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Saturday, May 12, 2012

Theatre experience to Benefit MS education and research



www.southshoretheatre.com 

THIS (3) night performance is taking place in a small town
 on Long Island, in New York


We hope you join us and help us to provide education 
and fund Myelin Research


"MS Views and News" (MSV&N)  is a 501©(3) Not-For-Profit organization a
s recognized by the Internal Revenue Service






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Thursday, May 10, 2012

FDA warns MS patients about risky treatment


By Anna Yukhananov



WASHINGTON (Reuters) - U.S. drug regulators are warning people with multiple sclerosis that an experimental treatment that props open internal veins in the neck and chest can cause death or serious injury.
The Food and Drug Administration on Thursday said at least two people had died from the procedure, which uses stents or balloon angioplasties to widen veins that connect the brain and spinal cord to the heart. One person was permanently paralyzed, and others had bleeding in the brain, suffered strokes, blood clots or other side effects.
It is unknown how many people received the treatment and how many had problems, as stents and angioplasties are not approved for this use by the FDA, the agency said. Stents are steel mesh coils that can keep arteries open, while balloon angioplasties use a balloon at the tip of a catheter to open blocked blood vessels.
The FDA could not immediately identify the stent models being used in such treatments.
The FDA announcement relates to a controversy that has developed in the multiple sclerosis (MS) community about the causes of the chronic, progressive disorder of the brain and spinal cord.


READ MORE

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Randy Pausch Last Lecture: Achieving Your Childhood Dreams


This is an Inspirational message from a man that did not have MS, he had something worse and it cost him his life. I had heard this before he passed and it is a lecture like you have never heard before.

It truly is inspirational and should be listened by everybody with illness or without.
It is long, so give yourself plenty of time to listen. I had posted this a couple of years ago and wanted to again. So here it is:

September 18, 2007: Randy Pausch

"Almost all of us have childhood dreams; for example, being an astronaut, or making movies or video games for a living. Sadly, most people don’t achieve theirs, and I think that’s a shame. I had several specific childhood dreams, and I’ve actually achieved most of them.  More importantly, I have found ways, in particular the creation (with Don Marinelli), of CMU’s Entertainment Technology Center of helping many young people actually *achieve* their childhood dreams." - Randy PauschOct. 23, 1960 - July 25, 2008
Watch online or order a DVD:
Carnegie Mellon Professor Randy Pausch, who was dying of pancreatic cancer, gave his last lecture at the university Sept. 18, 2007, before a packed McConomy Auditorium. In his moving talk, "Really Achieving Your Childhood Dreams," Pausch talked about his lessons learned and gave advice to students on how to achieve their own career and personal goals.
Pausch, a professor of computer science, human computer interaction and design,  co-founded Carnegie Mellon’s Entertainment Technology Center and was the creator of the Alice interactive computing program, which is being used by students worldwide.


Carnegie Mellon Professor Randy Pausch (Oct. 23, 1960 - July 25, 2008) gave his last lecture at the university Sept. 18, 2007, before a packed McConomy Auditorium. In his moving presentation, "Really Achieving Your Childhood Dreams," Pausch talked about his lessons learned and gave advice to students on how to achieve their own career and personal goals. 

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MS Patient Warriors



Click on these links and hundreds of others to feel the empowerment that many provide:



These videos and many others are sponsored by The National MS Society


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Sask. researchers launch new MS mobility study



CTV Saskatoon
Date: Wednesday May. 9, 2012 4:15 PM CST
For people living with Multiple Sclerosis, some of the simple things many of us take for granted can be daunting. And, too often that leads to a withdrawal of activities for the person living with the disease. A group of local researchers is trying to change that by helping MS patients stay mobile one step at a time.


With every step, Rob Loewen is fighting to keep his independence. He was diagnosed with Multiple Sclerosis in 1992 but says he's been living with the symptoms much longer-symptoms that have made life a challenge.


"You plan a day and think here's a few things I want to achieve today. And at the end of the day, you say, I did nothing. That's pretty hard to live with," says Loewen.


It's Loewen's determination to stay active that has led him to be screened for a new pilot project in Saskatoon. Researchers are working with MS patients to maintain their independence by engaging in exercises that promote mobility and help them with everyday activities.


"In this particular case, regular mobility involves us doing things we take for granted, like getting across a crosswalk in time, getting up a flight of stairs without having to hold onto a handrail," says lead researcher with the project Larry Brawley.


Read more and watch a video by clicking here


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Misdiagnosis of MS is costing health system millions per year


May 9, 2012 in Neuroscience
It is relatively common for doctors to diagnose someone with multiple sclerosis when the patient doesn't have the disease — a misdiagnosis that not only causes patients potential harm but costs the U.S. health care system untold millions of dollars a year, according to a study published online today in the journal Neurology.


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Wednesday, May 9, 2012

Dealing with MS in Your Important Relationships


Important relationships take effort and energy — even without the added challenges of MS. While MS does pose some additional challenges, it can also enrich relationships and bring people closer together. The first step in figuring out how to deal with MS in your personal interactions is to recognize that the disease affects all of you — whether you have the disease or care about someone who does. The next step is to decide whom you want to tell about the MS and what you want them to understand about it. And the third step is to look for ways to make room for MS in your personal and professional relationships without giving it more time, attention, and energy than it really needs.

Deciding to Disclose…Or Not

Telling others about your MS may be the first thing you want to do — or the last. No two people feel exactly the same about disclosing their MS to others. Keeping in mind that once the information is out there, you can’t take it back, the key is figuring out when disclosure is in your best interest and when it is not. Read more about disclosing to family, friends, employers and colleagues, and someone you are dating.

Keeping Balance in One-on-One Relationships

When one person in a couple is affected by MS, the other person lives with it as well. To keep your relationship healthy and balanced, it’s important to make sure that both of you stay on the giving and receiving end of the relationship, in spite of whatever changes MS may bring. Learn how to manage MS as team and enhance your communication and intimacy.

Parenting When You Have MS

Taking Care of Yourself While Caring for Someone Else

Caring for someone with a chronic illness like MS can be deeply satisfying. Spouses and partners, family, and friends can be drawn more closely together by their shared concerns and collaborative efforts. But caregiving can also be physically and emotionally exhausting, particularly for the primary caregiver. While this is most often a partner or spouse, the primary caregiver may also be an adult child, parent, or friend. Whoever you are, remember that paying attention to your own health and well-being is essential to being able to care for someone else.
Article source: National MS Society


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Alemtuzumab (Campath) Heads for Regulatory Review in MS


Susan Jeffrey
May 7, 2012 (New Orleans, Louisiana) — Full results of a second phase 3 trial of alemtuzumab (Lemtrada, Genzyme/Sanofi) in patients with relapsing-remitting multiple sclerosis (MS) who had relapsed while receiving previous treatment show that the still-investigational treatment met both co-primary endpoints of reductions in relapse rates and sustained accumulation of disability compared with standard therapy with interferon beta-1a (Rebif, EMD Serono/Pfizer).
The findings, from the Comparison of Alemtuzumab and Rebif Efficacy in Multiple Sclerosis 2 (CARE-MS 2) trial, were presented here at the American Academy of Neurology's 64th Annual Meeting. Topline results were released in November 2011 and reported by Medscape Medical News at that time. The study was funded by Genzyme.
"This study shows superior efficacy of alemtuzumab compared to interferon beta-1a across multiple outcomes, including relapses, disability — not only reduced risk of worsening, but increased likelihood of improvement — and on MRI lesion activity and brain volume loss," said Jeffrey Cohen, director of experimental therapeutics, Cleveland Clinic Mellen Center for MS Treatment and Research, Ohio, and a member of the Steering Committee, who presented the results here.
CARE-MS 2 is the third positive study comparing alemtuzumab with an active comparator, interferon beta-1a, "which itself is effective against relapses, disability, and MRI [magnetic resonance imaging]" activity, Dr. Cohen noted. "The adverse event profile was consistent with previous studies, he added, and a program to monitor for development of thyroid issues and immune thrombocytopenia (ITP) was successful in early detection of these known complications.
Alasdair Coles, MD, senior lecturer in the Department of Clinical Neurosciences at the University of Cambridge, United Kingdom (UK), was principal investigator of the CARE-MS 1 trial that compared alemtuzumab with interferon beta-1a in treatment-naive patients. Results of that trial showed a significant reduction in relapse rates at 2 years but no significant effect on sustained accumulation of disability with alemtuzumab.
Dr. Coles told Medscape Medical News that results of these studies now form the basis for a new drug application to the US Food and Drug Administration (FDA) and to the European Medicines Agency (EMA).
Overall, alemtuzumab reduced lesions and delayed or even improved disability and in all trials was compared with active comparator; this, Dr. Coles noted, "has never been done before."
The package of alemtuzumab data is expected to be submitted to the FDA and EMA sometime in the second quarter this year, he said.


Posted by Stuart Schlossman

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