonprofit work, and helps young people develop business skills.

Research on MS, gait to lead to more effective fall prevention

People who are diagnosed with multiple sclerosis often experience difficulty in maintaining body balance while walking and are at a greater risk of falling. Researchers at Georgia State University conducted a study to better understand gait stability for people with MS and use this knowledge to design more effective interventions for preventing falls.
Twenty people diagnosed with MS and 25 healthy individuals participated in the study, which used an eight-camera system to capture data on each participant as they walked a designated 7.5-meter distance three times. Their results show people with MS demonstrate a more cautious walking pattern and took shorter steps to accommodate their slow gait speed and maintain their balance.

This research has meaningful implications for doctors and other health care professionals who work with people diagnosed with MS. The researchers said the study leads to the understanding that step length and foot landing angle are two significant factors for maintaining body dynamic balance in people with MS, making them two targets for gait rehabilitation.

The study was published in the Journal of Biomechanics.

Study finds no link between DMTs and Covid-19 severity

A new study investigated the risk factors for developing a severe form of COVID-19 in patients with multiple sclerosis. Researchers found risk factors for severe forms of COVID-19 were neurological disability, age, and obesity, but no link was found between disease-modifying therapies exposure and COVID-19 severity. The identification of these risk factors could provide a rationale for an individual strategy of clinical management in patients with MS during the COVID-19 pandemic. Risk factors associated with the severity of COVID-19 in patients with MS are unknown. DMTs may modify the risk of developing a severe COVID-19 infection, beside identified risk factors such as age and comorbidities. A new study by French researchers at multiple medical centers set out to describe the clinical characteristics and outcomes in patients with MS and COVID-19 and identify factors associated with COVID-19 severity.

The Covisep registry is a multicenter, retrospective, observational cohort study conducted in MS expert centers and general hospitals and with neurologists collaborating with MS expert centers and members of the Société Francophone de la Sclérose en Plaques. The study included patients with MS presenting with a confirmed or highly suspected diagnosis of COVID-19 between March 1, 2020, and May 21, 2020.

The main outcome was COVID-19 severity assessed on a 7-point ordinal scale with a cutoff at 3. Researchers collected demographics, neurological history, Expanded Disability Severity Scale score, comorbidities, COVID-19 characteristics, and outcomes. Statistical modelling used to estimate the links of collected variables with COVID-19 outcomes.

To read this article in its entirity click here No Link Between

Congratulations to the Class of 2020

The MS Alliance would like to take a moment to recognize all the accomplishments of our High School and College Graduates. We realize that you have put in a lot of hard work to make it to this point. The MS Alliance is very proud of all that you have accomplished. We look forward to seeing  you succeed in the next chapter of your journey.

 

Sal Elizabeth

Sal Elizabeth (Kaitlyn) graduated from Clemson University with a Master’s in Architecture with a study abroad in Italy.  She has accepted a full-time position with an architecture firm in Greenville, SC as the Lead Architect on a few projects. “I can’t take credit for any of it, this was all Gods strength and provision.”   We are sure her dad, Joe Salvia is immensely proud of her, most remember Kaitlyn as the leader of the youth support group.

 

frank

Frank Elijah Patton IV received an advance high school diploma from Heritage High School. He began playing trumpet in the 8th grade while in the Dunbar Middle School band, as well as the Heritage High School Marching Band.  The following 9th grade year, he joined the concert band. He will begin attending Central VA Community College, for general studies, upon graduation he will transfer to a 4-year university, which he has yet to decide upon. Frank is the son of Mr. Frank and Yvonne Patton III of Lynchburg, Va.

 

Kaylyn Rivera

Kaylyn Rivera graduated with a 4.2 GPA Summa Cum Laude from Maurece J. McDonough High School in Charles County MD. Kaylyn will be attending Drew University in New Jersey in August where she will be playing soccer. She will be studying to become a Physician’s Assistant.  Kaylyn is the daughter of Fidel and Kathleen Rivera members of our MSAV family.

 

Layla Moon Mundy

Layla is a 2020 graduate of Patrick Henry High School. As a result of all her hard work, AP classes and not taking a summer off since seventh grade, she graduated a year early with a 4.0 GPA, and Honors.  Layla is a member of the Roanoke Youth Symphony Orchestra playing violin for five years. She also plays the clarinet in concert band. Her plans on attending Virginia Tech majoring in Energies and Science. Layla is the daughter of Kala Moock a member of our MSAV family.

 

Marla Rain Moock

Marla Rain Moock, she is a VWCC graduate with two degrees, one in Science and the other in Megatronics. she graduated Magna Cum Laude and made the Presidents lists with a 4.5 GPA. Marla is headed to Christopher Newport a 4-year college on the east coast. Marla is the daughter of Kala Moock a member of our MSAV family.

 

Nick

Nick graduated from Floyd County high school. He is working full time at Hollingsworth & Vose in Floyd, Virginia with plans to attend NRCC in the fall for General Studies and Welding. Nick is the son of Tim and Karen Jones, nephew of Suzanne Oconnell and grandson of Dr Gordon Burch.

 

If we have missed any 2020 High School or College Graduates of our MSAV Family please drop us a line at mailto:msav4hope@gmail.com  Attention 2020 Graduate/Don Cross

 

 

 

 

 

 

UPDATE: 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 live-stream things like classes while we’re all in self-isolation. Like Skype or Face-time, 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

 

Air Quality Tied to MS Risk

Multiple sclerosis was more prevalent in Italian areas with more pollution

Italians residing in areas with high air pollution levels had a significantly greater risk of developing multiple sclerosis (MS) than those who lived in areas with cleaner air, researchers said.

Italians residing in areas with high air pollution levels had a significantly greater risk of developing multiple sclerosis (MS) than those who lived in areas with cleaner air, researchers said.

MS risk was 29% higher among people in urban areas with higher levels of air contamination than among people in rural areas, even after adjusting for urbanization and deprivation, reported Roberto Bergamaschi, MD, PhD, of IRCCS Mondino Foundation in Pavia, Italy, and colleagues.

Continue reading this article in its entirety :Air Quality Effects on MS

A Blood Test for MS Progression?

Elevated plasma levels of neurofilament light (NfL) protein in early stages of multiple sclerosis (MS) were tied to an increased risk of disability worsening, a large case-control study suggested.

MS patients with high plasma NfL, a measure of axonal damage, were 40% to 70% more likely to have worsening disability in the next year, and were more likely to have long-term, sustained disability, reported Ali Manouchehrinia, PhD, of the Karolinska Institute in Stockholm, Sweden, and co-authors, in Neurology.

“These results suggest that elevated levels of these proteins measured early on in the course of the disease may help us to predict how the disease will develop and monitor how treatment is working,” Manouchehrinia said in a statement.

More research is needed before a blood test could be used routinely in clinical settings “but our results are encouraging,” he noted. “In disease like MS that is so unpredictable and varies so much from one person to the next, having a noninvasive blood test like this could be very valuable, especially since treatments are most effective in the earliest stages of the disease,” he said.

Continue to read this article in its entirety: Bio Marker in MS Research

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