2010 MSF Cruise for a Cause: Destination Alaska
The MSF is pleased to announce the next Cruise for a Cause will return to the west coast for an Alaskan tour in June 2010. Alaska's stunning scenery and cool temperatures make it an ideal setting for an accessible, enjoyable trip for people with MS as well as family and friends.
More details will be coming soon? Any questions? Contact us at email@example.com.
Support Group Coordinator
Multiple Sclerosis Foundation
MSFYi NOVEMBER 2007
A three-year-old gave this reaction to her holiday dinner:
"I don't like the turkey but I like the bread he ate."
In This Issue:
* HOLIDAY FOODS OFFER HEALTH BENEFITS
* TIMING OF INJECTIONS COULD MINIMIZE SIDE EFFECTS
* ADAPTIVE SKIING SCHOLARSHIPS AVAILABLE!
* SYNTHETIC CANNABINOID CAN INCREASE SEROTONIN
* STUDY TESTS ADULT STEM CELLS FOR MS
* BETTER INFORMATION IS KEY TO UTILIZING TECHNOLOGY
* GET READY FOR YOUR DISABILITY INTERVIEW
* LEARN TO LIVE WELL WITH MSF TV
* CALLING ALL MS NURSES!
* JOIN US FOR THE 2008 CRUISE FOR A CAUSE
HOLIDAY FOODS OFFER HEALTH BENEFITS
Here's some good news for the holidays. Turkey, with all the trimmings, provides a wealth of health benefits.
Stuffing is rich in disease-fighting antioxidants. One German study found that the process of baking bread produced a unique antioxidant called pronyl-lysine, which is eight times more abundant in the crusts of bread than in the bread itself. Pronyl-lysine increases the amount of enzymes that play a role in cancer prevention. In general, darker breads (such as pumpernickel and wheat) contain higher amounts of these antioxidants than white bread.
Cranberries, often used in chutneys, sauces, and breads, are also loaded with antioxidants. Studies have shown that cranberries can help lower bad cholesterol and provide anti-aging properties that protect brain cells from free-radical damage which can cause problems with cognition and coordination. Cranberries are also good for urinary tract infections as they prevent the E-Coli bacteria from attaching to the urinary walls.
After your meal, even a cup of cocoa and a slice of pecan pie can be good for you. Two tablespoons of pure cocoa powder have double the antioxidant power of red wine and up to five times more than black tea. Pecans are a powerhouse of vitamin E, calcium, magnesium, potassium, zinc and fiber. They are also rich in heart-healthy fats.
So, enjoy. But watch portion size and remember the wise words of Aristotle: Everything in moderation.
TIMING OF INJECTIONS COULD MINIMIZE SIDE EFFECTS
Individuals on interferon therapy often do their injections at night so that they can sleep through side effects, such as flu-like symptoms. However, a recent study suggests that injecting in the morning may minimize side effects.
German researchers conducted a study with 16 people who were just starting interferon therapy. Half were given injections at 8 a.m. and the other half at 6 p.m. Those who injected in the evening experienced more intense side effects than those who injected in the morning. The evening injectors also had a greater increase of cytokines (a protein involved in the immune response) like IL-6. After six months of treatment, however, all side effects and most of the blood chemistry changes ceased.
Investigators believe that natural fluctuations of hormones and cytokines over the course of the day and night affect the body's response to interferon injections. They suggest that anyone having a problem with side effects consider trying morning injections to see if that proves helpful.
ADAPTIVE SKIING SCHOLARSHIPS AVAILABLE!
Due to an enthusiastic response from participants, MSF is continuing its partnership with the Adaptive Sports Association (ASA), a non-profit, year-round sports and recreational organization dedicated to enhancing the well-being of people with disabilities.
For the third consecutive year, ASA is accepting applications from individuals with MS for the New Dimensions Scholarship, an adaptive snow-skiing adventure in Durango, Colorado. The deadline for applications is December 15th. Any applications received after that date will be considered for the following year if funding is available.
The scholarship includes round-trip transportation, five-nights lodging with Durango area host homes, most meals and accessible ground transportation, four days of adaptive ski instruction, lift tickets, equipment and private instruction.
For over 20 years, ASA has been helping people with physical and cognitive disabilities to enjoy sports and other outdoor recreational activities. ASA instructors provide a safe environment utilizing state-of-the-art adaptive sports equipment.
For more information or to apply for a New Dimensions Scholarship, please call the ASA at 970-259-0374. Or visit www.asadurango.org. Simply click on "Scholarships" on the left-hand side and then click on "New Dimensions Scholarship Program."
SYNTHETIC CANNABINOID CAN INCREASE SEROTONIN
A new study conducted by researchers at McGill University in Montreal, Quebec, Canada, has found that a synthetic form of THC, the active ingredient in cannabis, is an effective anti-depressant at low doses. However, at higher doses, the effect reverses itself and can actually worsen depression and other psychiatric conditions, like psychosis.
For many years, it has been known that depletion of serotonin, a neurotransmitter in the brain, leads to depression. Selective Serotonin Reuptake Inhibitors, or SSRIs, like Prozac and Celexa enhance the availability of serotonin in the brain. Interestingly, this study offers the first evidence that a chemical within cannabis can also increase serotonin, at least at lower doses.
Laboratory animals were injected with synthetic cannabinoid and then tested with the forced swimming test (also called the behavioral despair or Porsolt test), which is used to measure the effect of antidepressant drugs on the behavior of lab animals. Researchers observed an antidepressant effect, along with increased activity in the neurons that produce serotonin. However, increasing the cannabinoid dose beyond a set point completely undid the benefits, according to Dr. Gabriella Gobbi of McGill University.
Low doses had a powerful anti-depressant effect, but when that dose was increased, the serotonin in the rats' brains dropped below the level of those in the control group. Researchers actually demonstrated a double effect: At low doses, it increases serotonin, but at higher doses the effect is completely reversed.
The anti-depressant and intoxicating effects of cannabis are due to its chemical similarity to natural substances in the brain known as "endo-cannabinoids," which are released under conditions of high stress or pain, explained Dr. Gobbi. Endocannabinoids interact with the brain through structures called cannabinoid CB1 receptors. This study demonstrates for the first time that these receptors have a direct effect on the cells producing serotonin, a neurotransmitter that regulates the mood.
Dr. Gobbi, a psychiatrist, explored cannabis' potential as an anti-depressant because several of her patients suffering from depression used to smoke cannabis. Scientific literature also provided some evidence that people treated with cannabis for MS or AIDS showed a big improvement in mood disorders. But there were no laboratory studies demonstrating the anti-depressant mechanism of action of cannabis.
Controlling the dosage of natural cannabis is difficult, particularly when it is smoked, so there is risk associated with using it directly as an anti-depressant.
Future research will focus on a new class of drugs which enhance the effects of the brain's natural endocannabinoids.
The study was published in the October 24 issue of The Journal of Neuroscience.
STUDY TESTS ADULT STEM CELLS FOR MS
A recent study by a group of neurologists at Jerusalem's Hadassah University Hospital at Ein Kerem attempted to help individuals with MS and amyotropic lateral sclerosis (ALS) by injecting their spinal columns with large numbers of adult stem cells taken from their bone marrow and multiplied in culture.
Previously, in experiments of this treatment performed on lab mice with an animal model of MS, researchers discovered that after a month or two (equivalent to a year or two in human time), 90 percent of the mice's neurons remained intact, with no breakdown in their myelin sheath.
The human trial, conducted by Professor Dimitrios Karousis, senior neurologist at Hadassah, Professor Shimon Slavin, world renowned stem cell expert at Hadassah, and Professor Tamir Ben-Hur, head of neurology at Hadassah, included 25 people - nine with MS and 16 with ALS. Participants in the study received one "dose" of adult stem cells, which were taken from their bone marrow, processed, and then grown in a special culture that generates 50 million cells within two months. These cells were then injected into the participant's spinal column.
While most of the patient's conditions improved or stabilized, the study did not have a control group for comparison. As with other stem cell treatment options, researchers do not yet know how long the effect may last or how significant the improvement may be. Clearly, stem cells hold potential in treating MS but further research is needed and it is too early to know how successful such a treatment will be over the long term.
BETTER INFORMATION IS KEY TO UTILIZING TECHNOLOGY
Research shows that technology plays a vital role in helping many people with MS manage and live with their disease, yet relatively few are using the technology that could help them overcome many of the challenges that accompany the disease.
The research study, titled Staying Connected: An Investigation of How Technology Affects People Living with MS, was commissioned by the MS Technology Collaborative, an alliance that includes Microsoft, the National MS Society, and Bayer HealthCare Pharmaceuticals. Findings were based upon telephone interviews and online surveys of 2,390 American adults with MS conducted by StrategyOne, an applied-research consulting firm.
According to the study, 70 percent of respondents say they are interested in using and keeping up with the latest technology, and nearly half agreed that technology plays a vital role in helping them live with MS. People with more severe types of MS, or those whose symptoms are more pronounced, place an even higher value on using technology to help them cope with their disease.
Yet, despite interest and a belief in the benefits of technology among people with MS, few actually use it to help relieve their symptoms and make everyday tasks easier. The study found that people with MS need better information about how technology can specifically help them address their MS symptoms. Thirty-three percent of those surveyed say they have trouble typing on a standard computer keyboard, for example, but only 5 percent say they have turned to technology for a solution, such as using an alternative keyboard or a voice recognition program. Similarly, 30 percent say they have trouble reading text on a standard screen, but only 6 percent have made adjustments, such as increasing font sizes or using screen magnifiers.
The study also reinforced the potential value of technology in pursuing and maintaining a professional career-especially for people with MS. Forty-nine percent of the people with MS who responded to the survey are currently employed, and nearly 40 percent of those say technology makes it possible for them to keep working with their disease. That number is highest among people with more severe MS symptoms.
People with MS are aware of accessible technology; they just aren't using it. According to the study, 77 percent of people with MS say they have heard of at least one type of accessible technology, but only 39 percent have ever used an accessible technology product. And only 23 percent say they have ever made changes to a computer-adjusting settings, adding new software, acquiring a more accessible version of the technology-to help them manage an MS-related challenge.
The research found that "better information" is the number one thing that would empower people with MS to take advantage of accessible technology. More than half of the respondents (56 percent) say that it would be easier to make changes if they had better information about the tools and resources available to them.
Forty-eight percent of those surveyed cited affordability as a potential barrier to using technology to manage their MS more effectively, even though many adaptive technologies are actually standard features in most computers. As an example, Windows Vista, the newest operating system from Microsoft, provides many easy-to-use accessibility settings that include screen magnification, speech recognition, and many other helpful features. The new Ease of Access Center in Windows Vista makes it easy to find and turn on accessibility features and provides personalized recommendations.
To help people with MS learn more about accessible technology and related resources, the MS Technology Collaborative has put together a website called MyMSMyWay.com. The group also launched a personalized, interactive, Web-based program called "Snapshot," which is intended to show people with MS how technology can adapt to their changing needs and help them use it to achieve their goals. In addition, Microsoft provides extensive information about accessible technology on its corporate website.
GET READY FOR YOUR DISABILITY INTERVIEW
If you want to get a head start on your disability application, you may want to check out the "Disability Starter Kit" at http://www.socialsecurity.gov/disability. This starter kit provides specific information to guide you through the process used by the Social Security Administration to determine if you qualify for disability benefits.
Each kit includes a fact sheet that will address common questions that may arise when filing for your disability benefits, such as whether or not your condition is severe enough to meet the eligibility requirements, and helpful hints on speeding up the decision-making process. A checklist and worksheet are also included to help you gather and organize the documents and information that will be required.
To view the disability starter kit log on to http://www.socialsecurity.gov/disability or call 1-800-772-1213 to request a mailed copy. If you are more comfortable speaking in a language other than English, free interpreter service is available upon request. To learn more, log on to http://www.socialsecurity.gov/multilanguage/langlist1.htm.
LEARN TO LIVE WELL WITH MSF TV
Last year, we launched our own cable TV program, "Living Well with MS." Our goal was to educate viewers about MS and the programs and services available through the MSF. We selected a diverse panel of guests to provide useful information on relevant topics. Now, these programs are available for viewing at your leisure on our website.
Guests include Jeff Segal, a personal trainer with MS who was recently named NCA Personal Trainer of the Year. He offers helpful tips and the motivation needed to begin an appropriate exercise program designed to accommodate MS-related challenges such as heat sensitivity, fatigue, vertigo, mobility limitations, spasticity, and more.
Valerie Peterson, of Peterson Law Office, P.A., provides guidance on estate planning, Medicaid planning and qualification, Elder Law and Life Care Planning.
Carla Albano, Owner and Administrator of Alternative Home Health Care, discusses options for getting your health needs met while remaining in the home.
Upcoming shows focus on yoga, physical, occupational and speech therapy. New content will be added regularly.
So, next time you have a free moment, sit, relax, and log onto MSF TV at http://msfocus.org/online_msftv.php.
CALLING ALL MS NURSES!
All MS nurses are cordially invited to join us for a Voyage to a Better Understanding of MS Care - a five-night Bermuda Cruise.
This educational program will be held aboard Royal Caribbean's Explorer of the Seas. We'll set sail from Cape Liberty Cruise Port in New Jersey on Sunday, May 4th and return on Friday, May 9th, 2008. Ports of call include Cape Liberty Cruise Port (NY Harbor) and Kings Wharf, Bermuda.
This program will provide up to 12.95 contact hours through the Texas Nurses Association, an accredited approver of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.
Presented by MS nurses from across the country, the educational curriculum will provide current information needed by nurses who care for patients with MS, prepare nurses for the International Organization of MS Nurses (IOMSN) certification board exam, and may also be applied to recertification credits.
Space for this program is limited and passports are required. For more information, call Fun Cruise & Travel toll-free at 1-888-826-9660.
JOIN US FOR THE 2008 CRUISE FOR A CAUSE
Our upcoming MSF Cruise for a Cause is scheduled for March 1st through March 6th 2008. This five-night Western Caribbean Cruise, aboard Royal Caribbean's Navigator of the Seas, will motivate, educate and empower you to live well with MS.
This year's speakers include Ben Thrower, M.D., Randall Schapiro, M.D., Rosalind Kalb, Ph.D. and Nicholas LaRocca, Ph.D.
To make a reservation, contact Fun Cruise & Travel toll-free at 888-826-9660 or visit http://www.funcruiseforacause.com.
APRIL 2007 - MSFYi
"The world is a dangerous place, not because of those who do evil, but because of those who look on and do nothing."
~ Albert Einstein
In This Issue:
* EXPRESS YOURSELF WITH ART THERAPY
* PROLACTIN STIMULATES REMISSION IN ANIMAL MODEL OF MS
* HYPERTENSION DRUG IMPROVES SLEEP FOR VETS
* HERBAL TREATMENT MAY MINIMIZE UTIs
* NATALIZUMAB REDUCES VISUAL IMPAIRMENT
* MS REPOSITORY LISTED AT NIH CLINICAL TRIAL SITE
* FOOD FOR THOUGHT
* BED SORES NOT ALWAYS PREVENTABLE
* HEUGA CENTER OFFERS CAN DO PROGRAM
* DOES HEALTHY LIFESTYLE MINIMIZE MS RISK?
* STAY COOL WITH THE MSF COOLING PROGRAM
* AUDIO VERSION OF MSFOCUS AVAILABLE
* 2008 CRUISE FOR A CAUSE ANNOUNCED
* NEW READS FROM THE MSF LENDING LIBRARY
EXPRESS YOURSELF WITH ART THERAPY
You don't have to be an artist to express your thoughts and feelings about MS! Use your imagination and create your own 4x6" sketch, illustration, montage, poem, haiku, collage, etc. on paper or on your computer. Whatever you're feeling, express it and send it to Postcard Blog at HealthTalk.
Visit http://blog.healthtalk.com/multiple-sclerosis/postcards/ to see other people's postcards, submit your own art, or leave a comment.
For 20 years, HealthTalk has been a resource for comprehensive information on managing chronic illnesses effectively.
PROLACTIN STIMULATES REMISSION IN ANIMAL MODEL OF MS
Researchers working with a mouse model of MS have found that the disease went into remission when the mice became pregnant and that the hormone prolactin, a naturally occurring hormone associated with breast development and lactation, could mimic this condition in non-pregnant animals.
Investigators at the University of Calgary in Alberta, Canada, were looking for an explanation at the molecular level as to why MS often goes into remission during pregnancy.
They reported in the February 21, 2007, issue of the Journal of Neuroscience that pregnant mice showed an increase in the production of myelin-forming oligodendrocytes and in the number of myelinated axons in the central nervous system. The pregnant mice had twice as many oligodendrocytes and continued to generate new ones during pregnancy. After giving birth, these mice also had 50% more myelin coating their nerve cells. A significant additional finding was that the hormone prolactin could stimulate remyelination in non-pregnant animals.
"It was thought that during pregnancy, their immune systems no longer destroyed the myelin," said senior author Dr. Samuel Weiss, professor of neurosciences at the University of Calgary. "But no previous study has tested whether pregnancy actually results in the production of new myelin, which may explain improvement of symptoms."
"There is ongoing human research into the possible benefits of the hormone estriol in MS," comments Ben Thrower, M.D. "Early animal trials are looking at prolactin, a different hormone. These animal models suggest that prolactin may play role in myelin production. Prolactin levels are typically elevated during pregnancy and while breastfeeding."
HYPERTENSION DRUG IMPROVES SLEEP FOR VETS
MS is prevalent in the veteran population, particularly among aging veterans, although no definitive link has been established. According to federal researchers, a commonly used hypertension drug improves sleep and reduces traumatic nightmares in veterans with post-traumatic stress disorder (PTSD).
"This is the first drug that has been demonstrated effective for PTSD nightmares and sleep disruption," said Dr. Murray A. Raskind of the Veterans Affairs Puget Sound Health Care System in Seattle and leader of the study. "These nightmares are heavily troublesome to veterans."
Dr. Raskind estimated that as many as half of the 10 million veterans and civilians with PTSD had nightmares that could be helped by the drug, prazosin, sold under the brand name Minipress. At least 5,000 veterans in the VA system in the Northwest are already receiving generic prazosin, he said.
In the study, Raskind and colleagues enrolled 40 veterans. Half received the drug and half took a placebo for eight weeks.
In the journal Biological Psychiatry, researchers report that those receiving the drug experienced significantly improved sleep quality, reduced traumatic nightmares, a better overall sense of well-being and an improved ability to function.
Side effects included nasal congestion, headaches and dry mouth.
"This drug has been taken by many people for decades," Raskind said. "If there were serious long-term adverse side effects, it is likely we would know about them by now."
Three larger studies of the drug are underway or will be shortly. Scientists have not yet determined whether exposure to combat stress, experimental vaccines, toxins released from oil-well fires, sarin from the destruction of weapons caches, pesticides, pyridostigmine bromide pills or some combination of these triggers MS.
HERBAL TREATMENT MAY MINIMIZE UTIs
Duke University doctors have found that forskolin, an herbal product found in health food stores, may help minimize the occurrence of urinary tract infections (UTIs). Their studies also suggest that the herb, which is derived from the Indian coleus plant, may boost the ability of antibiotics to kill E. coli - the bacteria responsible for of 90 percent of bladder infections.
Duke microbiologist Dr. Soman N. Abraham and colleagues also believe they may have figured out why bladder infections often return after antibiotic treatment.
In studies in mice, they found that E. coli bacteria hide in the cells that line the bladder, rendering them inaccessible to the antibiotics. However, when the researchers injected forskolin directly into the bladder or administered it intravenously, it appeared to expel more than 75 percent of the 'hidden' E. coli, leaving the bacteria exposed to the antibiotic treatment.
While usual antibiotic treatment kills the vast majority of the bacteria, according to Dr. Abraham, small numbers of bacteria may survive the antibiotic bath by slipping into the lining of the bladder. There they lie in wait until the opportune moment - after antibiotic treatment - to come out and start multiplying again.
By revving up cellular activity, forskolin helps flush bacteria out and into the urine, where they can be killed by antibiotics.
Forskolin, which has been used in Asia for centuries for a variety of ailments, including painful urination, may prove beneficial for those with recurrent UTIs.
The researchers plan to test forskolin's efficiency when taken with antibiotics. "Now that we've seen it work quite effectively on its own, we think that in combination with an antibiotic we should be able to completely eliminate these hidden bacteria from the bladder," Dr. Abraham said.
Please note that the Food and Drug Administration does not test or regulate herbal extracts, including forskolin. More safety and efficacy data is needed. Always contact your doctor if you have or suspect you may have a UTI before trying forskolin or any other treatment.
SOURCE: Nature Medicine, published online April 8, 2007
NATALIZUMAB REDUCES VISUAL IMPAIRMENT
Natalizumab (Tysabri) reduces visual impairment and prevents further vision loss among those with relapsing MS, according to results of two multinational, Phase III clinical trials that included nearly 2200 adults with MS who had at least one relapse in the previous year.
Researchers from the Department of Neurology at the University of Pennsylvania School of Medicine examined the effects of natalizumab on low-contrast letter acuity in two trials and evaluated its usefulness a candidate test of visual function in MS.
AFFIRM and SENTINEL were randomized, double-blind, placebo-controlled, multicenter, Phase III clinical trials of natalizumab in relapsing MS. Natalizumab was evaluated as monotherapy in AFFIRM and as add-on to interferon beta-1a in SENTINEL. Vision testing was performed at 100% contrast (visual acuity) and low-contrast (2.5% and 1.25%).
The risk of clinically significant visual loss (predefined as a two-line worsening of acuity sustained over 12 weeks) at the lowest contrast level (1.25%) was reduced in the natalizumab treatment arms by 35% in AFFIRM and by 28% in SENTINEL. Mean changes in vision scores from baseline were also significantly different, reflecting worsening in non-natalizumab groups.
Researchers conclude that natalizumab reduces visual loss in patients with relapsing MS. Low-contrast acuity testing has the capacity to demonstrate treatment effects and is a strong candidate for assessment of visual outcomes in future MS trials.
Researchers temper the positive findings with a reminder that natalizumab has been associated with serious and even lethal neurologic adverse effects, including three cases of progressive multifocal leukoencephalopathy.
MS REPOSITORY LISTED AT NIH CLINICAL TRIAL SITE
Repositories are playing an increasingly important role in medical research, especially into multifactorial diseases like MS. A repository, also known as a biorepository or biobank, is a place that collects, stores, processes, and distributes biological materials (human biospecimens, such as tissue or blood) and the data (or clinical information of the donor) associated with those materials.
The Accelerated Cure Project Repository is now listed at http://www.clinicaltrials.gov/ct/show/NCT00445367?order=1, the NIH directory of clinical trials and studies. If you live near Worcester, MA; New York, NY; Baltimore, MD; Atlanta, GA; Dallas, TX; or Phoenix, AZ and you have MS, TM, NMO, ADEM, CIS, or ON - you can enroll.
This repository is projected to become the largest openly accessible, multi-disciplinary collection of bio-samples ever assembled for use in MS research.
If there is no center near you, sign up for the Accelerated Cure Project's mailing list and they'll keep you updated as additional sites are added. To learn more, click on http://www.acceleratedcure.org/repository/.
FOOD FOR THOUGHT
Did you know that eating consistently well over a period of time may reduce fatigue, improve bladder and bowel problems, increase energy, and prevent bone loss? It may also positively impact mental and emotional health, including memory and concentration. Here are a few nutritious foods that don't cost a lot and require little or no preparation.
Apples are an excellent source of pectin, a soluble fiber that can lower blood cholesterol and glucose levels. Fresh apples are also rich in vitamin C - an antioxidant that protects your body's cells from damage and helps form the connective tissue, collagen. An average-size apple has five grams of fiber and is a natural source of Vitamins A, B1, B2, Niacin, calcium, phosphorus, iron, iodine, and potassium. Apples are an affordable snack and very portable. Keep one in your car for the ride home!
Blueberries are a rich source of plant compounds called phytonutrients, which may help prevent urinary tract infections. Blueberries may improve short-term memory and promote healthy aging. Blueberries are also a low-calorie source of fiber and vitamin C - 1 cup of fresh blueberries has 83 calories, 3.5 grams of fiber and 14 mg of vitamin C. Toss them into your cereal or yogurt or bake up some blueberry muffins!
Wheat Germ, which is at the center of a grain of wheat, is responsible for the development and growth of the new plant sprout. Even though it's small, the germ is a highly concentrated source of niacin, thiamin, riboflavin, vitamin E, folate, magnesium, phosphorus, potassium, iron and zinc. The germ also contains protein, fiber and some fat. It's got a great nutty flavor. Add it to your yogurt or cereal or sprinkle it on some bread with peanut butter.
Almonds are packed with fiber, riboflavin, magnesium, iron and calcium. One heart-healthy serving provides half of your body's recommended dietary amount of vitamin E. Like all nuts, almonds provide one of the best plant sources of protein. Most of the fat in almonds is monounsaturated fat - a healthier type of fat that may help lower blood cholesterol levels. Almond slices are a nice addition to salads, rice dishes or green beans.
Red beans - including small red beans and dark red kidney beans - are good sources of iron, magnesium, phosphorus, potassium, copper and thiamin. They're also an excellent low-fat, low-calorie source of protein and dietary fiber. Red beans also contain phytonutrients that may help prevent chronic diseases such as cardiovascular disease and cancer. Add cold or hot beans to your salad for a more filling meal or spoon onto flavored rice cakes.
Sweet Potatoes are high in the antioxidant beta carotene. Beta carotene, which is converted to vitamin A in your body, may help slow the aging process and reduce the risk of some cancers. Sweet potatoes are also good sources of fiber, vitamins B-6, C and E, folate and potassium. One small sweet potato has just 54 calories, but it's also tasty and filling.
To learn more, request a copy of our booklet, Nutrition and MS. Contact us by email at firstname.lastname@example.org or call 1-888-MSFOCUS.
BED SORES NOT ALWAYS PREVENTABLE
Until recently, many healthcare professionals believed that bed sores (also known as pressure ulcers or decubitus ulcers) indicated negligent care. Frequent turning, attentive skincare and proper nutrition could almost eliminate the occurrence of these painful and sometimes fatal skin breakdowns - or so it was believed. In fact, this belief was once so strong that many long term care facilities were held responsible for paying large legal settlements to families of patients who developed pressure sores while under their care. But new research and more understanding of how pressure ulcers occur is challenging this belief.
Now, most experts believe that pressure ulcers develop, not only from lying in the same position for hours at a time, but also because of a malfunctioning of the blood vessels that transport blood, oxygen and glucose to the skin and underlying tissue. Many ill patients experience poor blood flow to the brain, kidneys, and other organs. For example, when a healthy person puts pressure on the skin for an extended period of time, blood flow dramatically increases once the pressure is relieved. But in those who are ill this response seems to fail. As a result, even when a person is repositioned frequently, pressure ulcers may still develop.
This impairment in blood flow also seems to involve tissue underneath the skin, making them almost impossible to detect until they have progressed to an advanced stage.
In research studies, a substantial number of patients still develop bed sores even when all preventive strategies are used. For example, a 2006 study published in The British Medical Journal found that approximately 10 percent of hospitalized patients over the age of 55 who slept on a specialized mattress that minimizes pressure on the buttocks developed bed sores anyway.
It's not easy to distinguish between unavoidable bed sores and those that are the result of negligent care. According to researchers, bed sores that develop during or shortly after a major illness are often unavoidable, while those that develop in stable nursing home patients probably represent a quality of care issue. Additionally, for reasons that are not entirely clear, many pressure ulcers in those with spinal cord injuries may also be unavoidable.
In patients who don't have spinal cord injuries and aren't acutely ill, there's much that can be done to reduce the risk of developing pressure ulcers and prevent their complications, including frequent repositioning and a high-protein diet. Topical creams, antibiotic ointments, and frequent dressing changes can help wounds heal more quickly and lower the rate of infections. Appropriate pain management is also essential.
Although many healthcare facilities have adopted these measures, pressure ulcers are a growing concern. According to data from the Department of Health and Human Services' Agency for Healthcare Research and Quality (AHRQ), the number of pressure ulcers in U.S. hospitals increased by 63 percent between 1993 and 2003. While much of this increase may be attributed to an aging population, a lack of awareness among doctors and other healthcare professionals may also play a role.
HEUGA CENTER OFFERS CAN DO PROGRAM
The Heuga Center is a non-profit organization that provides medical, educational and research programs for people with MS. The Heuga philosophy is that every person diagnosed with MS deserves the opportunity to maintain their overall health and well-being so that they may live a healthy, active, fulfilling life.
The Heuga Center's five-day CAN DO Program takes a whole-person approach to managing MS. Participants and support partners become fully involved in creating a personal lifestyle program based on specific needs and goals. Participants focus on what they can do, instead of what they cannot, by emphasizing general health, physical fitness and psychological well-being. CAN DO teaches individualized lifestyle strategies that include exercise, nutrition, self-management, social interaction and support. The extensive component for support partners addresses their individual needs and concerns and educates them about the disease.
If you are interested in attending, don't let finances stop you! The program fee is $2,000 and includes meals. But need-based scholarships are available for all or part of the program fee. In fact, more than half of CAN DO participants over the last few years were scholarship recipients.
"The five days gave me a whole new extended family, several small personal triumphs, and a confidence unequaled in memory," one CAN DO graduate said. "I had high expectations for my participation in this program, and you exceeded them wildly, extravagantly, and beautifully."
CAN DO Programs are offered regularly throughout the U.S. and Canada. Programs are limited to the 25 participants and their support partners. Programs fill quickly, so apply early. Applications must be received four weeks prior to the program date.
Upcoming Program Dates:
Plymouth, Minnesota - August 1-5, 2007 - Application deadline: June 1
Vail, CO - October 3-7, 2007 - Application deadline: August 3
For more information, contact Anna Ingram at 800-367-3101 ext. 1280 or visit http://www.heuga.org.
DOES HEALTHY LIFESTYLE MINIMIZE MS RISK?
Compliant members of the Church of Jesus Christ of Latter Day Saints (LDS, Mormons) have a low incidence of heart and lung disease that could be linked to their abstinence from alcohol, tobacco, coffee, tea, and illegal drugs.
Consequently, researchers from Essex, UK and Salt Lake City, Utah initiated a study to determine whether MS was less frequent in this religious group.
Between 1998 and 2001, researchers were granted access to anonymous medical claim histories of Deseret Mutual Benefit Association (DMBA), a medical insurance agency that provides health insurance coverage to the employees of this Church and their families (about 60,000 people). All employees must observe Church health standards.
Patients who had made a claim for diagnosis or treatment of MS were identified with the diagnostic code 340 (ICD 9). Duplicate names were removed and patients were then classifed by age and gender at 10-year intervals from 1 to 64 years. Figures for subjects over 64 years were not reliable and excluded. Age and sex-specific prevalence rates were calculated for each year using these cases and all active employees of the Mormon Church. This information was combined with prescribing records for disease-modifying treatment, principally beta-interferon and Copaxone, medications specific to MS.
Using various search strategies researchers derived an approximate MS prevalence of 45-64/100,000. Comparing MS rates from Utah with other states of comparable latitude suggests that strict Mormons have a lower than expected MS prevalence which may be linked to their healthy lifestyle.
A total of 148 patients with MS were identified from a population at risk of 251,563. This gives an overall prevalence of 58.8/100,000. The female rate was 81.1/100,000 and male 37.7/100,000.
This study is far from conclusive and potential pitfalls in interpretation obviously exist. However, there certainly is evidence that exercise produces numerous physical and emotional benefits in MS and there is also suggestive evidence that a diet with decreased saturated fat and increased polyunsaturated fat, especially Omega 3, such as fish oil, may be helpful.
STAY COOL WITH THE MSF COOLING PROGRAM
Cooling is an easy strategy that often rapidly relives the symptoms of overheating, including improvement in muscle strength, fatigue, and balance. Now, you can experience the benefits of cooling through the MSF's 2007 Cooling Program. We offer the practical and popular cooling vest, along with brim hats, wristbands, neckties, and other cooling accessories.
Applications are available online at http://www.msfocus.org/programs_coolapp.php or by calling 1-888-673-6287. Previous applicants who did not receive cooling items are welcome to reapply. Applications are accepted through June 1st.
AUDIO VERSION OF MSFOCUS AVAILABLE
If you or someone you know is unable to read MSFocus or would simply prefer it on audio CD, please send an email request to email@example.com or call 888-MSFOCUS (673-6287). The audio version of MSFocus is generally available four to six weeks after the print version.
2008 CRUISE FOR A CAUSE ANNOUNCED
Next Year's Cruise for a Cause will depart from Fort Lauderdale on Saturday, March 1st. This five-night Western Caribbean Cruise, aboard Royal Caribbean's Navigator of the Seas, will visit the ports of Ocho Rios, Jamaica and Georgetown, Grand Cayman. Stay tuned for more information or contact Fun Cruise & Travel at 1-888-826-9660 or visit http://www.funcruiseforacause.com.
NEW READS FROM THE MSF LENDING LIBRARY
The MSF Lending Library delivers books, CDs, and DVDs to your door upon request, along with a convenient postage-paid envelope for easy return! You may borrow books at http://msfocus.org/publication_lending.php or by calling 1-888-MSFOCUS (673-6287).
EXERCISE FOR MULTIPLE SCLEROSIS
By Brad Hamler, Licensed Post-Rehabilitation Specialist
With a Forward By Ben Thrower, M.D.
Want to feel better and improve your quality of life? Here is a safe and effective, easy-to-follow exercise program that can help you reduce fatigue, increase physical strength, compensate for loss of balance, decrease spasticity, and more.
100 QUESTIONS & ANSWERS ABOUT MS
By Dr. William Sheremata
(Jones and Bartlett Publishers, Inc., 2006)
This book answers the most commonly asked questions by people with MS. The author, who is certified in neurology by the Royal College of Physicians (Canada) and served as director of the MS Center at the University of Miami School of Medicine, provides reader-friendly scientific information, while never losing sight of the disease's emotional impact. Commentary by Karen Miller, who was diagnosed with MS in 1996, allows the reader to understand how all of this information pertains to them on a personal level.
THE COMFORT OF HOME
A Complete Guide for Caregivers
By Maria M. Meyer with Paula Derr, RN
(CareTrust Publications, LLC, 2007)
This guide to in-home care offers practical tips for the activities of daily living as well as more complicated and stressful situations a caregiver may face, such as prevention of pressure sores, giving a bed bath, catheters, financial issues, transfers, etc. There are also helpful hints, lots of resources for additional information and illustrations throughout.
Multiple Sclerosis Foundation Internet Newsletter
We value your opinions!
Please let us know what you think of the MSFYi, this month's features, or send ideas for future issues.
JANUARY 2007 - MSFYi
"When we feel stuck, going nowhere - even starting to slip backward - we may actually be backing up to get a running start." ~ Dan Millman
In This Issue:
* RESPITE FOR CAREGIVERS!
* PARASITIC INFECTION MIGHT BENEFIT THOSE WITH MS
* JOIN THE MS GLOBAL DINNER PARTY!
* PETITION TO INCREASE FUNDING FOR MS RESEARCH
* 'SUNSHINE VITAMIN' PROTECTS AGAINST MS
* ELEVATED URINARY EXCRETION OF ALUMINUM AND IRON
* THIS MARCH - DANCE TO CURE MS!
* NEW ASSISTANCE PROGRAM FOR THOSE ON BETASERON
* STEM CELL SUMMIT HIGHLIGHTS AVAILABLE
* MBP8298 PHASE III SPMS TRIAL CLEARED BY FDA
* INDIVIDUALS WITH MS SOUGHT FOR MARKET RESEARCH
* NATIONAL MS EDUCATION & AWARENESS MONTH® EVENTS
* MSF HOSTS 3rd ANNUAL NURSE SYMPOSIA
* 2007 MSF CRUISE FOR A CAUSE TO ALASKA
RESPITE FOR CAREGIVERS!
On December 21, 2006, the Lifespan Respite Care Act of 2006 (HR 2348) was signed into law. This is a long-awaited victory for the millions of Americans caring for a loved one in the home.
The new law will authorize $289 million over five years for state grants to develop Lifespan Respite Programs to help families access quality, affordable respite care. In the Act, Lifespan respite programs are defined as "coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs."
Specifically, the law authorizes funds for the development of state and local lifespan respite programs; planned or emergency respite care services; training and recruitment of respite care workers and volunteers; and caregiver training.
In time, the Lifespan Respite Care Act will reduce family stress as well as the risk of abuse and neglect. It will allow families to stay involved in their communities and establish additional support systems. It will allow families and caregivers to revitalize and avoid burnout. It will improve the relationship between caregiver and care-receiver. In the long run, it will save public funds by reducing the need for residential, hospital, and other institutional living.
The passing of this bill into law is great news for caregivers everywhere - and it's about time!
PARASITIC INFECTION MIGHT BENEFIT THOSE WITH MS
Parasitic infections may actually benefit people with MS, suggests a study by researchers in Argentina. Such infections may affect the body's immune response in a way that alters the course of the disease. The study appears in the January issue of the Annals of Neurology.
While previous studies conducted in animals found that parasite infections could affect the course of autoimmune diseases, this is the first human study to examine the relationship between parasite infections and MS.
The study included 12 MS patients with a parasite infection and 12 MS patients who were parasite-free. The patients in both groups had a similar disease course, and were followed for an average of 4.6 years.
During the study, there were three clinical relapses of MS among those infected with a parasite, compared to 56 relapses in the group of uninfected MS patients. Those in the infected group were less likely to suffer increased disability due to MS.
The researchers also found that infected patients had much higher numbers of anti-inflammatory cytokines. These findings provide evidence that an autoimmune response caused by a parasite infection can decrease the normal inflammatory response associated with MS.
Parasite infections generate much higher levels of three types of immune cells, called regulatory T cells. While fighting the parasite infection, these three types of cells also happen to suppress a different part of the immune system that attacks myelin.
Earlier research, conducted at the Universities of Wisconsin and Iowa, found that the ingestion of worm eggs by mice with EAE (the commonly used animal model of MS) had the same beneficial effect. Findings were reported in 2003 (International Immunology, Vol. 15, No. 1, pp. 59-69).
"This is really interesting," comments MS Medical Advisor Ben Thrower. "People have wondered if such findings might explain some of the geographic distribution of MS, i.e., higher prevalence as one moves towards more temperate climates. Parasitic infections are more common in the tropics, where the prevalence of MS is lower. Parasitic infections generate a Th2 response. In contrast, viral infections are more common in temperate climates. Viruses induce a Th1 response, the same type of response that is overactive in MS. We may be able to generate a Th2 response using inactivated parasite eggs. So, it may be possible to obtain the 'good' Th2 immune response without actually developing a parasitic infection."
More On Parasites . . .
A parasite is an organism that lives in or on and takes its nourishment from another organism. A parasite cannot live independently. Parasitic diseases include infections by protozoa (a single-cell organism that can only divide within its host organism), helminthes (worm-like animals), and arthropods (insects).
JOIN THE MS GLOBAL DINNER PARTY!
Here's the chance to be a part of something big!
The Multiple Sclerosis International Federation (MSIF) invites us all to join the MS Global Dinner Party to show our commitment to helping people with MS and raising awareness of the disease worldwide.
The MS Global Dinner Party 2007 will be held on Saturday, February 24th, 2007. Events can be held for friends, family, neighbors, or co-workers, and can range from formal catered dinners to casual home gatherings. Rather than bringing a gift for the host, everyone invited to a Global Dinner Party event is asked to make a donation to support the fight against MS.
Find out more about participating in the MS Global Dinner Party 2007. It's fun, it's easy, and you can register online. MSIF will even send you a Global Dinner Party Host Pack. Interested? Click here: http://www.msif.org/en/news_press/news/gdp_2007.html.
PETITION TO INCREASE FUNDING FOR MS RESEARCH
Would you like to see an increase in federal funding for MS research?
The National MS Society is circulating a petition to collect at least 200,000 signatures from people who support additional federal funding for medical research for MS.
If you have MS, know someone with MS, or would like to help end its devastating effects, sign the petition today. Then forward it to someone you know.
Visit http://capwiz.com/nmss/issues/alert/?alertid=9167296&type=CU to learn more.
'SUNSHINE VITAMIN' PROTECTS AGAINST MS
Plenty of vitamin D seems to help prevent MS, according to a study in more than 7 million people which offers some of the strongest evidence yet of the power of the 'sunshine vitamin' against MS. The study appeared in the December 20 Journal of the American Medical Association.
The research found that Caucasion members of the U.S. military with the highest blood levels of vitamin D were 62 percent less likely to develop MS than people with low levels.
There was no such connection in blacks or Hispanics, possibly because there were so few in the study. Also, the body makes vitamin D from sunlight, and the pigmented skin of blacks and other dark-skinned ethnic groups doesn't absorb sunlight as easily as pale skin.
The new research replicates previous findings in smaller studies that examined why MS has been more common in regions farther from the equator, where there is less intense year-round sunlight.
"This is the first large prospective study where blood levels are measured in young adults and compared to their future risk. It's definitely different and much stronger evidence," said Dr. Alberto Ascherio, senior study author and associate professor of nutrition at Harvard's School of Public Health. "If confirmed, this finding suggests that many cases of MS could be prevented by increasing vitamin D levels," Ascherio said.
Still, the findings don't prove that a lack of vitamin D can cause MS, so it's too early to recommend that people take vitamin D pills to avoid the disease.
The MS researchers worked with the Army and Navy in analyzing blood samples of military personnel stored by the Department of Defense. Military databases showed that 257 service men and women were diagnosed with MS between 1992 and 2004. The increased MS risk was especially strong in people who were younger than 20 when they entered the study. The researchers said these findings suggest that vitamin D exposure before adulthood could be particularly important.
There is some evidence that the incidence of MS is increasing in sunny regions including the South and West, possibly because people are avoiding the sun or using sunscreen to avoid skin cancer. Such practices have likely contributed to vitamin D deficiencies in adolescents and young adults.
In areas of low sunlight, supplements provide a reasonable alternative for vitamin D intake. But adequate intake of calcium and magnesium must accompany vitamin D supplementation as studies in mice have shown that calcium levels strongly affect the action of vitamin D.
Vitamin D is found in fortified milk and oily fish, but it's hard to get enough from diet alone. Sunlight is the biggest source of vitamin D, which is needed for strong bones.
ELEVATED URINARY EXCRETION OF ALUMINUM AND IRON
UK researchers from Keele University used a battery of techniques to determine if the urinary excretion of markers of oxidative damage - iron and the environmental toxin, aluminum, and its antagonist, silicon - are altered in relapsing-remitting MS (RRMS) and secondary-progressive MS (SPMS).
Urinary concentrations of oxidative biomarkers, MDA and TBARS, were not found to be useful indicators of inflammatory disease in MS. However, urinary concentrations of iron, another potential marker for inflammation and oxidative stress, were significantly increased in SPMS, but were not significantly increased in RRMS.
Urinary concentrations of aluminum were significantly increased in both RRMS and SPMS. The levels of aluminum excretion in the former group were similar to those observed in individuals undergoing metal chelation therapy (an IV procedure in which chemicals that bind to metals are given for health reasons, such as lead poisoning).
The excretion of silicon was lower in RRMS, and significantly lower in SPMS. Increased excretion of iron in urine supported a role for iron dysmetabolism in MS. Levels of urinary aluminum excretion, similar to those seen in aluminum intoxication, suggested that aluminum may be a previously unrecognized environmental factor associated with the etiology of MS.
If aluminum is involved in MS then an increased dietary intake of its natural antagonist - silicon - might be a therapeutic option.
Silicon was once readily available to us through our diet. Today, modern food processing eliminates most of the silicon by removing the bran, which is the fibrous, high-silicon part of the plant. Silicon-rich foods include oats, potatoes, barley and millet, which refers to a variety of grains.
"It is likely that MS involves both genetic and environmental factors and research is rapidly unraveling the genetic pieces of the puzzle," comments MSF Medical Advisor, Ben Thrower, M.D. "To date, much of the focus on environmental factors has been on viruses, such as the Epstein-Barr virus. This study provides evidence that aluminum could play a role in the etiology of MS. The presence of high urine aluminum concentrations could mean more environmental exposure to the metal in people with MS. An alternative explanation is that aluminum levels in the brain and urine increase as a result of the damage caused by demyelination and axonal loss. Hopefully, larger studies will follow."
THIS MARCH - DANCE TO CURE MS!
Volunteer Deb Dufault is hosting a dance benefit to raise funds and awareness for Accelerated Cure Project for MS, a national non-profit dedicated to curing MS by determining its causes. Dance to Cure MS will be a fun night out for adults to socialize, dance and eat - but most importantly - to provide hope to those with MS. The event will take place on Friday, March 2nd at The Chateau in Andover, Massachusetts.
Because this event will raise awareness of MS and empower those living with the disease, it has been designated a National MS Education & Awareness Month event by the Accelerated Cure Project.
For more information, call Deb Dufault at 603-434-9241 or send an email to firstname.lastname@example.org.
NEW ASSISTANCE PROGRAM FOR THOSE ON BETASERON
Berlex has launched a new Patient Assistance Program to help ensure that Betaseron® (interferon beta-1b) is available to people with MS who, after exhausting all other avenues of coverage and assistance, cannot otherwise afford it.
The Betaseron Patient Assistance Program replaces the Betaseron Foundation, which ceased operations at the end of 2006. All participants who were active in the Betaseron Foundation at the end of 2006 who continue to meet the eligibility criteria will be transitioned into the new program. Enrollment is also available to new participants.
Similar to the Betaseron Foundation, participants in the new Betaseron
Patient Assistance Program will:
* Receive assistance in the form of medication
* Pay a participation fee for the program
* Meet eligibility based on financial and other relevant criteria
* Reapply for assistance every year
Participants will also receive medication training, access to live nursing support (24/7), reimbursement counseling, and other services offered through the MS Pathways program.
To learn more, please contact the Betaseron Patient Assistance Program at
STEM CELL SUMMIT HIGHLIGHTS AVAILABLE
To better understand and further explore the potential of stem cells in MS, the MS Society and the MS International Federation hosted a stem cell research summit from January 16-19, where a team of the world's leading experts in stem cell research collaborated and shared their expertise.
While this summit was structured for a small number of participants from the scientific community, key findings and highlights from the meeting are available to the MS community through a special webcast and/or podcast series.
MBP8298 PHASE III SPMS TRIAL CLEARED BY FDA
While the MBP8298 Phase II/III study has been ongoing at trial sites across Canada and Europe, BioMS has now received clearance from the U.S. Food and Drug Administration (FDA) for the initiation of a Phase III clinical trial to investigate the drug as a treatment for patients with secondary progressive MS here in the U.S.
MBP8298 is a synthetic Myelin Basic Protein peptide (MBP) comprised of 17 amino acids. Administered as an intravenous injection, five minutes or less in duration, every six months, the drug is expected to induce immunological tolerance specific to the injected antigen.
The U.S. Phase III trial, named MAESTRO-03, will be enrolling approximately 510 patients who will be administered either MBP8298 or placebo intravenously every six months for a period of two years.
The primary clinical endpoint for the trial is defined as a statistically and clinically significant increase in the time to progression of the disease as measured by the Expanded Disability Status Scale in patients with HLA-DR2 and/or HLA-DR4 immune response genes. Up to 75% of all MS patients are HLA-DR2 and/or HLA-DR4 positive.
Results of the Phase II and long-term follow-up treatment of progressive MS patients with MBP8298, which were published in the European Journal of Neurology, show that MBP8298 safely delayed disease progression for five years in progressive MS patients with HLA-DR2 or HLA-DR4 immune response genes.
The MAESTRO-01 trial is currently being conducted at more than 50 sites across Canada and Europe and will enroll approximately 550 patients who will be administered either MBP8298 or placebo intravenously every six months for a period of two years.
To learn more, visit http://www.biomsmedical.com.
INDIVIDUALS WITH MS SOUGHT FOR MARKET RESEARCH
Here's an opportunity for individuals with MS in the Miami/Fort Lauderdale area to earn $50 for sharing their opinions.
Rife Market Research, a Miami-based company, is seeking males and females with MS to come to their office for a 40-minute confidential interview between Tuesday, January 23rd and Thursday, February 8th. Interviews will be scheduled at your convenience.
The purpose of this study is to learn about the reading habits of individuals diagnosed with MS and the role the media plays in their life. At the close of the interview, you will receive a check for $50 for your time.
If you would like to participate or learn more about this study, please call Gita Bal at 305-620-4244.
The MSF does not support or endorse this study.
NATIONAL MS EDUCATION & AWARENESS MONTH® EVENTS
This March, we are hosting three teleconferences and two webchats. These hour-long National MS Education & Awareness Month events will educate and empower you - right from the comfort of your own living room. You will have the opportunity to ask questions if you'd like, or you may simply listen.
Participation is easy. For the teleconferences, all you need is a phone and a quiet room. For the webchats, all you need is a computer with an Internet connection.
So, don't miss out. Register today and don't forget to mark your calendars!
THE EMOTIONAL ROLLER COASTER OF MS
Robert Godsall, Ph.D.
Wednesday, March 7, 2007, 8:00-9:00 p.m. EST
YOU CAN LIVE WELL WITH MS
Ben Thrower, M.D.
Wednesday, March 14, 2007, 8:00-9:00 p.m. EST
EXERCISE FOR EVERY BODY!
Jeff Segal, NSCA-CPT, CSCS
Wednesday, March 21, 2007, 8:00-9:00 p.m. EST
To register for these teleconferences, please call 800-350-5321.
Outside the U.S., please call 706-643-5941.
HOPE FOR DEPRESSION
Frederick W. Foley, Ph.D.
Sunday, March 4, 2007, 5:00 p.m. EST
MSFRIENDS OPEN CHAT
Moderated by MSF
Sunday, March 11, 2007, 5:00 p.m. EST
For more information call: 888-MSFOCUS or visit www.msfocus.org. From the homepage, click on Calendar of Events.
MS Awareness Kits, filled with educational literature created for those with MS, their families and care partners, are going quickly. Request yours today by sending an email to email@example.com.
If you have a website, newsletter, e-newsletter or blog, help us get the word out about National MS Education & Awareness Month. Do it for yourself. Or, do it for someone you know who is newly diagnosed. Whatever you do, play a part in National MS Education & Awareness Month!
MSF HOSTS 3rd ANNUAL NURSE SYMPOSIA
All MS nurses are invited to join us for a Voyage to a Better Understanding of MS Care - a four-day Western Caribbean Cruise. This educational program, aboard Carnival Cruise Line's Imagination, will set sail from Miami on Thursday, March 8 and return on Monday, March 12th, 2007. Ports of call include Key West, Florida and Calica, Mexico.
This program will provide up to 13.2 contact hours through the Texas Nurses Association, an accredited approver of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.
Presented by MS nurses from across the country, the educational curriculum will provide updated and pertinent information needed by nurses who provide care for patients with MS. The educational program will also prepare the nurse for the International Organization of Multiple Sclerosis Nurses (IOMSN) certification board examination and may also be applied to re-certification credits.
Space for this program is limited and passports are required. For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit http://www.funcruiseandtravel.com/msf2.htm.
2007 MSF CRUISE FOR A CAUSE TO ALASKA
The MSF Cruise for a Cause offers innovative, educational programs at sea for individuals with MS. This year, we will follow the Inside Passage from Seattle, Washington to Skagway, Alaska.
Don't miss this seven-night adventure, from June 8th through the 15th, aboard Royal Caribbean's Vision of the Seas. Ports of call include Juneau, Skagway, Tracy Arm Fjord, Prince Rupert, British Columbia, and Seattle, Washington!
Passports required! For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit http://www.funcruiseandtravel.com/msf2.htm.
"I WILL LOVE THE LIGHT BECAUSE IT SHOWS ME THE WAY. YET I WILL ENDURE THE DARKNESS FOR IT SHOWS ME THE STARS."
~ OG MANDINO
In This Issue:
* RESEARCHERS UNRAVELING GENETICS OF MS
* RESPONSE TO INTERFERON BETA PREDICTED BY MRI
* NICE GIVES GO-AHEAD TO TYSABRI IN UK
* FDA REQUIRES SUPPLEMENT TESTING
* EASY ACCESS TO REBIF THERAPY
* YOGA MAY COMBAT DEPRESSION/ANXIETY
* FREE BALANCE TESTING AT SAMUEL MERRITT COLLEGE
* VIEW YOUR OPTIONS FOR ADAPTIVE PHOTOGRAPHY
* ETHNICITY IN MS
* PILOT STUDY EXAMINES HIPPOTHERAPY IN MS
* FUNDRAISERS SUPPORT BRIGHTER TOMORROW GRANT
* IT'S BRIGHTER TOMORROW GRANT TIME AGAIN
* SIXTH ANNUAL CAREGIVERS' NIGHT OUT CONTEST
* CALLING ALL MS NURSES!
* 2008 CRUISE FOR A CAUSE
RESEARCHERS UNRAVELING GENETICS OF MS
Medical researchers have made significant progress in understanding the genetics involved in MS. In two new studies, published in the July 29th online edition of the New England Journal of Medicine and Nature Genetics, three teams of researchers say they have identified, by separate methods, new genetic variants that contribute to the disease.
MS is a disease in which the body's immune system mistakenly attacks myelin. For years, the cause of MS has been considered part genetic and part environmental. Trying to identify the genes involved, however, has proven frustrating. Consequently, researchers have been speculating about what genes might be involved and then seeing if individuals with MS have abnormal variants of that gene. In recent years, researchers have suspected more than 100 candidate genes, none of which could be confirmed, except for variations in the immune system that have been known about for some time.
One team used a new, advanced method called Whole Genome Association. The other teams used the candidate gene approach. Because all three teams identified the same gene, the researchers are confident they have opened a new avenue into the cause and possible treatment of MS.
The identified gene produces a substance called the interleukin-7 receptor, a protein that allows immune system cells to respond to a control agent. Researchers believe the receptor is part of a biochemical pathway involving many genes. Defects in any of these genes may lead to MS. Researchers now believe it is possible to explore the pathway and perhaps develop treatments to remedy the disease-causing process.
The new research is the result of several large teams at universities in the U.S. and abroad who have coordinated their publications and pooled their data for analysis.
Because the course of MS is unpredictable, clinical trials are challenging. Researchers are hopeful that the interleukin-7 receptor will provide sufficient motivation to endure the expense of long clinical trials.
With these findings, researchers may be able to perform blood tests to identify people with the flawed genes and begin to develop drugs to counteract its effects.
One drug on the market, daclizumab (Zenapax), already works on interleukin-2 and is currently in a Phase II clinical trial exploring its potential use alone and in combination with other immune-modulating drugs in MS.
Unraveling the genetic mystery of MS is proving harder than other autoimmune diseases caused by one or two malfunctioning genes. MS appears to involve defects in many genes, each with only a modest effect. The newly identified defects, by themselves, raise the risk of MS by about 20 percent. The studies also found evidence that a dozen other genes may be linked to MS, providing future potential targets for MS researchers.
RESPONSE TO INTERFERON BETA PREDICTED BY MRI
According to a study presented at the 17th meeting of the European Neurological Society, magnetic resonance imaging (MRI) of brain lesions at the beginning of treatment and after one year of treatment with Interferon beta (IFN-b) can help identify individuals with MS who do not respond to IFN-b treatment.
"Early identification of nonresponders may help neurologists in their decision about MS treatment," said Carlo Pozzilli, MD, Multiple Sclerosis Centre, S. Andrea Hospital, Rome, Italy. Dr. Pozzilli is head of the research team that performed the retrospective study involving 345 patients (101 men and 244 women) who had been treated with IFN-b for an average of 4.5 years. At the beginning of the study, subjects had a mean disease duration of 5.5±4.9 years and a median Expanded Disability Status Scale (EDSS) score of 1.5 (range 0-4.5).
The researchers analyzed EDSS scores and MRI scans at baseline and after one year of IFN-b treatment of all individuals who completed the study. For subjects who discontinued IFN-b therapy, the final EDSS score was calculated at the last neurological assessment during IFN-b treatment.
Those with an increase of at least 1 point on the EDSS score (confirmed in two consecutive visits separated by a 6-month interval) were considered to have a "poor clinical response." Disease activity was determined based on the presence of gandolinium-enhancing (Gd-enhancing) lesions in post-contrast T1-weighted scans and on the accumulation of hyperintense lesions on T2-weighted images.
Individuals who had longer disease duration at the beginning of treatment and a higher baseline EDSS were more likely to have a poor response to IFN-b therapy. A relapse within the first year of IFN-b therapy also was associated with an increased likelihood of poor response over the study period.
However, investigators found that MRI data were even stronger predictors of long-term outcome, whereby both the presence of at least one Gd-enhancing lesion at 1-year and an increase in T2 lesion burden were related to a poor outcome.
"This emphasizes the importance of MRI monitoring, which not all doctors believe in," comments MSF Medical Advisor, Ben Thrower, M.D. "Beta interferon should prevent new T2 and enhancing lesions. When it does not, it probably means that the drug is not right for that person, the dose is not high enough, or there is a lack of compliance to therapy."
NICE GIVES GO-AHEAD TO TYSABRI IN UK
In a preliminary evaluation, the National Institute for Health and Clinical Excellence (NICE), the governmental drug regulator for the United Kingdom (UK), had been ready to reject Tysabri due to cost and efficacy.
After prompting from the UK MS Society, the neurological community, and people with MS, NICE issued a final appraisal recommending Tysabri's use for a small group of individuals with highly active relapsing remitting MS in England, Wales, and Northern Ireland. About 2600 individuals are estimated to be in that group. This go-ahead from NICE comes one year after the FDA approved resumed marketing of Tysabri, under a restricted distribution plan, here in the U.S.
Unless appealed, final guidance will be issued and health trusts will have three months to make Tysabri available. This would bring the UK - with the exception of Scotland - in line with other European countries and the U.S. where the drug is already being used by more than 13,000 people with MS.
The Scottish Medicines Consortium is currently revising its initial decision to reject funding for Tysabri. A decision on the status of the drug across Scotland is due in September.
FDA REQUIRES SUPPLEMENT TESTING
For the first time, manufacturers of vitamins, herbal pills and other dietary supplements will have to test all of their products' ingredients.
The Food and Drug Administration (FDA) announced a new rule designed to address concerns about contaminated supplements and misrepresented labels on the market. If, upon inspection, the FDA finds that supplements do not contain the ingredients they claim, the agency would consider the products adulterated or misbranded. The manufacturers would be asked to remove the ingredient or revise the label, or in more serious cases, the product could be seized and legal action could result.
This new rule, which will apply to all domestic and foreign companies that manufacture, package, and label supplements for sale in the U.S., goes into effect on August 24 and will have a three-year phase-in order to allow manufacturers time to comply. In addition, manufacturers are required to analyze the identity, purity, and strength of all the ingredients of the product before distribution.
But doubt exists about the effectiveness of this new rule and its ability to ease safety concerns of supplements. "You still don't have to show the product is safe," commented Dr. Sidney Wolfe, Director of Public Citizen's Health Research Group. "You don't have to prove it works."
Though the public may have their doubts about this new rule, the FDA believes that it will help safeguard the general public and help ensure a consistent product free of contamination, with accurate labeling.
EASY ACCESS TO REBIF THERAPY
MS LifeLines Access Made Simple, a new program launched by EMD Serono, Inc., is designed to provide easy access to therapy for people with relapsing forms of MS who have either been newly prescribed Rebif by their physician or who have restarted Rebif therapy after having discontinued its use for more than 90 days. This program is only available to patients in the U.S.
All eligible participants will receive up to one year of therapy regardless of income level, with no more than a $50 co-payment required of any patient.
To learn more, visit http://www.emdserono.com or call 1-877-447-3243.
YOGA MAY COMBAT DEPRESSION/ANXIETY
Yoga is a relaxing form of exercise that provides physical and emotional benefits to those who practice it. A new study, published in the Journal of Alternative and Complementary Medicine, suggests that the postures, breathing techniques, and meditation practices involved in yoga may work together to combat both depression and anxiety.
The study, led by Dr. Chris Streeter, Assistant Professor of Psychiatry and Neurology at the Boston University School of Medicine, showed that the brain scans of people who practiced yoga for one hour showed an increase in the levels of the neurotransmitter Gama-aminobutyric (GABA). Low levels of GABA are associated with anxiety and depression.
Two groups, one consisting of yoga practitioners and the other of non- practitioners, were asked to perform different activities. Practitioners engaged in yoga exercise for 60 minutes, while non-practitioners were asked to read. Those practicing yoga experienced a 27% increase in GABA levels.
While yoga is certainly therapeutic, additional research is needed to confirm these findings. While GABA levels may play a role in anxiety disorders, they are not the main neurotransmitter associated with depression. Serotonin plays a much bigger role. Also, general exercise may have the same effects on GABA levels.
Nevertheless, yoga has demonstrated beneficial effects for individuals with MS, including spasticity relief, increased coordination, improved balance, diminished fatigue, and stress reduction. To learn more about the benefits of yoga and other exercise for MS, request a copy of our booklet, The Fitness Prescription. Send an email request to firstname.lastname@example.org or call our Program Services Department at 1-888-MSFOCUS.
FREE BALANCE TESTING AT SAMUEL MERRITT COLLEGE
People with MS often have balance difficulties. Studies have shown that balance is affected even in people with minimal impairment from MS. Balance testing and evaluation can prove helpful.
Samuel Merritt College in Oakland, California received a Quality of Life Grant from MSF that will provide free balance testing and evaluations for individuals with MS. The testing takes approximately 60 minutes. Interested individuals must be able to stand, without support with their feet apart, for ten seconds. Following the evaluation, a detailed report will be sent to the individual's physician, along with any recommendations to improve or maintain balance control.
Balance testing can determine if there is a visual, vestibular, somatosensory, and/or a motor control issue. Equipped with this specific information, the individual can begin a personalized balance program to target these issues.
For more information call 510-869-6511, extension 4411 to schedule an appointment for your free evaluation.
VIEW YOUR OPTIONS FOR ADAPTIVE PHOTOGRAPHY
Many people enjoy photography. But limited mobility, impaired dexterity and other physical challenges can make it difficult to use a camera. Tripods, which steady the camera while leaving both hands free, are helpful. But other needs remain, particularly for those who want to movie around to take shots. Fortunately, there are options for photographers with disabilities.
Various types of mounting devices allow wheelchair or scooter users to position their equipment so that it is always ready to use. Companies such as Orcca Technology offer arms that mount or clamp easily to a table or wheelchair for appropriate positioning of cameras.
Photographers with disabilities are also creating innovative ways to customize mounts to adapt to their specific needs. Loren Worthington, a wheelchair user from Arizona, talks about the challenges of taking pictures for his blog, Rolling F Stop. He explains how cameras with pivoting LCD screens offer greater options because they can be positioned to the necessary angle even when the photographer can't move around much. Limited hand mobility can make controlling the shutter difficult, so Loren adapted his camera with a tongue switch made by Conceptus, Inc. Originally designed to address the needs of skydiving photographers, tongue switches require no movement of the teeth or jaw to operate, making them ideal for people with limited hand mobility.
Although not specifically designed for photographers with disabilities, a great alternative to the traditional stiff-legged tripod is the Gorillapod by Joby. This handy camera holder can bend and attach to almost anything.
For hands-free pictures, wired webcams, like Logitech's QuickCam, have long USB cables and bases that swivel to the desired angle. Wireless webcams are another great option. With the accompanying software, you can snap pictures from your desktop or laptop. Adapted cameras are also excellent tools. Orcca Technology offers simple digital cameras adapted for use through a single switch.
To learn more about taking pictures with a disability or learning from other photographers on wheels, visit http://rollingfstop.blogspot.com.
ETHNICITY IN MS
According to a recent study in Neurology, differences in immune systems have been found in African Americans with MS compared to Caucasians. These differences could begin to explain why African Americans experience more disability with MS than Caucasians.
The study compared levels of antibodies in the cerebrospinal fluid of 66 African Americans to 132 Caucasians with MS. Antibody levels in the cerebrospinal fluid of African Americans with MS were 29 percent higher than levels found in Caucasians.
According to John R. Rinker, MD, with the Washington University School of Medicine in St. Louis, "The findings show that ethnic differences in MS extend to the immune response system, which plays a central role." He also noted that recent genetic studies in MS have begun to identify certain genes which may explain why African Americans experience more disability, but the products of these genes and the mechanism of their effects remain unknown.
Researchers also noted that African Americans who had MS may need a cane, walker or wheelchair at an average of nine years compared to an average of 17 years for Caucasians.
"It has always been noted that, on average, African Americans seem to follow a more aggressive course with MS. For example, the Optic Neuritis Treatment Trial showed poorer recovery of visual function in African Americans than Caucasians," explains Ben Thrower, M.D. "The possible silver lining is that African Americans are generally diagnosed more quickly, perhaps due to presenting with more 'typical' symptoms. This could lead to earlier intervention."
PILOT STUDY EXAMINES HIPPOTHERAPY IN MS
Researchers in the Physical Therapy Graduate Program at Central Michigan University conducted a pilot study to examine the effectiveness of hippotherapy as an intervention for the treatment of postural instability in individuals with MS. Hippotherapy comes from the Greek, meaning treatment with a horse. Specially trained therapists provide this type of rehabilitation for those with movement dysfunction and other types of disabilities and disorders.
In this study, 15 individuals with MS, aged 24 to 72, were recruited from support groups and assessed for balance deficits. Four males and five females received weekly hippotherapy intervention for 14 weeks. The other two males and four females served as a comparison group. All participants were assessed with the Berg Balance Scale (BBS) and Tinetti Performance Oriented Mobility Assessment (POMA) at 0, 7, and 14 weeks.
The group receiving hippotherapy showed statistically significant improvement from pretest (0 week) to posttest (14 week) on the BBS and POMA scores. The comparison group had no significant changes.
Hippotherapy, which is recognized by the American Physical Therapy Association, the American Occupational Therapy Association, and the American Speech and Hearing Association, shows promise for the treatment of balance disorders in individuals with MS. While further research is needed to refine protocols and further explore hippotherapy in MS, these findings provide hope for an enjoyable, outdoor therapeutic tool that may improve functional limitations, neuromusculoskeletal dysfunction and postural control.
"I love hippotherapy for people with MS," says MSF Medical Advisor, Ben Thrower, M.D. "It is great for strengthening the core muscles. In my experience, it helps with gait and balance. It also helps people sit up straight in their wheelchair. It's fun and different so people stick with it. If hippotherapy is done with a physical therapist, it can be billed to insurance. Of course, hippotherapy may be easier to find in some communities than in others."
To learn more, visit the American Hippotherapy Association at http://www.americanhippotherapyassociation.org.
MS ITEMS SUPPORT BRIGHTER TOMORROW GRANT
Two creative women with MS have designed their own websites with some special MS awareness items. MS awareness magnets, keychains, t-shirts, hats, mugs, and other items are available at http://www.msmagnet.com. Wrist and ankle bracelets, along with other jewelry, are available at http://www.bracelets4mshope.com. Proceeds benefit the MSF Brighter Tomorrow Grant Program.
IT'S BRIGHTER TOMORROW GRANT TIME AGAIN
Each year, the MSF makes dreams come true for individuals with MS through the Brighter Tomorrow Grant Program. The goal of this national program is to provide goods or services to those with MS to improve quality of life by enhancing safety, self-sufficiency, comfort, or well-being. Applications are confidential and will be reviewed by the grant committee. The Brighter Tomorrow Grant is a wish-based program and is not based solely on financial need.
Applicants are asked to provide basic personal and financial information, along with a brief essay of 100 words or less, to describe their need and how the grant might help them to have a brighter tomorrow. Applications are accepted from July 1st until October 1st. In order to be considered by the grant committee, applications must be received during these dates only.
Applications are now available on our website. Visit http://www.msfocus.org/programs_grants_bwmg_app.php. Applications will also arrive in the summer issue of MSFocus. Additional applications can be obtained by calling 1-888-MSFOCUS (673-6287). Previous grant recipients are ineligible.
SIXTH ANNUAL CAREGIVERS' NIGHT OUT CONTEST
Has someone in your life gone above and beyond the call of duty to help you? Then, honor them this November during National Family Caregivers Month! Whether this special someone is a friend, relative, child, or significant other, we want to hear how they have made a difference in your life. Handwriting and writing style are unimportant. We're seeking stories with heart! Winners will receive dinner for two at a restaurant of their choice and their story and photo will be published in the winter issue of MSFocus.
In 100 words or less, tell us what makes your caregiver special and how he or she has made a difference in your life. Be sure to include your name, address, phone number and email address.
Submissions will be accepted from July 15th through September 1st.
Application can be emailed to email@example.com or mailed to Caregivers' Night Out Contest, Multiple Sclerosis Foundation, 6350 N. Andrews Ave., Ft. Lauderdale, FL 33309.
CALLING ALL MS NURSES!
All MS nurses are cordially invited to join us for a Voyage to a Better Understanding of MS Care - a five-night Bermuda Cruise. This educational program will be held aboard Royal Caribbean's Explorer of the Seas. We'll set sail from Cape Liberty Cruise Port in New Jersey on Sunday, May 4th and return on Friday, May 9th, 2008. Ports of call include Cape Liberty Cruise Port (NY Harbor) and Kings Wharf, Bermuda.
This program will provide up to 12.95 contact hours through the Texas Nurses Association, an accredited approver of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.
Presented by MS nurses from across the country, the educational curriculum will provide current and pertinent information needed by nurses who provide care for patients with MS, including symptom management and other topics of relevance. The educational program will also prepare the nurse for the International Organization of MS Nurses (IOMSN) certification board examination and may also be applied to recertification credits.
Space for this program is limited and passports are required. For more information, call Fun Cruise & Travel toll-free at 888-826-9660.
2008 CRUISE FOR A CAUSE
Our upcoming MSF Cruise for a Cause is scheduled for March 1st through March 6th 2008. This five-night Western Caribbean Cruise, aboard Royal Caribbean's Navigator of the Seas, will motivate, educate and empower you to live well with MS.
Book early for lower rates. To make a reservation, contact Fun Cruise & Travel toll-free at 888-826-9660 or visit www.funcruiseforacause.com.
**Editor's Note: The intent of this newsletter is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.