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April 30, 2006
COPAXONE: As the deadline looms, MS patients are finding hidden costs in the new Medicare drug plans :
Los Angeles Times: "The MS drug that Marion, 61, and Joseph Young, 62, take is expensive. Copaxone costs $1,460 for each a month, and their 25% share works out to $365 apiece. However, in the coverage gap known as the 'doughnut hole,' each must pay the full $1,460 until Medicare's 'catastrophic' benefit is triggered %u2014 after the Youngs have each spent $3,600..."
"Fluoxetine increases cerebral white matter NAA/Cr ratio in patients with MS"
[Abstract - National Institutes of Health] : April 29, 2006
"Don't let MS stop you from what you want to do. You may have to adjust, but don't quit.":
"Women in sports have gotten used to being role models. We'd bet that none has been cast for so many reasons as Kelly "Girl" Sutton. The most successful woman driver in the 10-year history of NASCAR's Craftsman Truck Series, Sutton is a rallying point for the sport's female fan base, about 48 percent of the NASCAR faithful...." April 28, 2006
TYSABRI: "Mary Carraux misses the drug she took for more than two months in an attempt to slow her MS"
I felt like a million bucks on the drug; it was the best I ever felt," said Carraux, 47. "My everyday symptoms were so much lighter." The Holmen, Wis., woman used Tysabri, which was withdrawn in February 2005 after only four months on the market when three people in clinical trials developed a rare disease, PML. Two died, including a person with MS....."
MS awareness campaign in Seattle:
"Researchers don't know why the Northwest has a higher incidence of multiple sclerosis, but it's something residents should be aware of...."
More Good News for Tysabri:
"An advisory committee to European drug regulators is recommending that Tysabri, the MS drug from Biogen Idec , be returned to the market. The European Medicines Agency's Committee for Medicinal Products for Human Use issued a positive opinion on the drug, Biogen and Elan said in a press release Friday. The panel arrived at its decision after reviewing data from clinical trials and the results of safety analyses that were performed after Tysabri was linked to a potentially fatal brain disease. The committee specifically suggested that Tysabri should be used to treat recurring MS in order to delay the progression of the disease......" April 27, 2006LAST DAY - BLOOD DRIVE AT ST. JOSEPH'S HOSPITAL
PLEASE HELP!!!
Date: Wednesday - April 26th and Thursday April 27th Time: 8:00 am to 1:00pm Location: Barrow Neurological Institute Lobby Contact Information: www.Bloodhero.com [Sponsor Code: "stjoes"]
Osmond Brother recalls father's encouragement: 'You can do it':
"The 56-year-old Osmond is the oldest of the four Osmond Brothers who performed weekly on the Andy Williams Television Show. He recounted the stories of his childhood, the life lessons he's learned and told of coping with MS for 19 years...." Hole closure is seen in MRL mouse (right), but not in the control (left) Mouse sheds light on regeneration [BBC NEWS] "Regeneration - the ability to recreate lost or damaged cells, tissues, organs or even limbs - has a limited capacity in mammals..." April 26, 2006
Biogen Idec Says 1Q Profit Almost Tripled - ABC
"Cambridge-based Biogen Idec, whose fortunes are tied closely to its expected reintroduction of a new version of an MS drug withdrawn over safety concerns, said it was in daily discussions with regulators about the drug Tysabri. The company continues to expect Tysabri will return to the market sometime this year...." MS won't stop probation and parole officer Amy Harriman "Amy Harriman doesn't mind talking about what it's like to suffer from MS. She hopes sharing her experiences will help people better understand what is often a misunderstood diseases"
BioMS Medical to present clinical and manufacturing information at TIDES Conference
"They will be presenting general clinical trial information on BioMS Medical's lead product, MBP8298, for the treatment of MS. MBP8298 is a synthetic peptide that consists of 17 amino acids linked in a sequence identical to that of a portion of human myelin basic protein (MBP). MBP8298 has been developed for the treatment of MS and BioMS is currently enrolling patients across Canada, the U.K. and Sweden in its pivotal phase II/III clinical trial evaluating MBP8298 for the treatment of secondary progressive multiple sclerosis (SPMS)..."
Tysabri: Study rebuts conflict fears around FDA - The Boston Globe:
"A consumer group's study of Food and Drug Administration advisory panel members with financial ties to the drug industry reached a surprising conclusion: They did not dramatically sway the meeting outcomes."
Immune surveillance in MS patients treated with natalizumab.
: "INTERPRETATION: These data suggest that natalizumab treatment results in a prolonged decrease of lymphocytes in the CSF and are consistent with the hypothesis that natalizumab impairs immune surveillance of the central nervous system. Ann Neurol 2006;59:743-747."
Meredith Vieira: 'You have to keep a perspective, and that is: Illness is part of your life, but it doesn't control your life.'
: "When Meredith Vieira takes over the high-profile job of co-hosting NBC's Today Show in September, she simultaneously increases her visibility as the spouse of a person with MS..." April 25, 2006
Serono puts $10bn on table for acquisitions:
" Serono on Friday revealed it has $10 billion on the table to help satiate its new acquisition hungry stance, and is believed to already have received a number of offers. In a conference call, chief executive Ernesto Bertarelli said...."
MS: Diagnosis and Management Strategies
[Abstract -"From Topics in Advanced Practice Nursing eJournal"]
MultiCell Announces Online Availability of Video Presentation of MS Drug Candidates
"The streaming video shows a presentation by MultiCell President Dr. Stephen Chang at a recent meeting of the Southern California Investment Association (SCIA) Conference. "
Antisense Therapeutics reported that the Ethics Committee of the University of Essen in Germany has approved the company's application to restart the phase IIa trial of its antisense compound, ATL1102, for patients with relapsing remitting MS
[PDF of Antisense Therapeutics news release]
MS/toxic agents review documents available: "'These two documents analyze the scientific evidence produced so far concerning toxic agents as risk factors for MS. One provides an overview of the research performed to date and the other discusses the six individual toxic agents that have been studied more than minimally.'"
April 24, 2006The New Faces of MS - Perseverance/True Heros: JORDAN SIGALET...24 years old...BOSTON BRUINS OF THE NHL...[click for "Jordan's Story"]
The New Faces of MS - Perseverance/True Heros
Kelly Sutton..."Her hope is to better the 17th place finish in the 2005 Daytona 250 and to improve her final standings of 29th last year. The lady racer who battles MS every day holds the honor of being the top-earning female in the history of the Truck series...."
MS: Diagnosis and Management Strategies
[Abstract -"From Topics in Advanced Practice Nursing eJournal"]
A randomized study of two interferon- beta treatments in relapsing-remitting MS:
[Abstract - "American Academy of Neurology"] April 23, 2006
Vitamin D and autoimmune disease--implications for practice from the MS literature
[Abstract - National Institutes of Health - J Am Diet Assoc. 2006 Mar]
Interferons and cognition:
"Cognitive impairment in MS is frequent, but the effect of immunomodulating drugs and mainly interferon beta (IFNbeta) on the neuropsychological aspects of the disease has not been fully studied. The data that we have are not conclusive. This paper reviews the effect of IFNbeta on cognition in the different clinical forms of the disease and the future directions of clinical trials....Journal of the Neurological Sciences: On-line Price: US $ 30.00"
Carolyn Kovash shows she can meet the challenges of Boston Marathon:
".....You may remember Carolyn's name from an item in this column last fall when she ran in the Chicago Marathon just a few weeks after suffering some MS symptoms. This past week, she completed the famed Boston Marathon in 5 hours, 4.11 minutes, and raised $10,000 for the National MS Society in the process....." April 22, 2006
NBC News..."'THE WHOLE IMAGE OF M.S. IS CHANGING'.... 'YEARS AGO - WHEN YOU HEARD OF MS, YOU THOUGHT OF WHEELCHAIRS - THAT HAS CHANGED!"
The New Faces of MS - Perseverance/True Heros
The New Faces of MS - Perseverance/True Heros:
Firefighter lives a normal life despite MS: "Shawn Gingrich, 37, receives support and inspiration from his older brother who, more than six years ago, was also diagnosed with MS"
The New Faces of MS - Perseverance/True Heros
"I thought MS was an immediate sentence to a wheelchair, and having been very athletic all of my life, this terrified me. However, I very quickly realized that this was not the case. I was just beginning my life, and I was not going to allow MS to end it."....[MORE]
The New Faces of MS - Perseverance/True Heros:
"FACE OF MS": Kristin Bennett - "I was diagnosed in 2001, it was my junior year at Parsons School of Design. Anyway, I started out with a lot of denial, plus I was a full-time working student in NYC! I didn't have time for that "MS" stuff. I focused on school and work and had a really hard time taking avonex, it would depress and upset me more and more each day leading up to the 'injection' day. So I stopped taking it about 6 months after I started....I did a lot of research about excercise, diet, stress reduction and keeping a positive attitude that really helped me a lot and for awhile I believe I had it pretty well under control. I graduated from Parsons on time in 2003 at age 22...That summer though I started getting 'prickly' feelings. I started taking Copaxone that fall and still do. Since late 2004, I have had a baby, and I am still taking copaxone and am getting back on my pretty strict excercise program. My baby girl is healthy and I have breastfed her exclusively for 6 months. Most people who know me don't know I have MS. Whenever the topic comes up I do bring it up if it seems like an appropriate time but I don't really bring it up on my own otherwise. I've noticed too that I do so much and stay so busy with my paintings, business, baby, errands etc. that people don't seem to remember that little detail that is a part of who I am. That little detail is exactly how I want it to be. I am very dedicated to taking my medicine and treating myself with respect by eating well and excercising well."
The New Faces of MS - Perseverance/True Heros:
STRENGTH IN KNOWLEDGE - Seth Gunderson: "I was diagnosed with MS in September of 2004. Before I was diagnosed I never thought I would have to face an obstacle like this during my life. After my diagnosis I realized that I wasn't going to let this change my life plans, not as long as I can do something about it. Luckily I haven't had any major problems with my health. As thankful as I am for this I still think about all those who are living with MS and aren't able to fulfill their dreams and live their lives like they planned. We need to do all we can to help end the suffering and difficulties associated with this disease and help people achieve their dreams and aspirations once more. I pressed forward with my goals and am currently attending medical school in Missouri; like I said before I'm not going to let this change my life plans. As I learn more and more about the human body and disease processes during my schooling I become more and more aware that knowledge truly is power. It enlightens us, inspires us, and brings light to dark places...."(Face of MS)
The New Faces of MS - Perseverance/True Heros
"Montel Williams on MS....15 Years of Making Television History The New Faces of MS - Perseverance/True Heros: Mandy Bunn - "I was diagnosed with MS when I was 21 years old. At the time I was working full time, a full time student and most importantly a full time single mommy! ...With the strength of my mother and the unknowing strength of my child I began my fight. I started treatment and plowed through and now 6 years later I am here telling my story. Not saying that I don't hate it somedays where I feel like I have been ran over by a truck or just want to lay in bed, but I am better of then some and that I am grateful for! I still have everyday, I can still walk and type this letter. I can work, finish college and also help my son do his homework ( by the way is a lot harder then when I was in second grade). To me its okay to have bad days it makes me appreciate my good days, which I hope I have more of! Anyway I will take this challenge all the way, I will fight this fight because MS will never bring me down. [FACES OF MS] "FACES OF MS"- Andrea Holley: "I was diagnosed with MS thirteen years ago. The doctor put it all into perspective when she said "The lesion on your brain could either be a brain tumor (that would be inoperable because of its location) or MS, HOPE FOR MS! I have two children, Ryan is 9 and races dirt bikes, Sarah is 13 and plays competative volleyball. I am a full-time Realtor with REMAX. Sarah is my caregiver and gives my Avvonex shots to me once a week." "FACES OF MS" Marissa Romanella: "When I was diagnosed with MS, the first thing I though was, "I have NO time for this nonsense". I am a student in my third year of the social work program at Ramapo College of New Jersey and I have a job, an internship, school, and a life to deal with. When my head finally stopped spinning I realized that as much as I could view this disease as a burden, it could also be seen as a push in the direction that my life should take. I am a social worker, I live for a challenge, and I will NOT let this disease define me. I began treatment and have been doing well, and next year, with any luck, I will be interning with the National MS Society"
Clinically isolated syndromes: a new oligoclonal band test accurately predicts conversion to MS:
"CONCLUSIONS: The presence of oligoclonal IgG bands is highly specific and sensitive for early prediction of conversion to multiple sclerosis. MRI criteria have a high specificity but less sensitivity. The simultaneous use of both tests shows high sensitivity and specificity in predicting clinically isolated demyelinating syndrome conversion to clinically definite MS." April 21, 2006
NEW DRUGS: Teriflunomide Reduces Active Lesions in MS Patients:
"Treatment with teriflunomide, an oral dihydro-orotate dehydrogenase inhibitor, reduces disease activity with a trend towards fewer relapses in patients with MS according to the results of a phase II trial conducted by North American and European investigators. Lead researcher Dr. Paul W. O'Connor told Reuters Health: 'These findings are exciting in that they move us one step further to developing something that all MS patients on therapy want: an effective oral treatment.' All current MS drugs require administration by injection. However, teriflunomide, which can be given orally, has shown promise in animal models of autoimmune disease, Dr. O'Connor of St. Michael's Hospital, Toronto and colleagues note in the March 28th issue of Neurology....."
Sutton lead women's NASCAR charge: "Sutton, a single mom with a 16-year-old daughter, has started more races (41) than any other female driver in NASCAR's three national touring series. In her fourth truck season, Sutton also is the only NASCAR driver diagnosed with MS."
April 20, 2006
"Italian researchers say they might have found a source for the cure of multiple sclerosis in relatives of MS patients:
A study of about 200 MS patients found family members developed the same type of lesions in the brain that cause the disease.....But they healthy brains develop tissue to protect the nervous system, ANSA reports."
F.D.A. Dismisses Medical Benefit From Marijuana - New York Times:
"The F.D.A. said Thursday that 'no sound scientific studies' supported the medical use of marijuana, contradicting a 1999 review by a panel of highly regarded scientists. The Food and Drug Administration statement directly contradicts a 1999 review by the Institute of Medicine, a part of the National Academy of Sciences, the nation's most prestigious scientific advisory agency. That review found marijuana to be "moderately well suited for particular conditions, such as chemotherapy-induced nausea and vomiting and AIDS wasting....."
Serono looks at acquisition offers after its decision this month to spend up to $10 billion on takeovers.
"Serono is trying to reduce its dependence on Rebif, which is facing a competitive threat from Elan and Biogen Idec's rival treatment Tysabri.."
"MS is a part of my life, but not my whole life"
"I was diagnosed with MS on May 30, 2003 (not a date I will forget). I was 27I take Rebif 44 which is a beta interferon and with every visit tothe gym - I do pilates and yoga..."
JJK Rowling Donates To Create Multiple Sclerosis Center
"JK Rowling has donated a "major sum" to fund research into multiple sclerosis - the disease that killed her mother. The Harry Potter author's undisclosed but "substantial" amount will help set up a new research center in Scotland. She said she hopes the $4.5 million will help scientists find a cure for the debilitating illness, which her mom died of at the age of 45..." MS HEROS-PERSEVERANCE: Her goal: Put MS out of business "Martha Crowninshield brokered high-stakes business deals all the time as a venture capitalist. But never before had she been involved in a deal with a payoff that could help millions of people worldwide. Crowninshield is a major player in a landmark effort to search the human genome for genes that put people at risk for multiple sclerosis. Crowninshield, a former partner at the investment firm Boston Ventures, is banking on the project. She, like an estimated 2.5 million people worldwide, has MS, She believes the team effort, which involves scientists from all over the world, eventually will lead to improved treatments and maybe something better. In 2002, Crowninshield learned about the International Multiple Sclerosis Genetics Consortium. After researching the project, she put $1 million of her own money into the project. "I wanted to be able to say I believe in this," she says. She also helped the scientists involved put together a business plan, which was crucial in selling the project to private investors as well as the National Institutes of Health and the National Multiple Sclerosis Society. So far, the team has raised $15 million — just $5 million short of the money required for a massive five-year gene hunt for MS..."
12,000 cyclists gear up for MS 150 tour to Austin:
"The largest MS 150 bike tour in North America is set to roll from two Houston-area stadiums Saturday, with 12,000 cyclists embarking on a two-day adventure to Austin" April 19, 2006
MS: "Newspapers Called Often Wrong on Neurologic Disorders" - Mayo Clinic Phoenix
"About one in five newspaper articles about neurological conditions...contains errors, according to a study by Mayo Clinic researchers. Moreover, roughly 21% of news stories about neurological conditions contain 'stigmatizing language' that portrays the patients with these conditions as socially undesirable or reduced in personal wealth, wrote neurologist Joseph I. Sirven, M.D., of the Mayo Clinic Phoenix. Inaccuracies included overestimating risk of mortality, presenting symptoms as more severe, or reporting unusual, atypical symptoms as the norm. Treatment inaccuracies included false claims that a therapy was curative or lack of reporting of adverse effects of therapy. And "omission of key data is the announcement of a new treatment or scientific breakthrough with no further identification or explanation," the authors wrote. In an editorial Jessica M. Fishman Ph.D., and David Casarett M.D., of the University of Pennsylvania, wrote that the inaccuracies and stigmatizing language identified are important because several surveys have identified newspapers as a "widely used and highly trusted source of health information." So errors in newspaper articles "may have a disproportionate influence on individuals who place high trust in this source of information compared to other sources." The papers included in the review were the Arizona Republic, Atlanta Journal Constitution, Boston Globe, Chicago Sun-Times, Houston Chronicle, New York Times, San Diego Union-Tribune... The neurologic conditions included....MS, stroke, traumatic brain injury, dementia and Alzheimer's disease, Parkinson's disease, brain tumors...." SOURCE: MedPageToday
The contribution of demyelination to axonal loss in MS":
"Our results indicate that plaque load did not correlate with brain weight. Unexpectedly, after adjusting for sex, age and duration of disease, correlations between total plaque load and axonal loss in both the corticospinal tract and sensory tracts were weak or absent at each level investigated. Since there was little correlation between plaque load and axonal loss, the possibility that demyelination is not the primary determinant of spinal cord axonal loss warrants consideration..."
American Academy of Neurology 58th Annual Meeting Scientific Highlights:
"Two studies highlighted advances in treatment of multiple sclerosis (MS). The experimental drug FTY720, derived from a Chinese herb and currently in clinical trials, demonstrated its ability to reduce lesions in the brain, and to reduce the number of relapses patients experience over the course of the year. Another study showed that natalizumab delays disease progression, reduces disability progression, and reduces brain lesions. Natalizumab is an antibody that was withdrawn from the market shortly after it was approved for treatment of MS. It has recently been reapproved by the Food and Drug Administration." Pilates for MS "...The benefits of this type of exercise program carry over into daily life as well. Della Reynolds, who has multiple sclerosis, met Ms. Morgan at the FMH Wellness Center. She explains that it is one of the few exercise programs that she can do and feel successful. "It has helped me learn how to sit and walk and drive in a more comfortable way," she says....." April 18, 2006
TYSABRI - "Voices of Hope and Determination - People with MS impact Tysabri recommendation"
:"It was a really scary experience, but incredibly empowering," said MRI technologist Barbara Crooks, who was diagnosed with MS eight years ago. Crooks was one of more than three dozen people who testified during the public discussion session of the two-day FDA Advisory Committee meeting on Tysabri....The energy was electrifying," Crooks said. "There were more than 40 people testifying..."
Daclizumab Method of Action Surprises Researchers:
"A study on how daclizumab (Zenapax) might work in people with MS found unexpected results. Researchers believed the drug prevents interaction between T-cells and the growth factor. But the new study showed the drug doesn't suppress T-cell activity. Instead, it increases activity of another component of the immune system called regulatory natural killer cells, which attack cancers and viruses. This story reveals a very important research development that could shed light on the critical question of how and why multiple sclerosis develops (or at least one version of it), and more importantly, how to effectively treat it....." April 17, 2006
Should you tell your boss you have MS?
To tell or not to tell is a question faced by every employee with MS. The MS Society looks at the issues, and offers a quiz to help you decide whether it's time to disclose.
NEW BOOK - :MS Workbook: Living Fully with MS::
"REVIEW FROM THE PUBLISHER - This workbook, written by a team of doctors and psychologists from the renowned Western MS Center at the University of Washington School of Medicine, is the first available for people with MS. It covers a wide variety of problems, everything from symptom management to sexual function to career opportunities to spirituality.A team of doctors and psychologists from the Western Multiple Sclerosis Center, the largest MS rehabilitation center in the country, offer this groundbreaking workbook for helping people with MS manage every aspect of their lives, covering topics ranging from managing medical and psychological symptoms to improving their sex lives." PERSEVERANCE: True Heros - Annette Funicello "When the stories about my MS came out, everyone gave me their love and their prayers. I'm human, and sometimes I can't help but ask,'Why Me?' But I believe everything happens for a reason, and I know now that my mission is to help others raise funds for MS. The more I read about MS, the more encouraged I am. When I wake up in the morning, I like to imagine, this is the day I'm going to hear about an MS cure on the news..."
NEW DRUGS: Tovaxin - "PharmaFrontiers Completes $23 Million Financing"
:"The proceeds will be used primarily to fund PharmaFrontiers' Phase IIb trial with Tovaxin(TM) for the treatment of MS. " April 16, 2006
FDA Makes Changes to the Labeling of Cipro (ciprofloxacin)
"Oral ciprofloxacin is used in MS primarily to treat or to prevent urinary tract infections. Tizanidine is approved for the treatment of spasticity. Anyone taking both of these medications should consult with his or her physician....." April 15, 2006
PODCAST: "Helping Kids with MS"-- [Download this presentation to your computer]:
[Dr. Lauren Krupp of The National Pediatric MS Center at Stony Brook]
VIDEO-PERSEVERANCE: True Heros: A physician battling MS channels her energy into helping patients with chronic illnesses [CLICK HERE TO VIEW VIDEO]
Chemokines in the cerebrospinal fluid of patients with active and stable relapsing-remitting MS
[National Institutes of Health]
STUDY: Longitudinal course of depression symptoms in MS
"CONCLUSIONS: Mood symptoms of depression are significantly more variable over time than neurovegetative or negative evaluative symptoms in MS patients. Decreased use of active coping strategies may put patients at risk of increased depressed mood, whereas increased use of active coping may result in decreased depressed mood longitudinally. Interferon beta use may put patients at risk of increases in depressed mood." [Penn State University]
Emotional and behavioural difficulties in children of parents with MS : A controlled study in Greece
[National Institute of Health]
[PERSEVERANCE-MS Heroes] I HAVE MS, BUT MS DOESN'T HAVE ME!
"I started out thinking it was my back, turned into loss of balance, droopyness to my left side of my face, to almost losing my vision. My left leg would just drag along with me and I could not bend my toes. That all happened within 1 month. I was on Copaxone for 8 months untill I had a severe allergic reaction.....now I am on Avonex.... I figure that there is not much I can do about it, except read all I can and keep up to date with MS. I have 2 wonderful children that I need to take care of. So I have MS......but it does not have me!" [Melissa Krumbach] April 14, 2006
Tysabri: "More Patients Are Beginning To Lose Patience With FDA"
"...A couple of recent surveys show that patients want the right to decide for themselves whether to use potentially risky drugs for chronic diseases. In both surveys 90% of respondents said patients, in consultation with their doctors, should be able to choose a prescription drug that might have side effects. Patients don't want the Food and Drug Administration restricting drugs that might benefit them, says John Calfee, an AEI resident scholar and author of its report. 'Once patients know the risks, they really think that the decisions should be made by them and their doctors,' Calfee said. The AEI survey was paid for by Biogen Idec, (BIIB) which, with Elan, (ELN) partnered to make the MS drug Tysabri....."
Novantrone: Teva Pharmaceutical said its generic version of Serono SA's Novantrone injection has been approved by the FDA. :
" Shipment of the product, which is indicated for use in combination with corticosteroids as initial therapy for the treatment of patients with pain related to advanced hormone-refractory prostate cancer, as well as in combination with other approved products for the initial therapy of acute nonlymphocytic leukemia in adults, will begin immediately."
Lilly Ventures Helps Fund Clinical Trial For MS :
"California-based Bayhill Therapeutics, Inc. has received an additional $15.8 million in funding from several groups including Lilly Ventures for a clinical trial for the treatment of MS"
PRESEVERANCE: TRUE HEROS..."Alan oldest of the four Osmond Brothers: the Children's Miracle Network Telethon that he and the Osmond Foundation established.
: "'Alan Osmond has persevered despite MS...Alan is the oldest of the four Osmond Brothers who performed weekly on the Andy Williams Television Show for seven years. A diagnosis of multiple sclerosis has not changed his enthusiasm for performing."
"STRESS BRINGS ON MY MS...": "Kathy Holmberg was 22, working as a clerk typist for the city of Los Angeles when the first signs of multiple sclerosis appeared. For Holmberg, stress often brings on an MS attack. The attacks affect everything, especially her eyes. She wears glasses with 10 prisms in the lenses to correct the double vision she experiences. Her vision problems increased after she and her husband divorced after 20 years of marriage. Once the stress diminished, her vision returned to its previous level.
She was in a relationship for two years with a special friend, Rich, also a body and fender man, when he died suddenly, throwing her body into shock again. I had been drinking...." April 13, 2006
Montel Williams: " "I miss my medication one or two days, I'm a mess. I'm a mess" ...[April 13...NBC]
Williams himself suffers from MS, has a message: "If you have trouble paying for prescription medication, there is help......."
Rhode Island's Medical Marijuana Program receives its first applicants
"Rhonda O'Donnell, a registered nurse who suffers from multiple sclerosis, was one of the individuals who filed an application under the Medical Marijuana Program. In an April 5 press release from the Medical Policy Project, O'Donnell expressed her appreciation of the act. "As a person struggling with the disabling effects of multiple sclerosis, I am grateful to have one more treatment option I can try without fear of arrest or jail," O'Donnell said....Since the act does not specify where the marijuana should come from, a patient with a marijuana registry identification card may obtain the drug from any source, Alexandre said.The act only stipulates that patients and their caregivers are protected from arrest and prosecution if found in possession of marijuana for medical purposes. This means patients can cultivate their own marijuana or have their caretakers grow it for them, Mirken said...." "
NEW BOOK: Cognitive Difficulties: Bringing a Hidden Symptom of MS Into the Light "When attorney Jeffrey N. Gingold misplaced his wife on the living room couch and became lost while driving just blocks from his home, little did he know that he was experiencing a hidden symptom of MS: cognitive difficulties.....Treatment begins with the realization that cognitive difficulties can also be a part of living with MS. This book brings the hidden cognitive disability of MS into the open. Although there are over 300 books in print about MS, none focuses on this particular issue from the perspective of the patient...available through Amazon.com, BarnesandNoble.com."
[PERSEVERANCE: True Heroes] Former Rolling Stone's Bassist Bill Wyman has personal reasons for helping MS charity: ..."Wyman initially formed a supergroup to perform charity benefit concerts for Action Research into MS (ARMS)....The chain of events leading to the formation of Willie And The Poor Boys began in the late 1970s when The Small Faces (later just The Faces) bassist Ronnie Lane was stricken with MS....."
PharmaFrontiers to Present Data on Adult Human T-Cell Vaccination Technology at the Federation of Clinical Immunology Societies Annual Meeting
The presentation is entitled:"Characterization and Clinical Response of a T-Cell Vaccination for MS"
NBC - Aricept Helps Those Suffering From Multiple Sclerosis:
"A drug commonly prescribed for Alzheimer's patients may also be helpful to people with MS. A memory test is the kind of neuro-psychological test used to evaluate Alzheimer's patients. But, Donna Sauer has MS, not Alzheimer's.'I was unable to recall simple details, dates, appointments I had,' said Sauer. 'I'm a school teacher, as you know, and um, I was not able to remember certain sentences that I would have to write on the board.....Therefore, because of the similarities between multiple sclerosis and Alzheimer's, physicians at Stonybrook University Hospital thought they would try using the popular Alzheimer's drug, Aricept, on patients with MS....'"
"CHROMOS TO MANUFACTURE MS DRUG CANDIDATE FOR TOXICOLOGY STUDIES AND CLINICAL TRIAL USING ACE SYSTEM"
Press Release: The manufacture and testing of a monoclonal antibody (CHR-1103) that may be helpful in controlling acute exacerbations in MS
PODCAST: "Discovering Better Treatments for MS: Today and Tomorrow--- Dr. Lawrence Steinman of Stanford University":
[Listen at your computer, includes transcript, slides, and additional resources on the topic...OR..Download the presentation to your computer] April 12, 2006
"Survey: MS patients want freedom to pick risky drug" [Tysabri]
"Survey has found that more than half would definitely or probably use a drug that significantly reduces frequency of relapse or progression in disability even if the drug involves a 1-in-1,000 chance of a fatal side effect. The survey was conducted by John E. Calfee for the AEI-Brookings Joint Center for Regulatory Studies, established by the American Enterprise Institute and the Brookings Institution."
Stronger Evidence Found Linking Epstein-Barr Virus and Risk of MS [press release: Harvard School of Public Health]:
"Researchers from the Harvard School of Public Health, Kaiser Permanente, and a team of collaborators have found further evidence implicating the Epstein-Barr virus (EBV) as a possible contributory cause to multiple sclerosis (MS). The study appears in the advance online edition of the June 2006 issue of Archives of Neurology."
Head injuries do not lead to MS - Reuters
"Head injuries do not seem to trigger the development of the degenerative neurological disease multiple sclerosis, according to a report by researchers from the University of Oxford in the UK. The hypothesis that trauma to the head might influence the development of multiple sclerosis in genetically predisposed individuals has been debated for several years. However, the link has not been studied conclusively, note investigators in the Journal of Neurology, Neurosurgery, and Psychiatry."
Comment: Elan [Tysabri] shareholders should not get carried away: "The Novartis product may have an edge, however, in that it can be taken orally, removing the need for injections or infusions. Analysts believe the product will enter the MS market in 2009."
Mount Sinai School of Medicine launches MS combination therapy trial Mount Sinai School of Medicine
"This trial is unique among placebo-controlled studies, in that none of the participants will receive placebo alone. All participants will receive at least one active, FDA-approved treatment..... " April 11, 2006
A Phase II study of the safety and efficacy of teriflunomide in multiple sclerosis with relapses
Oral immunomodulator shows promise in MS
ScienceDaily: Substance that can control T cells found
: "South Korean scientists have discovered a substance effective in dealing with diseases related to excessive autoimmune responses."
Bayhill Therapeutics Doses Patients With MS in a Phase II Trial and Raises an Additional $15.8 Million as an Extension to its Series B Financing: "Bayhill Therapeutics Inc. has begun dosing patients with BHT-3009, the company's experimental drug candidate, in a Phase II company sponsored trial for multiple sclerosis. The Phase II study is a multi-center, double-blind, placebo-controlled evaluation with an MRI endpoint. In a related development, current investors indicated strong support for Bayhill's antigen-specific tolerance platform by raising an additional $15.8 million in private equity. The company has now closed its Series B round totaling $51.2 million. "
April 10, 2006
Meredith Veiera, MS Caregiver, to Replace Katie Couric
Her husband, Richard Cohen, was diagnosed with MS in his early twenties, and she has been his primary caregiver for the majority of the time. She is a strong voice for the MS community and represents the realities of the disease in the public eye. The story of Veiera and Cohen's navigation of life with illness is told in Blindsided - A Reluctant Memoir.
Romance and MS
"Adults with multiple sclerosis find that self-acceptance and open communication can unlock the door to dating and intimacy.....(5 chapters)..How Soon Do You Tell?....Self-Acceptance Eases Disclosure....Issues of Intimacy....Causes of Sexual Dysfunction....Help for Sexual Dysfunction..."
Virus tied to MS in long-term study Reuters.com:
"Elevated blood levels of antibodies to Epstein-Barr virus (EBV) can be seen in multiple sclerosis (MS) patients decades before the onset of disease, according to a report published today.The current study is just the latest to link infection with this common virus with MS. What makes the current research novel is the period of time from blood sample collection to MS diagnosis -- 30 years in some cases."
Epstein-Barr Linked to MS: "Young adults with high levels of antibodies against the Epstein-Barr virus may be more likely to develop multiple sclerosis, says a U.S. study."
MSN Money - Reuters Business News: Serono pulls "for sale" sign, seeks acquisitions
Swiss biotech firm Serono SA has called off a five-month search for a suitor and launched a quest for acquisitions instead, the company announced on Monday, sending its share price plummeting
United Press International - Health Business - No patient waivers in Tysabri risk plan: "The risk-management plan that would accompany MS drug Tysabri's return to market will not include patient waivers. In a CNBC report Monday, Biogen Idec President and Chief Executive Officer James Mullen said the company is not looking to include in Tysabri's risk-management plan personal-injury waivers for patients to sign before taking Tysabri..."
Charities vie for dollars to stay alive on Illinois tax form : "People devoted to fighting multiple sclerosis are sending letters, posting notices online and contacting accountants to spread the word taxpayers can donate money to MS by checking a box on Illinois income tax forms"
April 09, 2006
COPAXONE: "Study finds that high dose of MS drug works better": "A high dose of Teva Pharmaceutical Industries Ltd.'s multiple sclerosis drug Copaxone is more effective at limiting relapses and brain lesions than the standard dose, without more side effects, researchers said on Wednesday.
'For some people a higher dose may work better,' said Dr. Jeffrey Cohen of the Cleveland Clinic's MS research center and lead investigator of a small nine-month trial comparing the two doses."
"Early Use Of Avonex Delays Risk Of Multiple Sclerosis For Up To 5 Years, Newly Published Data Show"
April 07, 2006
REBIF: NEW FORMULA: "....less incidence of inflammation at the site of injections"..."formulation developed fewer antibodies -- immune system proteins that might attack the medicine -- a favorable finding that typically suggests a drug will work longer."
"The company said late-stage trials of the new formulation showed a "substantial improvement in overall tolerability... including less incidence of inflammation at the site of injections."Serono said the trials also showed that patients taking the new formulation developed fewer antibodies -- immune system proteins that might attack the medicine -- a favorable finding that typically suggests a drug will work longer." [more : Reuters]
Nuevos datos de TYSABRI demuestran efectos significativos en evaluaciones de la calidad de vida relacionada con la salud, en pacientes con esclerosis multiple
"Datos presentados en el congreso anual de la Academia Estadounidense de Neurología demuestran impacto en evaluación de la función visual y el avance de la discapacidad. Elan Corporation, plc. (NYSE: ELN) anunciaron hoy que estudios de Fase III de TYSABRI (natalizumab) en esclerosis múltiple tuvieron efectos significativos en evaluaciones preespecificadas de la calidad de vida relacionada con la salud, además de los efectos reportados previamente en el avance de la discapacidad, el índice de reincidencia e imágenes de resonancia magnética. Datos presentados esta semana en la reunión anual de la Academia Estadounidense de Neurología en San Diego, California, también demostraron un impacto significativo sobre evaluaciones adicionales preespecificadas del avance de la discapacidad, incluso de las funciones visual y cognitiva...."
TYSABRI
Elan Corp. PRESS RELEASE: New Data on TYSABRI Demonstrate Significant Effects on Health-Related Quality of Life Measures in Patients with MS "TYSABRI Shows Improvement in Quality of Life Assessments....TYSABRI Impacts Measures of Visual Function....TYSABRI Impacts Measures of Disability Progression....TYSABRI Phase III Safety....MORE...."
NEW ORAL DRUGSNovartis press release: "Phase II data for FTY720 shows sustained efficacy and good tolerability over 18 months in patients with relapsing MS"
"The data, presented at the American Association of Neurology (AAN) meeting, showed that both patient groups taking FTY720 (1.25 mg and 5 mg) who had experienced more than a 50% reduction in their annualized relapse2 rate during the study's first six months compared to placebo maintained this low relapse rate during the subsequent 12-month extension. Currently marketed MS therapies afford an average reduction in relapse rates of only 30% in two-year studies and require frequent injections ranging from daily to weekly 3,4,5,6......"
TYSABRI PROBLEMS The Problems Associated with Natalizumab[TYSABRI], Coupled with the Withdrawal of the COX-2 Inhibitors in Late 2004, Have Created Increased Scrutiny in the Regulatory Process :
"More a4 integrin antagonists are under development for the treatment of asthma than for any other therapeutic area, but progress on these compounds has been slow. The safety concerns associated with long-term use and physicians' generally conservative prescribing attitude for this indication make the future of VLA-4 antagonists in this therapeutic market questionable. The problems associated with natalizumab, coupled with the withdrawal of the COX-2 inhibitors in late 2004, have created increased scrutiny in the regulatory process. In the short term, the FDA will likely begin demanding more-rigorous clinical trials of emerging agents. Other potential changes include increased transparency of clinical trial data and increasing FDA control over labeling and direct-to-consumer advertising."
In Children with Autoimmune Disease, Response Starts Early:
"Children with neurological autoimmune diseases develop immune reactions to other targets in their bodies and in food early in their disease, according to research that will be presented at the American Academy of Neurology 58th Annual Meeting in San Diego, Calif., April 1 - 8, 2006."
Singer-songwriter keeps hope close at handPERSEVERANCE-True Heroes: "Singer-Songwriter producing and starring in MS benefit with her big brother in mind"
TYSABRI
Breaking News: New Data on TYSABRI(R) Demonstrate Significant Effects on Health-Related Quality of Life Measures in Patients with MS Data presented at American Academy of Neurology Annual Meeting also Show Impact on Measures of Visual Function and Disability Progression April 06, 2006
NEW ORAL DRUGS...Novartis shows promising data on oral MS treatment FTY720, which is easier to administer and shows better tolerability and efficacy in tests than existing products.:
" Novartis Turns The Heat On Serono's Rebif ....Not good news for Serono (SRA) who's key product is Rebif, an injectable MS treatment, says Lombard Odier Darier Hentsch. Serono isn't completely defenseless, as it's also developing an oral MS treatment. But although this product is roughly one year ahead of FTY720, Serono has yet to disclose data that is equally compelling......"
PERSEVERANCE: TRUE HEROES...
AUDIO : Caregiver Role Brings Purpose to Kids Ashleigh Rehs' story is one of hope. It reveals how a young woman can rise to the occasion, becoming more able and more self-reliant. She's 15. Her mother, Valerie, has MS
NEW DRUGS..."About NeuroVax":
NEW DRUGS..."BioMS Medical's MBP8298 shows 5-year delay of MS disease progression..." :
" MBP8298 delayed disease progression for 5 years in progressive MS patients with HLA-DR2 or HLA-DR4 immune response genes. BioMS Medical Corp. also announced that treatment and follow-up of patients from a phase II clinical study demonstrated that patients in this DR2 and DR4 responder group, who comprise up to 75% of MS patients, had a median time to disease progression (worsening) of 78 months compared to 18 months for patients who received placebo."
PERSEVERANCE: True Heroes...Body builder who has MS continues to compete [ABC7Chicago.com]
Men With MS May may experience improvements in cognitive function and a slowing of brain atrophy From Testosterone Treatment: "Men with MS may experience improvements in cognitive function and a slowing of brain atrophy with testosterone therapy, according to research that will be presented at the American Academy of Neurology 58th Annual Meeting in San Diego, Calif., April 1 - 8, 2006."
NEW ORAL DRUGS...Novartis: MS pill efficacy sustained for 18 months:
"Drugmaker Novartis AG said on Thursday its experimental multiple sclerosis pill FTY720 continued to work well after patients used it for 18 months, supporting the case for the drug as it moves into decisive Phase III testing. Novartis said FTY720, which would be one of the first oral multiple sclerosis drugs on the market, showed sustained efficacy and good tolerability after 18 months in patients with a relapsing form of the disease. Data from a Phase II test, to be presented at a meeting of the American Association of Neurology, showed that patients taking the drug who had seen their relapse rate reduced by 50 percent after six months maintained the low relapse rate during the following 12 months....." April 05, 2006
NEW DRUGS...Laquinimod: experimental oral MS drug by Teva/Copaxone :
"Teva Vice President Rivka Kreitman said Teva expects to announce toward the end of this year results from a mid-stage trial of its experimental oral MS drug called Laquinimod."
NEW DOSAGE...Study finds that high dose of Copaxone works better:
"A high dose of Teva Pharmaceutical Industries Ltd.'s multiple sclerosis drug Copaxone is more effective at limiting relapses and brain lesions than the standard dose, without more side effects, researchers said on Wednesday.'For some people a higher dose may work better,' said Dr. Jeffrey Cohen of the Cleveland Clinic's MS research center and lead investigator of a small nine-month trial comparing the two doses."
Stem Cell Treatment Q&A - UK MS Society :
"The MS Society has been asked about recent developments for stem cell treatments to MS that have become available for sale."
No More Needles! Researchers Find New Ways to Vaccinate [Tulane University Press Release]
High-tech methods of vaccine delivery may make needles a thing of the past, if a Tulane University team succeeds in using nanotechnology that allows the absorption of vaccines through the skin. Tulane is slated to receive $2.3 million from the National Institutes of Health over four years for research into technology that will allow vaccines to cross directly through the skin barrier.
NEW DRUG COMBINATION...Combination Appears Safe in Relapsing-Remitting Multiple Sclerosis: Presented at AAN
: "The combination of interferon beta 1-a (Avonex) and azathioprine for use in multiple sclerosis (MS) patients is safe and well tolerated and potentially effective, according to preliminary results presented here at the 58th Annual Meeting of the American Academy of Neurology (AAN)." PERSEVERANCE: TRUE HEROES...Hollywood's Nancy DavisCLICK FOR MORE: "At age 33, Nancy Davis was diagnosed with Multiple Sclerosis, and told there was nothing she could do about it....Fourteen years later, Davis is not only still living a full and energetic life, she is helping others take control of their treatment. She has become a nationally recognized speaker about Multiple Sclerosis and founded the Center Without Walls, a national medical research organization. In her new book, Lean on Me, she talks about the important steps patients must take to gain control of their health and lives."
Smart Patients Get the Best Medical Treatment
That's good advice, says Dr. Mehmet Oz, professor of surgery at Columbia University. Unfortunately, he says, most patients don't educate themselves about their diagnosis or their treatment options. "Eighty per cent of people never ask for a second opinion, which is a big mistake," he says. "You'd never buy a car without getting a second opinion. The same holds true for getting a diagnosis from your doctor. One third of the time, those diagnoses are changed by what a second doctor may tell you."
PERSEVERANCE: TRUE HEROES... Marlee Cannon, founder MS Walk, jumped out of an airplane.: " At the time she had been living with MS for 10 years. As Marlee Cannon donned a banana yellow jumpsuit, her usually rapid repartee is stilted as one reoccurring thought pushes the obvious from her mind. The refrain of the country-western song, "live like you were dying" repeats in her mind bolstering her determination to defy her country-grown, common sense, and fear of heights, and hurl herself out of an airplane."
PERSEVERANCE: TRUE HEROES...Symptoms baffled doctors for nearly 20 years, but Mary Nell Wooten didn't let MS beat her
Early Treatment Delays MS Progression:
"Early treatment significantly delays the initial progression of multiple sclerosis, according to research that will be presented at the American Academy of Neurology 58th Annual Meeting in San Diego, Calif., April 1 - 8, 2006. Evidence suggests that immunomodulatory drugs (drugs that control the immune system) initiated early in the disease course of multiple sclerosis delays the disease's progression." April 04, 2006
REBIF: New Formulation...Serono Submits New Formulation of Rebif for Approval in the United States and in Europe
"Trial Data Show New Formulation of Rebif Offers Substantial Improvement in Overall Tolerability and Reduction in Antibody Formation. Data from a Phase III clinical trial in patients with relapsing forms of MS show that the new formulation of Rebif® results in a substantial improvement in overall tolerability, as measured by pre-specified parameters including injection site reactions, which are an important factor for patients when choosing an MS therapy. The trial data also show that the incidence of antibody formation with the new formulation of Rebif® is reduced. Serono expects data on the new formulation of Rebif® to be presented at a major medical conference in the second half of 2006......" JOIN ONE OF THE MS TRIALS AT BARROW
REBIF: "...new formulation of Rebif results in a substantial improvement in overall tolerability...":
PERSEVERANCE: True Heros..."Focused on a vision of service — Woman looks to help fellow MS patients"
PERSEVERANCE: True Heros...
Craig Coleman and his wife, Joyce Merritt, climbed to the top of Mount Kilimanjaro in Tanzania, Africa, this January to raise money for MS research.:
News Release: Schering Group - Sixteen-Year Follow-up Study Reinforces Betaferon Long-Term Efficacy, Safety and Tolerability in MS: "San Diego, USA, April 4, 2006..Schering AG, Germany (FSE: SCH, NYSE: SHR) announced today that Betaferon (interferon beta 1b) remained consistently safe, effective and well tolerated over the long term, according to results of the Betaferon 16-Year Long-Term Follow-up (16-Year LTF) Study presented at the 58th Annual Meeting of the American Academy of Neurology. This is the longest follow-up study for any disease modifying therapy in MS..."
Use of complementary and alternative medicine practitioners by people with physical disabilities: estimates from a National US Survey
CONCLUSIONS: Evidence from the current survey suggests that a significant proportion of people with physical disabilities consult CAM practitioners. Many of those who use CAM do so because it fits their lifestyle and because they perceive it to be more effective than conventional medicine for treating common symptoms including pain and decreased functioning. April 03, 2006THE "BARROW & ST. JOSEPH'S TEAM" AT THE 2005 MS WALKDON'T MISS THE 2006 WALK ON THE WILDSIDE AT THE ZOO: April 8th at 8 a.m. CLICK HERE FOR MORE PHOTOS OF THE "BARROW & ST. JOSEPH'S TEAM" AT THE 2005 WALK ON THE WILDSIDE AT THE PHOENIX ZOO
PERSEVERANCE: True Heros...
"In a twist of fate for their marriage, both Betty and Randy Gard found themselves stricken with MS.": Click to view our 14 page photo album: "2005 MS WALK ON THE WILD SIDE AT THE PHOENIX ZOO" DON'T MISS THE 2006 WALK AT THE ZOO: April 8th at 8 a.m. Biogen: Avonex delays MS risk
Newly Published Data Show Early Use of AVONEX Delayed the Risk of MS for up to 5 Years :
"Biogen Idec Inc. on Monday said a recent clinical trial showed its Avonex drug delayed the risk of developing definite multiple sclerosis for up to five years in patients who started treatment immediately after their first MS attack."
Medicare drug plan forces assistance programs to drop coverage...[more]: "hundreds of thousands of sick and disabled Americans who are eligible for Part D are being cut off from the 475 patient-assistance programs currently operated by pharmaceutical manufacturers, foundations and governmental agencies. It's an unintended side effect of the Medicare expansion.
Many drug companies are worried they will violate federal anti-kickback laws and be sued if they continue to offer patient assistance. The Betaseron Foundation, a not-for-profit group established in 1994 by New Jersey-based Berlex Laboratories, the distributors of Betaseron, decided that Part D would be a better deal for most of its Medicare-eligible clients, according to a foundation board member. 'After thorough discussion ... we felt it was a best policy position to have people sign up for Part D, because then they're going to get all their medications covered, not just Betaseron,' said Dr. Michael Earnest, a retired neurologist from Denver who sits on the foundation's board....."
REBIF: "Serono MS In Balance Webevent Series" - Upcoming Live Events:
"Choosing Rebif...The "Can Do Program" Approach with President of The Heuga Center...MS Communication Skills 101: How to Talk with Your Family & Friends about Your MS and Your Rebif Therapy...How to Talk to Your Doctor: Translating Doctor Talk...Visible and Invisible Signs of MS--It's Not Just In Your Head...Meet the MS Experts"
New Treatments...KineMed Announces Data from Program to Discover New Treatments for Neurodegenerative Diseases and Disorders of Mood and Cognition
April 02, 2006Heather Johnson - Top Fundraiser: 2005 MS WALK ON THE WILDSIDE AT THE ZOO: $12,544.89 CLICK HERE FOR HEATHER'S TEAM: "HOPE" April 01, 2006
Ventricular enlargement in MS: one-year change at various stages of diseaseCONCLUSIONS: Ventricular enlargement is a sensitive measure of progressive cerebral atrophy that is seen at all stages of multiple sclerosis (MS) and is more marked in secondary progressive than relapsing remitting MS.
Rebif | Serono reverses sale plan and seeks buysSerono, the Swiss biotechnology company that has been a takeover target for months, has changed tack, saying it would raise up to Sfr7bn (£3bn) to buy smaller rivals
: "John Latecki Jr. will resume a cross-country canoe trip in late April to promote MS awareness and set a world’s record for longest solo canoe trip by touching all 48 continental states. His sister, Julie McAfee, has MS.
MS Society to offer getaway for women affected by MS:
"The National Multiple Sclerosis Society, Minnesota Chapter invites women affected by multiple sclerosis to learn ways to cope with the changes MS brings to life at the Women’s Getaway Friday, April 21, to Sunday, April 23, at the Arrowwood Resort in Alexandria. The Paris-themed getaway will include workshops, activities and evening festivities designed for participants to have fun and learn ways to cope with MS. The getaway will also feature presentations by Joyce Nelson Shelhart, author and public speaker, and Judy Siegle, paralympic athlete and author. The getaway includes two nights lodging, meals and evening festivities, workshops and activity options. The getaway is $110 per person." WANT A WOMEN'S ONLY GETAWAY IN ARIZONA? WRITE ME...WE WILL TRY TO PUT ONE TOGETHER FOR YOU! stanswartz@mdhealthchannel |