Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com

Tuesday, August 30, 2011

Applying A Holistic Approach to Solve a Complex Disease


Multiple sclerosis (MS) is a complex disease involving immune-system attacks on the central nervous system. Research into MS involves questions that dovetail many fields of science, including immunology, neuroscience, psychology and more. Promoting and funding collaborative research is one piece of the puzzle, receiving a great deal of media attention of late. However, it is even more important to apply a multi-faceted, rather than a singular approach, if we are going to speed solutions to complex biological problems that will result in stopping MS, reversing its damage and ending the disease completely.

Finding therapeutic targets, validating qualified biomarkers for disease activities, and most importantly initiating clinical trials with effective outcome measures are all pivotal issues that require the entire community of researchers.

We believe that a holistic strategy of supporting individual researchers along with multinational academic and commercial research teams will lead us to new treatments and ultimately cures faster than selecting a singular funding model. This year the National Multiple Sclerosis Society will commit $40 million to MS research that includes discovery research to advance knowledge; translational research to move initial academic and small biotech research discoveries through “the valley of death;” and clinical trials to advance breakthrough treatments that can change the lives of people living with MS.

Realizing that translational research was one of the most vulnerable links in speeding needed treatments to people with MS, the Society established Fast Forward in 2007 as a wholly owned subsidiary to spearhead research in this area. Fast Forward is already supporting projects in six young biotech firms, two of which have leverage that funding to secure pharmaceutical company support for phase 1 clinical trials. It has also entered into a $19 million collaborative research project with a major pharmaceutical company targeting neural repair and protection research, funding four drug development projects in its first year.

Understanding the need to leverage assets and knowledge in pursuit of a common goal is leading to whole new levels of collaboration among MS researchers. The National MS Society funded a $15 million international collaboration of more than one hundred researchers in the area of nerve repair and protection. This initiative has led to a critical first clinical trial repurposing an old drug phenytoin as a possible neuroprotective agent. Founded with the help of Society funding, the International Consortium of MS Genetics is now composed of top research facilities that were once rivals in the race to identify all common gene variants that make people susceptible to MS. These are just two examples of the highly collaborative approach that embodies biomedical research today.

Another example is the Society’s Collaborative MS Research Center Awards. These five-year grants provide flexible funding to bring together scientists and physicians from diverse fields fosters cross-fertilization of ideas and techniques to propel progress. The Society has 12 active Centers focused on questions such as what causes MS damage and how to stop it (Yale, UCLA), searching for new therapies to stop MS (Dartmouth, University of Alabama), and how can the nervous system be repaired (Mayo Clinic, New York University).

This is not to say that much more needs to be done in the realm of collaboration and building stronger, effective pathways from laboratory discoveries to new treatments for people with MS. However, it is unrealistic to think that solutions to the complex problem of speeding therapies to people with MS rests with one particular organization or model. All of the MS therapies we have today resulted from contributions of academic researchers, non-profit, governmental, and private efforts. Progress comes faster through an approach where all of the necessary “players” are involved in the solution.

We’ve started bringing together what may formerly have been considered unlikely allies: researchers from academia and pharmaceutical/biotech companies, along with leadership from research-active MS societies from around the world. For example, the Society convened such a group for a think tank in Boston in December 2010, focusing on the challenges associated with progressive MS, for which there are few therapeutic options.

The discussion reinforced the timeliness of the Society’s new Strategic Response to MS which is focusing on progressive MS. Advances in pathology and imaging are yielding new information about progressive MS. We now know that progressive MS features “diffuse” or “smoldering” inflammation, rather than the acute immune attacks that are seen in relapsing MS. This inflammation appears to be driven by cells called microglia, immune cells that reside in the brain. More work is needed to understand their role, but they are already being targeted by therapies in the MS pipeline, another example of multi-faceted collaboration at work.

Also, non-conventional brain imaging techniques are offering new windows to see the nervous system injury that occurs during the course of MS. These techniques, such as DTI (diffusion tensor imaging), may be helpful for detecting whether the nervous system is being repaired or protected by experimental therapies.

Think tank participants noted recent findings suggesting that a proportion of individuals with progressive MS who shows signs of active inflammation on MRI scans are likely to respond to the disease-modifying therapies currently available for treating relapsing forms of MS. This makes it clear that we need to re-evaluate the clinical definitions of progressive types of MS and identify biological underpinnings that can improve treatment today, and also help determine whom to enroll in clinical trials.

As a follow-up to this think tank, we are now holding talks with MS Societies internationally to lay the groundwork for a consortium on progressive MS research. And in May 2011 the Society and the European Committee for Treatment and Research in Multiple Sclerosis are convening an international workshop aimed at developing more sensitive outcome measurements for MS progression. We need new ways – the quickest, most efficient ways – to determine if therapies are stopping MS symptoms from getting progressively worse.

The Society is committed to pursuing all promising avenues; connecting people, resources and ideas; speeding development of treatments; and identifying and filling gaps – until we have found a way to stop MS in its tracks, restore lost function, and ending this disease forever by identifying its cause.

Dr. Timothy Coetzee


Wednesday, August 17, 2011

Live Fully, Live Well

Managing your health and wellness is an integral part of "living well" with MS. Live Fully, Live Well is a comprehensive wellness program from the National MS Society and Can Do MS, designed for people living with MS and their support partners. Live Fully, Live Well covers topics affecting the whole family living with MS in order to strengthen relationships, increase understanding and promote improved health and quality of life for the person with MS and their support partner. All four areas of this program can be integrated together or enjoyed separately to provide you with the resources, knowledge and tools to create a personalized wellness plan.


Webinars:

Register Now!: August 25, 2011 – 7:00 – 8:00 p.m. Eastern Time – Fatigue Related Challenges – Juliann Hanson-Zlatev, OTR DPT, Can Do MS Programs Consultant


Register Now!: August 25, 2011 – 9:00 – 10:00 p.m. Eastern Time – Fatigue Related Challenges – Juliann Hanson-Zlatev, OTR DPT, Can Do MS Programs Consultant


http://www.nmss.org/

Tuesday, August 9, 2011

Fatigue: MS predictor?

 Fatigue is one of the most common symptoms of MS, and may be the most prominent symptom in a person who otherwise has minimal activity limitations. Joseph Berger, MD, and colleagues (University of Kentucky, Lexington) looked at the frequency with which fatigue “heralds” the onset of MS. Among 5305 people with MS, 29% reported fatigue in the three years before MS diagnosis. In 30% of these patients, fatigue was the only symptom preceding MS diagnosis. Fatigue preceded MS diagnosis by an average of 501 days. The authors advise that, in people experiencing unexplained fatigue, a detailed neurologic history and exam should be conducted to rule out MS.

Friday, July 15, 2011

MS and Bone Health

Researchers report that low bone mass was more prevalent among people newly diagnosed with MS, or those with clinically isolated syndrome (CIS, a first episode of MS-like symptoms), than among controls without MS. The risk of bone loss had been known for people with MS, but this study shows that it can occur very early, even before MS has been diagnosed. Stine Marit Moen, MD, and colleagues at Oslo University Hospital report their findings in Neurology (2011;77:151-157).


The team measured bone density in several areas and the total body in 99 people newly diagnosed with MS, or those with clinically isolated syndrome (CIS, a first episode of MS-like symptoms), compared to 159 controls without MS. They also administered a questionnaire concerning risk factors for osteoporosis (a disease that causes bones to thin). More than half of the people with MS or CIS had low bone mass, compared with 37.1% of controls, and low bone mass remained significantly lower in the spine and hip even after adjusting for other possible risk factors.

The authors conclude that this study “calls for an active approach to optimize bone health in early stages of MS.”

Monday, June 27, 2011

Company Decides Not to Seek Approval of Cladribine for MS

Merck Serono announced that it has decided not to pursue approval of its oral therapy Cladribine for the treatment of relapsing forms of multiple sclerosis. According to a company press release, discussions with the U.S. Food and Drug Administration made it apparent that the ongoing clinical trials of the therapy would not address the FDA’s requirements for approval. Details of these requirements have not been made public.


In March 2011, the company received a letter from the FDA indicating that its application for approval was not ready in its current form and outlining requirements for additional information. The company has stated that it plans to complete the current clinical trials and patient registry that are underway, and that results will be published.

“It’s disappointing that completion of the Cladribine trials will not lead to approval of a new therapy option for people living with MS,” says Dr. Timothy Coetzee, Chief Research Officer at the National MS Society. “However, thanks to the many people who participated in these clinical trials, results from these studies will add to the body of knowledge about MS and should help spur new leads toward stopping MS, reversing its damage and ending MS forever.”

Additional therapies, including oral therapies, are currently making their way through the development pipeline.

Sunday, June 5, 2011

Living with MS

Planning for the Future


Although MS is a progressive disease, the rate of progression differs from one person to another. The hallmark of MS is its unpredictability—which means that the doctor can’t predict with any certainty how far or fast a person’s MS is going to progress or what the outcome is likely to be. However, there are some factors that seem to suggest a better or worse prognosis. Taking these factors into account can help you and your family plan more effectively for the future.

Identifying Options

The key message to anyone living with advanced MS is that there is always more that can be done to make the situation better. If your doctor has “nothing more to offer,” it’s time to find another doctor (.pdf) - who will partner with you and other members of the health care team to manage your symptoms and maintain your quality of life. The National MS Society (1-800-344-4867) can recommend MS specialists and other resources in your area.

Learning to Redefine Control and Independence

Sometimes MS symptoms can progress to the point that they significantly interfere with daily activities. Changes like this can threaten your self-confidence and feelings of self-worth. When this happens, remember that maintaining control and independence in everyday life doesn’t necessarily mean doing everything the same way you did it before.

By allowing yourself to do things differently, you gain access to the world of assistive technology (AT)—an array of energy- and labor-saving tools and devices that allow you to stay active and productive. Rehabilitation professionals can help you navigate the world of AT and suggest ways to modify your environment at home and at work to optimize control and independence.

Dealing with Emotional Ups and Downs

Depression and other mood changes are common in MS, and grief is a normal reaction to the changes and losses that can accompany advanced MS. Getting the support you need to deal with these emotional challenges is essential to maintaining your quality of life.


Avoiding Complications

People with more advanced MS are at greater risk for certain kinds of complications. Examples include:

Osteoporosis (loss of bone density related to reduced mobility and weight-bearing exercise, as well as treatment with corticosteroids);

Pressure sores (damage to the skin caused by lack of mobility or long hours in a bed or wheelchair);

Aspiration pneumonia (a problem caused by swallowing problems that allow food particles in to the lungs);

Severe bladder or kidney infections (resulting from chronic urinary dysfunction).

To reduce your risk of complications, schedule regular check-ups with your MS doctor and report any unusual fevers or changes in your symptoms.