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Saturday, December 6, 2014

Inspiring: Owner of Bucci's restaurant in Centennial waits tables in her wheelchair, despite multiple sclerosis

CENTENNIAL, Colo. - It's a restaurant in Centennial where all the patrons are known by name. It's one of those family-owned joints with unique character. There's also a very special woman who answers the phones, greets you at the door, even waits on you -- in her wheelchair. 
Sandy Lenthall owns Bucci's, a quaint Greek and Italian restaurant off Holly near County Line Road. She's owned it since 2006.
She was diagnosed with Multiple sclerosis back in 2000.
"I've had my struggles, but it's worth it," said Sandy.
The debilitating disease forced her into a wheelchair. That didn't stop her and her husband from buying Bucci's and running the business.
Sandy works six days a week. She glides around in her wheelchair taking drink orders, serving food, bussing tables and jotting down orders. 
"I don't consider myself confined at all," said Sandy.
Her hard work has inspired those who come in and eat on a regular basis. Randy Pye, the former Mayor of Centennial eats lunch at Bucci's all the time.
"I think her story already changes lives from everybody who walks in and sees she can maneuver around in a wheelchair," said Pye.
Sandy doesn't do it alone. She has a wait staff to take care of tables on busy days and nights. When she gets tired, she has a nice couch in her office to get a little rest.  
Despite her disability, customers say she runs a successful business with really good food.
"I'm not sure I want everybody knowing about it," said Pye. "It's the hidden gem."
Sandy may not be the fastest waitress, but her heart makes up for it as she fights M.S.
"I hate it," Sandy said talking about the disease. "These were the cards I was dealt, so you have to deal with it and go on.
Read more and watch a video by clicking here

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Friday, December 5, 2014

Neurologists Often Uncomfortable Discussing Certain MS Symptoms

November 30, 2014

Discussing multiple sclerosis (MS) symptoms is viewed positively by neurologists and patients, but remains a struggle, according to research presented at the joint ACTRIMS-ECTRIMS conference held September 10-13 in Boston.   

Surveyors from Harris Poll, on behalf of Biogen Idec, developed a survey which encompassed neurologists from 5 countries (Germany, Italy, Spain, the United States, and the United Kingdom) and representatives from patient advocacy groups between March and April 2014. The survey was conducted in order to gain a deeper understanding of MS patients’ lives and to highlight communication between MS patients and their doctors.   

About 83 percent of patients noted they felt comfortable talking with their neurologists about MS and reported their neurologist provided them with helpful information (81 percent). Nearly all neurologists surveyed (96 percent) felt they had an open dialogue with patients, and said patients can ask them anything they want. The majority of neurologists (90 percent) indicated they had a good understanding of their patients’ disease; however, the surveyors note a disconnect is still present surrounding certain MS symptoms.   Almost 20 percent of patients who experience MS symptoms report being uncomfortable with their neurologist about the following: difficulty walking (19 percent), tremors (19 percent), and muscle spasms (18 percent).

 However, only 2-3 percent of neurologists noted these same topics as uncomfortable for discussion with their patients. Neurologists across the board identified similar topics that were uncomfortable in discussion, and anticipate a higher level of discomfort than described by patients. These symptoms identified by neurologists as uncomfortable were: sexual difficulties (28 percent, with 87 percent perceiving this as uncomfortable for patients), bladder or bowel problems (28 percent, 54 percent), mood swings (26 percent, 37 percent), and cognitive or memory issues (21 percent, 37 percent). 

Continue Reading

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Aubagio for Relapsing-Remitting MS Now Funded in Alberta

Genzyme, a Sanofi company with over 30 years of dedication to researching and developing novel treatments for rare and orphan diseases, has just announced the Alberta Drug Program has finally decided to include Aubagio® (teriflunomide) 14mg in the provincial drug formulary, indicated for the first-line treatment of patients with relapsing remitting multiple sclerosis (RRMS). Alberta, Canada has one of the highest rates of MS worldwide, with over 14,000 residents diagnosed with some form of this neurodegenerative, autoimmune disease. Now, more Albertans with MS can gain access to Aubagio, a novel, orally stable drug capable of reducing exacerbations and delaying the development of physical disabilities.
Aubagio was first approved in Canada in November of 2013. While the drug’s exact mechanism of action as an immunomodulator and anti-inflammatory is not known, it is thought to greatly reduce the amount of harmful lymphocytes that attack the protective myelin sheath. The drug has performed impressively in over 5,000 study participants across 36 countries, with patients in extension trials still benefitting from the treatment even 10 years later.

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Scientists Block Multiple Sclerosis in Mice Using Estrogen-Like Drug

Estrogen and MSA team of researchers at the University of California, Riverside, along with other collaborators, have identified a drug associated with estrogen, indazole chloride (Ind-Cl), that blocks the effects of multiple sclerosis (MS). The findings were reported December 1st in the Proceedings of the National Academy of Sciences.
MS is an autoimmune disorder and central nervous system disease. In MS, the immune system attacks the myelin sheath, which normally wraps around nerve fiber axons and helps them to transmit information. The damage to myelin that occurs in MS can cause unpredictable impairment of movement, vision, and sensation. The disease is typically diagnosed between the ages of 20 and 40, and is seen more often in women than in men. About 2.3 million people worldwide (300,000 to 400,000 in the United States) are diagnosed with MS.
In this study, Ind-Cl was given to mice with an experimental form of MS, known as chronic experimental autoimmune encephalomyelitis (EAE). The drug improved movement and reduced cellular effects that are caused by MS, specifically inflammation and immune system responses. Myelination of axons also increased.
“We found that remyelination occurred more efficiently in such mice after they were given Ind-Cl,” stated Seema K. Tiwari-Woodruff, associate professor in the UC Riverside School of Medicine and leader of the study. “This means Ind-Cl works in two ways: through the immune system in terms of reducing brain and spinal cord inflammation, and directly by remyelinating the axons. This makes it an extremely promising drug.”

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CreateWriteNow Launches Journaling Challenge that May Help MS Patients Cope with Disease

journalKeeping a journal may help patients suffering from severe and chronic diseases deal with their conditions, as well as with the stress and emotions that accompany symptoms. In a real-life testament to this, Mari L. McCarthy, who suffers frommultiple sclerosis and started using journalingto cope with it, is launching a new 27-day program to improve both health and happiness, starting on January, 1st, 2015.
Peace of Mind and Body: 27 Days of Journaling to Health & Happiness is McCarthy’s journaling plan marketed by her company CreateWriteNow, which is dedicated to teaching people how to use daily journaling as a way of achieving self-discovery, personal transformation and health. It is already the fifth edition of the 27-day program and the most popular one offered by her company.
The program, which consistently beats its own participation records every year, is based on self exploration, healing and growth through the completion of a series of daily journaling exercises and prompts. The purpose is to help patients explore their personal challenges, rewire negative mindsets, and craft personal objectives — all in the same way that journaling helped McCarthy herself.
“The 27 Days Challenge is best suited for experienced journalers who understand the importance of a daily pen-to-page practice,” said McCarthy. “Of course, both experienced journalers and beginners alike can benefit from journaling, but it’s so important to stay committed throughout the complete program. Understanding the importance—and impact—of staying on-track is the key to successful outcomes.”
MS patients and other people alike will be able to use program’s related eWorkbook, which includes tips, inspirations and recommendations, as well as the program’s social medial networks, in which patients can interact with one another. The 27-day Journaling Challenge is free of charge to patients, and only requires purchase of the eWorkbook, which can be purchased on the website.
More information is available at
In addition to the program, CreateWriteNow also offers other helpful materials, since it publishes regular articles, journaling prompts, videos and eBooks and holds a number of interactive journaling challenges. Mari McCarthy founded the company to help others and share her own life experiences, as she uses journaling herself to cope with the severe and chronic disease multiple sclerosis.

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Secondary progressive multiple sclerosis therapeutic pipeline market review for 2014 just published

The report “Secondary Progressive Multiple Sclerosis (SPMS) Pipeline Review, H2 2014” provides an overview of the Secondary Progressive Multiple Sclerosis (SPMS)’s therapeutic pipeline.

This report provides comprehensive information on the therapeutic development for Secondary Progressive Multiple Sclerosis (SPMS), complete with comparative analysis at various stages, therapeutics assessment by drug target, mechanism of action (MoA), route of administration (RoA) and molecule type, along with latest updates, and featured news and press releases. It also reviews key players involved in the therapeutic development for Secondary Progressive Multiple Sclerosis (SPMS) and special features on late-stage and discontinued projects.

This report features investigational drugs from across globe covering over 20 therapy areas and nearly 3,000 indications. The report is built using data and information sourced from Global Markets Direct’s proprietary databases, Company/University websites, SEC filings, investor presentations and featured press releases from company/university sites and industry-specific third party sources, put together by Global Markets Direct’s team. 

Drug profiles/records featured in the report undergoes periodic updation following a stringent set of processes that ensures that all the profiles are updated with the latest set of information. Additionally, processes including live news & deals tracking, browser based alert-box and clinical trials registries tracking ensure that the most recent developments are captured on a real time basis.
The report enhances decision making capabilities and help to create effective counter strategies to gain competitive advantage. It strengthens R&D pipelines by identifying new targets and MOAs to produce first-in-class and best-in-class products.
  • The report provides a snapshot of the global therapeutic landscape of Secondary Progressive Multiple Sclerosis (SPMS)
  • The report reviews key pipeline products under drug profile section which includes, product description, MoA and R&D brief, licensing and collaboration details & other developmental activities
  • The report reviews key players involved in the therapeutics development for Secondary Progressive Multiple Sclerosis (SPMS) and enlists all their major and minor projects
  • The report summarizes all the dormant and discontinued pipeline projects
  • A review of the Secondary Progressive Multiple Sclerosis (SPMS) products under development by companies and universities/research institutes based on information derived from company and industry-specific sources
  • Pipeline products coverage based on various stages of development ranging from pre-registration till discovery and undisclosed stages
  • A detailed assessment of monotherapy and combination therapy pipeline projects
  • Coverage of the Secondary Progressive Multiple Sclerosis (SPMS) pipeline on the basis of target, MoA, route of administration and molecule type
  • Latest news and deals relating related to pipeline products
Reasons to Access

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Neuromyelitis Optica (NMO) and Multiple Sclerosis

2014-12-04 07:32
neuromyelitis optica and multiple sclerosis
When clinicians are considering a diagnosis of multiple sclerosis, one of the other diseases that may be on their radar is neuromyelitis optica. That’s because neuromyelitis optica and multiple sclerosis share some critical characteristics.
Neuromyelitis optica (NMO) is about one hundred times less common than multiple sclerosis, with an estimated 4,000 individuals having the diagnosis in the United States, according to the National Multiple Sclerosis Society, compared with more than 400,000 cases of multiple sclerosis. In both disorders, damage occurs to the myelin cells:
  • In NMO, the optic nerve cells and spinal cord cells are typically the only ones affected during the early stages of the disease. However, lesions may be seen in some areas of the brain. Symptoms of neuromyelitis optica include rapid onset of eye pain, loss of vision, lack of sensation, bowel and bladder problems, and weakness or paralysis of the arms or legs.
  • In multiple sclerosis, lesions typically affect the brain, spinal cord, and optic nerve.
  • In neuromyelitis optica, the body usually develops antibodies (NMO-IgG) to attack the aquaporin 4 antigen. These antibodies often, but not always, can be detected in the blood of individuals with the disorder. That is, you could have a false negative NMO-IgG test result.
  • In multiple sclerosis, no specific antigen has been found, although countless studies have been performed in attempts to definitively identify them.

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Thursday, December 4, 2014

Dorsiflexion Assist Orthosis Helps MSers Walk

Researchers in Australia recently tested the dorsiflexion assist orthosis, better known as the Foot-Up, in a randomized crossover trial. They found that the device helped improve strength and reduce the physiological cost of walking, but that patients still felt as fatigued as they did without the device.

Progressive physical disability is a grim reality for people living with multiple sclerosis. While many researchers and physicians are racing for a cure, others are focusing on how to make MSers’ lives better and more functional in the here and now.

The Foot-Up dorsiflexion assist orthosis.
The Foot-Up dorsiflexion assist orthosis.
Recently, a team of researchers in Australia put a popular walking aid to the test. The aid, called the dorsiflexion assist orthosis (DAO, brand name Foot-Up, Össur) is made of a flexible material that attaches around the ankle. From the front (anterior) side of the ankle brace, an elastic tether extends toward the top of the shoe, to help keep the toes up while walking. It aids the ankle dorsiflexor muscles, which normally lift the front of the foot, to keep the person walking from tripping over his or her own toes.

While people with MS have been using the device for some time, it had yet to be tested in a clinical setting to determine whether it had any measurable effect on people with MS, lead author James McLoughlin, M.Sc., of the University of New South Wales told MSDF in an email.

McLoughlin and his colleagues decided to test the DAO in a randomized crossover trial (McLoughlin et al., 2014). A total of 34 patients were divided into two groups. Both groups had their degree of disability determined using the Expanded Disability Status Scale (mean = 3.7 ± 0.7) and their baseline walking ability measured using the modified 6-minute walking test. The team also determined which leg was weaker in each patient and did tests assessing strength and balance.

Then the participants were split into two groups, one that used the DAO and one that didn’t. They underwent the same assessments, came back 2 weeks later, and did them again under the same conditions.

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MRI Education May Benefit MSers - (See the changing brain imaging)

December 2, 2014

People with MS often feel anxious about MRIs and frequently lack basic knowledge of this diagnostic procedure. Is an education program that creates “expert patients” the answer?

Persons with multiple sclerosis (MS) often feel stressed while in the magnetic resonance imaging (MRI) scanner and then feel in the dark regarding MRI findings, according to asurvey reported online November 21 in PLOS ONE (Brand et al., 2014). Results of this study support the need for an evidence-based MRI education program, say the study authors.

Credit: Wikimedia Commons user Waglione.
Credit: Wikimedia Commons user Waglione.
“[MRI] is a key diagnostic and monitoring tool in [MS] management,” wrote Judith Brand, Institute of Neuroimmunology and Clinical MS Research and Department of Neurology, UMC Hamburg Eppendorf in Germany, and colleagues. “However, many scientific uncertainties, especially concerning correlates to impairment and prognosis[,] remain. Little is known about MS patients’ experiences, knowledge, attitudes, and unmet information needs concerning MRI.”

The investigators conducted five qualitative interviews and a survey of 104 persons with MS to determine their experiences with MRI and their level of basic MRI knowledge. These data allowed the investigators to develop a 2-hour interactive training program, which they tested in 26 participants.

Knowledge gaps

Based on analysis of the interview data, participants often described feeling lost in the MRI scanner and lacking counseling regarding their MRI findings. Interviewees described substantial fear about MRI findings, even though the survey showed that most patients knew that lesions are not strongly correlated with disability or with prognosis.


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The Design of MRI-Related Clinical Trials in MS

Developed by Khawai.

Understanding and analyzing the design of past clinical trials is a key factor in planning future trials.

This visualization details the design of 88 clinical trials with magnetic resonance imaging (MRI) reports published between 1993 and 2014. It makes it easy to see which of five key measurements were reported in each trial and when during the course of that trial those measurements were made.

The measurements are:
  • Brain Volume
  • T2-hyperintense lesion volume (Volume T2)
  • Combined Active Lesion (CAL)
  • Gadolinium-enhancing lesion (GdEnh Lesion)
  • Expanded Disability Status Scale (EDSS)

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MS Focus: Kids With MS Have Lower Brain Volumes

Brain volumes in children with multiple sclerosis (MS) were smaller than in those without the disease due to a lack of age-expected brain growth and progressive atrophy, researchers reported.

Using longitudinal MRI data from patients with relapsing-remitting MS onset prior to age 18, Berengere Aubert-Broche, PhD, of McGill University in Montreal and colleagues noted that "significant group and age interactions were found with the adjusted models fitting brain volumes and normalized thalamus volumes (P<0.10-4)." They also found that T2 lesion volume correlated with a greater reduction in age-expected thalamic volume compared with children without MS.


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TAKE MS ACTION - LIVE Webcast - December 6th with Madeleine Stowe

this Saturday - December 6th
See BELOW and register

Aubagio Logo
AUBAGIO® is available in 14 mg and 7 mg tablets.
Trouble viewing? View as a Web page
Do not take AUBAGIO if you have severe liver problems,
are pregnant or are of childbearing age and not using effective birth control, or are taking a medication called leflunomide.
Please click here for full Prescribing Information,
including boxed WARNING and Medication Guide
genzyme - A SANOFI COMPANY - LIGHTS, CAMERA, TAKE ACTION ON MS - Featuring Madeleine Stowe
Madeleine Stowe is Coming to You Live!
Genzyme has teamed up with TV and film actress Madeleine Stowe to launch “Lights, Camera, Take Action on MS.” This program is aimed at providing education and resources to people living with relapsing forms of multiple sclerosis and their families – so they can take action to help manage the disease.
Event Location: Live Online Webcast
Event Address: Webcast details to be emailed to registrants 5 days prior to event
Event Date: December 6, 2014
Visit to sign up for this live event. Madeleine will share her personal connection to the disease, and you can learn about topics ranging from managing stress and maintaining energy to the emotional impact of MS.
Go to to learn about the impact of AUBAGIO 14 mg on relapse rates, disability progression and lesions on MRI scans.
AUBAGIO® (teriflunomide) is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS).
Do not take AUBAGIO:
• If you have severe liver problems. AUBAGIO may cause serious liver problems, which can be life-threatening. Your risk may be higher if you take other medicines that affect your liver. Your healthcare provider should do blood tests to check your liver within 6 months before you start AUBAGIO and monthly for 6 months after starting AUBAGIO. Tell your healthcare provider right away if you develop any of these symptoms of liver problems: nausea, vomiting, stomach pain, loss of appetite, tiredness, yellowing of your skin or whites of your eyes, or dark urine.
• If you take a medicine called leflunomide.
• If you are pregnant or are of childbearing potential and not using effective birth control. AUBAGIO may harm an unborn baby. You should have a pregnancy test before starting AUBAGIO. After stopping AUBAGIO, continue to use effective birth control until you have made sure your blood levels of AUBAGIO are lowered. If you become pregnant while taking AUBAGIO or within 2 years after stopping, tell your healthcare provider right away and enroll in the AUBAGIO Pregnancy Registry at 1-800-745- 4447, option 2.
It is not known if AUBAGIO passes into breast milk. Your healthcare provider can help you decide if you should take AUBAGIO or breastfeed – you should not do both at the same time.
If you are a man whose partner plans to become pregnant, you should stop taking AUBAGIO and talk with your healthcare provider about reducing the levels of AUBAGIO in your blood. If your partner does not plan to become pregnant, use effective birth control while taking AUBAGIO.
AUBAGIO may stay in your blood for up to 2 years after you stop taking it. Your healthcare provider can prescribe a medicine that can remove AUBAGIO from your body quickly.
Before taking AUBAGIO, talk with your healthcare provider if you have: liver or kidney problems; a fever or infection, or if you are unable to fight infections; numbness or tingling in your hands or feet that is different from your MS symptoms; diabetes; serious skin problems when taking other medicines; breathing problems; or high blood pressure. Your healthcare provider will check your white blood cell count and TB test before you start AUBAGIO. Talk with your healthcare provider if you take or are planning to take other medicines (especially medicines for treating cancer or controlling your immune system), vaccines, vitamins or herbal supplements.
AUBAGIO may cause serious side effects, including: reduced white blood cell count – this may cause you to have more infections; numbness or tingling in your hands or feet that is different from your MS symptoms; kidney problems; high potassium levels in your blood; serious skin problems; breathing problems (new or worsening); and high blood pressure.
The most common side effects when taking AUBAGIO include: abnormal liver test results; hair thinning or loss; diarrhea; flu; upset stomach; and burning or prickling feeling in your skin. These are not all the side effects of AUBAGIO. Tell your healthcare provider about any side effect that bothers you.
Consult your healthcare provider if you have questions about your health or any medications you may be taking, including AUBAGIO.
You are encouraged to report side effects of prescription drugs to the FDA.
Visit or call 1-800-FDA-1088.
Please click here for full Prescribing Information, including boxed WARNING and Medication Guide.