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Friday

 
Serono Announces Initiation of the Reflex Trial to Evaluate New Formulation of Rebif(R) in Patients at Risk of Developing Multiple Sclerosis
First Trial Assessing Therapeutic Benefit of Two Different Dosage Regimens of Disease Modifying Therapy in People With First Clinical Symptoms Suggesting Multiple Sclerosis

GENEVA, Switzerland -- Serono (virt-x: SEO and NYSE: SRA) announced today the initiation of a Phase III clinical trial to evaluate the effect of two dosage regimens of the new formulation of Rebif(R) (interferon beta-1a 44 mcg, three times a week or once a week) on the time to conversion to multiple sclerosis (MS) in people with first clinical symptoms suggestive of the disease. The trial, called the REFLEX study (REbif FLEXible dosing in early MS), will involve 480 patients considered at risk of developing MS because of a recently experienced isolated demyelinating event and of typical magnetic resonance imaging (MRI) brain scans.


"It has been demonstrated that early treatment with interferon-beta can reduce the risk of developing multiple sclerosis. Optimizing the impact of such treatment on development of irreversible neurological damage and ascertainment of long term outcomes is still subject of active experimental and clinical research", said Professor Ludwig Kappos, from the Department of Neurology, University Hospital Basel, Switzerland, and a member of the Steering Committee of the REFLEX study. "The REFLEX study will determine the respective therapeutic benefit of two different dosage regimens of the new formulation of Rebif(R) for people at risk of developing multiple sclerosis."


The REFLEX study is a randomized, double-blind, placebo-controlled, multicenter trial. Study participants will receive either the new formulation of Rebif(R) 44 mcg three times a week (160 patients), or the new formulation of Rebif(R) 44 mcg once a week (160 patients), or placebo (160 patients) as a subcutaneous injection for a period of 24 months, unless they suffer from a second attack leading to a diagnosis of clinically definite MS. In this case, patients will be offered open label treatment with the new formulation of Rebif(R) 44 mcg three times a week. The primary endpoint of the study is time to conversion to MS, according to the McDonald criteria. Other endpoints will include assessments of MRI brain scans, clinical relapses and disability progression.


The REFLEX study will also evaluate the effect of the new formulation of Rebif(R) on cognitive function as measured by the Paced Auditory Serial Addition Test (PASAT)[1]. Cognitive dysfunction can occur early in MS and impact memory, ability to process information and learning. A sub-study will assess retinal nerve fiber thickness (a marker of axonal loss) by means of optical coherence tomography (OCT). This sub-study will be conducted in selected centers, equipped with this leading edge technology. In addition, the REFLEX study will aim at identifying genetic/genomic profiles associated with disease and treatment outcomes.

The new formulation of Rebif(R) has been developed by an innovative approach, using state-of-the-art technologies. It is under regulatory review by the European Medicines Agency, the US Food and Drug Administration and other healthcare authorities, and is not currently approved.

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Should Job Hunters Reveal Chronic Illness? The Pros and Cons: [The Wall Street Journal]
"....To tell or not to tell is a complex question that job hunters with a chronic illness must confront. Thanks to improved treatments, many of the 125 million Americans with a chronic condition hold jobs or seek work. Federal disability law bars most employers from asking about an applicant's ailments. However, the U.S. Supreme Court has ruled that a company may refuse to hire a prospect whose medical condition might be worsened by a particular job...MORE

Graphic artist Lisa Hall hid her stiff and swollen fingers during job interviews last spring with Kaestle Boos Associates, an architectural firm in New Britain, Conn.

The firm hired Ms. Hall without knowing that she has had scleroderma since 2000. The chronic connective-tissue disease typically kills patients within 10 years. If she had divulged her disorder before she joined, "the safer route would have been to hire someone else," says Laura Morris, her supervisor. But, she adds, "I'm glad I didn't."

To tell or not to tell is a complex question that job hunters with a chronic illness must confront. Thanks to improved treatments, many of the 125 million Americans with a chronic condition hold jobs or seek work. Federal disability law bars most employers from asking about an applicant's ailments. However, the U.S. Supreme Court has ruled that a company may refuse to hire a prospect whose medical condition might be worsened by a particular job.

Individuals with a potentially debilitating though unobvious chronic illness often keep silent about their condition during their job search. "If you disclose beforehand, employers can find a million other reasons not to hire you," warns Darren Flomberg, a career coach and rehabilitation counselor for the Five O'Clock Club, a career-counseling network in New York.

Ms. Hall agrees that favoritism toward healthy candidates "is a fact of life." So in applying to Kaestle Boos, the 34-year-old artist decided "to play off my ability, my experience and my background."

But covering up her disease deeply disturbed Ms. Hall. "I didn't want to lie," she explains. A week after she started work, the probationary staffer felt comfortable enough to tell Ms. Morris and other colleagues about her scleroderma. "I said, 'I want no special treatment. I may have a bad day once in a while.' " She promised to make up work missed due to her medical appointments.

Some bosses would feel betrayed by a new hire's deceptive behavior. Ms. Morris reacted differently. "My concern was, 'Can she do the job?' " the marketing manager recalls. Her qualms soon dissipated. Ms. Hall demonstrated she's very talented and thrives under pressure. "It's nice and calming when things start to go crazy and Lisa says, 'We'll figure it out,' " Ms. Morris says.

Chronic-illness coach Rosalind Joffe makes an equally convincing case for pre-employment disclosure. Ms. Joffe, diagnosed with multiple sclerosis 25 years ago, has divulged her disease in advance of landing spots as a teacher and a mediator. "More people should consider [disclosure] as an option because there are real upsides," the Newton, Mass., coach contends.

Ms. Joffe urges clients to bring up their chronic condition while negotiating an offer. Then, both sides "know what's on the table. You're more likely to walk into a situation that's more flexible," she says. You don't have to provide many details about your symptoms, she continues. "Say, 'I have a chronic illness and this is how it affects me.' "

Bring up your chronic illness during the recruitment process "if there's more than a 10% chance of there being a problem during your employment," concurs New York executive coach Dee Soder. Explain what you've done to reduce the chances of a flare-up, she suggests. Hiring managers appreciate "that you're taking the unpredictability out of it."

Heeding such advice, 22-year-old Amanda Daly revealed her mild multiple sclerosis after a Massachusetts museum offered her an historical interpreter's post last spring. The museum wanted the fresh college graduate to wear a wool costume and mainly work outside. She knew she might tire easily doing so on hot days. Officials agreed that she could work largely indoors or take a different outdoor assignment that didn't require a costume.

The Boston-area resident, who had begun job hunting in January, spurned the offer because she disliked the prospect of an 80-mile roundtrip commute. She later cited her illness in cover letters to employers that serve the disabled or promote their interest in diverse candidates. That gambit hasn't paid off yet.

The accomplished young singer is now debating whether she should disclose her disease during a second round of job interviews with a Boston music organization this month. "You don't want to be sneaky," she says. But "everybody has something that employers will find out with time. And I don't have a visible disability."

A New Jersey newspaper reporter informed management about her ulcerative colitis before she accepted her current spot in September 2002. Her upfront frankness paid off when she needed a weeklong hospital treatment last month for the chronic colon inflammation. Higher-ups "were all incredibly supportive, [with] no questions asked," remembers the 28-year-old journalist. "If employers feel like they've been duped, they have much less reason to be supportive about your missing work."

In the final analysis, chronically ill applicants must carefully weigh the pluses and minuses of exposing their malady sooner rather than later. As Ms. Joffe notes: "There's no right or wrong."

E-mail comments to me at joann.lublin@wsj.com. To see other recent Managing Your Career columns, please go to CareerJournal.com.

URL for this article:

http://online.wsj.com/article/0,,SB10739498076300700,00.html

 
"Benefits and Risks of MS Therapy, Treatment Optimization, and Future Directions: An Expert Interview With Bruce Cohen, MD"
Editor's Note:

It is very important to consider the benefits and risks of therapy before selecting treatment for multiple sclerosis (MS) patients. Marni Kelman, MSc, Medscape Neurology & Neurosurgery Editorial Director, recently discussed this topic, ways to optimize treatment, and unmet needs in MS with Bruce Cohen, MD, Professor, Davee Department of Neurology, Feinberg School of Medicine, Northwestern University, Chicago, Illinois; Director, MS Clinic, Department of Neurology, Northwestern Medical Faculty Foundation, Chicago, Illinois.

Medscape: Can you please describe your thoughts on the balance between the benefits and risks of currently approved treatments?

Dr. Cohen: We have undergone quite a revolution in the care of MS patients in the last 15 years. I'm old enough to remember when we saw MS patients and didn't have much to offer them that could modify the course of the disease, and now we've reached a point where we're choosing among a variety of different treatments. What we're now looking for is a treatment which is effective for a particular patient, which is tolerable, and which presents the least risk to that patient of adverse effects, commensurate with what their potential benefit from it might be. And that may differ for different individuals. There are certain comorbidities which affect tolerability of treatment. There are options regarding the mechanisms of specific therapies, and the decision making is somewhat complicated by the fact that there are individual factors and probably disease factors, which influence a person's response to a treatment, that we don't have any way of measuring right now short of following the patient and seeing how they respond.

Medscape: Are there any particular concerns with therapies that have been approved recently compared to those that have been on the market for a number of years?

Dr. Cohen: We are seeing the introduction of a variety of therapies now, some that have just come on to the general market and some that are in the later stages of clinical trials, which may come to market in the next few years. For each of them, we have to weigh their potential for benefit against the possibility that there may be side effects that we don't fully understand yet. So there are advantages to using therapies that have been on the market for a long time and that we know more about. On the other hand, there may be circumstances in which these newer therapies offer advantages compared to the ones that are currently available. It's important to look at the specific aspects of a particular patient's disease activity. All of these therapies affect the immune system in some manner, so the frequency and the severity of the inflammatory responses are what's most important in evaluating their potential benefit. Then it is essential to monitor the patient to see how they respond to the treatment which is initiated, in order to make the best decisions about what may be the most appropriate therapy for that individual.

Medscape: How do these risks and benefits affect your decision about when you're going to start treatment and o what treatment you are going to select for a particular patient?


Dr. Cohen: The initial decision about treatment requires a calculation by both the patient and the physician. The first thing you have to do is to look at that individual and make a judgment about their particular disease activity. You also need to define those other conditions that may exist for that patient, which may affect their tolerance to a particular therapy, including their tolerance for side effects, and their comfort level with the possibility that there may be late side effects or adverse effects that aren't yet fully understood. Based on that evaluation, one can make a judgment about which therapy would seem most appropriate for that individual. But that's only the beginning. Once you start that individual on a therapy, you have to monitor their response to it. You have to continue to reinforce their use of it, and you need to be ready to change the therapy if it proves not to be the best one for that individual.

Medscape: What types of strategies do you employ to help prevent and manage these side effects that patients experience?

Dr. Cohen: In looking at how a person responds to a therapy, the key issue really is the individual's willingness to take the therapy, because, as far as I know, none of these therapies work if you don't take them. So, in looking at that, one has to make a judgment about an individual's willingness to, for example, take injections. They have to understand what they should expect from the therapy. Unreasonable expectations often exist even when a patient tells you they understand. So, you have to reinforce expectations so that people understand what they can expect reasonably from a therapy and what they're looking for. For injectable therapies, there are a variety of treatments that can be used to mitigate some of the side effects from the injections, such as icing the skin or using anesthetic creams, or applying things like witch hazel to the skin for painful injections. It's important to warm the therapies if they're stored in a refrigerator before they're injected. It's important for individuals to premedicate for the interferon therapies with acetaminophen or aspirin or one of the ibuprofen or nonsteroidal anti-inflammatory agents. It's important that they take that agent probably 30-60 minutes before they take the injection. We usually recommend that people take the injections in the evening, which mitigates some of the side effects when they sleep. They need to understand that most of these side effects are temporary and tend to decrease over time, and that they develop a tolerance for them.

Medscape: An important topic in terms of side effects that has recently emerged is the problem of PML [progressive multifocal leukoencephalopathy]. Do you have any thoughts on this side effect and its impact?


Dr. Cohen: The problem of PML has come up with one of the newer therapies, natalizumab. The problem has come up because in 3 individuals who were participating in clinical trials with this agent, the disease, which is ordinarily quite rare in people who are not severely immunosuppressed, such as AIDS patients, occurred. In two of the cases, individuals who had multiple sclerosis were also receiving an interferon. In the third case, an individual with Crohn's disease was not receiving any therapy other than natalizumab at the time, but had previously received an immunosuppressive therapy. PML has not been described previously in individuals who have been on interferon therapy, nor has it been recognized previously in MS patients on some of the immunosuppressive therapies that have been used. So, this suggests that there is something about this particular drug or the combination of this drug with other drugs, which puts some people at risk. Whether that risk exists for individuals who take natalizumab alone, however, is totally unknown at the present time. It will probably take 2-3 years to find out. As a result, the FDA [US Food and Drug Administration] has currently suggested that this is a drug that should most often be used in individuals who either have failed to respond adequately to one of the interferons or glatiramer or that it be used in individuals who don't tolerate those drugs; in other words, it should be considered primarily as a second-line agent. That has been the way we have chosen to use natalizumab right now.

Medscape: What do you think are the most important unmet needs in the management of MS, and how can they be addressed in the future?


Dr. Cohen: So now you've asked me about my wish list. I think perhaps the most important thing that we need is a better way of measuring how somebody is responding to a particular therapy, and perhaps also ways of distinguishing between different disease patterns in MS. We talk about biomarkers, and ideally these would be some sort of test that one could measure, for example, from the blood, which would be more sensitive to timely changes in a person's condition and response to a therapy. Newer MRI techniques, which are more sensitive to damage in the central nervous system and which can quantify anatomic and physiologic tissue changes, may be helpful in the future; however, they need validation against clinical disease endpoints, and further development to make them reliable and feasible for routine clinical use. These measures might also discriminate between different pathologic patterns and indicate for us which therapies might be more appropriate for a given individual.

Second, we need a pill. We need therapies which are more tolerable and cheaper and easier to take. I'm very hopeful that some of the current oral therapies that are entering late stages of investigation will find their way to market and will provide new treatment options in a few years. These sorts of therapies should be cheaper, and they should be easier for people to use, and hopefully they will prove to be effective.

Third, we need better symptomatic therapies, particularly for spasticity, for which current therapies are limited by sedation and other side effects; for cognitive impairments, for which our therapies are, at best, modest; and for fatigue, a problem for virtually all MS patients but one which current therapies do not adequately address.

Additionally, we need therapies that address other aspects of the MS disease process. We have a number of therapies now which are directed at the inflammatory response. We also need therapies that protect the nerve cells and the axons from damage, because it's this damage which is believed to be the substrate for ultimate disability. Any treatments which we might be able to devise and use in combination with the inflammatory therapies that would be neuroprotective would be helpful not only for MS but for a variety of other neurodegenerative diseases.

Finally, we have great hopes now for reparative therapies, such as therapies using stem cells or other technologies, which would allow us to repair long-standing damage and restore function. This is probably a little farther away, but obviously an area of great interest right now, both to physicians and to patients, and an area of very intensive research investigation.

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ONE OF OUR 2000 MySpace FRIENDS

"I wonder how I am going to be brave enough to self administer these injections?...Read 39 Support Comments
MARY'S FEELINGS ARE VERY COMMON...ONE OF THE MAIN REASONS PATIENTS QUIT ALL MS THERAPIES IS FEAR OF THE SHOTS!

PLEASE HELP OUR ANGEL OF SUPPORT MARY!

DO YOU HAVE SUGGESTIONS FOR MARY AND ALL OF OUR OTHER FRIENDS WHO ARE HAVING PROBLEMS WITH SHOTS?

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Dear Stan,

I am starting Copaxone injections on Thuesday.


I am having a hard time mentally preparing myself for those shots. I have never had to give myself injections before.

I wonder how I am going to be brave enough to self administer these injections.


Is there any advice you all could give me as to how you found the courage to do this?

What to watch out for? And I also would love any input anyone has into their experiences with Copaxone?

I have done my best to prepare for this by constantly reading your blog and anything else I ran across. Thank you so much Stan for creating this wonderful source of information for people with MS like me!! When I discovered your blog I did not know much about MS. I could not have passed all of those tests without you and all the valuable advice your commenters left on your blog. If you could please post this too I would be so grateful.

I want to thank each one of you for all the comments you have left on Stans blog they helped me immensely! Because of everything Stan posted and all your comments I learned about MS.

I learned that you all are an incredible group of people! I learned that vitamins were vital and so much more. And from all your advice I learned to take better care of myself. I took those vitamins, ate healthier, and regained all the feeling back throughout my body.

My hands and legs still hurt and I still get that unusual tiredness but from all of you I learned I am ok not to worry this is normal. *Smile*

I came to love each one of you!

May you all have a very safe and blessed Christmas!!

Thank you in advance!
Big warm hugs,
Mary


GIVE YOUR OPINION: SCROLL DOWN AN INCH...
READ 37 SUPPORT COMMENTS...
CLICK HERE

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ONE OF OUR 2000 MySpace FRIENDS

SUPPORT ALERT FOR GENEISIS & HER "MS NIGHTS: I can't sleep all night long no matter how much I try"...CLICK TO READ 19 COMMENTS OF SUPPORT
PLEASE GIVE OUR SUPPORT ANGEL A HUG AND SHARE YOUR OWN STORY OF MS NIGHTS...

...so some of our 2100 Friends will see that they are not alone - stan


PS...WHAT DO U DO TO HELP YOUR "SLEEPLESS NIGHTS"?
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These nights are what I call MS Nights,

I can't sleep all night long no matter how much I try.

My body feels like it needs to rest and recharge but something inside me just will not allow it.

I am not in pain anywhere, just hopeful that I will get to sleep soon.


I have had these nights before, they aren't anything new to me. Its nearly four am and I still cannot sleep, I have been trying since 11pm to get to sleep.

It's nights like these that make me just despise this disease however these nights also make me hopeful for a cure to come.

I have no doubts that a cure will come, maybe not in my lifetime but it will come.


Blessings,

Genesis

 

ONE OF OUR 2000 MySpace FRIENDS

SUPPORT ALERT: "SINCE MY DX MY SEX LIFE HAS BEEN SHIT" - DARTH WOKIE
PLEASE OFFER ANY SUGGESTIONS YOU HAVE  FROM YOUR OWN EXPERIENCES..

PLEASE DO IT ON THIS BLOG SO OTHERS CAN BENEFIT FROM YOUR ADVICE!
 - stan

ps...embarrassed to make a post with a suggestion...simply write me & i'll post it with no name or photo...IT WILL HELP OUR FRIENDS!

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hey stan i need your help this is a bit of a embarressing thing ...

well anyway since my DX my sex life has been well shite ...cus either im way to sensitive or i cant feel anything or it hurts like way to much .. i was wondering if you knew anything bout this.


its not that i cant get in the mood or anything .. its just that its soo frigging painful and stuff, i havent sed anything to the docs cus my moms always wit me and im not really good wit talkin to ppl face to face lol
love
xoxo
chloe


(I asked Darth Wokie if she wanted me to include her name & photo on this post...this was her comment to me - stan)

yeah thats fine u can post it im not ahamed of his i just wanna enjoy sex for the first time in the last 18 months rofl

CLICK ON THE LINK ABOVE  TO READ COMMENTS OF SUPPORT FOR Darth Wokie

ONE OF OUR 2000 MySpace FRIENDS


 

ONE OF OUR 2000 MySpace FRIENDS

KENDRA NEEDS HUGS AND A NEW DOC!!!
UPDATE-------------------------------------

I JUST RECEIVED THIS NOTE FROM KENDRA:


Thanks Stan, for your help as always!  I will look into finding a large neuro center....I live kind of in the sticks so have to travel a little to see a doc.  I may just have to drive a little further to find one I like.  Maybe make the trip to Tampa.  I know you're right about not giving up on neuros...my experience with them has just always been negative.  But there must be one out there I can gel with.  The search is just frustrating.
I'm not currently on a MS med.  I did Rebif for about 4 months and it was too horrible for me.  I'm so glad it works for some people, I just can't live my life feeling sick all the time.  I've been considering Copaxone but haven't had the insurance for so long.  I asked this doctor about it and he was very nonchalant...you know, "well, if you want to try it let me know".  Made me dislike him even more.  At least the other neuros I've seen have been passionate about treatment!  At any rate, it's nice to "be around" people that can relate to what I'm going through.  Thanks again for all you do!  You're a great friend  =)
-------------------------------------------------------
I SUGGESTED A NEW MS SPECIALIST TO KENDRA...DO YOU HAVE A SUGGESTION? DO U GO TO ONE IN FLORIDA...THAT U LOVE? - stan

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Hi Stan,
I just checked my other email address and got your Christmas card and wanted to thank you. It's cheered me up a little bit...

I have had a not so great day. I had my first appointment with a neurologist in over a year and a half, since we moved around a year ago and have been waiting for my husband's work benefits to kick in. It was a very disappointing visit. I felt like he was very dismissive with me; you know, I do very well on the basic neurological tests...close your eyes, point to your nose, hold your arms out, etc...my reflexes are good; I guess my eyes check out ok, although, I'm always a little surprised by that since I've had increasing blurriness and whatever it's called when they moved side to side real fast for no reason. I asked him my status and explained my symptoms and he let me know that I do not fall under RRMS because I've never really gone into remission. My symptoms are pretty constant. Well, what does that leave? He wouldn't say out loud that I was SPMS which is very frustrating...I really just want doctors to be straight with me. I requested another MRI since I haven't had one in over 2 years and he just blew me off and said the insurance company probably wouldn't pay for it since I haven't had any major attack. And oh, there's no reason to come back in for another six months since I don't have any "deficit" is the word he used.

Now I know I'm very fortunate so far in that I'm mobile and self sufficient, but since when is constant fatigue, bad balance, always present altered feeling in one leg, dizziness, blurred vision, etc, etc, etc. equivalent to "no deficit".

I'm so angry I screamed in the car all the way home. And been crying all day.

I'm only hoping my visit to the gynocologist will go better tomorrow. I'm so sick of everyone in my life blowing me off because they can't see my so-called "invisible" symptoms. Including doctors. I'm so swearing off neurologists. Screw them. Stan, I miss my doctor in Tennessee so much! I'm scared I won't be able to replace her. I'm so sorry to bother you with this, but I think I really needed to get it out.

I was going to write a blog, but I'm kind of feeling lately like people in my life don't really want to hear about all this. Not that they don't care, just they don't know what to say or anything.

 I hope you've been doing ok with the empty nest thing and that your son is well.

TTYS,
Kendra

KENDRA IS ONE OF OUR 2000 MySpace FRIENDS.
CLICK ON CLICK ON THE LINK ABOVE TO READ 42 COMMENTS OF SUPPORT


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ONE OF OUR 2000 MySpace FRIENDS

CLICK TO READ 34 COMMENTS OF SUPPORT ALERT FOR NANCY WHO HAS HAD A "WEIGHT GAIN OF 50 POUNDS" = stan
PLEASE ADD YOUR COMMENT OF SUPPORT FOR NANCY...

PLUS...IF YOU HAVE HAD WEIGHT GAIN &/or "SEVERE COCCYX PAIN"...TELL HER OF YOUR PERSONAL EXPERIENCES - stan



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 Hi, Stan
I was diagnosed with MS earlier this year at age 39. I've been having symptoms on and off since my teens which were usually attributed to a slipped disc in my neck. But, I also have episodes of severe coccyx pain that my doctor says is not related to the MS. I think he is wrong because it always happens right before a 'flare up' and then it goes away for a few weeks or months. I was hoping you could ask your friends to see if this is something they have in common.

Also, what about weight gain? I've gained 50 lbs in less than a year. Probably because I've spent so much time in bed...but still, that seems to be excessive for me since i've never had that problem before. It can't be a side effect from meds because I'm not taking any meds yet. My doctor wanted to wait for another major flare up which I seem to have been going through for the past 3 weeks. My next brain MRI will be next week and I hope to finally start meds after that.

Anyway, thank you for taking the time to share information on MS. This has really been a great help for me to read what other people are going through and see that life does go on... :)

Nancy

Thursday

 
For kids, MS itself just half the battle: Correctly diagnosing disease can be tricky; sometimes, so is talking about it! | Chicago Tribune
By Judith Graham
Tribune staff reporter
Published December 28, 2006

Tiffany Jones stood before her classmates at Hillcrest High School, trembling. It was time to present her anatomy class project--and reveal a secret she'd closely guarded.

Eyes downcast, Jones described a high school senior with multiple sclerosis, a degenerative illness of the nervous system. "Numbness, tingling, poor balance, muscle weakness, bladder [problems] and forgetfulness" are among the girl's symptoms, she explained.

The 18-year-old "tries to stay positive because she has a lot of support from her family, friends and her church," Jones continued, her voice cracking. "[But] it makes her feel less of a person at times because she is living with a disease that she can't do anything about. Her name is--Tiffany Jones."

Jones paused, trying to keep her composure, as her classmates stared, some with their mouths open.

"There have been many nights that I sit up and cry just thinking about how I will live the rest of my life with this disease. I often wonder if I will be able to do the things I want in life," she continued, as the paper in her hand fluttered. "Will people think of me as a different person when they find out I have a disease or will they think of me as just being Tiffany?"

Until recently, multiple sclerosis was considered an adult illness. The medical community largely overlooked children with MS symptoms--a type of neglect unfortunately common for chronically ill children, especially those with relatively uncommon nervous system disorders, medical experts say.

But now, youngsters with MS are getting more attention as researchers search for the origins of this incurable illness, which strips nerves of their protective myelin coating and interferes with the brain's functioning, leading to the kind of problems Jones described to her classmates.



Diagnosis usually after puberty

As many as 10,000 U.S. children and teenagers--some as young as 5--have MS; another 10,000 to 15,000 have symptoms but can't be diagnosed with certainty, according to the National Multiple Sclerosis Society.

The youngest known patient with MS was 18 months old, but more commonly the disease surfaces after puberty when teenagers' bodies are changing and flooded by hormones.

Resources are scarce for these patients. With few exceptions, support groups are designed for adult MS patients. There are no medical guidelines for treating MS in children. None of the drugs used for adult MS patients has been tested extensively in school-age youngsters or teens. And it's still common for pediatricians and family doctors to assume children can't get the disease, making misdiagnoses routine.

"Neurologists know about this disease, but they're reluctant to treat children and adolescents because there are so many issues--dealing with school, with development, with behavioral issues, with the family," said Dr. Lauren Krupp, a neurologist who directs the National Pediatric MS Center at Stony Brook University Hospital in New York.

"And pediatricians know how to treat kids, but they don't understand MS or know anything about the medications."

Adding to the confusion, MS in youngsters is quite different than the disease in adults--so much so that researchers aren't certain if it's the same illness or a closely related variant.

For instance, in adults MS overwhelmingly afflicts white people, but at younger ages far more African-Americans, Asians and Hispanics are affected, according to Dr. John Richert, executive vice president of research and clinical programs at the National MS Society.

The disease also appears to progress more slowly in children, and "when we look at imaging studies of the brain, they look different in children with MS than adults," said Dr. Nancy Kuntz, a pediatric MS specialist at the Mayo Clinic in Rochester, Minn.

That may be because young people's brains are still developing, suggested Dr. Tanuja Chitnis, director of a pediatric MS center at Boston's Massachusetts General Hospital, noting that young people with MS appear to have more problems with processing language and visual/spatial perception.

Perhaps most puzzling is the relationship between MS and a separate condition known as acute disseminated encephalomyelitis, which afflicts children more often than it does adults. ADEM, as it's known, is an abnormal immune system response to a viral illness that typically lasts a few days or weeks but sometimes can recur.

"Often, it's hard to sort through what constitutes a bout of ADEM and what is an initial episode of multiple sclerosis in a child," said Dr. Joy Derwenskus, an assistant professor of neurology at Northwestern University's Feinberg School of Medicine. The distinction is important because treatments for the two conditions differ.

Understanding the link between viruses and MS is one of the main goals of a new network of six pediatric MS centers established by the National MS Society late last year.MORE Chicago Tribune

Wednesday

 
Aerobic Exercise May Help With Autoimmune Disease-Related Fatigue

Increasing amounts of low impact aerobic exercise may help individuals with the fatigue that often accompanies chronic autoimmune conditions, such as multiple sclerosis, systemic lupus erythematosus and rheumatoid arthritis, according to a recent report.

"Our review showed that aerobic exercise can significantly reduce fatigue and that some behavioral, nutritional, and physiological interventions are also very effective,"
lead author Dr. Jane Neill, from Flinders University in Adelaide, said in a statement.

The findings are based on a review of data from 36 reports identified through a literature search of articles relating to chronic autoimmune diseases and fatigue. All told, 38 anti-fatigue interventions were tested on over 1700 patients.

Twenty-four of the interventions yielded significant reductions in fatigue or improved vitality levels, the authors note in the December issue of the Journal of Advanced Nursing.

The studies showed that 30 to 60 minutes of aerobic exercise, thrice weekly, for an average of 12 weeks led to meaningful reductions in fatigue.

Supervised exercise classes as well as home-based programs, involving bicycling, walking, and other activities, were effective in cutting fatigue, the report indicates.

According to Dr. Neill, "health education and cognitive behavioral therapy" were also useful in reducing fatigue.

Electromagnetic field devices may offer some benefit, but further confirmatory research is needed, the researchers note. A similar conclusion was reached regarding the use of cooling techniques and nutritional supplements.

"Healthcare professionals should ask people about their fatigue and assess each person's symptoms," Dr. Neill noted. "People with fatigue should be encouraged to design their own exercise routines based on awareness of their individual fatigue patterns and daily priorities, while group activities must take account of the changing nature of fatigue over time."


J Adv Nurs 2006

 
'Makeover' Momentum: Carol Crawford Smith's Story Has Inspired Others and Helped Raise Money for Multiple Sclerosis.
By Tonia Moxley, The Roanoke Times, Va.

Dec. 27--A Blacksburg family's appearance on the ABC television show "Extreme Makeover: Home Edition" in February has helped raise awareness and funds for sufferers of multiple sclerosis across the country.

Local chapters of the National Multiple Sclerosis Society held viewing parties in several states to raise money for MS research when the two-hour special featuring Carol Crawford Smith aired, said Fay Painter, president of the Blue Ridge chapter of the MS society.

"People see an uplifting face in Carol and want to learn about her story," Painter said. The show has "helped our whole organization gain momentum."

Crawford Smith declined to be interviewed for this story, except to say that she is doing well. But according to others, she and her sons Hunter and Garland have been busy.

In April, Crawford Smith spoke at a luncheon in Roanoke that raised $33,000 for research into treatments for MS, a degenerative disease that robs sufferers of control over their bodies.

She has also appeared on "The Montel Williams Show" and at the MS Society's national conference in Florida, Painter said.

Crawford Smith's elder son, Hunter, was honored with the society's Young Minds Award. It's meant to encourage kids to become scientists who might one day help find a cure for MS.

The family joined Hunter on a trip to Johns Hopkins University medical school in Baltimore to spend a day with Peter Calabresi.

Calabresi is the lead researcher on a grant looking at therapies that may help restore nerve function to MS sufferers, Painter said.

Crawford Smith, who performed with the renowned Dance Theatre of Harlem before coming to Blacksburg and opening her own dance studio, was stricken with MS six years ago.

She has since lost some of her ability to walk and teaches dance classes from a chair with help from assistants.

Friends helped her apply to the show after seeing her struggle to function in her 1950s-era home on Ardmore Street. The show's producers chose the family from thousands of other applicants.

"Extreme Makeover: Home Edition," now in its fourth season, features a cast of star designers who host the episodes.

In television land, the designers, assisted by volunteers, build specially designed homes for people in need.

But in reality, hundreds of local businesses donate the bulk of labor and materials to the projects. Under tax rules, the donations are not considered charitable and therefore aren't deductible.

Virginia Tech architecture and industrial safety professors and their students also donated hundreds of work hours to the project.

Robert Dunay and Joe Wheeler, professors and licensed architects, headed the team that designed Crawford Smith's new handicapped-accessible house.

They and their students designed and built a meditation and exercise studio for Crawford Smith using solar technologies developed at the university.

Those technologies have been featured in Dwell magazine and PBS' "This Old House" show, according to Tech spokeswoman Heather Riley Chadwick.

Building Specialists of Roanoke volunteered as the general contractor to oversee the demolition and construction of the house in fewer than seven days in subfreezing temperatures coupled with sleet and snow.

Local companies worked 24 hours a day without pay to finish the project on time. And other businesses have donated ongoing services such as housecleaning and lawn care to Crawford Smith.

Building Specialists President Bob Fetzer estimated that the total of the local donations exceeds $1 million.

While it didn't create many new customers for his company, Fetzer said the project paid off in the friendships he built with the family and other companies.

Since last year, Building Specialists has raised about $11,000 to help Crawford Smith with mortgage payments on the old home loan she must continue to pay and to offset higher property taxes on the new house, Fetzer said.

According to Montgomery County records, the old home was assessed at $121,000, which under current local tax rates would cost the family about $1,100 per year.

The new home, however, was recently assessed at $407,000, which could push the family's annual tax bill to about $3,600.

 
T For Two: Scientists Show How Immune System Chooses Best Way To Fight Infection
A new study has suggested a novel way of combating diseases related to the immune system, including cancer and autoimmune diseases such as type I diabetes and arthritis. The study, funded by the Wellcome Trust, appears online in the journal Nature.T cells are produced by the body to fight infection.

Scientists previously identified two types of T cell, both produced in the thymus: "effector T cells", which attack infected cells, and "regulatory T cells", which suppress the immune system, protecting the body from inflammatory damage during infection. Regulatory T cells, if given to individuals receiving transplants, may help suppress the rejection response.

Now, a team of researchers has discovered a novel mechanism determining whether a maturing T cell is likely to emerge from the thymus as an effector cell or a regulatory cell. The research suggests that new treatments could be developed to deliberately affect the type of T cells produced, allowing scientists to tackle a number of diseases which are influenced by these different types of T cells.

"Our team has shown that a process known as 'trans-conditioning', which we knew to be involved in T cell development, actually has a profound influence on whether a T cell becomes an effector or a regulatory cell," explains Professor Adrian Hayday of King's College London. "This may be clinically significant; if we can find a way to influence this process, it may be possible to make the body produce effector T cells in a cancer patient or regulatory T cells in someone suffering from autoimmune disease, both of which are caused by the immune system malfunctioning."

Professor Hayday and his team believe that the findings may also answer one of medical research's mysteries: why autoimmune diseases in women commonly go into remission in pregnancy.

"We believe that trans-conditioning is less active during pregnancy," says Professor Hayday. "This means that most T cells emerging at that time will be regulatory. Regulatory T cells prevent an over-active immune system from causing inflammatory damage to the body. This may be one of the key steps in preventing the mother from rejecting the foetus growing inside her."

The research was carried out at the King's College London School of Medicine at Guy's Hospital and was co-lead by Dr Daniel Pennington, a Wellcome Trust VIP awardee and now at Queen Mary, University of London. Collaborating researchers were based at Faculdade de Medicina de Lisboa, Lisbon; University College, London; Yale University School of Medicine; Institute for Animal Health; and Imperial College London.

 
TYSABRI: HARVARD MED SCHOOL'S TOP 10 STORIES OF 2006


7. Drug approvals — with strings attached. Hopes were high when natalizumab (Tysabri) was introduced in 2004. The new monoclonal antibody treatment promised to treat multiple sclerosis by binding to immune system cells that attack the myelin covering of nerves in the brain and spinal cord. The crash landing came a few months later: Tysabri was withdrawn after being linked to three cases of an unusual brain infection (progressive multifocal leukoencephalopathy).

In 2006, the FDA allowed the drug back on the market, with restrictions. Doctors prescribing it must register with the manufacturer. The monthly infusions can only be given at authorized sites. Patients must also be registered in a special Tysabri program. Alosetron (Lotronex), the irritable bowel syndrome drug, followed a similar path earlier: The big splash, the hasty retreat off the market, a return with restrictions.

Drug approvals have generally been binary, yea or nay, with doctors free to prescribe any approved drug. With Tysabri and Lotronex, we’re moving toward modified approvals with requirements for monitoring attached.

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Tuesday

 
I've been told that I have MS. What course will it take? - London Times
A 35-year-old London reader has been told that she has MS. Her first symptom was of blurred and double vision. Initially her doctor didn’t seem that interested and suggested that she see him again in a month or two.

At each successive visit the reader’s sight was improving. Doctor and patient were pleased by the effect of inactivity, but two years after the first trouble the double and blurred vision returned. This time it was accompanied by a blank spot in the middle of her visual field. She has now been told she is suffering from MS. She wonders about the likely course of her disease.more - London Times

 
The ABCs of MS and exercise
...Dr. Petajan found that the old admonition by doctors to MS patients that their primary need was copious amount of rest was wrong. Early in his research he found that those people whose only medical problem was mild to moderate MS could do 30 minutes of aerobic exercise daily without
increasing their fatigue.

He reported the majority of people in the study "feel more aware and energetic. And they are able to accomplish daily living tasks more effectively."READ MORE

 
2006 WAS A GOOD YEAR FOR MS:

During 2006, rapid research progress was made in the fields of science and medicine that impact understanding and treatment of multiple sclerosis, an unpredictable neurological disease.

Significant advances have been made in both clinical and laboratory studies in MS. In addition, more than 130 clinical trials are underway around the world, and still other experimental drugs are in the pipeline. Key highlights of the year include:

Acorda Therapeutics (Hawthorne, NY) announced positive results of a Phase 3, placebo-controlled clinical trial of Fampridine-SR, an oral drug designed to provide symptomatic relief by compensating for lost nerve conduction. In 301 patients with all types of MS, those on active treatment showed an average increase in walking speed of 25% versus those on inactive placebo. The company is expected to meet with the U.S. Food and Drug Administration (FDA) to determine next steps needed to apply for marketing approval.

The FDA approved the return to market of Tysabri(R) (natalizumab, produced by Biogen Idec and Elan Pharmaceuticals) to delay the accumulation of physical disability and reduce the frequency of relapses (clinical exacerbations) in those with relapsing MS. There is now in place a mandatory registration program for patients and prescribing physicians to minimize the risk of PML (progressive multifocal leukoencephalopathy), caused by a common virus called the JC virus. The drug is dispensed at registered infusion centers across the country. Since Tysabri's return to market last summer, there have been no new cases of PML reported.

Members of the four Nervous System Repair teams from Europe and the U.S. met to share progress being made in the Society funded Promise: 2010 initiative. The first clinical trials focused on protecting the nervous system will begin shortly, and trials aimed at repairing damage and restoring function in people with MS are expected to begin within the next five years.

In a first, Johns Hopkins University researchers reported that nerve cells derived from mouse embryonic stem cells that were transplanted into rats with spinal cord injury were able to connect with muscles and partially restore function. While this work was done in a model of spinal cord injury, it bears relevance to the potential use of cell replacement to repair damage in MS.

The Society will be sponsoring the first ever stem cell summit January 16-19 in San Francisco to explore the potential of the complete spectrum of stem cell options as they might relate to MS research and treatment. The by-invitation only meeting will bring together some 60 renowned scientists from around the world to examine stem cell prospects and strategies in MS. The results of this meeting are expected to set research directions and priorities to best determine the potential of all types of stem cells for treating this disease.

Researchers from the University of California, Los Angeles reported that administering Androgel(R) (testosterone gel applied to the skin) to 10 men with relapsing-remitting MS significantly improved cognitive function and slowed brain tissue loss. This study was funded by the Society's initiative on Gender Differences in MS and is expected to lead to additional research involving larger numbers of patients to confirm these early results.

In another offshoot from the Society's initiative on Gender Differences, UCLA investigators began the first large-scale trial of a sex hormone for the treatment of MS. The two-year, controlled clinical trial of estriol involves 130 women with early relapsing-remitting MS. If successful, this clinical trial will lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS. Its results may also have implications for women with other autoimmune diseases, such as rheumatoid arthritis.

Several oral MS therapies continued to progress through the pipeline:

-- a phase II controlled clinical trial of oral fingolimod (FTY720, Novartis Pharmaceuticals Corp.) in 255 people with active, relapsing MS found that up to 77% of those taking fingolimod remained free of relapses over two years; a large phase III trial is now underway;

-- oral cladribine (an immune-modulating drug by Serono), now being tested in an international Phase 3 clinical trial, has been designated by the FDA as a "Fast Track Product," which should expedite its future review;

-- a multicenter, phase II controlled clinical trial of oral BG00012 (an oral fumarate, Biogen Idec) led to a 69% reduction in active inflammation on MRI scans in 257 people with relapsing-remitting MS;

-- in an open-label, 144-week extension study of oral teriflunomide (an agent that may modulate T cells), those on placebo during the original trial who switched to teriflunomide experienced up to an 85% decrease in new, active areas of disease activity seen on MRI at week 144.

Harvard investigators reported that individuals who showed signs of significant exposure to the Epstein-Barr virus, which causes infectious mononucleosis and other disorders, were twice as likely to develop MS up to 20 years later. The study, funded in part by a grant from the National MS Society, adds to previous evidence linking the virus to the risk of developing MS, but does not prove that EBV actually causes MS. Other recent studies have suggested that smoking cigarettes may contribute to the risk of MS and MS progression, and that higher vitamin D intake may help protect against developing MS.

For the first time, the needs of children who develop MS-like symptoms are being addressed through the Society's nationwide network of comprehensive Pediatric MS Centers of Excellence, launched early this year. The 6 centers have committed to sharing critical resources and best practices such as MRI protocols and neuropsychological evaluations so that all families can benefit from the collective knowledge of the entire network. In addition to providing optimal care and support, these centers will build a framework for research into this patient population, which may also provide clues to adult MS.

Two genes that may contribute to making a person susceptible to developing MS have been identified by a group of European researchers known as the "GAMES" Collaborative Group. MS involves an immune-system attack on the body's own brain and spinal cord, and many genes are thought to contribute to susceptibility. The two candidate genes were singled out because they encode for a brain tissue component and an immune component. This work was supported in part by the National MS Society.

Researchers at Stanford University have uncovered evidence they believe may explain the role of a protein, osteopontin, in stimulating repeated relapses and disease progression as well as inhibiting spontaneous recovery from symptoms. This research, sponsored in part by the Society, could lead to new therapeutic approaches that target oseopontin's effect in the MS disease process.

The National MS Society launched a new postdoctoral fellowship program in MS rehabilitation research. The immediate goal is to recruit and train talented clinician-scientists in rehabilitation research specific to MS; the ultimate goal is to get more hands and minds working on ways to help people with MS maximize their abilities.

[SOURCE: MS SOCIETY]

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Use of ladostigil for the treatment of MS: patent invention.

Use of ladostigil for the treatment of MS: patent invention
This patent filing describes the use of ladostigil (an Alzheimer's drug) for treating MS. The inventors have been recently associated with Teva [Copaxone]. MORE]

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Sunday

 
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Tulsan with MS kneads for strength: Tulsa World News
It's the pottery, dude.

That is Julie Trainum's response to a physical therapist who discovered that her hand grip was stronger than his -- even though she has multiple sclerosis and he doesn't.

"Pottery has really helped my upper arm strength," she said. "It's been physically beneficial, but it's also playful."

Three years of kneading, throwing and shaping the clay as it spins on the pottery wheel have toned Trainum's arms while lifting her spirits.more
lifting her spirits.

 
School volunteer makes a difference: The Idaho Press-Tribune
Slowly coming down the hall, I hear the steady squeaking of walker wheels as Gordon Myree, a volunteer at Hubbard Elementary in Kuna, makes his way into one of the classrooms. Chuckling, he says, “I’m 49, but I’m still in the first grade.” Placing his walker beside a table, he prepares to teach math, reading or language arts skills to small groups of first graders for the next three hours. Tomorrow, he’ll work in another classroom — something he’s done five days a week, 36 weeks a year since multiple sclerosis forced him to retire in the spring of 2004....MORE

Saturday

 
[Study Abstract] Fetal risks related to the treatment of MS during pregnancy and breastfeeding
In women with multiple sclerosis, pregnancy does not have a long-term adverse effect on lifetime disability; however, there is an increased risk of relapses during the postpartum. Therapies taken during pregnancy may have adverse effects on pregnancy outcome. The small number of pregnancies included in most studies, particularly those evaluating the risks related to the administration of immunomodulating drugs, do not allow firm conclusions to be drawn with regards to their safety.

Therefore, until more information regarding safety is available, glatiramer acetate, mitoxantrone and interferon-beta should be discontinued before an anticipated pregnancy. By contrast, glucocorticoids can be used to treat acute relapses during pregnancy.

 
Romney to announce'08 bid next month - CNN.com
While saying that he wanted to consult with his family, Romney dismissed any thought he might be dissuaded from a campaign because of any personal concerns they might express. In the past, Romney has said the only thing that would prompt an immediate end to his political career would be a change in the health of his wife, who has MS....MORE

Thursday

 
Serono's Oral Cladribine for the Treatment of Multiple Sclerosis Awarded Fast Track Status by FDA

GENEVA, Switzerland, September 21
-- Serono announced today that oral cladribine has been
designated a Fast Track product by the US Food and Drug Administration
(FDA). This designation covers patients with relapsing forms of multiple
sclerosis.

Serono's proprietary oral formulation of cladribine for the treatment
of multiple sclerosis is currently being evaluated in a multi-center,
multi-national Phase III study, CLARITY (CLAdRIbine Tablets Treating MS
OrallY) . It is a two-year, double-blind, placebo-controlled study
involving over 1,200 patients. Patient enrollment into this pivotal trial
is planned to be completed by the end of 2006.

"We are very pleased that oral cladribine has been designated a Fast
Track product," said Ernesto Bertarelli, CEO of Serono. "As a leader in
multiple sclerosis, we are committed to providing new treatment options
that can further improve the quality of the lives of people with this
serious disease and our objective is to bring to them the first oral
disease modifying treatment."

"Thanks to decades of research, there are injectible drugs available to
treat some forms of MS, but there is certainly a need for more and even
better therapies to treat all forms of the disease. Having an effective
oral therapy for MS would be a major step forward in improving quality of
life for people with MS," said Dr. John Richert, Vice President, Research
and Clinical Programs, at the National Multiple Sclerosis Society.

Fast Track programs are designed to facilitate the development and
expedite the review of new drugs that are intended to treat serious or
life-threatening conditions and that demonstrate the potential to address
unmet medical needs. Under Fast Track designation oral cladribine is
eligible for Priority Review and FDA may consider for review portions of
the marketing application before the New Drug Application (NDA) is
completed.

About cladribine
Cladribine is a purine nucleoside analogue that interferes with the
behavior and the proliferation of certain white blood cells, particularly
lymphocytes, which are involved in the pathological process of multiple
sclerosis. Through its differentiated mechanism of action, oral cladribine
may offer an alternative option to patients with multiple sclerosis.

 
The Genetic Connection and MS: National Multiple Sclerosis Society Webcast
[This webcast is pre-recorded and may be played at any time.]
This webcast will focus on:
Genetic Susceptibility
What would a cure for MS look like
How Genetics is helping us better understand MS

 
Serum 25-hydroxyvitamin D levels and risk of multiple sclerosis.
[ABSTRACT OF STUDY: Department of Nutrition, Harvard School of Public Health, and Channing Laboratory, Brigham and Women's Hospital and Harvard Medical School]
CONCLUSION: The results of our study suggest that high circulating levels of vitamin D are associated with a lower risk of multiple sclerosisMORE

 
NeuroVax...NEW MS DRUG IN PIPLINE
NeuroVax(TM), which is based on the Company's patented T-cell receptor (TCR) peptide vaccine technology, has shown potential clinical value in the treatment of relapsing forms of MS. NeuroVax(TM) has been shown to stimulate strong, disease-specific cell-mediated immunity in nearly all patients treated and appears to work by enhancing levels of FOXP3+ Treg cells that are able to down regulate the activity of pathogenic T-cells that cause MS. Increasing scientific findings have associated diminished levels of FOXP3+ Treg cell responses with the pathogenesis and progression of MS and other autoimmune diseases such as rheumatoid arthritis (RA), psoriasis and Crohn's disease. In addition to MS, the Company has open Investigational New Drug Applications (IND) with the FDA for clinical evaluation of TCR peptide-based immune-based therapies for RA and psoriasis.MORE

 
Medicine, multiple sclerosis, and me - What's it like being a medical student with multiple sclerosis?
Jenna Louise Duffy shares her experiences

"Jenna, you're not a child anymore now: you're 16 going on 17, and I think you are at the age where you can deal with certain things..." "Blah, blah, blah," I thought as my consultant droned on with the same dreary comments, and I stared out of the hospital window. These appointments were becoming a bit tedious. It was like having déjà vu. I stared out of the window. I kept thinking how excited I was about my plans for the weekend. My exams were approaching, and I just wanted to relax and have fun with my friends.

My parents and I had come in for my routine appointment at the University of Wales College of Medicine. I had been called in for my appointment 10 minutes early, so my father was still outside parking the car. I had been unwell with "unusual symptoms" at 14 years old. Magnetic resonance imaging and lumbar puncture had confirmed lesions on my brain.CLICK TO READ FULL STORY

Wednesday

 
High seroprevalence of Epstein-Barr virus in children with multiple sclerosis. [National Institutes of Health]
CLICK HERE TO READ STUDY ABSTRACT

A study published two years ago in JAMA reported that children with MS were twice as likely as matched controls to have been previously exposed to Epstein-Barr virus. In that study, anti-EBV antibodies were present in 83% of the children with MS vs. 42% of the controls. Now a new study appears to back up that observation. In this study, 98% of the children with MS were positive for EBV antibodies vs. 72% of controls. Furthermore, antibody concentrations were higher in the MS subjects than the controls. CLICK HERE TO READ STUDY ABSTRACT

 
High Levels of Vitamin D In the Body May Decrease the Risk of Multiple Sclerosis: Harvard School of Public Health press release
The possibility that vitamin D could help protect people from developing multiple sclerosis (MS) has been posited by researchers in recent decades, but evidence to support that link has been scant. In the first large-scale, prospective study to investigate the relationship between vitamin D levels and MS, researchers at the Harvard School of Public Health (HSPH) have found an association between higher levels of vitamin D in the body and a lower risk of MS. The study appears in the December 20, 2006, issue of the Journal of the American Medical Association.

“If confirmed, this finding suggests that many cases of MS could be prevented by increasing vitamin D levels. Although these levels could be increased by taking supplements, before any recommendation is made it is important to establish whether we are seeing a true causal association or whether vitamin D levels are only a marker of MS risk,” said Alberto Ascherio, senior author of the study and associate professor of nutrition and epidemiology at HSPH.

MS is a chronic degenerative disease of the central nervous system. It affects some 350,000 people in the U.S. and 2 million worldwide, and occurs most commonly in young adults. Women, who are affected more than men, have a lifetime risk of about 1 in 200 in the U.S. Vitamin D is a hormone manufactured naturally in the body, and its levels can be increased with exposure to sunlight, consumption of foods rich in vitamin D, such as fatty fish, and by taking supplements.

The researchers, led by Ascherio, worked in collaboration with colleagues in the U.S. Army and Navy to determine whether vitamin D levels measured in healthy young adults predict their future risk of developing MS. The investigation relied on a study population of more than 7 million individuals, whose serum samples are stored in the Department of Defense Serum Repository. Between 1992 and 2004, 257 U.S. Army and Navy personnel with at least two serum samples stored in the repository were diagnosed with MS. A control group, consisting of participants who did not develop MS, was randomly selected from the study population. Serum samples were analyzed for levels of 25-hydroxyvitamin D, a good indicator of vitamin D availability to tissues, and individuals were divided into five groups of equal size according to their average levels. Because vitamin D levels are strongly influenced by skin color, separate analyses were conducted among whites, blacks, and Hispanics.

The results showed that, among whites, MS risk declined with increasing vitamin D levels--the risk was 62% lower among individuals in the top fifth of vitamin D concentration (corresponding approximately to levels above 100 nmol/L or 40 ng/mL) than among those in the bottom fifth (approximately below 63 nmol/L or 25 ng/mL). The association was strongest among individuals who were younger than 20 when they first entered the study. No significant association was found among blacks and Hispanics, possibly because of a smaller sample size and the lower levels of vitamin D found in those groups. The average age of onset of MS cases was 28.5 years old; there was no significant difference in the results between men and women.

“The results of this study converge with a growing body of experimental evidence supporting the importance of vitamin D in regulating the immune system and suppressing autoimmune reactions, which are thought by most experts to play a key role in the development of MS,” said Ascherio. Kassandra Munger, first author and a doctoral candidate in nutrition at HSPH, added, “The amount of vitamin D that is needed to reach levels associated with MS protection is largely considered safe, and in fact higher vitamin D levels could be beneficial to prevent osteoporosis and other chronic diseases.” MORE: Harvard School of Public Health press release

Tuesday

 
Holidays Come Early for Maryland Woman with MS
December 19, 2006 - GAITHERSBURG, MD – At 10 a.m. yesterday, Irene Salazar said she finally believed there is a Santa Claus. When she opened her front door, she was amazed to see 20 smiling volunteers - armed with trash bags, label makers, boxes and a junk removal truck parked out front.

The volunteers were from Clutterbusters!!, a Derwood, Maryland-based franchise that provides professional organization services. They surprised Salazar with the gift of a lifetime -- spending the entire day organizing her three-story townhouse free-of-charge.

“Thank you! Thank you! Thank you!,” said Salazar, who suffers from Multiple Sclerosis, as tears welled in her eyes. “Thank you so much for doing this!”

Betsy Fein, president of Clutterbusters!!, explained that Salazar was selected for the free day of professional organizing because her illness causes her trouble in maintaining order in her home, noting the annual “X The Mess for MS” holiday event has received the strong support of the National Multiple Sclerosis Society.

Fein added that Salazar has a compelling story, as a wife and mother who is expecting plenty of family and friends to arrive for the holidays.

“The National MS Society is continually surprised by the creativity and innovation of our supporters. With people like Rick and Betsy Fein and their organization on our team, we know a cure for MS can’t be far away,” said Betsy O’Brien Anderson, Vice President of Development for the National Capital Chapter of the MS Society.

“This year we have selected an incredible person who just needs a little helping hand,” said Rick Fein, CEO of Clutterbusters Franchising, Inc., the parent company of Clutterbusters!! “We want to bring attention to the fact that many people with MS cannot maintain order in their homes, and it is a very serious problem for them.

“As the clutter accumulates, it causes stress, leading to an exacerbation of their symptoms, leading to even more problems maintaining order,” he added. “It’s a vicious cycle, and a major quality of life issue for them as well.”

There are thousands of “Irenes” out there, and while the MS Society generously provides financial assistance to others in this situation, more help is needed. If you want to give a more decent quality of life to sufferers of MS, we strongly urge you to contribute directly to the MS Society. It’s a very worthy cause, and we have seen an immediate and dramatic improvement in their outlook on life every time we do this event.

The Clutterbusters team concentrated their efforts in the basement, which had become a disorganized dumping ground for the family's furniture and clothes. As the day progressed, the team worked through the floors of her house, culminating with the organization of the bedrooms....MORE

 
Biogen issues alert after 2 Rituxan deaths- The Boston Globe
By Stephen Heuser, Globe Staff | December 19, 2006
Biogen Idec Inc. said yesterday that two patients using its drug Rituxan have died of a rare brain infection, the same one that shadows its multiple sclerosis treatment Tysabri .

In a letter sent to doctors, Biogen and Genentech Inc., which co-markets Rituxan with the Cambridge drug maker, warned that the two patients had contracted fatal progressive multifocal leukoencephalopathy, or PML.MORE: The Boston Globe

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NEW MS DRUG UPDATE: CHR-1103: "Chromos Molecular Systems Inc. (CHR) has taken several significant steps in the development of its lead product candidate, CHR-1103.

A humanized monoclonal antibody, CHR-1103 is being developed for the acute treatment of relapsing forms of multiple sclerosis (MS). Its unique mechanism of action has the potential to reduce the severity of a relapse in patients with MS and also stem the residual neurological damage that often accompanies relapse and leads to progression of the disease.

Chromos recently completed its first meeting with officials from the U.S. Food and Drug Administration (FDA). The two parties discussed Chromos' clinical approach, proposed preclinical safety evaluation program and manufacture of CHR-1103. Chromos is now moving forward with preclinical safety evaluation studies in preparation for an Investigational New Drug (IND) application in Q3 2007.MORE:"

 
Man convicted in mob death set free because of his daughter-in-law's MS - MSNBC.com
BRIDGEPORT — After spending more than 16 years in prison for his role in the murder of a Connecticut crime boss, Louis Pugliano will walk out of the federal courthouse a free man today. The murder played out like a scene in a "Godfather" movie. Grasso, who recruited killers to get rid of those he felt were unloyal renegades..MS

 
Multiple Sclerosis Is the Most Common Cause of Neurological Disability in Young Adults in the UK: Genetic Engineering News:
"The incidence of multiple sclerosis varies throughout the world, although there is a significantly higher incidence of the disease found in the Northern Hemisphere. Find out more in this chapter of CNS Drug Discoveries.

It is estimated that over 350,000 Americans (approximately 1 in 1,000 aged over 30 years) live with multiple sclerosis (MS) and approximately 3 million live with it worldwide. However, the prevalence may be higher because of the uncertainty in diagnosing the condition. Women are twice as susceptible as men and it is more common in people in northern latitudes over the age of 18 years. In addition, siblings of an individual with multiple sclerosis have a higher chance of developing the disease.

The incidence of multiple sclerosis varies throughout the world, although there is a significantly higher incidence of the disease found in the northern hemisphere. Multiple sclerosis is the most common cause of neurological disability in young adults in the UK....MORE:Genetic Engineering News:"

Monday

 
Agent May Battle Relapsing MS: Physician's Weekly
An experimental oral agent: fingolimod (FTY720)appears to reduce clinical disease activity in patients with multiple sclerosis (MS). The immunomodulating agent works by containing T cells in the lymph nodes to limit damage to the central nervous system. In a six-month study of 255 MS patients, the median total number of gadolinium-enhanced lesions detected on MRI was lower in those randomized to receive FTY720 when compared with those receiving placebo. Additional data from a six-month extension study revealed a 70% reduction in the MS relapse rate in patients who switched from placebo to FTY720.

 
NEW DRUG FOR MS PAIN: Pfizer's Lyrica(R) Approved in Europe for Difficult-to-Treat Nerve Pain
Monday September 18, 2:24 pm ET
- Lyrica's neuropathic pain indication broadened to include central nerve pain; Central nerve pain is associated with conditions such as spinal cord injury, stroke, and multiple sclerosis

- A robust and unprecedented clinical program involving more than 10,000 patients supports Lyrica's efficacy and safety in treating a broad range of neurological disorders

- Medical Expert: 'Physicians will be in a better position to manage a whole host of difficult-to-treat nerve pains for many of their patients.'

NEW YORK, Sept. 18 /PRNewswire-FirstCall/ -- Pfizer Inc said today that the European Commission approved Lyrica® (pregabalin capsules) to treat central neuropathic (nerve) pain. This new approval broadens the current range of neuropathic pain that Lyrica is approved to treat in Europe to include nerve pain associated with conditions such as spinal cord injury, stroke, and multiple sclerosis. Central neuropathic pain can be an especially difficult-to-treat condition, often requiring the use of strong narcotics. Lyrica's approval in central neuropathic pain provides further evidence of its robust efficacy in even the most hard to treat neuropathic pain conditions. Now, Lyrica is the only medication approved in the EU to treat both peripheral and central neuropathic pain, which affects up to 7.7 million people in Europe.

Developed by Pfizer, Lyrica is believed to work by calming hyper-excited neurons which may be an underlying cause for various types of nerve pain.

"This approval underscores Pfizer's commitment to providing much needed therapies for complex and poorly managed pain conditions," said Dr. Joseph Feczko, Pfizer's Chief Medical Officer. "A robust and unprecedented clinical program involving more than 10,000 patients supports the efficacy and safety of Lyrica across a range of neurological disorders."

Neuropathic pain may be the result of a primary lesion or dysfunction of either the peripheral or central nervous system. Characterized by a burning, tingling and/or shock-like sensations, neuropathic pain is a type of chronic pain that is often misdiagnosed, under-treated, and a significant burden to patients, their families and society. Neuropathic pain disrupts a patients' ability to go about their daily activities. For example, patients often miss work, have difficulty concentrating and find that wearing clothing can be painful. Neuropathic pain is also associated with impairments in sleep as well as increased anxiety and depression.CLICK TO READ FULL STORY

 

TYSABRI: "Biologic treatment for MS offers hope"

TYSABRI: "Biologic treatment for MS offers hope": Daytona Beach News-Journal

December 18, 2006

Biologic treatment for MS offers hope
By DR. YONG H. TSAI

Susan awoke one day with blurred, obstructed vision along with dizziness and numbness in her legs. A trip to her doctor's office triggered an order for blood tests and an MRI. She was diagnosed with multiple sclerosis (MS), an autoimmune disease involving the central nervous system.

Our brain and spinal cord, that house the main pathway of our body's nerve signals, offer a layer of insulation, called myelin, that surrounds and protects these nerve cells.

Like a plastic cover that surrounds the many wires of an electric cable, myelin covers nerve fibers to ensure that the nerve signals have safe, uninterrupted passage.

With MS, myelin sheaths break down (demyelination), due to inflammation caused by the autoimmune process. Damaged tissue eventually turns into scar tissue (sclerosis), meaning "multiple sclerosis."

Classic symptoms of MS include numbness, visual disturbance, abnormal gait, imbalance, muscle weakness or spasm, urinary incontinence, vertigo, slurred speech and even pain.

There are several forms of MS. Relapsing-remitting MS (RRMS) occurs about 25 percent of the time with intermittent relapses, including worsening of existing symptoms or the development of new ones.

Over the course of 10 to 15 years, more than 50 percent of RRMS will evolve into progressive MS, known for more frequent relapses, incomplete remission bouts and general overall deterioration.

During the past few years, beta interferons such as Avonex, Rebif, Betaseron and Copaxone, by modifying the inflammatory process, have been used to treat MS.

However, all still have side effects and some have poor results. In November 2005, Natalizumab (Tysabri), a biologic agent, was proven to block the function of key molecules. The process could transport immune cells crossing the brain and blood barrier (BBB), and prevent against an attack on one's central nervous system.

Clinical trials have shown Tysabri, administered by monthly intravenous infusion, is a very effective therapy in reducing relapses and decreasing new brain lesions.

However, the shocking news surfaced Feb. 28 that Tysabri was suspended temporarily from commercial distribution due to three serious, adverse events. Multifocal leukoencephalopathy (PML) occurred in clinical trial patients treated with Tysabri plus Avonex.

However, there have been no reports of PML in patients treated with either Tysabri or Avonex alone.

More recently, Tysabri has been permitted for MS treatment. Tysabri is only indicated as a single-agent treatment instead of in combined therapy with Avonex or other agents. It's for patients with the relapsing form of MS and poor response to traditional treatments.

Though there is some concern with rare side effects of Tysabri, this new biologic agent offers new hope.

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Sunday

 
PERSEVERANCE STORY FROM TODAY'S NEWS: "A matter of degree"
The same year Shea Williams was to start a new chapter in her life, the Dothan resident was given news that could have changed her plans
completely.

Self-described as "stubborn," Williams would not stand by and let that happen. However, she would have a formidable foe in her quest to enroll at Baptist College of Florida in Graceville and graduate with a bachelor's degree in music education.

Williams didn't know her enemy existed until she visited an optometrist in July of 2003, after fuzziness developed in her left eye. The doctor's prognosis made her even more curious. She was told she did not have a blind spot in her left eye, and she could not see color out of it. Referred to a neurologist, Williams was informed she had optic neuritis, which occurs when the optic nerve is inflamed. Learning the root cause of optic neuritis is multiple sclerosis transformed the personality of the normally happy-go-lucky Williams.

"I got mad and went into denial," she said.

But giving up is not in Williams' genetic makeup.MORE

Saturday

 
Elan, Biogen Idec submit Tysabri for Crohns - Pharmaceutical Business Review
Elan and Biogen Idec have submitted a biologics license application to the FDA seeking approval to market Tysabri in the US as a treatment for Crohn's disease.MORE

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NEW NEW DRUG FOR MS FATIGUE: MCT-125 [Pharmaceutical Business Review]
MCT-125 targets fatigue associated with multiple sclerosis.

In a phase II trial conducted in the UK by Amarin, MCT-125 (then known as LAX-202) demonstrated efficacy in significantly reducing the levels of fatigue, with few if any side effects, in all multiple sclerosis patient populations enrolled in the study including relapse-remitting, secondary progressive and primary progressive.

MultiCell Technologies has reported its completion of all upfront license fees related to its acquisition of MCT-125, a drug candidate being developed as a treatment for fatigue associated with multiple sclerosis.

The payment was completed pursuant to the terms of the amended license agreement with Amarin Neuroscience. MultiCell estimates MCT-125 could generate up to $3 billion in cumulative worldwide sales during the time it is under patent protection. Under the terms of the agreement, Amarin could receive up to $275 million in milestone payments and cumulative royalty payments.CLICK TO READ MORE[Pharmaceutical Business Review]

 
Soy-Based Inhibitor Holds Promise as MS Treatment - Forbes.com
A natural soy-based substance called Bowmann-Birk Inhibitor Concentrate (BBIC) improved the condition of animals with a disease similar to multiple sclerosis, a U.S. study says.

One group of animals with the MS-like disease called autoimmune encephalomyelitis (EAE) received BBIC, while another group of animals with the same disease received an inert substance.

"Animals that received BBIC were able to walk, while those that didn't get the drug were not," study leader Dr. A.M. Rostami, professor and chair of the department of neurology at Jefferson Medical College in Philadelphia, said in a prepared statement.

The animals that received BBIC weren't cured of their illness and did walk with some limp or weakness. However, the results are promising, the researchers said.

They also found that the central nervous systems of the animals that received BBIC had "significantly less inflammation and demyelination" than animals that didn't receive BBIC.

"It's the first time that BBIC has been used in an EAE model and has shown significant disease suppression, and we hope it can eventually be used in humans," Rostami said.

BBIC inhibits proteases, which are enzymes that play a major role in the inflammation and demyelination associated with multiple sclerosis, in which the myelin coating of nerve fibers become inflamed and scarred.

The study was published Dec. 12 in the journal Multiple Sclerosis.


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