Organisations

Researchers at the universities of Edinburgh and Cambridge, and at Stanford, have reported separate studies making inroads to understanding factors that stimulate the repair of myelin, the nerve insulation that is a target of multiple sclerosis. These important laboratory discoveries, supported in part by the National MS Society, are still in early stages and need to be confirmed and expanded, but they could eventually lead to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS.

A new study of 496 people newly diagnosed with MS found that the risk of developing MS was 47% higher in African American women, compared with Caucasian American men or women. It also found that the risk was 50% lower in Hispanic/Latino Americans, and 80% lower in Asian Americans.

Bimbo Bakeries USA and Flowers Foods “Summer Bun” Program Benefits National MS Society

Among 618 people at high risk of developing MS, significantly fewer people taking oral Aubagio® (teriflunomide, Genzyme, a Sanofi company) for two years had developed clinically definite MS than those taking placebo, Genzyme announced in a press release dated April 25, 2013.

Results that led to larger-scale clinical trials of daclizumab high-yield process (DAC HYP, Biogen Idec and Abbott Pharmaceuticals) have been published. The phase II SELECT trial found that this monoclonal antibody, taken by injection under the skin every four weeks, significantly reduced the average annual relapse rate and the risk of progression in a study of over 600 people with relapsing-remitting MS over a one-year trial.

The New England Journal of Medicine has published two reports from Europe of people with psoriasis who developed progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) while taking fumarate-based treatments. It has not been proven that the treatment caused the infection. No such cases have been reported in people with MS taking the related product, Tecfidera™ (dimethyl fumarate, Biogen Idec), which was approved earlier this year to treat relapsing MS.

MS Queensland is offering a one-off and unique program.Living with MS can be challenging.  It can involve loss and grief around your health, lifestyle, relationships and employment and can create stress, evoke painful emotions and confront you with new and challenging situations.  Learning tools for managing difficult thoughts and emotions and enhancing your life can be helpful for improving your well-being. The READY program can assist you through interaction with others, skill development and access to support.Click here for more information on this FREE program being offered by MS Queensland and the University of Queensland. Both a day and evening course are being offered.

Summary: Researchers at the National Institutes of Health in Bethesda, Maryland are looking to recruit 80 people with Primary-Progressive Multiple Sclerosis to evaluate the safety and effectiveness of Idebenone, an oral experimental drug. The study is funded by the National Institute of Neurological Disorders and Stroke.

We hope you have heard the exciting news that South Australia is the second State to show their full commitment to the NDIS and sign up!  This shows that the States are still listening and action will be taken.Every Australian Counts have asked us to join their 48 hour campaign to call marginal seat MPs in each state and territory.The federal seat of Moreton, held by Graham Perrett is Queensland’s marginal seat has generated a strong reaction and 188 calls were registered yesterday – register your call today!What you can do:

1. Register your call with Graham Perrett
2. Share on your Facebook page
3. Re-Tweet if you’re on Twitter 

Please add your support by taking one of the actions above.  If you have any queries, please do not hesitate to contact MSQ Advocacy Manager Natalie Walsh 07 3840 0825 or Natalie.Walsh@msqld.org.au or visit www.everyaustraliancounts.com.au

The National Multiple Sclerosis Society has committed another $18 million to support up to 65 new MS research projects. These new awards are part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever.

The National MS Society-funded MS Outcome Assessments Consortium (MSOAC) held its first annual meeting with the U.S. Food and Drug Administration on April 1-2 to discuss steps needed to “qualify” a new measure of MS disability that will be recognized by the FDA and the European Medicines Agency to speed new therapies for MS, particularly progressive forms of the disease.

The National Multiple Sclerosis Society has committed another $18 million to support up to 65 new MS research projects. These new awards are part of a comprehensive research strategy aimed at stopping MS, restoring function that has been lost, and ending the disease forever.

The National MS Society’s thoughts and sympathies are with all of the individuals and families affected by the tragic events surrounding the Boston Marathon.

British researchers investigated why people born in May appear to have a higher risk of developing MS than those born in November. Based on tests done on umbilical cord blood from healthy babies, they suggest that those born in May tend to have higher levels of potentially harmful immune cells and lower levels of vitamin D in their blood, and that these factors may influence MS risk.

Summary: Researchers at the National Institutes of Health in Bethesda, Maryland are looking to recruit 80 people with secondary-progressive Multiple Sclerosis (secondary-progressive MS) to evaluate the safety and effectiveness of rituximab. Rituximab is an experimental drug for treating MS. In this study it will be given intravenously and directly into the cerebrospinal fluid by lumbar puncture (“spinal tap”). The study is funded by the National Institute of Neurological Disorders and Stroke.

We know some people may be shy about sharing their story of living with MS but we feel it's very important to share in each other’s experiences. With our MS Ambassador Paul Pisasale, who strongly encourages others to share their story, we are looking for you to share yours! Hopefully you have seen our requests to share how you live positively with MS with us and Mayor Pisasale. Our wonderful MS Ambassador is hosting an afternoon tea to meet the inspiring people within our community - so we hope to hear from you! To attend the afternoon tea with Mayor Pisasale, staff from MS Queensland and other people living with MS, please forward your living positively with MS story of 250 words to natalie.walsh@msqld.org.au by next Tuesday 16 April.  If you have any queries, please do not hesitate to contact Natalie via email or on 07 3840 0823.

A new study finds that an online community of people registered with PatientsLikeMe™ is in some ways comparable to a patient population seen at a large MS center, and reports that a self-rating scale used by online participants may be useful in certain MS research investigations.

The National MS Society’s Fast Forward drug development subsidiary is partnering with Accera, Inc., and the University of Miami’s Miller School of Medicine in a clinical trial to determine potential benefits of Accera’s medical food, Axona® (caprylic triglyceride), on cognitive impairment in people with MS. Funding to test this novel dietary approach to a troubling MS symptom provides University of Miami with funding over a 36-month period, and like other Fast Forward (www.fastforward.org) research partnerships, payments will be contingent upon the completion of specific milestones achieved during the trial.

Over 12,000 neurologists and other researchers convened at the American Academy of Neurology’s (AAN) annual meeting in San Diego in March to share progress in understanding and treating neurological diseases like MS. In most cases, studies presented are considered preliminary. Many of the results will be analyzed more thoroughly, and usually published in peer-reviewed science and medical journals. Confidence in a study’s findings grows when it is repeated by others, with similar results.

The National MS Society is pleased to report that Canbex Therapeutics Ltd. has completed a $3.2 million (£2.1m) fundraising round that will enable it to finish the early development of a potential therapy for the debilitating muscle spasms known as spasticity in MS.