National MS Society

Top 10 Multiple Sclerosis Stories of 2018

Multiple Sclerosis News Today brought you daily coverage of key findings, treatment developments, andĀ clinical trials related to multiple sclerosis (MS) throughout 2018. We look forward to reporting more news to patients, family members, and caregivers dealing with MS during 2019. Here are the top 10 most-read articles of…

National MS Society Welcomes Mud-Lovers to 2018 MuckFest MS

The National Multiple Sclerosis Society is inviting all mud-lovers to Saturday’s kickoff ofĀ MuckFest MSĀ in Boston, Massachusetts, which raises money and awareness for multiple sclerosis (MS). The event includes a 5K ā€œmud runā€ with ā€œoutrageous obstacles and a whole lot of mudā€ thatĀ definitely will make you sore ā€œfrom…

National MS Society to Award $433,800 to Support 10 Pilot Research Projects

The National Multiple Sclerosis Society will award $433,800 to 10 high-risk pilot studies that will quickly evaluate new strategies and interventions and enhance knowledge about multiple sclerosis (MS). According to a press release, the award winners will address different aspects of the disease, including potential treatments for fatigue and loneliness, to improve patients' walking abilities, and a strategy to change gut bacteria effects in MS. The year-long Pilot Research Grant program is a way to support early-stage research projects to quickly test their effectiveness. The MS Society also said that additional projects will be awarded this year. Results of a recent survey of approximately 300 pilot grant recipients revealed the program successfully promotes new ideas and brings new researchers to the MS field. About 90 percent of the respondents agreed that the financial support was very important for their research project. In 85 percent of cases, the grant supported new ideas, and in 56 percent it allowed support for additional grants. These pilot grants allow researchers to obtain preliminary data so they can decide to apply for additional funding, if the project looksĀ  promising, or to put the idea to rest.

Researcher Wins National MS Society Grant to Study Patients’ Emotional Processing Challenges

A $44,000Ā National Multiple Sclerosis SocietyĀ grant will allow a researcher at theĀ Kessler FoundationĀ to advance her work on multiple sclerosisĀ patients’Ā emotional processing challenges. Dr.Ā Helen Genova, Kessler’s assistant director of neuropsychology and neuroscience research, has been studying cognitive dysfunction in people with various diseases, including MS. In addition to neurological problems,…

FDA Warns of Risks Linked to Gadolinium-based Contrast Agents Used in MRI Scans

The U.S. Food and Drug Administration (FDA) has updated aĀ safety bulletinĀ about gadolinium-based contrast agents (GBCAs), after studies raised new concerns about them. Doctors often use GBCAs to diagnoseĀ multiple sclerosis (MS),Ā monitor disease activity and verify the effectiveness of MS therapies.Ā Gadolinium is a metal ion, or electrically charged molecule, that…

National MS Society Endorses US-Canada Registry Aiming to Advance Research and Patient Care

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis registries, clinicians, researchers and patients in the U.S. and parts of Canada. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers. It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS. Like many registries, NARCRMSĀ includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression.Ā It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid inĀ recruiting patients into clinical trials. NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code.Ā To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients. The registry builds onĀ North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality. NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.

Longevity Receives $316,000 Grant to See if Its Nerve-cell-protecting Therapy Will Work in MS

Longevity BiotechĀ has received a $316,384 grant from theĀ National MS SocietyĀ to see ifĀ LBT-3627,Ā theĀ nerve cell-protecting therapy it has tested in Parkinson’s, can work in multiple sclerosis as well. The company designed the therapy to protect and repair damaged nerve cells and restore balance to the out-of-whack immune response associated…

Can iPhone App Grasp the MS Experience? Duke Study Wants to Find Out

Researchers at Duke University want to determine if data collected through an iPhone app can ably capture individual experiences in people with multiple sclerosisĀ to improve doctor-patient communication and overall disease understanding. According to a National MS Society report, the researchers want to investigate the benefits combining mobile phone-based data with machine learning (the ability of a smartphone to mimic human behavior) and patient participation. The study is currently enrolling MS patients, 18 or older, live in the United States and be able to read and understand English. Participants must own or have daily access to an iPhone (iOS 9 or greater) to download a free, MS Mosaic app from the Apple Store. The app is not yet available for Android phones. The rationale behind the study is that MS can be an extremely complex condition, with symptoms ranging from numbness, walking difficulty, to vision impairment and fatigue. Each patient's experience is different and can be affected by medication, emotional health, and environmental factors. This complexity can complicate research. Study participants will receive daily, weekly and monthly questionnaires to fill about their symptoms. Daily surveys should take no longer than a minute to complete, and weekly surveys about ten minutes. Initial registration should take about 20 minutes, the NMSS report says. In some of the surveys, participants will be asked to perform specific tasks while holding or using the mobile phone, like walking 25 steps, turning around, then walking back 25 steps ā€“ while holding the phone. Other tests include tapping on the phone screen repeatedly to test motor speed, coordination and fatigue, or playing a pattern game to assess short-term memory. These tasks should take about five minutes each. Patients can choose not to answer some of the questions or to participate in certain tasks. All information is collected through the app, and will be sent to a secure data server. Participants can export data to share with a healthcare provider. Each person will be identified by a code, and data will be analyzed in a way that maintains confidentiality. Researchers, however, be able to identify a participant should they need to do so for "research integrity or legal purposes," the report states. Questions regarding this study can be answered by sending an email toĀ [email protected].

MS Society, TG Therapeutics Partner to Advance Potential Oral Therapy for Progressive MS

Fast Forward, a non-profit subsidiary of the National Multiple Sclerosis Society, will give financial support to TG Therapeutics to advanceĀ TGR-1202 (umbralisib) into preclinical testing as a potential oral therapy for progressive forms of multiple sclerosis. The support, whose value was not specified, is part of a Sponsored Research Agreement between Fast Forward and the company. Research work will be led by Lawrence Steinman, MD, a professor of pediatrics, neurology, and neurological sciences at Stanford University. TGR-1202 is an orally administrated inhibitor that blocks a signaling enzyme called PI3K delta. Immune cells such as B-cells have high levels of this enzyme, which is thought to be important for cell proliferation and survival. "We look forward to evaluating umbralisib [TGR-1202]'s effect on our preclinical progressive MS models in hopes to move umbralisib closer to clinical development in MS," Steinman said. The approval ofĀ Ocrevus (ocrelizumab), by Genentech,Ā to treat primary progressive and relapsing multiple sclerosis underscored the potential of B-cell-targeted therapies for MS patients. As a result, investigative drugs that also aim to bolsterĀ B-cell survival or activity, such as those being developed by TG Therapeutics, are an attractive approach to potentially treating patients. Another potential treatment by the company ā€” an engineered antibody, TG-1101 ā€” targets a specific sequence on the CD20 protein found on immune B-cells. This infusion therapy is now in two Phase 3 clinical studies for relapsing multiple sclerosis, ULTIMATE I and ULTIMATE II. Both are currently enrolling patients at sites in Kentucky, Tennessee, and New York.

Woman with MS and Spouse to Trek 500 Miles to Raise Awareness, Funds for MS Society

April and Bernie Hester are busy planning their second 500-mile thru-hike of South Carolina's Palmetto Trail, which they will begin on Oct. 1 to raise awareness for multiple sclerosis and funds for the National MS Society. Thousands of people hike parts of the trail every year, but few do the entire 500-mile hike, said Suzette Anderson, of the Palmetto Conservation Foundation (PCF), an organization dedicated to conserving South Carolina's natural and cultural resources. The couple's "Finish MS Hike"Ā is the second time they'll be hiking the full trail this year. In April they started hiking from the sea and 66 days later completed the trail in the mountains. This time they'll start in the mountains and end at the sea. The couple willĀ traverse over mountains, on trails, throughĀ cities, and on roadways. April, who has MS, is hoping that her efforts will bring much-needed awareness to the condition and that the pair can reach their goal of raising $100,000 for MS research toward a cure. Their effort, combined with the debilitating effects of MS, are among the reasons why April and Bernie Hester were recognized as trail ambassadors by the PCF. The couple will post regular updates on their ā€œFinish MS Hikeā€ blog and Instagram account, to allow people to follow their adventures, read about their journey, and gain insight as they face and conquer challenges along the way. The couple has already written a few entries to keep their audience informed. The Palmetto is the longest trail and largest trail construction project in South Carolina. Today, the trail crosses the state from Walhalla in the mountains of Oconee County to Awendaw on the coast in Charleston County. Another 150 miles in the Midlands and Upstate remain to be acquired and constructed. To help raise money to "Finish the Trail," the PCF and RJ Rockers Brewing Company have combined their passions for trekking and craft beer to create Palmetto Trail Pale Ale. A portion ofĀ sales goes to support and finish the Palmetto Trail. You can buy Palmetto Trail Pale Ale at any of the following locations: RJ Rockers Brewery,Ā Craft and Draft,Ā Texas Roadhouse,Ā Thirsty Fellow,Ā Flying Saucer,Ā Capital City Club,Ā Triangle Char+Bar,Ā Bohemian Bull, Publico Kitchen & Tap.

National MS Society Among Groups Promoting Sept. 22 as Falls Prevention Awareness Day

Today is Falls Prevention Awareness Day, an annual campaign that occurs every Sept. 22 to encourage multiple sclerosis patients and others prone to falls to give a little extra thought on how to identify factors for falls. The event, coordinated by the National Council on Aging, will be the 10th in an annual series that has taken place since 2007. The National Multiple Sclerosis Society is contributing to the event by presenting research into MS-related falls, as well as resources to identify risk factors of falling. Research shows that 50 to 70 percent of MS patients report falling at least once over a six-month period, with about 30 percent falling several times. Many people with MS also get injured when they fall, adding significantly to the burden of MS. Studies show that typical MS symptoms, such as poor gait and balance, or the loss of proprioception ā€” the perception of where body parts are in a space ā€” contribute to falls in MS, which typically occur while doing everyday activities at home. To better understand why people with MS fall, and how to best prevent it, current research focuses on better detection of falls. One approach is to use automatic fall detection devices, which patients can wear. A 2015 symposium on gait and balance in MS focused specifically on falls. The meeting concluded that although knowledge and prevention strategies have improved, much remains to be done. In that regard, the International MS Fall Prevention Research Network helps researchers collaborate on falls research. But neurological symptoms are not the only factors at play. Psychological issues make up another area in the risk spectrum, says the NMSS. Fear of falling or overconfidence both contribute, as does inactivity. Besides the guide, the NMSS has also developed the Free From Falls program, containing eight modules with webinars, downloadable educational material and video-guided exercises. These materials teach patients about biological, behavioral and environmental risk factors for falling, while also offering tips and strategies that may reduce the risk of falls.

Children and Teens with Multiple Sclerosis Consume Less Iron, Study Reports

Children with multiple sclerosis consume less iron, which may affect their immune and nervous systems, according to a study. Most MS cases occur between the ages of 20 and 40, but sometimes children under 18 develop it. Pediatric-onset MS, as it is called, is believed to account for 3 to 5 percent of cases that adults have now. Despite their low frequency, they are important because "the study of factors early in life which could affect their disease may provide important insight into the disease more generally," the researchers from the Network of Pediatric MS Centers wrote. One of the factors that could be important in the onset of MS is diet. But little has been known about how diet influences the risk and progression of the disease, particularly in pediatric MS. In a study funded by the National MS Society, researchers decided to investigate the association between diet and MS in children, according to a press release. The team recruited 312 MS patients 18 and younger from 16 children's hospitals in the United States, and 456 controls without MS. The participants, or their parents, answered a questionnaire dealing with the participants' medical history, their physical development, and whether they were exposed to potentially harmful environmental factors. The questionnaire also covered demographic information and race. Researchers used the Block Kids Food Screener questionnaire to obtain information about the participants' diets, including their intake of fiber, fat, carbohydrates, proteins, fruits, vegetables, dairy products, and iron. The analysis showed no meaningful link between the consumption of fiber, fat, carbohydrates, proteins, fruits, vegetables, and dairy products and children's development of MS. Children with the disease did have lower iron intake than the controls, however. Although in this exploratory study researchers didnā€™t look at whether there was a cause-and-effect relationship between iron and MS, the results suggested that children with the disease may be less likely to consume iron, a fact that warrants further investigation. Iron is a vital mineral for our body to function properly, and low iron intake may affect the immune and nervous systems. Future studies on the risk of children developing MS should "investigate the role of specific vitamins and minerals," the team said. They should also "investigate the influence of dietary factors on disease outcomes in already established" cases of MS.

National MS Society Highlights Diet, Lifestyle Research Focusing on Living Well With Multiple Sclerosis

The National Multiple Sclerosis (MS) SocietyĀ has selectedĀ research highlightsĀ from a recent MS conferenceĀ in an effort to help make living with the disease less burdensome. Presentations from the May 24-27Ā annual meeting of the Consortium of Multiple Sclerosis Centers (CMSC) in New Orleans ā€” which ranged fromĀ advice on smartphone apps to diet…