12/29/2008
MRI may forecast MS diagnosis, progression
MRI brain scans may be able to detect signs of multiple sclerosis long before symptoms of the disease appear, researchers report.
Dr. Darin Okuda of the University of California, San Francisco studied brain scans done on 44 people. All had abnormalities similar to those seen in people with MS, but none had been diagnosed with the disease.
Okuda continued to follow these people and found that in less than six years, 30 percent had developed MS symptoms. He said further research is needed before doctors begin treating people with these pre-MS abnormalities. Find out more.
Other researchers reported last week that advanced MRI scans can predict the chronic effects of optic nerve inflammation among people living with MS. Researchers are currently working to expand the approach to assess MS attacks in the brain and spinal cord and eventually hope to use the test to help predict disease course and tailor optimal treatments for each patient with MS. Click here to learn more.
| Medical marijuana advances in N.J. New Jersey took a major step toward becoming the latest state to allow patients with debilitating illnesses to use marijuana last week, when a Senate committee approved the Compassionate Use Medicinal Marijuana Act by a vote of 6-1. The measure was first proposed in 2005, but last Monday marked the first time a bill has cleared a state legislative committee. Thirteen other states have approved similar measures. The bill now heads to the full Senate for a vote as early as January. Elise Segal, who testified in support of the legislation, said the committee's vote "really brings me to tears, not just for me as someone suffering from multiple sclerosis, but as a registered nurse and for all the people that I've treated." Read more. To learn more about the bill, click here. To find or contact your legislator, click here. |
Local woman featured in New York Times The New York Times featured eight men and women living with MS in the latest edition of "Patient Voices," including New Jersey resident Meruka Gupta. Meruka is a longtime chapter volunteer and Walk MS Team Captain. She was diagnosed with MS at age 18, but says the symptoms started when she was about 14. She is now a medical student at Rutgers University. Meruka says the challenges of MS give her the strength to go after all of her dreams. “It’s not going to defeat me,” she said. To learn more about Meruka and the other men and women featured, click here. |
Reports positive for oral drug The experimental oral drug FTY720 (fingolimod, Novartis) reduced relapses significantly more than Avonex® (interferon beta-1a, Biogen Idec) in a one-year study involving 1,292 people with relapsing-remitting MS.The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord. However, serious adverse events among patients taking the drug included two deaths from herpes infections and seven cases of localized skin cancer. Two other large-scale, phase 3 trials of the drug are ongoing, and Novartis expects to submit an application to the FDA for approval by the end of 2009. Read more. |
Shoppers provide in-home care Shoppers raised $5,000 to help provide in-home assistance for people living with MS at Macy’s “Shop for a Cause” on September 20. As a result of the fundraiser, JEVS Home Care will be able to serve up to 50 people living with MS with in-home, non-medical care. |
| Web site offers connection, comparison A fast-growing social networking site allows people living with MS to see how other people are experiencing their disease and how physicians are treating their patients with MS at PatientsLikeMe.com. The Web site, which provides an online community for people with MS, Parkinson’s and other chronic diseases, presents data about symptoms and therapies reported by nearly 10,000 people with MS who have registered for the site. Visitors can see how many people with MS share their specific symptoms, the popularity of certain medications and personal health-tracking pages posted by individual contributors. Find out more. |
Overseas clinics may promise more than they deliver Consumers should be wary of Web sites from clinics that offer stem cell treatments, according to a study that found a lack of firm medical evidence to back up their claims. In recent years, desperate patients with few options have traveled to China and other countries where doctors offer stem cell or other cell treatments for incurable diseases. Last July, researchers looked for published studies in human patients about using stem cells to treat the medical conditions mentioned most often by Web sites: multiple sclerosis, Parkinson's and Alzheimer's diseases, spinal cord injury, stroke and heart attack. They reported finding some encouraging hints but no clear evidence of benefit. Read more. |
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| Mice successfully vaccinated against MS-like disease German researchers have succeeded in vaccinating mice with specially treated immune cells that prevent them from developing encephalitis, a disease similar to multiple sclerosis in humans. The scientists placed the nervous system protein that is the target of the harmful immune reaction in MS on the surface of the cells, then treated them with a chemotherapy agent that suppresses immune defense. The immune cells become accustomed to the protein and did not attack it later, even without the inhibitor. The researchers now want to study whether this method is also effective for treating already-existing multiple sclerosis. Learn more. |
TV program features Philadelphia MS community A new TV program about multiple sclerosis features Susan Mamrol, a Philadelphian living with MS, Dr. Clyde Markowitz, director of the MS Center at the Hospital of the University of Pennsylvania and Greater Delaware Valley Chapter President John H. Scott. View the episode of “Healthy Body, Healthy Mind”. |
| Seven locals inducted into Volunteer Hall The National Multiple Sclerosis Society recently inducted seven local people into its national Volunteer  Hall of Fame.Making their mark as activists, health-care providers and fundraisers, these individuals have dedicated their time and energy to creating a world free of MS. One of the inductees, Betty Stewart of Lansdale, Pa., was recently profiled in North Penn Life. Click here to read her story, or click here to learn more about all of the winners. |
New hope of vaccine for MS A new discovery by Australian researchers adds new information to the connection between the Epstein-Barr virus and MS and may be a key finding in the hunt for the disease’s cause. About 90% of adults have EBV (mononucleosis), a lifelong infection, but most have immune systems that keep its levels under control. Scientists have found the immune systems of people with MS are less effective at killing off EBV-infected cells. The findings add weight to theories that EBV plays a role in triggering MS. More importantly, the new study raises hope that the vaccines and antiviral drugs that are being developed against EBV could help reduce the numbers of people who develop MS or slow the disease’s progress. Learn more. |
| MS progression can be predicted with MRI A new study published in the Journal of Neuroimaging shows that MRI scans used on multiple sclerosis patients to determine if the disease has affected gray matter in the brain can identify those at risk for progression of disability. "MRI scans obtained from patients with MS are being used to develop measures and techniques that can accurately measure the visible and hidden damage to the brain, especially in gray matter areas and can more accurately predict the course of the disease," says lead researcher Dr. Rohit Bakshi. As a result of the findings, MRI-based measurement of gray matter damage may be used as a surrogate marker of disease progression. Physicians may therefore be able to more accurately identify patients at risk for developing this progressive disease. Click here to learn more. |
| Study shows neuron gene linked to MS A newly-discovered genetic flaw may lay the nervous system open to assault from the body's own immune system, leading to multiple sclerosis, according to a new study. Scientists know that MS has a genetic cause, but the mechanism has remained obscure. The researchers in this study started with 26 distantly related people living with MS. Researchers scanned the individuals’ genomes to see if they shared any genetic anomalies. The flawed gene they found plays a critical role in the transport of signals along yard-long neurons between the brain and the spinal cord. Their length makes them particularly vulnerable to damage or attack. "It is probably the way the nerve tissue deals with the attack that makes the difference" in people who develop major disabilities from MS, said Rogier Hintzen of the Erasmus Medical Centre in Rotterdam. If so, the variant could become a target for drug therapies, he said. Read the full story. |
Virtual Reality Helps MS Patients Regain Stability Studies performed over the last few years show many multiple sclerosis patients no longer have to live with a meandering or unsteady gait caused by their disease. According to a study published in "Neurology", closed-loop visual feedback helps MS patients improve their walking. Both stride length and walking speed improved dramatically, helping MS patients walk safely. What’s more, a study published in the "Journal of Neurological Sciences" found that when closed-loop auditory feedback was combined with visual cues, MS patients showed even more improvement and confidence while walking. Professor Yoram Baram, CEO of Medigait LLC, created the GaitAid Virtual Walker. The Virtual Walker is a device about the size of a cell phone paired with a set of high-tech eyeglasses. Click here to see this product in action. Click here for the complete story. |
| Red Wine Molecule Might Battle MS Resveratrol, the compound in red wine that previous research has  linked to longevity, has shown promise in an animal model of multiple sclerosis.Mice with the MS-like condition called Wallerian degeneration slow (WldS) showed an initial weight gain when given resveratrol, researchers at the University of Utah reported Thursday at the World Congress on Treatment and Research in Multiple Sclerosis, in Montreal. The weight gain occurred in the first two weeks of treatment. According to Dr. John Richert, executive vice president for the research and clinical program of the Multiple Sclerosis Society, weight gain of any kind is an encouraging sign in MS treatment. "In inflammatory animal models of MS, one of the tell-tale clinical signs of the disease is weight loss. Weight loss often goes hand in hand with loss of neurological function." Learn more. |
Obesity can delay MS diagnosis People with pre-existing medical conditions, such as obesity, and vascular problems such as diabetes, high blood pressure or high cholesterol, may experience a delay in being diagnosed with multiple sclerosis (MS), or experience an increase in severity of the disease at diagnosis, according to a study published in the October 29, 2008, online issue of Neurology®, the medical journal of the American Academy of Neurology. The study found that it took one to 10 years longer for people who were obese, smoked, or had physical or mental health conditions to be diagnosed with MS compared to people without such conditions. The study also found that the more medical problems a person with MS had, the more severe the disease had become by the time they were diagnosed. Click here to read more. |
11/3/2008
Alemtuzumab shows promise in Phase 2 trials
Treatment with alemtuzumab (Genzyme Corporation) reduced the accumulation of disability and the frequency of relapses in people with early relapsing-remitting MS, compared to Rebif® (interferon beta-1a, EMD Serono, Inc. and Pfizer, Inc.). Those taking alemtuzumab had a 74% reduction in the risk of MS relapse compared with those on Rebif, and a 71% reduction in the risk for sustained accumulation of disability.
Two Phase 3 trials of alemtuzumab, supported by Genzyme Corporation and Bayer Healthcare Pharmaceuticals, are currently recruiting participants.
Read the full story.
| Leukemia drug helps fight MS Researchers in Britain say they have found that a drug used to treat leukemia can halt and even reverse the debilitating effects of multiple sclerosis (MS). The findings published Thursday in the New England Journal of Medicine will bring fresh hope to the world's millions of sufferers of the the auto-immune disease. Researchers from the University of Cambridge in eastern England found that a drug called alemtuzumab can stop the advance of MS in its early stages. Learn more. |
Congress funds MS research For the first time, Congress has approved spending Defense Department money to research a possible link between multiple sclerosis and military service -- which could help pinpoint the cause of a disease striking 400,000 Americans. The $5 million allocation will be awarded competitively to researchers. "We are very, very happy," said Shawn O'Neail, vice president of federal government relations for the National Multiple Sclerosis Society. "This was the result of a grassroots movement across the country." Read the full story. |
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10/20/2008
Care management training offered
If you’re a care manager, social worker or direct service worker dedicated to caring for people living with MS, you know how challenging this disease can be for the
people it effects.
Gain the knowledge and resources you need to tackle MS care management issues at this informative training session on October 31 at Valley Forge. Experts in your field will discuss important topics that include:
- Depression and mood disorders in MS
- Palliative care for people with MS
- Resources for health-care professionals
Download the brochure for more information about this exciting event.
10/13/2008
Congratulations on making your mark!
Congratulations to the more than 350 walkers, crew members and volunteers who made the 2008 Challenge Walk a tremendous success. We are on target to raise over $600,000.
Teams are the key to the success of Challenge Walk. We want to send special thanks to our Top 5 Fundraising Teams for all that they do to fund our mission:
» Old Soles: Captain Mindy Bartscherer, $51,000
» Pam's Posse: Captain Pam Gifford, $46,000
» Curesading Mylinators: Captain Irene Gowder, $23,000
» Walk-A-Doodle-Do + Lou: Captain Allison Coia, $22,000
» MSfits: Captain Kim Bock, $21,000
For photo highlights of the weekend, click here.
| City to Shore shatters record As a result of the commitment of 7,000 cyclists and 1,200 volunteers, City to Shore 2008 was our most successful ride ever! The event is on target to raise $5 million, making it the second largest Bike MS fundraiser in the country. For photo highlights of the weekend, click here. |
MS drug gets fast tracked Canadian biotechnology company BioMS Medical Corp said on Thursday its lead drug for the treatment of multiple sclerosis, dirucotide (MBP8298), was granted fast-track designation from the U.S. Food and Drug Administration. Fast-track designation could help development and speed the review process of dirucotide, for the treatment of secondary progressive MS, now being evaluated in a U.S. Phase 3 trial. |
9/29/2008
Register now for MS conference
The 2008 Greater Delaware Valley MS Conference & Expo is designed especially for people with MS and those who love and care for them. On Nov. 1 at Valley Forge Convention Center, you’ll find:
» A comprehensive Expo Center showcasing more than 80 exhibitors
» The details about Fast Forward, a new drug discovery initiative by the National Multiple Sclerosis Society
» A keynote presentation by Neil Cavuto of Fox News (click here for more about his life with MS)
» Innovative workshops about alternative medicine, guided imagery, being your own health advocate and much more
This event is provided at no cost to attendees. Parking is free, and transportation is provided from select locations in PA and NJ. Click here to find our more or to register.
Betaseron intros new needle
Bayer HealthCare Pharmaceuticals Inc. will be launching a new 30-gauge needle (the same size used for insulin and pediatric injections) and new optional autoinjector (BETAJECT® LITE) at the end of October.
The new autoinjector will replace all previous autoinjectors; use of any autoinjector other than this latest version may result in people not receiving their full dose of medication.
People who are currently taking Betaseron can log onto Betaseron's Web site or call 800-788-1467 for more information about the new needle and to request the new autoinjector.
9/22/2008
Atlas ranks US 4th in MS prevalence
The World Health Organization and the London-based Multiple Sclerosis International Federation published the MS Atlas on Wednesday. It summarizes information on the disease in 112 countries, none of which were free of the disease.
“The Atlas of MS reveals how these implications impact women more than men, by at least two to one, at an age when they are starting a family and developing a career,” said Dr. Benedetto Saraceno, director of the WHO's department of mental health and substance dependence.
The study confirms that MS is a global disease, not solely of the more developed “northern” and “western” countries, the report said. The countries with the highest prevalence were:
» Hungary at 176 cases per 100,000
» Slovenia 150 per 100,000
» Germany 149 per 100,000
» United States 135 per 100,000
» Canada 132.5 per 100,000
» Czech Republic 130 per 100,000
Elkin Park woman strikes Bronze Elkin Park's Laura Schwanger, 50, came away from from the 1,000 meter rowing competition at the Paralympics with a bronze medal. Schwanger has lived with MS since 1981 and recently survived a bout with breast cancer. Of her victory against ahtletes half her age, she told the Courier-Post: "Not bad for an old lady," she said with a laugh. "My cheeks hurt from grinning so much." |
JUMPSTART podcasts online Although the Sept. 6 program from the Heuga Center in Philadelphia was cancelled due to weather, the program went ahead in Allentown on on Sept. 7. The full-day of sessions included topics such as nutrition, movement and talking to your health care professional. To listen, click here. Plus, Heuga Center experts will be offering their CAN DO program in Westchester, NY in January. |
9/8/2008
A local woman's Olympian effort
In 1981, while serving active duty in the Army, Laura Schwanger was diagnosed with MS, a disease that would eventually lead to her Paralympic destiny. By 1996, she had won 11 track and field medals.
Today, at nearly 50 years of age, Schwanger's focus is rowing. The Elkins Park, Pa resident trains in the water up to 10 times a week and uses meditation and mental imagery techniques to prepare for the Beijing Games in September.
Woman gets a much-needed lift
When Adrienne Small, who lives with MS, wrote a check for $6,000 to United Lift of South Jersey, she expected there would be a wait before it was installed at the front entrance of her rowhome. What she didn't expect was that the company would cash her check and then close its doors.
Fortunately some local companies and the National MS Society have teamed up to solve the problem. As Small says, "Now I can just get on the ramp instead of sitting on the porch watching people pass by." Watch Small's story on Fox 29 news.
9/1/2008
Nerve regeneration discovered
A study of brain tissue obtained from nine people with MS shows that, while many areas of damage show expected loss of myelin and nerve cells, a few older lesions showed a 72% increase in nerve cells when compared with neighboring brain regions. Authors Bruce Trapp, PhD, Ansi Chang, MD, and colleagues (Cleveland Clinic Foundation) believe their findings support the possibility that nerve cells in the white matter of the brain can be replaced after they are destroyed by MS. The report appears in an early online issue of Brain (July 23, 2008). The study was funded by the National MS Society and the National Institutes of Health.
8/25/2008
MS gene patterns identified
In a major step toward discovering molecules that may be used as “markers” to predict MS disease activity and progression, researchers identified a pattern of gene expression (i.e., patterns of genes being turned on or off) within immune cells that was associated with quick
conversion to MS in a study of 37 people with CIS (clinically isolated syndrome, a first event suggestive of MS). This study was funded by several sources including a Collaborative MS Research Center Award from the National MS Society.
8/18/2008
Earlier MS diagnosis may be possible
German scientists say they've discovered a new MRI procedure that could enable the early diagnosis of multiple sclerosis.
The researchers said they have developed a new chemical contrast to visualize inflammatory tissue damage, most of which had previously remained unrecognized, in an animal model of MS.
Early MS diagnoses frequently cannot be established with certainty if no or very few inflammatory lesions are present on an MRI scan. Learn more.
Leadership Class raises record $216k  The 2008 MS Leadership Class has raised a record $216,000 to help people living with MS -- and they're not finished yet.James Santora, vice president of residential sales and leasing for O'Neill Properties Group, leads the 85 members of the class with $27,060. Pat Croce (pictured above with Santora) presented Santora and his classmates with their awards at a ceremony at the Union League of Philadelphia. Help the 2008 Leadership Class set an even higher bar and fund even more research, programs and services for 11,000 local people living with MS by contributing to their effort. The deadline for donors to be listed in the Philadelphia Business Journal is August 13. |
Forum makes disability issues public The National Forum on Disability Issues on July 26 allowed the major parties to present their visions for the future of disability policy in America, including employment, health care, long-term community-based supports, transportation and education. To watch the National Forum on Disability Issues Web cast, click here. |
8/4/2008
Stimulus checks available for many
To boost the flagging economy, Congress authorized economic stimulus payments that eligible households claim by filing a 2007 tax return.
However, there are still about 5 million low-income seniors, disabled veterans and others with disabilities who are not otherwise required to file a tax return and, as a result, are at risk of missing out on their $300 payments.
Eligible people have until October 15 to file. Click here to learn how you can file a tax return and receive your economic stimulus payment.
| Race for MS a roaring success Despite being rescheduled due to rain, hundreds enjoyed an exciting evening of motorsports and helped create a world free of MS at the third Race for the Cure at the Bridgeport Speedway on July 24.  The event is the brainchild of Fran Ferry (right), who created the night at the races in honor of his daughter Sheryl Casey (left). The two are shown here at the event with the Greater Delaware Valley Chapter's Megan DiPanni. On behalf of the 11,000 local families living with MS, we thank the organizers for creating this wonderful annual event. |
Stem cells morphed to make myelin Adult stem cells in mice that are on their way to becoming nerve cells can be redirected by changing a single gene into cells that make myelin, the key target of the immune attack in MS, researchers reported. This is important for MS research because repairing damaged myelin is a key part of finding a cure for the disease. The cells that make myelin are often destroyed in the MS immune attack, limiting their capacity to repair the damage. “These findings in mice represent a leap forward in developing ways to redirect repair cells in the brain,” said John R. Richert, executive vice president of research and clinical programs for the National MS Society. |
| Scientists find new MS differences New studies in mice suggest that people who experience the same clinical signs of multiple sclerosis may have different forms of the disease that require different kinds of treatment. A University of Michigan team found that different inflammatory chemicals linked to two different types of T cells could bring on the same MS-like symptoms. They also showed that drugs that block one of the inflammation pathways were not effective at blocking the other. The results, if borne out in further studies, point to a time when doctors will be able to target specific inflammatory processes in the body and more effectively help MS patients, using available drugs and new ones in the pipeline. Learn more. |
Copaxone could go generic Momenta Pharmaceuticals has submitted a generic version of Copaxone for review by the U.S. Food and Drug Administration, and last month, Mylan Inc. said it had signed a deal to distribute generic Copaxone made by India's Natco Pharma Ltd. in the United States. A generic Copaxone could be good news for people living with MS; generics have the same active ingredients as their name-brand counterparts, but frequently are much cheaper for consumers. |
Philadelphian details Medicare woes A recent NPR story about the lengthy waiting period for Medicare coverage featured Philadelphia resident Jeff Rubin. The story described the financial hardship that can plague people during the two-year gap and compared the U.S. situation with that in Great Britain. Read the story here. |
High doses of caffeine could block MS When consumed in large amounts in a newly reported study, caffeine was found to protect against multiple sclerosis by blocking key steps in the development of the disease. But the study involved mice, and its authors say it is not yet clear if the findings apply to humans. If they do, the research could one day lead to new ways to prevent and treat MS and other autoimmune diseases, like rheumatoid arthritis and lupus, they say. Learn more. |
| Turn to us for health insurance help The chapter's Health Insurance Initiative Project is designed to provide individualized support and advocacy for health insurance-related issues. Our staff will help you understand your benefits and will assist with insurance appeals and getting your insurer to cover the things you need. For assistance, e-mail Jenna Jones or call her at 1-800-548-4611. |
Browse to MS World for support Looking for online support and resources for living with MS? Check out MS World. The online community offers chat groups, essays and poetry, art, recipes and more. |
6/30/2008
Oral drug reduces disease activity
Treatment with the oral therapy laquinimod (Teva Pharmaceutical Industries) reduced disease activity by 40% in a phase 2 study of people with relapsing-remitting MS. Learn more.
Laquinimod is believed to affect the immune attack on the brain and spinal cord that occurs in MS. A phase 3 study of laquinimod is under way in 1,000 people with relapsing-remitting MS.
WAMS Luncheon inspires, motivates  About 500 business leaders gathered for the sixth annual Women Against MS Luncheon on June 11 to honor Priscilla S. Brown, chief brand officer of Lincoln Financial Group, with the Woman of Spirit Award.Guests also were entertained and inspired by Jacquelyn Mitchard, author of “The Deep End of the Ocean,” whose best friend since childhood is living with primary-progressive MS. “I am determined that in our lifetime, I will get the chance to dance again and that Jeanine will dance with me,” she said. Watch her keynote address. |
Cafe con Leche: Support in Spanish The National MS Society offers a telephone support group in Spanish. Hispanic/Latinos with MS are invited to participate in these free calls that are held monthly. The group will be facilitated by Moyra Rondon, LCSW, Director of Public Education and Hispanic Outreach for the NYC Chapter of the National MS Society. Topics will focus on areas of interest to people with MS and experts from different areas of MS specialization will speak about important topics in MS care. All calls will go from 2-3 p.m. eastern standard time. For more information or to register call 1-800-344-4867, option 3. |
| Massage may improve MS symptoms People living with MS may experience benefits from massage therapy, including a reduction in pain, increase in range of movement, and improved emotional state. In one study conducted by the Touch Research Institute at the University of Miami, patients experienced improvements in mood and body image after receiving massage. In another, participants who received reflexology treatments showed significant improvements in urinary symptoms, spasticity and paresthesias (sensations of tingling, pricking, or numbness of a person's skin). Learn more about massage and MS. |
Chemotherapy may fight MS A small clinical trial suggests that a regimen of high-dose chemotherapy can significantly reduce disability in people with relapsing-remitting MS. The doses of cyclophosphamide given intravenously significantly reduced disability and MRI-detected disease activity in most of the nine study participants and resulted in sustained remission in some. Larger, controlled trials are needed to establish the safety and long-term effectiveness of this therapy to treat MS. Learn more. |
| Oral therapy improves walking speed Walking speed improved significantly in a clinical trial of 240 people with all types MS taking Fampridine-SR (MS-F204, Acorda Therapeutics, Inc.), an oral therapy. In the study, 42.9% of participants had a consistent improvement in walking speed, compared with 9.3% of people taking placebo. Among those taking Fampridine-SR who improved in walking speed, there also was a statistically significant improvement in leg strength. Acorda plans to file for FDA approval of the drug to treat mobility issues in MS in 2009. Learn more. |
Study yields MS progression clues A study tracking people living with MS for more than 20 years is providing clues that could help doctors predict the clinical course of MS. Investigators reported that people with relatively rapid increases in brain lesion volume during the first five years after their initial neurologic episode were more likely to develop long-term disability than those with slower rates of lesion accumulation as detected in MRI scans. Learn more. |
| Barriers to MS therapies can be overcome A recent survey by Bayer HealthCare revealed a number of barriers that people living with MS face when starting and staying on disease-modifying medication, including affordability, injection-related issues, side effects and the difficulty of maintaining a medication schedule while away from home. Factors cited by survey participants that make it easier to stay on medication include family support (84%), drug company materials and Web site (60%), MS advocacy and support groups (45%) and MS nurses provided by drug companies (43%). |
Immune genes may determine MS attack A person’s immune-related genes may help determine which parts of brain and spinal cord are attacked by the immune system during the course of MS, according to Australian investigators. The sites targeted by MS have a profound impact on the types of symptoms a person is likely to experience. The results of the study may help explain why individuals with MS experience tissue damage and corresponding symptoms differently. |
5/26/2008
MS in kids can cause cognitive issues
An MS diagnosis can be daunting for any family, but when the person diagnosed is a young child, it can be particularly difficult.
A report in the May 13 issue of Neurology indicates that cognitive deficits were observed in about one-third of 63 children with MS who participated in a University of Florence study. Click here to learn more.
These results highlight the need for addressing cognitive function early in children with MS. The National MS Society estimates that up to 10,000 children and teens are living with MS, and at least that many have shown symptoms that could indicate MS.
5/19/2008
Stem-cell transplant could help MS
A failed experiment may provide a new way to treat multiple sclerosis.
Canadian researchers performed bone-marrow stem-cell transplants, similar to those given to leukemia patients, in an attempt to “reboot” the immune systems of people living with MS.
The goal was to boost the patients’ immune systems; instead, their MS went into remission. In seven years, none of the 17 trial participants has had a relapse. Read more.
5/12/2008
Walking toward a brighter day
With great weather and incredible crowds, Walk MS 2008 had one of its most successful days ever at 10 different sites across the region. Even if you weren't able to make it to one of the Walk MS sites, you can still be part of the movement to create a world free of MS. Donate today!
Thank you to the more than 12,000 walkers who raised much-needed funds for local people living with MS through Walk MS 2008.
| Neurologists report on MS research More than 10,000 researchers and practicing neurologists from around the world gathered in Chicago last month for the American Academy of Neurology's annual meeting. Among the presentations were a record 338 relating to multiple sclerosis. Click here for an update on the progress of experimental and approved therapies, as well as research that helps expand our understanding of the disease. |
Prozac may help curb MS activity Prozac may help curb disease activity in people living with MS.Detailed MRI scans showed that participants treated with Prozac had fewer new areas of inflammation than those in a placebo group, Dutch researchers reported. Future studies are needed to confirm the effects, but the results were encouraging, the researchers said. Click here to read the study. |
Insurers stick patients with drug bills The New York Times reported this week that health insurance companies are rapidly adopting a new pricing system for very expensive drugs, asking patients to pay hundreds and even thousands of dollars for crucial prescriptions.The system, which requires patients to pay a percentage of the actual drug cost, rather than a fixed co-pay, means that the burden of expensive health care will now affect insured people, too. Click here to read how the policy is affecting patients, including those living with MS. |
A/C program can help beat the heat Temperatures are rising, and that can mean trouble for people living with MS. The National MS Society helps people with MS stay cool during the summer through its Air Conditioner Exchange Program. If you need an air conditioner or you have one to donate please e-mail us or call 1-800-548-4611. |
| Hotel site gives back to the Society Plan your summer vacation and give to the Society at the same time by booking your hotel through Travel4MS.com. The site, which is affiliated with hotels.com and offers the same inventory and prices, donates 5% of every booking that results in a hotel stay to the National MS Society. Click here to start planning. |
Walk MS gets high-profile support Ben-FM Morning Show Co-Host Dave Cruise has started a Walk MS team at the Philadelphia site this year in honor of Andrew Morris, a colleague who was diagnosed with MS in 2001. Since that time, Morris has lost and regained vision in both eyes, experienced numbness in whole sections of his body and has had to give himself countless injections, Cruise wrote on the Team Ben Web page. He added, “I want to do what I can to help raise awareness and funds to fight this disease.” |
| Long-term Tysabri study now enrolling Investigators are enrolling 2,500 people with relapsing forms of MS at sites around North America, including New Jersey and Pennsylvania, to study the long-term safety of routine Tysabri use. For more information, click here. |
New resource for working with MS The National MS Society has partnered with career/recruitment site Monster to launch MS Workplace, a first-of-its-kind online initiative to provide MS-specific career advice, workplace tips and job postings targeted toward the MS community.A recent survey showed that just 41 percent of people living with MS in the Greater Delaware Valley are employed, and 44 percent have had to leave a job because of MS. To learn more or to start job hunting, visit MSworkplace.com. |
Greenlight for 61 research projects The National Multiple Sclerosis Society has just committed $24 million to support 61 new MS research projects as part of its annual $50 million international effort to spur momentum in cutting-edge MS research.This financial commitment is the latest investment in the Society’s relentless research effort to prevent, treat and cure MS. |
Podcasts on Progressive MS An extremely popular series of teleconferences for people living with progressive MS is now available for download from our podcast site. The series, titled Progressive MS: Tips for Daily Living, covered everything from improving your memory to taking advantage of recreational activities. The series was hosted by Shelley Peterman Schwarz, who has shared her insights and personal experiences about coping with chronic disease through books such as Multiple Sclerosis: 300 Tips for Making Life Easier, newspaper and magazine articles, television appearances, speaking engagements and now a blog and internet radio show. |
| Anxiety/Depression and MS Researchers in Norway found symptoms of depression and anxiety to be significantly higher among people with MS compared with those without MS. This study provides important data on the occurrence of emotional changes in people with MS, and the necessity to increase treatment of these symptoms. The findings are reported in the European Journal of Neurology. Emotional changes are very common in MS, both as a reaction to the stress of living with a chronic, unpredictable illness and because of neurologic changes caused by the disease. Severe depression, mood swings, irritability, and episodes of uncontrollable laughing and crying pose significant challenges for people with MS and their family members. |
Epstein-Barr virus and gene may combine for higher MS risk A new study suggests that the combination of having a specific immune gene and high blood levels of antibodies to Epstein-Barr virus makes a person nine times more likely to develop MS.The study, published in a special MS-themed issue of the journal Neurology, underscores the importance of studying the little-understood interactions between genes and the environment that contribute to MS susceptibility. Read more. |
| Can parasites improve MS? Scientists in Wisconsin will soon begin testing the idea that introducing harmless parasites into people with MS might help distract the immune system from attacking myelin. Researchers will give microscopic whip-worm eggs by mouth to participants in the study, which is being funded by the National MS Society. Once inside the body, the eggs will hatch and the worms will live in the patients’ intestines. The approach has already been tried with some small-scale success in Crohn’s disease and ulcerative colitis, and it’s being contemplated with disorders such as Type 1 diabetes. Read more. |
Compound could slow damage from progressive MS Researchers report that an experimental compound reduced disease progression and damage to nerve fibers and myelin when given to mice with a progressive MS-like disease. The research team is testing the effects of ABS-75, a compound that combines the power of an anti-oxidant with a compound that can block the activity of the natural chemical glutamate, a nerve transmitter that can cause injury when present in excess. Currently, few treatment options exist for progressive stages of MS. The disability in progressive forms of the disease is thought to be caused by the degeneration of nerve fibers. Learn more. |
| Online store open for business Coffee mugs, caps, awareness bracelets and much more  are now available from the Society's new online store. These items are a great way to show your commitment to create a world free of MS and get more people involved in our movement. Check back at the store often because new items are being added all the time. |
Unemployment rate high for local people living with MS Just 41 percent of people living with multiple sclerosis in the Greater Delaware Valley are employed, and 44 percent say they’ve had to leave a job at some point because of the disease. Yet the average age of people living with MS in the area is 50, well within the years when people would expect to be working. The comparable employment rate for the U.S. population is 63 percent. These numbers were revealed as part of a Needs Assessment Survey carried out by the Greater Delaware Valley Chapter. For more details, click here. |
| Apply for home modifications Does your house need a ramp, grab bars or other modifications to make it feel like home again? Rebuilding Philadelphia Together, an organization that provides volunteer home repairs for families in the Philly area, is working with Lowe's to make those adaptations for a low-income homeowner with a physical disability who needs essential home repairs. All work will be performed without charge to the homeowner, although homeowners and their family are expected to work side by side with RTP volunteers. Click here to apply for this special project; the deadline is March 24. If your household isn’t low-income, you can still apply here for Rebuilding Philadelphia Together’s regular, year-round assistance. |
Long-term care insurance highlighted WHYY examined long-term care insurance for people with MS in a radio story on Tuesday. Click here to hear about one local woman’s experience shopping for long-term care insurance and the single product that’s available for people living with MS. |
3/3/2008
Cancer drug reduces disease activity
Researchers report that one course of the IV drug rituximab (Rituxan, Genentech and Biogen-Idec) reduced disease activity and relapses for 48 weeks in people with relapsing-remitting MS.
The drug reduced active lesions by 91 percent after 24 weeks, and 58 percent fewer people in the treatment group had relapses. The researchers saw the same results at 48 weeks. Rituxan is already approved to fight non-Hodgkins lymphoma and rheumatoid arthritis.
In addition to presenting a possible promising new treatment for MS, the results may shed light on the immunology leading to the disease. For decades, immune T cells have been thought to be the main culprits in MS, but Rituximab depletes immune B cells. Read more here.
2/25/2008
Problems with SSDI highlighted
The New Jersey Herald this week highlighted the struggles of Cassandra Kutner, a Lafayette, N.J., woman living with MS who is fighting to receive benefits from Social Security Disability Insurance.
Click here to read about Cassandra and the delays plaguing the SSDI system.
2/18/2008
Fire safety preparation is critical
The tragic death of Brenda Orr, a Doylestown, Pa., woman living with MS, in a recent house fire highlights the importance of emergency preparation for people with disabilities.
Click here for fire safety tips from the National Fire Protection Association and the National MS Society.
The National MS Society conducts home safety evaluations for people living with MS. To schedule a home visit, please call 1-800-548-4611.
2/11/2008
Long-term care insurance now available for people living with MS
Penn Treaty Network America has launched the first long-term care insurance plan specifically for people with MS.
Long-term care helps people with daily activities such as walking, bathing, eating and dressing. Long-term care insurance will help pay for care in your own home, in an assisted living facility or at a nursing home.
For more information, contact American Insurance Planners, the Society's long-term care insurance brokerage firm, at 1-800-789-5191.
2/4/2008
Ballroom dancing classes are for everyone
The Atrium Dance Studio in Pennsauken, NJ, invites you to drop by and visit its ballroom and Latin dance class specifically designed for National MS Society members. This class is perfect for dancers of all abilities and levels of mobility.
So, whether you're light on your feet or need a little help getting around, come on by to see what this class has to offer. Couples and singles welcome.
Following this special free open house, you can sign up to continue the fun with a 5-week ballroom dancing course. To register, call 215-588-6671.
| Therapy nearing critical milestones Fampridine-SR, a drug that could be the first to actually improve nerve function in people living with MS, should report key clinical trial results within the next few months. Results from a final Phase III human trial are expected between April and June, and cardiac safety test results should be announced in a few months, Barron’s reports. If all is positive, the drug could be on shelves as soon as late 2009. In an earlier series of Phase III trials, Fampridine was shown to improve the walking ability of people with MS. The oral drug patches areas of damaged myelin and allows current to be conducted through the nerve without interruption, Barron’s reported. |
Volunteer to create a world free of MS Join the movement as a volunteer at one or more of our great events during each year -- Walk MS, Bike MS, Challenge Walk MS or the 2008 MS Conference & Expo.Volunteering is a great opportunity not only for individuals and families, but also for school and community groups and companies with community service initiatives. Learn more. |
| Response to therapy may depend on genes Genetic differences may help explain why some people with MS are not helped by interferon beta (Betaseron, Avonex, Rebif) and could reveal which patients are likely to benefit from the therapy. About half of patients given interferon beta continue to suffer relapses and worsening disability. Scientists found 18 different small genetic mutations that might explain the differences, according to a report published in the Archives of Neurology. Read more. |
A Question of Health What can an occupational therapist do for me? An occupational therapist is a licensed health-care professional who specializes in small-muscle motor movement, hand-eye coordination and balance. An occupational therapist can complete an accessibility and mobility study of you and your home, making note of how you move within your environment. The therapist may make recommendations for furniture placement to increase mobility or suggest durable medical equipment such as shower grab bars or motorized scooters to help you maintain independence within the home and decrease reliance on others. Finally, the therapist can provide you with activities you can complete in your home to help maintain optimal health. For help finding an occupational therapist, please contact the Greater Delaware Valley Chapter at 1-800-548-4611. It's one of the many different helpful sources of information we can refer you to. |
| Discovery may limit MS immune attack Researchers have found a way to selectively block the ability of white blood cells to migrate within the body, results that suggest a new treatment approach for autoimmune diseases such as multiple sclerosis. A team of researchers at the University of Rochester Medical Center has been studying proteins called integrins that enable T cells to move to the sites of damage or infection. The new discoveries suggest a way to shut down only T cells currently in the act of inappropriate disease-related migration, while leaving in place reserves needed if another infection occurs during treatment. Learn more here. |
Richard Cohen's book on shelves now  Richard Cohen, noted journalist and keynote speaker at the 2007 Greater Delaware Valley MS Conference & Expo, has released his new book, “Strong at the Broken Places.”Cohen first touched readers with his 2004 memoir, “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” which profiles his personal journey with MS and colon cancer. "Strong at the Broken Places" also focuses on the challenges experienced with other chronic illnesses. To watch Cohen’s keynote address at the conference in November, click here. |
Tysabri Improves Quality of Life Data from the two large-scale clinical trials that led to approval of natalizumab (Tysabri) show that the drug significantly improved health-related quality of life in people with relapsing-remitting MS.That’s in addition to reducing MS relapses and slowing the rate of disability accumulation, the criteria for which the drug was approved. Quality of life measures include a person’s general well-being and physical, social and psychological functioning, and they are not often part of outcomes measured in clinical trials involving people with MS. Learn more by clicking here. |
New Device Helps People Walk Again Emily Bowers, 33, has been suffering from Multiple Sclerosis for more than 10 years. "To have a disease that's this debilitating is really hard on your personal life," she said. "It really does take the quality of your life away from you." For the last year, she has had to use some sort of walking aide to get around. She said without her cane, she'd fall to the floor with every step she takes. Bowers is like thousands of people suffering from neurological and muscular disorders. But a revolutionary new device being used in Texas is helping people who have problems walking. It's called the Bioness L-300. |