News

March 13th is Roanoke Valley Gives Day!

The Multiple Sclerosis Alliance of Virginia, in partnership with the Community Foundation serving Western Virginia, is pleased to participate once again in Roanoke Valley Gives Day on 3/13/19.

A recently released study confirms that 1 million Americans have this incurable disease, easily double the long-accepted figure of 400,000.  This is no longer a rare disease.  “What this means is that we have to work harder, because there’s more of a need than we had realized,” said Nick LaRocca, vice-president of healthcare, delivery and policy research for the NMSS.  “For people living with MS, it means we have a larger constituency, and that we have clarified something important about the nature of MS as a medical condition.”

With March being MS Awareness Month, the MSAV is combining two of its major fundraising drives, our 365 Club Drive and Roanoke Valley Gives.  We gratefully request anytime between now and midnight on March 13th, anyone who wants to support someone with MS go to rvgives.givebig.org, select MSAV as the charity, mark 3/13/2019 as the processing date and use the credit card of their choice to make their donation. 

The MS Alliance of Virginia was formed four years ago precisely to deal with the day to day needs of our local MS community.  As new people are being diagnosed and those dealing with the disease every day face new challenges, this organization is here to offer education to them, their care partners, their family and friends.  We guide people through the maze of health care towards organizations that can assist with special needs, services, financial assistance, medical needs such as MRI’s or help offsetting the high cost Disease Modifying Treatments, ramps and other mobility assistive technology.  The need is great and based on the numbers we are seeing in our community, growing  rapidly.

We greatly appreciate any donation you can make to support people with MS.

New MS Treatment Guidelines

In an article published in Momentum by Aviva Patz he reveals the American Academy of Neurology (AAN) has unveiled new disease-modifying treatment guidelines for people with multiple sclerosis, the first revisions in more than 16 years.  These guidelines affect those newly diagnosed or who have been living with MS for years and cover treatment protocols for the full range of MS types.  Be sure to read more to find out what you should know about treatment recommendations, what you should do now, and conversations you may want to have with your doctor.

Lack of Diversity in Clinical Trials is a Danger to Multiple Sclerosis Patients

According to an article at Multiple Sclerosis News Today, at least one doctor at U.K. Healthcare’s Kentucky Neuroscience Institute wants more diversity in clinical trials. It’s not just about social equality – Dr. Jay Avasarala, a specialist in multiple sclerosis and neuroimmunology, knows that non-diverse clinical studies are having a real health impact on minorities.  He has seen through his practice that Multiple sclerosis presents and progresses in completely different ways in black people and white people and this is where Dr. Avasarala’s concerns arise.  Find out more.

 

NEW RESEARCH COULD STOP MULTIPLE SCLEROSIS IN ITS TRACKS

In our summer conferences for the past few years, Dr. Alban Gaultier has been telling us that the gut is the key – to eat our yogurt.  When a person has multiple sclerosis (MS), their immune system causes inflammation that affects parts of the central nervous system, including the brain. We can’t currently cure MS, just slow it down — but a specific type of cell originating from the gut could change that.  In a  paper recently published in the journal Cell, a team from the University of Toronto and the University of California San Francisco describes a discovery of cells that migrate to the brain from the intestines.  Find out more.

FDA Safety Announcements and Prescribing Information Changes

The FDA issued safety announcements for Gilenya and Lemtrada in November 2018. These announcements led to changes to the prescribing information for both drugs.

The prescribing information for Ocrevus was updated to provide more detail on the recommended timing of vaccinations prior to starting Ocrevus and the safety and effectiveness of vaccinations after Ocrevus administration.

Read the updated prescribing information for GilenyaLemtrada and Ocrevus.

Cognitive Screening for MS

The purpose of this paper is to promote understanding of cognitive impairment in multiple sclerosis (MS), recommend optimal screening, monitoring, and treatment strategies, and address barriers to optimal management.  To accomplish this the National MS Society convened experts in cognitive dysfunction (clinicians, researchers, and lay people with MS) to review the published literature, reach consensus on optimal strategies for screening, monitoring, and treating cognitive changes, and propose strategies to address barriers to optimal care. Based on current evidence, the Society has made recommendations, endorsed by the Consortium of Multiple Sclerosis Centers and the International Multiple Sclerosis Cognition Society.  Read the paper now.

Positive Stem Cell Trial Results

Published results from a small study of hematopoietic stem cell transplantation (HSCT) in people with aggressive relapsing-remitting MS not controlled by disease-modifying therapies achieved its primary endpoint with significantly fewer people experiencing MS progression in the group that underwent HSCT. Read more in the Society News.

Discovery opens new opportunities to slow or reverse MS

A new study shows an overlooked source may be able to replace lost nerve insulation and provide a new way to treat multiple sclerosis. The discovery of mature myelin-producing cells’ capacity for repair opens new opportunities to slow or reverse the disease. That may call for new therapeutic approaches that rally the oligodendrocytes to reach out with new lifelines to damaged myelin sheaths.

Consensus has held that once an axon is robbed of its myelin, the only way to bring it back is by starting with fresh oligodendrocytes. Only oligodendrocytes arising from precursors called oligodendrocyte progenitor cells can apply a new coat of myelin to axons. Thus, MS treatments aimed at remyelination have focused on recruiting progenitor cells in demyelinated areas and spurring them to develop.

However, researchers at the University of Wisconsin-Madison’s School of Veterinary Medicine have shown in a new study that starting from progenitor cells is not the only route to remyelination. In cats and rhesus macaques experiencing a severe loss of myelin, the study’s authors found fully developed oligodendrocytes already in place were reaching out and beginning to coat affected axons with myelin once again. The catch is that to be helpful and remyelinate damaged axons, the adult oligodendrocytes may still need to have connections to surviving myelin segments – called internodes – on other axons.

Cats fed irradiated food for several months developed severe myelin loss throughout the nervous system. When the cats returned to a regular diet, nerve function was restored because of extensive myelin repair. The cats’ demyelination problems are unusual as a lab model of the disease.

In the new study, the researchers looked at the cats’ nervous tissue and found a unique myelin mosaic – axons surrounded by thick layers of myelin (formed during development when the axons themselves grew) were interspersed with other axons surrounded by thin layers of myelin. The researchers found oligodendrocytes connected to both thick and thin myelin sheaths in the cat spinal cord.

They also found this association when they reached back to a decades-old monkey model of demyelination. The monkeys’ myelin lesions resembled those in the cats.

Results of animal model studies sometimes do not translate to humans. According the researchers, the process may not be playing out in human MS patients fast enough to help mitigate the progression of the disease. Or too many oligodendrocytes may lose so many of their internodal connections that they become inactive or die.

The study was published in the Proceedings of the National Academy of Sciences.

 

Annual MS Holiday Gala – Dec 15

The Roanoke Valley MS Support Group invites anyone whose life has been affected by multiple sclerosis, including caregivers, family and dear friends to join us for our annual holiday gala.  The evening starts at 5pm at the Holiday Inn-Tanglewood (4468 Starkey Rd, Roanoke) with a sponsored dinner followed by a live dj with dancing and karaoke.  There will be games, door prizes, family crafts, photo booth and a fun and funny gift exchange game (bring 1 wrapped gift per person).  And gifts for our children!  A block of rooms have been reserved at a great rate for those wanting to make a weekend of it.  Call (540) 774-4400 and ask for MS Alliance Gala rate for Dec 14-15.  Dress is holiday festive, which means wear what makes you happy and comfortable, right?!  Dinner requires RSVP (link), but no registration required to attend the party starting at 7ish.