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CHAMPIONS TACKLING MS - AWARDS Dinner, Honoring Aaron Boster, MD and Jon e. Glaser, DDS - now open for registration. Visit www.events.msvn.org
Saturday, July 11, 2009
Kevin Stillerman of Coral Springs was six when his father started showing signs of multiple sclerosis. He was too young to realize it, but the life he knew was about to change forever.
However, it did not take him long to become conscious of the fact that his childhood was different from that of his friends. "When you have a parent with a disability, you sort of have extra responsibilities that others don't have. My dad couldn't play with me like other dads did with their kids, but it didn't affect me too much."
Stillerman, who graduated from Marjory Stoneman Douglas High School earlier this year, was searching online for scholarship opportunities when he saw what the National Multiple Sclerosis Society South Florida chapter had to offer. "The chapter was accepting applications from students who had multiple sclerosis or those who were affected by it due to someone in the family having it. I figured I had a good shot."
>> READ MORE
Source WebMd - Friday June 10, 2009
|In This Issue:|
| • Memory Fix May Be in Your Coffee Cup|
• Test Your MS Management Skills
• 'Memory Loss Is Scaring Me'
|Memory Fix May Be in Your Coffee Cup|
Researchers report that caffeine could be a viable "treatment" for
people with Alzheimer's disease.
• Let Your Mind Put You to Sleep
• Brain Yields Clues to Hypnosis
Test Your MS Management Skills
Multiple sclerosis can vary a lot from person to person, so managing
the disease becomes personal as well.
• When to See a Doctor for MS
• Multiple Sclerosis Q&A
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Friday, July 10, 2009
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Once registered, you will receive our weekly ms related e-newsletter, keeping you informed of current MS information. This e-Newsletter is now being received by e-recipients in (50) Countries.
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Thursday, July 9, 2009
|Federal Focus - July 2009 - From the National MS Society|
Ask your Senators and Representative to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273). The legislation, supported by our Congressional MS Caucus and the Bicameral Congressional Caucus on Parkinson's Disease, would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis, Parkinson's disease, and other neurological diseases and disorders.
Take Action Today! Click here send an e-mail to your legislators
The National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273) calls for establishing separate, permanent, and coordinated MS and Parkinson's disease registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) using an incremental, science-based approach. The last national study on incidence and prevalence rates on MS was conducted in 1975 - a lot has changed in 34 years. These registries will help determine incidence and prevalence rates and lay a foundation for better evaluating and understanding MS issues such as geographic clusters, variance in gender ratio, changes in health care practices, and changes in disease burden.
The MS and Parkinson's disease registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and results could be used to provide consistency and coordination in addressing treatment of these and other neurological diseases. Take action today and ask your Senators and Representative to cosponsor H.R. 1362/S.1273.
Amirah Culbreath thought she needed a new pair of glasses.
"I had a glare, but my optometrist couldn't find anything and I was sent to doctor after doctor," she said. "Finally, they did a MRI and a spinal tap, and that's when they discovered it. That's when I found out I had MS."
After being diagnosed with multiple sclerosis in 2003, the wife and mother of two sons had to change her eating habits and find ways to minimize stress, among other things.
"I would say the biggest thing, though, was that I had to slow down, because I was always ripping and running," she said. "I've adjusted, but I can tell it frustrates my family sometimes because they see that I'm hurting but there's nothing they can do to take the pain away."
Written by Nina - in the U.K.
When my husband was diagnosed with Multiple Sclerosis some thirteen years ago, it was a shock, from which in some ways, we are still to recover. The problems that sprang immediately to mind were how his mobility would be affected, could we cope financially and would it affect our animals.
Animals have always played an important part of our lives and having owned German Shepherd Dogs for the majority of our married life, we were used to the strenuous exercise and mental stimulation that this particular breed required. Zak (our German Shepherd Dog at that time), was a mere youngster and was already enjoying the prolonged walks and regular training that Doug provided. We were sailing into the unknown and as anyone who suffers from Multiple Sclerosis will testify, it can be a relapsing remitting condition. This makes the symptoms variable and unpredictable, and you are forced to face the uncertainty of when new relapses will occur.
In the years that followed I noticed a huge difference in my husband. In some respects his life with Zak became almost regimented. A strong bond between dog and owner had already been forged, but Doug had come to rely on the regularity of their walks and even lengthened their duration! Zak's devotion was uncompromising and it was almost as though Zak's presence increased Doug's determination to remain well and throughout their years together our dog remained a real focus for him to retain his mobility. Despite setbacks, Zak's walks took priority and remained so until we eventually lost him some 15 months ago to cancer.
Our grieving for Zak had pushed us both to our emotional edge, but I will always be mindful of the wonderful gift that our dog had given Doug and the determination to continue as normal a life as Multiple Sclerosis would allow.
We now have our fourth German Shepherd whom we have named Luika. Ironically he also has health problems, being diagnosed with cow hocks at an early age. This condition actually limits the amount of exercise that he can enjoy, which in some sense is a little comfort. I have now taken over his training, but Doug continues his walking duties, with all the enthusiasm and gusto he shared with Zak.
I truly believe that animals, in particular dogs, are an important part of someone's physical, social, and emotional well being. Luika is but a year old, yet already I am already beginning to see those early signs of total and complete, blind devotion.
By Nina Cole - Nina’s Nannies for Pets - www.ninasnanniesforpets.co.uk
Wednesday, July 8, 2009
Okay, I'll say it - I am feeling good. Let me qualify that by saying that I am feeling pretty great for a person with MS in the middle of the summer on most days. If I were a person without MS who felt like this, I might not be quite as enthusiastic or impressed by my level of physical stamina, but I would still be pretty functional.
July 8, 2009
By Chris Reidy, Globe Staff
Biogen Idec Inc., a Cambridge company known for its multiple sclerosis drugs, said that US Food and Drug Administration has granted it Fast Track designation for a potential treatment of relapsing multiple sclerosis.
The company refers to its drug candidate as PEGylated interferon beta-1a, or BIIB017, and it noted in a press release that the "FDA's Fast Track program is designed to expedite the review of new drugs that are intended to treat serious or life-threatening conditions and demonstrate the potential to address unmet medical needs."
Biogen Idec said it is currently enrolling patients in a global Phase III study evaluating the efficacy and safety of either biweekly or once-monthly injections ofPEGylated interferon beta-1a.
summary: Some people with MS may develop a level of cognitive dysfunction over the disease course. In this study, the authors found that people with MS and with symptoms suggestive of cerebellar involvement had more pronounced cognitive dysfunction in specific domains such as attention and verbal fluency, than people with MS lacking cerebellar symptoms.
For this reason, the authors suggested that cerebellar symptoms in people with MS should be assessed carefully in clinical practice, in order to perform a neuropsychological evaluation as soon as the need arises.
authors: Valentino P, Cerasa A, Chiriaco C, Nisticò R, Pirritano D, Gioia M, Lanza P, Canino M, Del Giudice F, Gallo O, Condino F, Torchia G, Quattrone A
source: Mult Scler. 2009 Jul;15(7):854-9
weblink: click here
By Matthew L. Brown * Worcester Business Journal Staff Writer
Framingham-based GTC Biotherapeutics Inc. now has the rights to develop and commercialize a protein that could be used to treat multiple sclerosis and other autoimmune diseases.
The protein is recombinant human alpha-fetoprotein (rhAFP) and it has been in development by Cambridge-based Merrimack Pharmaceuticals in the milk of genetically modified goats at GTC's facilities. Under the new agreement, GTC will receive enough rhAFP from Merrimack for use in clinical studies and will assume control of the goats.
Financial terms of the deal were not disclosed.
Human AFP is a blood protein produced in very high levels in women during pregnancy. It plays a role in strengthening women's immune systems in order to protect gestating fetuses. Apart from pregnancy, AFP is produced in very low levels.
GTC plans to study whether human AFP produced by genetically modified goats can treat autoimmune diseases multiple sclerosis and myasthenia gravis.source: WBJournal
Medications such as interferon and cyclosporine can have negative drug interactions with Tysabri. Although many medications are safely used together daily, some drug combinations can produce serious, even life-threatening, interactions. Physicians and pharmacists should always be aware of all medications, including herbal and over-the-counter, that a patient may be taking in order to avoid these negative interactions.1
- Drugs that can weaken the immune system, such as azathioprine, cyclosporine, and methotrexate, can negatively interact with Tysabri.2
- Corticosteroids, such as prednisone, can also negatively interact with Tysabri.2
- Tysabri is a brand name of the generic medication natalizumab.2
Selected by our Guides and Physician Review Team (of Organized Wisdom).
- Cerner Multum (via Drugs.com): What Other Drugs will Affect Tysabri?
- MediResource (via C-Health): What Other Drugs Could Interact with Tysabri?
- First DataBank (via WebMD): Tysabri IV Interactions
- National MS Society: Tysabri (Natalizumab): Warnings and Precautions
- RxList: Tysabri: Drug Interactions
Source: Organized Wisdom
Tuesday, July 7, 2009
Join Talk MS in July
for MS 101: Understanding the Basics
On July 22nd, MS in BalanceSM will release a new online video, available for viewing at your convenience any time after 8AM ET:
In just 30 minutes, this program covers the basics of MS to keep you in the know about living well with MS.
This Talk MS program will feature special guests, including:
|Barry Singer, MD|
|MS LifeLines® Ambassador Kim|
Don't miss your opportunity to talk MS!
Join Talk MS
on July 22nd for your chance to submit a question to a physician, who may answer it in a future event!register today
|When you register, you will receive an email notification when this video is ready for viewing!|
Phone registration is no longer available for MS in Balance webevents. Registration is only available online.
MSIF have published What is an MS Centre in collaboration with Rehabilitation in MS (RIMS), the Consortium of MS Centers (CMSC) and the International Organization of Multiple Sclerosis Nurses (IOMSN).
Meeting the challenges of MS on a daily basis is a task that no one should have to face alone. People with MS need accessible, comprehensive care and services exist to meet their needs.
While some people have access to MS centres, with care teams made up of health professionals from a variety of disciplines, in many parts of the world such centres are non-existent.
This new guide from MSIF looks at the services and support an MS centre can provide, how MS centres are funded, relationships with MS societies and other topics. It should serve as the basis for discussion between countries where healthcare professionals and MS societies together are dedicated to improving the quality of the lives of people with MS.
To read What is an MS Centre? click here.
By: Preston Walker
I am not sure how to describe what happened today other than that I have a LOAD OF ENERGY!! To let everyone understand this, I documented today's events in the following information:
I invited my son to a bike ride. We rode twenty miles and returned home. Instead of wanting to sleep, I started looking for other things to do!!
I found that my lawnmower needed the rear wheel removed and replaced. The taillight on my ATV needed the support bracket removed and replaced. The inspection on my wife's car was out - took it to the shop for that. The same car's wheels needed to be balanced and rotated - DONE! My license plate registration would expire at the end of this month - bought the renewal ahead of time. I returned home and affixed the new sticker to my truck. I also bought 4.3 tons of rock for the flower beds that we will lay down within the next couple of days.
When all of this was taken care of, I rode the ATV with my son and watched him ride for a little while. I then went to watch my daughter play a volleyball game.
It was quite a day of doing little things, but it would have been very taxing several weeks ago. It's now 9:00 p.m. and I am still full of energy!!
There is only one reason for this turn of events.
It is God's good grace through the injection of ADULT STEM CELLS. GO STEM CELLS GO!!
Learn more of Preston at the ASCT website
July 07, 2009
First Drug Derivative of Caribbean Sea Anemone Peptide Scheduled for Clinical Trials in 2010
SEATTLE--(BUSINESS WIRE)--Kineta, Inc. of Seattle and Airmid Incorporated of Redwood City, CA jointly announce an agreement in which a Kineta subsidiary has acquired exclusive commercial rights to a portfolio of novel therapeutic compounds from Airmid. The array of compounds holds extraordinary potential for the treatment of multiple sclerosis, type 1 diabetes mellitus and numerous other autoimmune diseases.
“This transaction is a significant milestone for Airmid. It places our peptidic Kv1.3 blockers into the very capable hands of Kineta’s drug development team, sets Airmid on a path to provide substantial return-on-investment for our shareholders, and provides funding to enhance the value of Airmid’s retained assets,” said George Miljanich, Ph.D., CEO of Airmid. Under the terms of the deal, Airmid will receive upfront payments, development, regulatory and commercial milestones as well as sales royalties.Airmid founder, K. George Chandy, MD, Ph.D., also applauded the announcement: “Kineta possesses both the scientific capacity and the track record of success necessary to advance these promising therapeutics toward the goal of conquering multiple devastating autoimmune diseases.”
Monday, July 6, 2009
Sunday, July 5, 2009
I am 15 years old and attend High School in Dearborn, MI. I am conducting research, for my Science Fair Project, on the risks of getting MS by geographic location (where you were born and where you grew up) along with birth month.
Below is a link to a short 5 question survey for people with MS. Please take the time (less than one minute) to complete the survey.
The survey is completely anonymous. Your answers will be looked at on a group basis, not individually. Your e-mail address or any other identifiable information will not be collected. Again, thank you for helping me with my project by taking the survey. Please forward this email to anyone you know who has MS.
Hopefully one day we can wipe out this disease!
Click on link to fill out survey.
Feel free to contact me if you have any questions. If link doesn't work, just copy and paste the link into your address browser.
US researchers said that undiagnosed cases of celiac disease, where the immune system has a strong adverse reaction to the protein found in wheat and other grains, appear to have increased dramatically in the last 50 years. They also found, over a 45 year follow up, that people with undiagnosed celiac disease have a nearly four-fold increased risk of premature death from any cause.
The study was led by researchers at the Mayo Clinic in Rochester, Minnesota, and appears online in the July issue of the journal Gastroenterology.
Continue reading this informative article from the 3rd paragraph
To Read the DIET, Click here
IF you are currently on SWANK and have any information to provide to others, I am sure they would like to hear from you.
Istituto Nazionale Neurologico Carlo Besta, S.O. Neuroepidemiologia, via Celoria 11, Milano (MI), Italy, 20133. firstname.lastname@example.org
BACKGROUND: Clinical and experimental data suggest that certain dietary regimens, particularly those including polyunsaturated fatty acids (PUFAs) and vitamins might improve outcomes in people with multiple sclerosis (MS). Diets and dietary supplements are much used by people with MS in the belief that they might improve disease outcomes.
OBJECTIVES: We performed a Cochrane review of all randomised trials of dietary regimens for MS with the aim of answering MS consumers' questions regarding the efficacy and safety of these interventions.
SEARCH STRATEGY: We searched the Cochrane MS Group trial register (February 2006), Cochrane Central Register of Controlled Trials (CENTRAL), Cochrane Library, Issue 1, 2006, MEDLINE (PubMed) (1966 to March 2006), EMBASE (1974 to March 2006) and the bibliographies of papers found.
SELECTION CRITERIA: All randomised controlled trials comparing a specific dietary intervention, diet plan or dietary supplementation, with no dietary modification or placebo, were eligible.
DATA COLLECTION AND ANALYSIS: Two reviewers independently selected articles, assessed trial quality and extracted data. Trial quality was poor, particularly as regards descriptions of randomisation, blinding and adverse event reporting. Some studies had large numbers of drop-outs; dropouts were never included in the analyses.
MAIN RESULTS: PUFAs did not have a significant effect on disease progression, measured as worsening of Disability Status Scale. Omega-6 fatty acids (11-23 g/day linoleic acid) had no benefit in 75 relapsing remitting (RR) MS patients (progression at two years: relative risk (RR)=0.78, 95% CI [0.45 to 1.36]) or in 69 chronic progressive (CP) MS patients (RR=1.67, 95% CI [0.75 to 3.72]. Linoleic acid (2.9-3.4 g/day) had no benefit in CPMS (progression at two years: RR=0.78, 95% CI [0.43 to 1.42]). Slight decreases in relapse rate and relapse severity were associated with omega-6 fatty acids in some small studies, however these findings are limited by the limited validity of the endpoints. Omega-3 fatty acids had no benefit on progression at 12 months in 14 RRMS patients or at 24 months in 292 RRMS patients (RR=0.15, 95% CI [0.01 to 3.11], p= 0.22 at 12 months, and 0.82 95% CI [0.65 to 1.03], p=0.08, at 24 months).The low frequency of reported adverse events suggests no major toxicity associated with PUFA administration.No studies on vitamin supplementation and allergen-free diets were analysed as none met the eligibility criteria.
AUTHORS' CONCLUSIONS: PUFAs seem to have no major effect on the main clinical outcome in MS (disease progression), and does not substantially affect the risk of clinical relapses over 2 years. However, the data available are insufficient to assess any potential benefit or harm from PUFA supplementation. Evidence bearing on the possible benefits and risks of vitamin supplementation and antioxidant supplements in MS is lacking. More research is required to assess the effectiveness of diets interventions in MS.Farinotti M, Simi S, Di Pietrantonj C, McDowell N, Brait L, Lupo D, Filippini G.
Source : PubMed
Department of Nutrition & Dietetics, Liberton Hospital, Lasswade Road, Edinburgh EH16 6UB, Scotland, UK. email@example.com
For many years, medical interest in the relationship between nutrition and multiple sclerosis (MS) has focused largely on aetiology and the influence of dietary fat on the rate and severity of disease. While the cause of MS remains unknown and the influence of dietary fat is unclear, recent studies on antioxidant intake and oxidative stress in MS are strengthening the rationale in support of a healthy eating regime following diagnosis. Dietary intake in MS and the influence of advanced disease on nutritional status are less well researched and documented. Both obesity and malnutrition may occur with detrimental consequences to functional abilities.
Cognitive difficulties, dysphagia and the side-effects of drug treatment may further contribute to deterioration in nutritional status. This paper aims to provide a practical overview of dietary management in MS. It reviews the available evidence relating nutrition to MS and discusses dietary management, with particular emphasis on the identification and alleviation of factors affecting nutritional status.PMID: 11906575 [PubMed - indexed for MEDLINE
By: Roger MacDougall
This is the story of my fight against Multiple Sclerosis. What follows is based upon my own experiences and the conclusions I have drawn from them. It should be clearly understood that I am not a doctor and have no medical training. My theories are controversial, though a growing number of individual doctors have now reached similar conclusions.
As a layman expressing views not accepted by the medical profession in general, I obviously come in for much criticism from that quarter. My aims are very simple. I suffered down to a state of terminal disability and am now enjoying a healthier life than I can remember. I would be inhuman if I did not use that unusual experience to give what advice I can to those still suffering. Here are the facts:
I was diagnosed 30 years ago at the National Hospital for Nervous Diseases in Queen Square, London, in February 1953. At that time, my specialist was recognized as one of the world's leading neurologists and Queen Square as one of the most celebrated neurological centres.
Within a few years I was unable to use my legs, eyes, and fingers ... even my voice was affected, and I was quite unable to stand erect, even for a few seconds.Continue to read from: Many Years Later
Multiple sclerosis (MS) is a progressive, degenerative condition which affects the nervous system. Multiple sclerosis (MS) destroys the myelin sheaths surrounding nerves in the brain and spinal cord, the myelin sheaths are needed to protect these vital nerves which are responsible for the effective transmission of nerve impulses. Multiple sclerosis (MS) is thought to be an autoimmune disease which symptoms tend to vary between mild to severe, a host of causes such as genetic susceptibility, environmental toxins, living in a temperate climate, diet and the Epstein-Barr virus have all been linked to Multiple sclerosis (MS). The fact is the real cause of multiple sclerosis (MS) is unknown.
The most common symptom of multiple sclerosis (MS) is numbness and tingling in the hand and toes, one side of the face and trunk of the body, loss of coordination in the hands or legs, weakness in the muscles, problems with eyesight, problems with walking, loss of bladder control, tiredness in the limbs, mood swings, slurred speech, clumsiness and loss of bowel control.
Diet change can help with multiple sclerosis (MS); studies have shown that levels of linoleic acid which is an essential fatty acid is low in individuals who suffer from multiple sclerosis (MS). Eating oily fish such as mackerel, salmon, trout, sardines and tuna, eating more seeds and nuts, using extra-virgin olive oil for cooking and taking high doses of evening primrose oil supplements should help with multiple sclerosis (MS). Reports from Dr. Roy Swank suggest that a low-fat diet is beneficial to those who are suffering from multiple sclerosis (MS). Other studies have also shown that multiple sclerosis (MS) suffers who had large amounts of saturated animal fats in their diet died from the disease earlier than those who had low amounts of saturated fats. Another report found that those who eat plenty of fish and vegetables and fruit were less likely to get multiple sclerosis (MS) and suffered less if they already had it. All these reports suggest that a vegetarian type diet with plenty of oily fish is the best diet for those who are suffering from Multiple sclerosis (MS).Continue to read from : Toxins have been linked