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CMSC and ACTRIMS Cooperative Meeting Highlights (2014)

Highlights from the Sixth Cooperative Meeting of the Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS), held in Dallas, Texas, May 28 through May 31, 2014

June 25, 2014

Written by Margaret M. McCormick, RN, BSN, MSCN
Reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer
Edited by Susan Wells Courtney, MSAA Senior Writer and Creative Director

Introduction

The largest and most comprehensive meeting on multiple sclerosis (MS) care and research in North America took place May 28 through May 31 in Dallas, Texas, combining the 28th Annual Meeting of CMSC and the 19th Annual Meeting of ACTRIMS. This is the sixth year both organizations have met together to bring researchers and clinicians from across the spectrum of MS care to share and discuss the latest research findings in MS.
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Swim for MS – Why I Swim Videos Selected as a Winner in the 35th Annual Telly Awards

June 24, 2014

MSAA is proud to announce its Swim for MS – Why I Swim videos won a Silver Telly Award in the category of Online Campaign/Not-for-Profit. The 35th Annual Telly Awards received nearly 12,000 entries from all 50 states and numerous countries.
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Healthline Names My MS Manager™ One of the Best Multiple Sclerosis Mobile Apps for Second Year

June 24, 2014

My MS Manager™ - MSAA’s free mobile phone app has been recognized by Healthline.com as one of the best multiple sclerosis smartphone apps for the second consecutive year. Healthline’s selection of the best MS apps represents iPhone and Android apps that are useful in making life with MS more manageable and were based on factors including affordability, user rating and functionality.
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The Multiple Sclerosis Association of America Publishes Informative About MS Booklet

June 5, 2014

The Multiple Sclerosis Association of America (MSAA) is pleased to announce that the newly published About MS booklet is now available as both a printed and online publication. MSAA’s About MS: An Overview of Multiple Sclerosis (MS), Including Symptoms, Treatments, and Research offers an overview of multiple sclerosis including history, process and symptoms, types of MS, possible causes, diagnosing and evaluating disease activity, relapse management, and FDA-approved disease-modifying treatments. Also included are highlights of some of MSAA’s programs and services available to the MS community.

This essential publication, reviewed by MSAA’s Chief Medical Officer and MS expert Dr. Jack Burks, is a valuable resource for individuals with MS as well as for their care partners. Funds for the printing of the About MS booklet have been generously provided through a grant from Genzyme, a Sanofi company. Please read or download the About MS booklet for free or order a printed copy at mymsaa.org

For more information about this publication and MSAA’s programs and services, please contact MSAA at (800) 532-7667 or visit mymsaa.org

About MSAA
The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with professional consultants; award-winning publications, including MSAA’s magazine, The Motivator; MSAA’s nationally recognized website (at www.mymsaa.org), featuring award-winning educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™ (named one of the best multiple sclerosis iPhone & Android apps by Healthline.com); a resource database, My MS Resource Locator; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational events held across the country; MRI funding; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

About Multiple Sclerosis
Multiple sclerosis (MS) is a disease of the central nervous system (CNS), which consists of the brain, optic nerves, and spinal cord. MS damages or destroys the protective covering (known as myelin) surrounding the nerves of the CNS, and can potentially injure the nerves as well. This damage causes reduced communication between the brain and nerve pathways. Common MS symptoms include visual problems, overwhelming fatigue, difficulty with balance and coordination, and various levels of impaired mobility. Many experts estimate that 2.5 million people worldwide have been diagnosed with this disease, and most people with MS are diagnosed between the ages of 15 and 50. MS is not contagious and researchers continue to look for both a cause and a cure.

Highlights from the American Academy of Neurology's Annual Meeting

June 4, 2014

The American Academy of Neurology’s (AAN’s) 66th Annual Meeting took place in Philadelphia, Pennsylvania April 26th-May 3rd. The AAN is an association of more than 27,000 neurologists and neuroscience professionals dedicated to advancing the care of individuals with neurologic disease. Every year, these professionals gather to hear the latest findings in research and treatments for neurological conditions, including multiple sclerosis (MS). To follow are some important highlights.
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FDA Accepts Resubmitted Lemtrada™ Application for Review

May 30, 2014

Genzyme, a Sanofi company, announced today that the United States Food and Drug Administration (FDA) has accepted for review the supplemental Biologics License Application (sBLA) for Lemtrada™ (alemtuzumab), a proposed treatment for relapsing forms of multiple sclerosis (MS). This application was recently resubmitted after the FDA did not approve Lemtrada in late December 2013, when Genzyme stated that they had received a Complete Response Letter from the FDA. This letter informed them that the application for their drug was "not ready for approval."
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The Issues Surrounding Generic Versions of MS Drugs

May 20, 2014

In the Winter/Spring 2014 issue of MSAA’s magazine, The Motivator, MSAA introduced the concept of biosimilar drugs, defining what they are and how they may impact future treatment options for individuals with multiple sclerosis (MS). The feature article titled “Biosimilars: Approval on the Horizon” described biosimilars as drugs that are “highly similar” to the approved biologic medications.
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Genzyme Resubmits Lemtrada to the FDA

April 7, 2014

Genzyme, a Sanofi company announced today that they will resubmit its supplemental Biologics License Application (sBLA) for approval of Lemtrada (alemtuzumab) for relapsing forms of multiple sclerosis, according to a press release issued by Genzyme. Following discussions with the Food and Drug Administration (FDA), Genzyme intends to submit the application, addressing issues previously noted by the FDA in its Complete Response Letter.
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Multiple Sclerosis Association of America’s Nationwide Search Uncovers Inspiring Stories of People Living with MS Who Swim for Better Health

For MS Awareness Month, MSAA Launches Effort to Get More People with MS in the Pool

March 18, 2014

In honor of Multiple Sclerosis (MS) Awareness Month, the Multiple Sclerosis Association of America (MSAA), through a collaborative partnership with Genzyme, a Sanofi company, is proud to announce the stories from three individuals in the MS community who describe how swimming has helped manage their MS symptoms and improve their overall well-being. Today, MSAA is unveiling their compelling stories captured on video at www.SwimForMS.org, along with new how-to resources about water-based exercise to help improve the lives of individuals living with MS.
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MSAA Partners with Wearable Hope to Raise Funds and Awareness for MS

March 4, 2014

The Multiple Sclerosis Association of America (MSAA) has been chosen as Wearable Hope’s partner organization of the week! Starting March 4, 2014, you can shop for MSAA t-shirts at www.wearablehope.com and choose from one of two custom designed shirts.
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March is MS Awareness Month

March 3, 2014

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. MSAA urges everyone to help raise awareness of multiple sclerosis throughout your community and help improve the lives today for people with MS and their families.
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The Multiple Sclerosis Association of America Publishes 2014 MS Research Update

February 20, 2014

The Multiple Sclerosis Association of America (MSAA) is pleased to offer the latest MS Research Update, available as both a printed and online publication. This vital resource provides a comprehensive overview of research findings on the ten FDA-approved disease-modifying therapies for relapsing forms of multiple sclerosis (MS), as well as the latest study results on many experimental treatments currently under investigation. Directions for future research are also presented.
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MS Coalition Submits Letter to FDA Regarding Lemtrada™ Denial

February 14, 2014

The Multiple Sclerosis Coalition (MSC) is a collaborative network of independent MS organizations whose mission is to increase opportunities for cooperation and provide greater opportunity to leverage the effective use of resources for the benefit of the MS community. Members of this organization have collectively sent a letter to the United States Food and Drug Administration (FDA), asking for clarification and reconsideration of various issues involved in the FDA’s recent denial of Lemtrada™ (alemtuzumab, formerly Campath).
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New Copaxone Dosing Approved for Fewer Injections

January 29, 2014

On January 28, 2014, Teva Pharmaceutical Industries Ltd. announced that the new, three-times-per-week dosing of Copaxone® (glatiramer acetate), at the more concentrated dose of 40 mg, has been approved by the FDA. This new formulation enables individuals who take Copaxone to reduce their number of subcutaneous injections by 60 percent
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Lemtrada Denied FDA Approval; More Studies Needed

Genzyme Plans to Appeal the FDA's Decision

December 30, 2013

Lemtrada™ (alemtuzumab, formerly Campath) did not receive approval from the United States Food and Drug Administration (FDA) for the treatment of relapsing forms of multiple sclerosis (MS). Genzyme, a Sanofi company, announced today that it had received a Complete Response Letter from the FDA, informing them that the application for their drug is "not ready for approval."
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The Multiple Sclerosis Association of America
Announces Swim for MS - Why I Swim Campaign

December 4, 2013

The Multiple Sclerosis Association of America (MSAA) announces a national call for entries for the Swim for MS - Why I Swim campaign, through a collaborative sponsorship with Genzyme, a Sanofi company. Individuals with multiple sclerosis (MS) who currently swim or participate in water-based exercise programs are encouraged to visit SwimForMS.org and share their personal story about how water activities have impacted their lives.
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FDA Committee Recommends Lemtrada for Approval

November 14, 2013

On November 13, 2013, the United States Food and Drug Administration (FDA) held a meeting to discuss Lemtrada® (alemtuzumab, also known as Campath), a new treatment that has been submitted for approval to treat relapsing forms of multiple sclerosis (MS). Despite concerns over the drug’s safety as well as study design, the FDA’s committee voted to recommend the drug for approval.
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MSAA Hosts an Important Healthcare Update Webinar for People with Multiple Sclerosis

November 12, 2013

The Multiple Sclerosis Association of America (MSAA) will hold a live webinar on the Affordable Care Act (ACA) for individuals with multiple sclerosis on November 19, 2013 at 8 pm Eastern Standard Time. Titled The New Insurance Marketplace and MS, this one-hour webinar will provide an understandable explanation of the new health insurance Marketplace with specific information on key areas that will significantly impact the multiple sclerosis community.
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Highlights from the ECTRIMS 29th Congress International Meeting (2013)

November 6, 2013

Written by Margaret M. McCormick, RN, BSN, MSCN
Reviewed by Jack Burks, MD, MSAA Chief Medical Officer
Edited by Susan Wells Courtney, MSAA Senior Writer and Creative Director

This year's 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) was held in Copenhagen, Denmark in October, 2013. Each year, ECTRIMS hosts the world’s largest annual international meeting devoted entirely to research and care in multiple sclerosis (MS). More than 1,500 abstracts and posters were presented at this year’s conference, providing the latest findings in MS research, treatments, symptom management, and patient care to an estimated audience of nearly 7,000 MS professionals from around the world.
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MSAA’s Networking Program Featured as a Top MS Support Group by Healthline.com

November 1, 2013

MSAA is honored to have its Networking Program named as one of the top MS Support Groups by Healthline.com. The article by Healthline featured nine multiple sclerosis (MS) support groups to encourage patients to seek needed answers and resources.
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MSAA Debuts New Mobile Website

October 28, 2013

MSAA Mobile Website on an iPhoneOn October 30, 2013, the Multiple Sclerosis Association of America (MSAA) debuts a new mobile website (accessed at mymsaa.org via a mobile device) to meet the growing needs of individuals with multiple sclerosis (MS) and their care partners. The mobile website allows users to have on-the-go access to many of the resources currently available on MSAA’s desktop website. The mobile website is another example of how MSAA continues to develop initiatives to improve lives today for the entire MS community.
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MSAA Featured in USA Today Article

October 10, 2013

Please read this USA Today article about organizations that help people with obtaining information in regard to the new health exchanges.

The Multiple Sclerosis Association of America Launches New Website Features

August 27, 2013

The Multiple Sclerosis Association of America (MSAA) is pleased to announce new website additions including an MS Relapse Resource Center and chat feature to its award-winning website, mymsaa.org. As a leading resource for the entire multiple sclerosis (MS) community, MSAA developed these additions to provide easier access to vital information and assistance to individuals with MS, their care partners, and healthcare professionals.
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My MS Manager™ Named One of the Best Multiple Sclerosis Mobile Apps by Healthline

August 22, 2013

MSAA is pleased to announce that Healthline.com has named MSAA's My MS Manager™ mobile phone app as one of the top smartphone and tablet applications for the iPhone and Android platforms. Healthline selected the best MS apps based on the potential to assist individuals and their loved ones in a number of ways.
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Recent Reports of Adverse Events with Individuals on MS Medications - How to Interpret the Information

August 2, 2013

Two reports of adverse events have appeared in the media recently. Each referred to an individual with MS who had been taking an MS disease-modifying therapy (DMT) and later became ill or died.
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Vaccine Safety and MS

July 31, 2013

Written by Susan Wells Courtney
Reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer

Article summary: Published studies to date continue to affirm the safety of several vaccinations for individuals with MS. These vaccines (listed in this article) do not increase the risk of developing MS or exacerbating its symptoms. The safety of the shingles vaccine is more difficult to judge for individuals with MS, since this is a live-virus vaccine. Vaccines that use a live virus could pose a risk for individuals with compromised immune systems, resulting from an illness or a medication taken for an illness. The shingles vaccine is important for individuals 60 years and older, because the risk of developing shingles, as well as a painful long-term complication of shingles, greatly increases with age. Similar to the shingles vaccine, the yellow fever vaccine also uses a weakened, live virus. In a small study, the yellow fever vaccine was shown to increase MS disease activity. Before receiving any vaccine, individuals with MS should consult their physician to make sure that the specific vaccine and its timing is appropriate for them.
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Shingles Overview and Vaccine Safety

July 31, 2013

Information compiled by Susan Wells Courtney
Reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer

Article summary: Shingles is caused by the reactivation of the varicella zoster virus (VZV), which is the same virus that causes varicella (chickenpox). The reactivation of this virus causes a painful rash with clusters of fluid-filled blisters. Postherpetic neuralgia (PHN) is the most common complication of shingles, causing chronic, sometimes excruciating pain. The shingles vaccine (Zostavax®) is recommended for use in people 60 years and older to reduce the risk of shingles. The shingles vaccine is a live, attenuated vaccine, which could be an issue for members of the MS population, as medications that may modulate or suppress the immune system could pose a risk with a live vaccine. Individuals with MS who are considering a shingles vaccine should discuss the risks and benefits with their doctor.
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CMSC and ACTRIMS Cooperative Meeting Highlights (2013)

Highlights from the Fifth Cooperative Meeting of The Consortium of Multiple Sclerosis Centers (CMSC) and Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS), held in Orlando, Florida, May 29 through June 1, 2013

June 19, 2013

Written by Margaret M. McCormick, RN, BSN, MSCN
Reviewed by Jack Burks, MD, MSAA’s Chief Medical Officer
Edited by Susan Wells Courtney

The largest and most comprehensive meeting on multiple sclerosis (MS) care and research in North America took place May 29 through June 1 in Orlando, Florida, combining the 27th Annual Meeting of CMSC and the 18th Annual Meeting of ACTRIMS. This meeting is unique in that it brings together researchers and clinicians from across the spectrum of MS care, including physicians, nurses, physical and occupational therapists, psychologists, social workers, pharmacists, rehabilitation specialists, and advocacy professionals.
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Continued Heart Monitoring Advised during and after Novantrone® (mitoxantrone) Treatment

This message was developed as part of a collaboration with FDA’s Safe Use Initiative, the Veterans Administration, professional experts, professional organizations, patient advocacy organizations and private insurers.

June 19, 2013

It is now known that mitoxantrone can harm your heart’s pumping action. This harm can show up while you are being treated with the medicine or many years later. To be sure it is working well, your heart needs to be tested before you are treated with mitoxantrone and every year thereafter, even after you stop using mitoxantrone. If the testing shows your heart needs some help, the sooner you get treatment, the better for your health.
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Multiple Sclerosis Coalition debuts on Facebook and Twitter

Collaborative nonprofit to serve as “one-stop” source for information on MS services
June 17, 2013

Today the Multiple Sclerosis Coalition (MSC) debuts new accounts on Facebook and Twitter that will serve as a “one-stop” source for information on available MS programs and services. Representing the leading organizations in MS research, advocacy, education, and treatment, the MSC will provide information on the individual offerings of member organizations as well as collaborative efforts orchestrated through the Coalition itself. The MSC can be found on Facebook at www.facebook.com/MSCoalition and on Twitter at @MSCoalition.
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New Dosing Regimen for Copaxone Submitted to FDA

May 31, 2013

Teva Pharmaceuticals Industries, Ltd., the makers of Copaxone® (glatiramer acetate), announced on May 30, 2013 that the United States Food and Drug Administration (FDA) had accepted a supplemental new drug application (sNDA) for Copaxone at a higher dose and reduced frequency. The present FDA-approved dose of Copaxone is 20 mg given daily via subcutaneous injection. The new dosing under review is double the concentration (40 mg) and is given three days per week (also via subcutaneous injection) versus every day. If FDA approved, a less-frequent treatment option for Copaxone may become available.
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Biogen Idec Submits a New MS Treatment to FDA for Approval

May 22, 2013

UPDATE: On July 19, 2013, Biogen Idec announced that the United States Food and Drug Administration (FDA) had accepted their application for the marketing approval of Plegridy™ in the United States. The FDA will review the drug under its standard review timeline. The European Medicines Agency (an agency in Europe similar to the FDA in the United States) is also reviewing an application for the approval of Plegridy in the European Union.


On May 21, 2013, Biogen Idec submitted a new treatment for multiple sclerosis (MS) to the United States Food and Drug Administration (FDA) for approval. This potential new disease-modifying therapy (DMT) for the long-term treatment of MS is a pegylated version of interferon beta-1a. Using the brand name of "Plegridy™," if approved, this new product would require fewer injections than the other presently approved self-injectable DMTs for MS.
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Highlights from the American Academy of Neurology's Annual Meeting

May 8, 2013

The American Academy of Neurology's (AAN) 65th Annual Meeting took place in San Diego, California in March. This large medical conference presents the latest findings in research and treatments for neurological conditions, including multiple sclerosis (MS). To follow are some important highlights.
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PML Reported in Psoriasis Patients Taking Fumaric Acid Medications in Europe

April 26, 2013

Two cases of progressive multifocal leukoencephalopathy (PML) in individuals taking either fumaric acid or a compound of fumaric acid esters were reported in The New England Journal of Medicine (N Engl J Med 2013;368;17:1657-1660) on April 25, 2013. PML is a potentially fatal brain infection with the JC virus (JCV), in people with weakened immune systems. Both of these reports were from Europe in individuals receiving long-term treatment for psoriasis (a chronic skin problem that causes skin cells to grow too quickly, resulting in thick, white, silvery, or red patches of skin [WebMD]).
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Tecfidera Approved for the Long-Term Treatment of MS

March 28, 2013

The United States Food and Drug Administration (FDA) announced on March 27, 2013 that it has approved Tecfidera™ (dimethyl fumarate or DMF, formerly known as BG-12) as a first-line therapy for the long-term treatment of relapsing forms of multiple sclerosis (MS). Tecfidera’s parent company, Biogen Idec, submitted a New Drug Application (NDA) to the FDA for the approval of this drug in February 2012. (Read the FDA’s press release on the approval of Tecfidera.)
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March is Multiple Sclerosis Awareness Month

March 1, 2013

The Multiple Sclerosis Association of America (MSAA) recognizes March as MS Awareness Month. Throughout March, MSAA encourages individuals to expand their knowledge, understanding, and support of individuals whose lives are affected by multiple sclerosis (MS).
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The Multiple Sclerosis Association of America Launches New Website

February 21, 2013

The Multiple Sclerosis Association of America (MSAA) is pleased to introduce its new website, mymsaa.org.
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Multiple Sclerosis Association of America Teams Up With SwimOutlet.com To Promote Swim For MS

February 13, 2013

The Multiple Sclerosis Association of America (MSAA) is pleased to announce its new partnership with SwimOutlet.com to help promote the charity’s national fundraiser, Swim for MS. Serving as the distribution sponsor for Swim for MS, SwimOutlet.com will feature promotional information and ongoing updates on swim events through newsletter articles, targeted email campaigns, and posts on social media including Facebook and Twitter. 
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Flu and Flu Vaccine Information

January 10, 2013

Recent news reports and statistical information indicate that this year the incidence rate for seasonal influenza (flu) is already high and is widely impacting communities across the nation. The good news is that the flu immunization prepared for the 2012-2013 flu season appears to be very well matched to those flu strains occurring across the country; therefore, preventative measures such as obtaining a flu vaccine may be helpful in preventing the contraction of the flu.
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MSAA's Mobile Phone App Launches in the Android Marketplace

November 15, 2012

My MS Manager™, the Multiple Sclerosis Association of America’s Mobile Phone App for the MS Community, Launches in the Android Marketplace

Cherry Hill, New JerseyMy MS Manager™, the first-of-its-kind mobile phone application developed to help individuals better manage their MS, is now available on the Android platform. Since its launch in the Apple App Store in June of 2011, My MS Manager has been downloaded more than 9,000 times, with users entering data about their MS on various Apple mobile products.
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Emergency and Assistive Services in Response to Hurricane Sandy

November 2, 2012

The impact of Hurricane Sandy to the residents of the mid-Atlantic, Northeastern, and Midwestern United States has been devastating. MSAA’s staff is deeply saddened by the tragic loss of life as well as the destruction of personal possessions, homes, and businesses, caused by this storm.
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Aubagio® (Oral Teriflunomide) Receives FDA Approval

September 13, 2012 - Updated: September 17, 2012

On September 12, 2012, Sanofi and its subsidiary Genzyme announced that the United States Food and Drug Administration (FDA) had approved their new drug, Aubagio® (oral teriflunomide), for relapsing forms of multiple sclerosis (MS). The FDA had accepted their New Drug Application (NDA) in October, 2011. This is the ninth disease-modifying therapy approved by the FDA for the long-term treatment of MS. Of these nine, Aubagio is the second approved medication for MS that is taken orally.
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MSAA Receives APEX Award for Publication Excellence

Multiple Sclerosis Association of America's Webinar "How to S.E.A.R.C.H.™ for the Right MS Therapy for You!" Wins Award

August 10, 2012

MSAA is proud to announce that a 2012 APEX Award for Publication Excellence has been given to our online video webinar, "How to S.E.A.R.C.H..™ for the Right MS Therapy for You!" This is the first APEX Award MSAA has received in the category of webinars and the eighth APEX Award received overall. This year's APEX award competition drew approximately 3,400 entries across a range of 11 categories.
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Highlights from The Consortium of Multiple Sclerosis Centers Annual Meeting, Held in San Diego (May 31 - June 4, 2012)

July 24, 2012

Editor's note: For easier reading, certain definitions have been included within the text and are often repeated throughout the article. Additionally, for easier reading, a brand name of an approved drug is used versus the generic name wherever possible.

The Consortium of Multiple Sclerosis Centers (CMSC) annual meeting provides a unique opportunity for MS professionals to come together in an interdisciplinary setting to discuss all aspects of MS care. Attendees include physicians, nurses, physical and occupational therapists, psychologists, social workers, and other MS professionals. Topics are wide-ranging, from the latest advances in research and symptom management, to practical workshops designed to improve hands-on care.
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Supreme Court Upholds Affordable Care Act

June 28, 2012

On June 28, 2012 a historic decision was made by the United States Supreme Court to uphold the Affordable Care Act (ACA). The ACA was originally approved by Congress and was then signed into law on March 23, 2010. The law was designed to make many changes to the way the healthcare and insurance systems work in the United States, with most of the scheduled changes requested to be implemented within a four-year period, or by the end of 2014.
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Multiple Sclerosis Association of America's MRI Institute Marks 10 Years of Helping Individuals with Multiple Sclerosis Obtain MRIs

June 26, 2012

Multiple Sclerosis Association of America's MRI Institute Marks 10 Years of Helping Individuals with Multiple Sclerosis Obtain MRIs

The Multiple Sclerosis Association of America (MSAA) is proud to mark the 10-year anniversary of one of its most sought after programs - the MRI Institute. This program is designed to help people who have been diagnosed with multiple sclerosis (MS) and lack health insurance coverage, acquire an MRI scan. The Institute has been supported by the pharmaceutical companies EMD Serono, Inc. and Pfizer Inc since 2002. During that time, the Institute has helped over 7,500 individuals who have MS and could not otherwise afford an MRI to monitor their multiple sclerosis.
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Highlights from The American Academy of Neurology's Annual Meeting

Highlights from The American Academy of Neurology's Annual Meeting, Held in New Orleans (April 21-28, 2012)

June 22, 2012

Editor's note: For easier reading, certain definitions have been included within the text and are often repeated throughout the article. Additionally, for easier reading, a brand name of an approved drug is used versus the generic name wherever possible.

Introduction

This year's American Academy of Neurology (AAN) meeting was especially exciting for multiple sclerosis (MS) clinicians and researchers. Results were presented from clinical trials that have been ongoing for the past three-to-four years, many of which focus on the "new generation" of oral drugs for managing MS progression. Studies have looked at the effectiveness and safety of the new agents, particularly as compared to the standard injectible drugs that became available starting in the early 1990's. Data on these new agents have been released gradually as the studies progressed through the clinical trials process, and anticipation of the details from completed studies has been building.
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Dive into Action Today with MSAA's Swim for MS Pool Party!

Multiple Sclerosis Association of America Offers a Unique Volunteer Opportunity for Individuals Interested in Making a Difference This Summer for the Multiple Sclerosis Community

June 20, 2012

The Multiple Sclerosis Association of America (MSAA) is proud to offer volunteers the opportunity to dive into action through the Swim for MS Pool Party. An offshoot of MSAA's popular Swim for MS program, the Pool Party is a one-day event volunteers host in their own backyard or community pool. To begin to plan their Swim for MS Pool Party, volunteers first select a date, then select an activity - such as cannonballs, swimming laps or even a game of Marco Polo - and finally collect pledges from friends and family for the activity chosen. It's as easy as 1-2-3!
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FDA Issues CCSVI Treatment Warning

May 14, 2012

On May 10, 2012, the United States Food and Drug Administration (FDA) issued a warning about experimental therapies aimed at treating chronic cerebrospinal venous insufficiency (CCSVI). This is a complex condition involving changes in blood flow from the brain back to the heart, caused by the twisting or collapse of certain veins located on the outside of the brain.
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New Prescribing Information for Gilenya

April 25, 2012

On April 20, 2012, Novartis announced changes to the prescribing information for Gilenya® (fingolimod) in the treatment of relapsing forms of multiple sclerosis (MS). This new prescribing information is applicable only to individuals who have not been given a first dose of Gilenya or for those who have stopped and will be restarting the drug. These changes do not affect any guidelines for individuals who are currently taking Gilenya.
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Awaiting FDA Review: MS Patient with PML on Gilenya after Tysabri

April 17, 2012

Novartis released a safety information update on April 13, 2012 stating that an individual with MS who was taking Gilenya® (fingolimod) was diagnosed with progressive multifocal leukoencephalopathy (PML). This infection of the brain has been associated with another treatment for MS, Tysabri® (natalizumab). Depending on the risk factors discussed below, a small number of MS patients may develop PML either while taking Tysabri or up to three months after discontinuing this drug.
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FDA Approves Avonex® Pen™ and Initial Dosing Regimen

March 7, 2012

Biogen Idec announced last week that the United States Food and Drug Administration (FDA) has approved both a new device (the Avonex Pen) as well as a new dosing regimen for Avonex (interferon beta-1a). These two approvals are aimed at assisting patients who are either taking Avonex presently, or who are just starting Avonex, for the treatment of relapsing forms of multiple sclerosis (MS).
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Biogen Idec Submits Application for BG-12

March 7, 2012

Biogen Idec announced last week that they have submitted an application to the United States Food and Drug Administration (FDA) for approval of BG-12 (dimethyl fumarate), an experimental oral drug for the treatment of relapsing-remitting multiple sclerosis (RRMS). The company plans to also submit an application for the same drug to the European Medicines Agency (EMA) shortly. Biogen Idec expects to hear back from these two agencies within a few months regarding the status and potential approval of BG-12.
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March is Multiple Sclerosis Awareness Month

March 1, 2012

The Multiple Sclerosis Association of America (MSAA) is pleased to recognize March as MS Awareness Month. During the month of March, MSAA will be highlighting various programs designed to expand knowledge, understanding, and support of individuals whose lives are affected by multiple sclerosis (MS).
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Antibody Test Identifies New Risk Factor for PML

January 27, 2012

On January 20, 2012, the United States Food and Drug Administration (FDA) announced that three factors are now identified with increasing the risk of Progressive Multifocal Leukoencephalopathy (PML) for individuals with multiple sclerosis (MS) being treated with Tysabri® (natalizumab). PML is a potentially fatal brain infection with the JC virus (JCV), in people with weakened immune systems. The FDA has approved a labeling change, which adds the results of a newly approved test for the presence of anti-JCV antibodies, to the two previously listed risk factors.
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MSAA Honored in the first Web Health Awards | MOBILE for My MS Manager™

January 27, 2012

The Multiple Sclerosis Association of America (MSAA) is pleased to announce My MS Manager ™, MSAA's mobile phone application, has been honored by the Web Health Awards | MOBILE with a Merit Award in the category of Mobile Application: Chronic Disease Management; Small Mobile Device in the Association/Professional Society/Non-Profit division.
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European Agency Recommends Increased Monitoring with First Dose of Gilenya

January 20, 2012

The European Medicines Agency (EMA) announced today that it has started a review of Gilenya (fingolimod) in response to reports of potential heart issues associated with the first dose of this drug.
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Potential Drug-Packaging Problem

January 11, 2012

The United States Food and Drug Administration (FDA) has notified the public that a packaging problem may have occurred with eight narcotic-type drugs (such as Opana®, Percocet®, and Endocet®), where a stray pill may have gone into another's packaging.
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Gilenya News Update

December 13, 2011

On December 20, 2011, the FDA posted a Safety Announcement on its website, noting the death of an individual with MS on the day following a first dose of Gilenya. The article states: "At this time, FDA cannot conclude whether the drug resulted in the patient's death. FDA is continuing to evaluate the case and will communicate any new information that results from this investigation." It also advises: "Patients with MS should not stop taking Gilenya without talking to their healthcare professional."

View the entire FDA Safety Announcement

Novartis Pharmaceuticals Corporation has informed the Multiple Sclerosis Association of America (MSAA) that a patient with multiple sclerosis (MS), who had been given one dose of Gilenya® (fingolimod), died on the following day. The individual's death occurred on November 23, 2011.
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FDA Launches Website on Safe Disposal of Used Needles

November 10, 2011

The United States Food and Drug Administration (FDA) recently announced that they have launched a new website (www.fda.gov/safesharpsdisposal) devoted to information and instruction for the safe disposal of needles and other "sharps" used by individuals at home, work, and while traveling. In addition to standard needles and syringes, other dangerous medical supplies for disposal include items such as lancets or finger-stick devices for blood testing; needle and tubing systems, plus connection needles for hemodialysis at home.
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CCSVI Update

November 10, 2011

Background Information on CCSVI and MS

Many questions still surround the possible connection between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS). CCSVI is a complex condition involving changes in blood flow from the brain back to the heart, which some researchers theorize could possibly lead to activation of the immune system, excess iron deposits, loss of myelin, and other nervous system damage.
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ECTRIMS Update 2011

Highlights from the ECTRIMS/ACTRIMS Joint Meeting - Amsterdam, October 19-22, 2011

October 19-22, 2011

This year's joint meeting of the European and Americas Committees for Treatment and Research in Multiple Sclerosis (ECTRIMS/ACTRIMS) was extremely well attended. More than 7,000 professionals attended the meeting, which featured more than 1,000 presentations - all in a whirlwind three-and-a-half days.

The following highlights review only a few of the many topics discussed at the meeting, but they reflect research of ongoing interest to the entire MS community.
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Multiple Sclerosis Association of America Honored for Publication Excellence

September 15, 2011

The Multiple Sclerosis Association of America (MSAA) is pleased to announce awards for two of its publications.
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Multiple Sclerosis Association of America and National Disability Institute Launch a Four-Part Webinar Series on Financial Wellness for the Multiple Sclerosis Community

September 14, 2011

The Multiple Sclerosis Association of America (MSAA) and National Disability Institute (NDI) are collaborating on a series of four free webinars designed to assist the MS community in learning about strategies to protect and improve their financial well-being.
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Botox® Approved for Urinary Incontinence

August 26, 2011

On August 24, 2011, Allergan, Inc. announced that the United States Food and Drug Administration (FDA) approved Botox® (onabotulinumtoxinA) injection for the treatment of urinary incontinence. Specifically, the approval is for adults who experience "detrusor over-activity" resulting from a neurological condition, such as multiple sclerosis (MS) and who either do not respond adequately or are intolerant of anticholinergic medications.
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Article Published on the Cost Effectiveness for Treating MS

August 3, 2011

Overview: Much attention has been focused on an article appearing in the July 26 issue of Neurology (vol. 77, pages 355-363) titled, "Cost-effectiveness of disease-modifying therapies for multiple sclerosis." This article presents the results of a study that looks at several factors in an effort to estimate the overall 10-year expense versus benefit associated with the long-term treatments for MS, in combination with other costs and lost wages.
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Identifying and Meeting the Needs Associated with Primary-Progressive MS

July 15, 2011

An informative article on primary-progressive multiple sclerosis (PPMS) appears in the summer 2011 issue of the International Journal of MS Care. "Meeting the Needs of People with Primary Progressive Multiple Sclerosis, Their Families, and the Health-Care Community" is part of a collaborative project between the Multiple Sclerosis Association of America (MSAA) and the National Multiple Sclerosis Society (NMSS) to recognize the needs of this specific population and to create programs to help answer these needs.
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Merck Serono No Longer Seeking Approval for Oral Cladribine

June 23, 2011

Cladribine Tablets were expected to be one of the next approved disease-modifying therapies to treat relapsing forms of multiple sclerosis (MS). Merck Serono announced on June 22, 2011 that they will no longer seek global approval for the drug.
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Multiple Sclerosis Association of America Launches Mobile Phone App for the Multiple Sclerosis Community

June 15, 2011

My MS Manager is the Multiple Sclerosis Association of America's new mobile phone application, provided free of charge to individuals with multiple sclerosis (MS) or their care partner to use on their iPhone, iPad or iPod touch. Developed in conjunction with Ringful Health, My MS Manager is available now for download in the Apple iTunes Store.
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Multiple Sclerosis Emerging Therapies Collaborative

March 23, 2011

We are proud to announce the launch of the Multiple Sclerosis Emerging Therapies Collaborative. The Collaborative - which includes the members of the MS Coalition, the American Academy of Neurology, and the VA Multiple Sclerosis Centers of Excellence East and West - has as its mission: To develop and disseminate timely, evidence-based resources to persons affected by multiple sclerosis and health care professionals, in order to  promote optimal, individualized treatment of the disease by facilitating effective communication and medical decision-making.
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Oral Cladribine Denied FDA Approval

March 2, 2011

EMD Serono, Inc., makers of Cladribine Tablets (an oral formulation of cladribine), announced today that they received a complete response letter (CRL) from the United States Food and Drug Administration (FDA). The FDA issues a CRL when it has completed the review of an application. However, in this situation, the FDA was not able to approve the application without additional information. The announcement was disappointing to members of the MS community, who were hoping to see another option added to the list of available disease-modifying therapies for the long-term treatment of MS.
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