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Friday, November 7, 2014

Clearing Away MS Brain Fog

Image result for brain fog pics

Article source found here

WebMD Feature

You’re having a conversation, and suddenly you can't remember the right word -- or the wrong words come tumbling out of your mouth. You're cooking dinner, the timer's going off, but you can't remember why you set it.

When brain fog clouds your thinking, you may feel frustrated or embarrassed. You may also wonder what it means for your MS. But don’t worry. It happens. With your doctor’s help and some new techniques, you can learn ways to work around it.
MS Overview Slideshow
MS Relapse Slideshow

4 Brain Fog Basics

Brain fog is a catchall term for all sorts of brain changes that can come with MS. Here are four things to know.
  1. It's common. About half the people with MS have these issues at some point, says Rosalind Kalb, PhD, a clinical psychologist and vice president of clinical care at the National Multiple Sclerosis Society. For most, the cloudy thinking is mild and manageable. Only 5% to 10% of people with MS have issues with their thinking that seriously affect their day-to-day life or career.
  2. It can affect your short-term memory, attention, and concentration. It can muck up your ability to retain new information and plan.But it doesn't usually affect your intelligence, reading comprehension, or long-term memory.
  3. It may get worse over time, but it may not. Once you have episodes of brain fog, they usually don't go away completely. They are more likely to progress slowly.
  4. It can have many causes. Sometimes the fog is triggered by actual changes in the brain caused by MS. But it can also be brought on by other issues -- like depression, fatigue, and side effects from medication.

Tips for Managing Brain Fog

Pinpoint the cause. Talk to your doctor. You could have an underlying and treatable condition -- like depression -- that's to blame for your fuzzy thinking. Taking medications for bladder problems and having trouble sleeping can also leave you foggy, says Cindy Richman, senior director of patient and health care relations at the Multiple Sclerosis Association of America.
Get organized. If your memory is unreliable, stop relying on it. "You really have to replace your memory with organization," Kalb says. Get in the habit of writing everything down. 
Have a family calendar. Hang it in the kitchen or another central place where you and the rest of your family will see it many times a day. "Everyone in the family from age 6 or 7 and up should be responsible for adding to it," Kalb says.
Use tech. Your smartphone can be an ally. Try out MS-specific apps as well as alarms to keep you on track. You can set reminders to go off right where you need them -- like the supermarket or drugstore.

Cut down on distractions. Brain fog can make it harder to filter out background noise and other things that can take your attention. So if you need to concentrate on a task or conversation, turn off the TV or go to a quiet space.

Here is another source to read about Brain Fog

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MS Genetics: The Outer Limits

Nov 4, 2014

In a mashup of data sets and new genome-mapping tools, a study finds that most of the inherited risk for autoimmune disease discovered so far comes from mysterious noncoding regions and mostly affects immune cells

Since 2007, ever larger and more powerful genome-wide association studies (GWAS) have found over 150 genetic variants that are more common in people with multiple sclerosis (MS), compared to those who do not have the disabling inflammatory disease of the brain and spinal cord. But there’s a catch.

That impressive number refers mostly to signposts marking chunks of chromosomes where researchers have assumed a guilty gene lurks. The risk from each variant is low, but in an unlucky mix they can add up. The reason for doing GWAS hasn’t changed: Find the specific genetic variants, explore the contributing molecular pathways, and develop better therapies tailored to the disease.

But an uncomfortable question has crept into the discussion about exactly how to pinpoint the culprits.

“What if we find them, and they’re not in the genes?” That’s one of the questions Alexander Marson, M.D., Ph.D., of the University of California, San Francisco, and his colleagues asked 5 years ago when they launched their study. It doesn’t take a computational biologist to figure those odds. Protein-coding genes make up about 2% of the human genome. Although researchers have only begun to probe the secrets of the vast noncoding regions, their mysterious functions seem to be important in health.

Last week, the team’s findings confirmed what many had begun to suspect. Nearly 90% of the slightly risky variants known so far for MS and other autoimmune diseases lie outside of protein-coding genes. About 60% fall on DNA addresses known as enhancers or switches, which manage gene activity in mostly enigmatic ways.

The study, published online October 29 in Nature (Farh et al., 2014), contributes a trio of research tools, developed with MS data and generalized to other diseases, said Marson, a co-first author. First, it presents a new statistical way to more finely map disease variants from high-powered GWAS with more certainty.

Second, the team created maps of the DNA regions open for enhancer activity in various types of stimulated immune cells, filling in gaps in the epigenomic data collected for human cells.

Finally, when they combined the overall genetic risk maps with the distinctive enhancer maps of immune and other cells, the researchers picked out the cells most likely at the heart of MS and other autoimmune diseases.

In a mashup of databases, MS clusters with other autoimmune diseases from asthma to ulcerative colitis based on cell types with risk factors in key enhancers. Within the immune cluster, MS displays a distinctive signature of genetic risk factors affecting selected stimulated T cells and B cells. Credit: <em>Nature</em>, Farh <em>et al</em>. (2014).
In a mashup of databases, MS clusters with other autoimmune diseases from asthma to ulcerative colitis based on cell types with risk factors in key enhancers. Within the immune cluster, MS displays a distinctive signature of genetic risk factors affecting selected stimulated T cells and B cells. Credit:Nature, Farh et al. (2014).

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Ottawa doctors to publish report after removing Multiple Sclerosis from 35 out of 36 patients in ground-breaking study

information provided by Rusty

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MS Activist Connector


Ask Congress to Fund MS Research from Pipeline to Approval

Congress will soon return to Washington, D.C., to tackle outstanding issues before the end of the year – including the federal budget. The long-term funding of agencies and programs important to MS research and developing new treatments remains uncertain. This includes the National Institutes of Health, the MS Congressionally Directed Medical Research Program, and the Food and Drug Administration. Ask Congress to invest in medical research and progress in 2015.
Take Action

MS Carepartner Takes Charge in California

November is National Family Caregivers Month! Kevin Chapman’s wife, Rachel, was diagnosed with MS in 2004, and – while the uncertainty of MS brings many changes – their strong partnership helps them adjust to whatever the future holds. In September, Kevin testified before the California Assembly Committee on Aging and Long-Term Care where he asked lawmakers to identify new solutions for caregivers of all ages and income levels. Watch below for highlights!
Kevin Chapman testifies before the California Assembly

“Stop The Therapy Cap” Campaign

Roughly 25% of people with MS in the U.S. could be affected by Medicare’s annual cap on rehabilitative services. This is why The National MS Society has joined the “Stop the Therapy Cap” campaign to repeal Medicare caps that prevent people from accessing services including occupational and physical therapy, and speech-language pathology. An ad will be placed in a congressional newspaper, Roll Call, this November.
&quot;Stop The Therapy Cap&quot; Campaign

the information found above is a product of The National MS Society

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The Progressive MS Alliance invites you to join an informational call to learn more about a new funding initiative just released by the Alliance.

The Progressive MS Alliance invites you to join an informational call to learn more about a new funding initiative just released by the Alliance.

The Progressive MS Alliance is connecting resources and experts around the world to find answers and develop solutions to end progressive MS. The Alliance drives scientific progress through funding the best research wherever it exists, with the ultimate goal of realizing the development of new treatments for people with MS.

The Alliance has just released a new Request for Applications for Collaborative Network Awards. The purpose of the new grant round is to enable and leverage global collaborative networks of excellence engaged in transformative research.  Networks must consist of at least three organizations and a minimum of three countries must be represented in the network. 

Phase I Collaborative Network Planning Awards 12 months
Applications accepted from 15th December 2014 through 31st January 2015

Phase II Collaborative Network Awards 4 years
Applications accepted from planning award recipients 1st March 2016 through 1st May 2016

Please join an upcoming Informational teleconference:
·       18 November 2014, 10:00 Eastern Standard Time (15:00 UTC)
·       9 December 2014, 10:00 Eastern Standard Time (15:00 UTC)
·       10 December 2014 Noon Australian Eastern Time (01.00 UTC)
Dial-in information for all callers available at:www.ProgressiveMSAlliance.org/research

Expected outcomes of the Collaborative Network within Phase II funding period:
·       Development of one or more pre-clinical drug candidates
·       Development of meaningful outcome measures that could be integrated into early clinical development
·       Initiation of pharmacological clinical trials of new interventions for progressive MS
·       Validation of clinical rehabilitative strategies/interventions

Full descriptions of the topics and the application instructions are available at:www.ProgressiveMSAlliance.org/research

We encourage proposals from all disciplines, and ask you to apply and share this information with any colleagues who may be interested in this round of awards.

Article source found here

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Tuesday, November 4, 2014

Cognitive Decline Tracked in Multiple Sclerosis in Longitudinal Study

By Rachel Lutz | November 03, 2014

    Cognitive abilities declined during a longitudinal study of multiple sclerosis (MS) patients, according to research published by the Kessler Foundation and the Cleveland Clinic. The study is one of the longest longitudinal studies of cognition in MS.  

 The researchers wanted to explore and track the cognitive impairment among 22 patients enrolled an ongoing phase 3 trial of intramuscular interferon beta-1a. The participants underwent a longitudinal investigation which compared neuropsychological test performances at baseline and at the 18-year follow up. The patients were enrolled in the original Avonex study conducted in the early 1990s. - 

“While cognitive impairment is known to affect 40 to 65% of individuals with MS, few studies have followed the pattern of cognitive decline over time, which is important for understanding long-term care and outcomes associated with MS,” author Lauren B Strober, PhD senior research scientist at Kessler Foundation, said in a press release. “Our study was based on a unique sample of 22 patients who underwent neuropsychological testing at entry into the original phase 3 clinical trial of intramuscular interferon beta-1a, and again at 18-year follow up.”  

 Declines were observed in the MS patients in areas such as information processing speed, simple and complex auditory attention, episodic learning and memory, and visual constructions. Nearly half of the patients (41 percent) were found to be cognitively impaired at baseline. At the 18-year mark, 13 patients (59 percent) were found to be cognitively compared, when evaluated by the researchers. Both the unimpaired and impaired groups of patients appeared to experience cognitive decline using these measures. One measurement scale, the Symbol Digit Modalities Test showed a group × time interaction. The researchers determined this scale displayed a steeper decline in the unimpaired than the impaired group compared to baseline measurements. -

 See more at: http://www.hcplive.com/articles/Cognitive-Decline-Tracked-in-Multiple-Sclerosis-in-Longitudinal-Study#sthash.FrOVWfOV.dpuf

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Genzyme Announces Enrollment of First Patient in Phase II Vatelizumab Trial in Relapsing Remitting Multiple Sclerosis

Cambridge, Mass. - Nov. 4, 2014 - Genzyme, a Sanofi company, announced today enrollment of the first patient in a multicenter Phase II clinical trial to evaluate Genzyme’s investigational infusion therapy vatelizumab in patients with relapsing remitting multiple sclerosis (RRMS). The trial, called EMPIRE, is designed to assess the efficacy of vatelizumab vs. placebo in RRMS patients. The safety, tolerability and pharmacokinetics of vatelizumab will also be assessed.

Multiple sclerosis is a chronic inflammatory demyelinating and neurodegenerative disease of the central nervous system (CNS). Uncontrolled inflammation within the CNS leads to inflammatory damage that is associated with demyelinating lesions and neurodegeneration in patients with MS.  Vatelizumab is a humanized monoclonal antibody that targets VLA-2, a collagen-binding integrin expressed on activated lymphocytes. The mechanism of action of vatelizumab is not known, although it is hypothesized to block VLA-2 on activated immune cells, leading to interference with collagen-binding in areas of inflammation, and thus may reduce the inflammatory cascade in MS.

“Continuous inflammation and neurodegeneration from the onset of multiple sclerosis can lead to significant disability,” said Eva Havrdova, MD, PhD, MS Center, Department of Neurology, First Medical Faculty, Charles University, Prague. “The EMPIRE trial should enable us to assess vatelizumab’s ability to impact the acute inflammatory components of MS and evaluate its potential as an effective MS treatment.”
Genzyme is developing vatelizumab in MS in partnership with Glenmark Pharmaceuticals. In addition to its marketed therapies, Genzyme has an MS R&D pipeline focused on investigational treatments to address unmet needs for relapsing and progressive forms of MS through research in selective immunomodulation, neuroprotection and remyelination.
“We are pleased to commence patient enrollment for our vatelizumab trial in relapsing MS,” said David Meeker, President and CEO, Genzyme. “This milestone demonstrates Genzyme’s long-term commitment to MS and aligns with our pipeline strategy to focus on areas of unmet need.”

EMPIRE is a global phase 2a/2b double-blind, randomized, placebo-controlled study assessing the efficacy, safety and dose-response of vatelizumab in patients with active RRMS.  The study duration is 12 weeks.  The study is expected to enroll 168 patients at 55 sites in 10 countries. For more information about the vatelizumab trial, visit www.clinicaltrials.gov.
About Genzyme, a Sanofi Company
Genzyme has pioneered the development and delivery of transformative therapies for patients affected by rare and debilitating diseases for over 30 years. We accomplish our goals through world-class research and with the compassion and commitment of our employees. With a focus on rare diseases and multiple sclerosis, we are dedicated to making a positive impact on the lives of the patients and families we serve. That goal guides and inspires us every day. Genzyme’s portfolio of transformative therapies, which are marketed in countries around the world, represents groundbreaking and life-saving advances in medicine. As a Sanofi company, Genzyme benefits from the reach and resources of one of the world’s largest pharmaceutical companies, with a shared commitment to improving the lives of patients. 
Learn more at www.genzyme.com.

About Sanofi
Sanofi, a global healthcare leader, discovers, develops and distributes therapeutic solutions focused on patients’ needs. Sanofi has core strengths in the field of healthcare with seven growth platforms: diabetes solutions, human vaccines, innovative drugs, consumer healthcare, emerging markets, animal health and the new Genzyme. Sanofi is listed in Paris (EURONEXT: SAN) and in New York (NYSE: SNY).

Genzyme® is a registered trademark of Genzyme Corporation.  All rights reserved.

Sanofi Forward Looking Statements
This press release contains forward-looking statements as defined in the Private Securities Litigation Reform Act of 1995, as amended. Forward-looking statements are statements that are not historical facts. These statements include projections and estimates and their underlying assumptions, statements regarding plans, objectives, intentions and expectations with respect to future financial results, events, operations, services, product development and potential, and statements regarding future performance. Forward-looking statements are generally identified by the words “expects”, “anticipates”, “believes”, “intends”, “estimates”, “plans” and similar expressions. Although Sanofi’s management believes that the expectations reflected in such forward-looking statements are reasonable, investors are cautioned that forward-looking information and statements are subject to various risks and uncertainties, many of which are difficult to predict and generally beyond the control of Sanofi, that could cause actual results and developments to differ materially from those expressed in, or implied or projected by, the forward-looking information and statements. These risks and uncertainties include among other things, the uncertainties inherent in research and development, future clinical data and analysis, including post marketing, decisions by regulatory authorities, such as the FDA or the EMA, regarding whether and when to approve any drug, device or biological application that may be filed for any such product candidates as well as their decisions regarding labelling and other matters that could affect the availability or commercial potential of such product candidates, the absence of guarantee that the product candidates if approved will be commercially successful, the future approval and commercial success of therapeutic alternatives, the Group’s ability to benefit from external growth opportunities, trends in exchange rates and prevailing interest rates, the impact of cost containment policies and subsequent changes thereto, the average number of shares outstanding as well as those discussed or identified in the public filings with the SEC and the AMF made by Sanofi, including those listed under “Risk Factors” and “Cautionary Statement Regarding Forward-Looking Statements” in Sanofi’s annual report on Form 20-F for the year ended December 31, 2013. Other than as required by applicable law, Sanofi does not undertake any obligation to update or revise any forward-looking information or statements.

Genzyme Media Relations
Erin Walsh
+1 617-768-6881

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Information on the 2014 MS (5 speaker) Symposium in Miami

Program Date: October 25, 2014

This year's MS Views and News annual symposium was their 5th since being founded in 2009.
To date, since their first program in February of 2010 they have provided more than 120 educational programs for those affected by MS and have educated tens of thousands live and via the internet.

At this year's symposium 204 attended this (5) speaker engagement.
Topic presented were: Dietary and Self Aspects, Current and Emerging therapies, Medication, Stem cell therapy & Myelin research updates, discussion on the Invisible Symptoms, Neuro-Psychological testing  for cognition (memory), Neuro-feedback, Social Security disability (SSDI) Law and Caregiver rights.

You can still learn from this program by visiting the MS Views and News, You Tube channel found here: www.youtube.com/msviewsandnews.

The video presentation was uploaded in (3) sections or parts.
Part 1 - with the neurologists,
Part 2 - with the Psychologist and disability attorney
and Part 3 with another attorney speaking about Caregiver Rights.

Watch this at your leisure, stop when needed, pause or take a break. A Q&A Session is included with each section.

Inform family, friends and others whom you want to know more about MS, about this educational video presentation and ask them to take a look at it as well...

If you have any questions that might not have been asked, please leave as a comment to this blog posting (on this site , not social media), as we can check easier from here. After seeing the question we will as the person who spoke at our program to answer the question.


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Monday, November 3, 2014

Postural Sway Is Associated with Disability Status and Cerebellar Dysfunction in People with Multiple Sclerosis: A Preliminary Study

Background: The aims of this study were to a) examine postural sway in eyes open (EO) and eyes closed (EC) conditions in people with MS with moderate levels of disability and healthy controls (HC), and b) examine relationships between postural sway and total Expanded Disability Status Scale (EDSS) scores, functional system subscores, and clinical measures of strength and spasticity within the MS group.

Methods: Thirty-four people with moderate MS and 10 matched healthy controls completed measures of postural sway with eyes open (EO) and eyes closed (EC), knee extension and ankle dorsiflexion isometric strength, EDSS total score and subscores, and spasticity levels.

Results: MS participants swayed significantly more with eyes open and closed and had reduced knee extension and ankle dorsiflexion strength compared with healthy controls (P < .001). Within the MS group, increased sway was associated with higher total EDSS scores and cerebellar function subscores, while increased sway ratio (EC/EO) was associated with reduced sensory function subscores. Postural sway was not significantly associated with strength or spasticity.

Conclusions: People with MS sway more and are significantly weaker than healthy controls. Cerebellar dysfunction was identified as the EDSS domain most strongly associated with increased sway, with sensory loss associated with a relatively greater dependence on vision for balance control. These findings suggest that exercise interventions targeting sensory integration and cerebellar ataxia may be beneficial for enhancing balance control in people with MS.

See all data for this report found here

Published Online: October 10, 2014

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Evaluating the Theoretical Content of Online Physical Activity Information for People with Multiple Sclerosis

Background: Physical activity can aid people with multiple sclerosis (MS) in managing symptoms and maintaining functional abilities. The Internet is a preferred source of physical activity information for people with MS and, therefore, a method for the dissemination of behavior change techniques. The purpose of this study was to examine the coverage and quality of physical activity behavior change techniques delivered on the Internet for adults with MS using Abraham and Michie's taxonomy of behavior change techniques.

Methods: Using the taxonomy, 20 websites were coded for quality (ie, accuracy of information) and coverage (ie, completeness of information) of theoretical behavior change techniques.

Results: Results indicated that most websites covered a mean of 8.05 (SD = 3.86, range 3–16) techniques out of a possible 20. Only one of the techniques, provide information on behavior-health link and consequences, was delivered on all websites. The websites demonstrated low mean coverage and quality across all behavior change techniques, with means of 0.64 (SD = 0.67) and 0.62 (SD = 0.37), respectively. However, coverage and quality improved when websites were examined solely on the techniques that they covered, as opposed to all 20 techniques.

Conclusions: This study was the first to examine quality and coverage of physical activity behavior change techniques used online for people with MS, and it illustrated that the dissemination of these techniques requires improvement.

READ full detail found here

Published Online: October 10, 2014

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Biogen and the National MS Society weigh in on the first reported death of an MS patient taking Tecfidera who developed PML.

Patient Taking Tecfidera for MS Dies of Rare Brain Infection
October 30, 2014
Biogen Idec Inc., maker of the popular multiple sclerosis (MS) pill dimethyl fumarate (Tecfidera), announced the death of a patient taking the drug who succumbed to complications from a rare brain infection. Executives broke the news during a conference call with analysts last Wednesday.
The brain infection known as progressive multifocal leukoencephalopathy (PML) took the life of a European patient who had been on the popular pill for more than four years. The patient was taking part in a long-term safety study of Tecfidera.
"The patient was a participant in the ongoing ENDORSE extension study," confirmed Catherine Falcetti, associate director of public affairs for Biogen, in an interview with Healthline.
“This patient was treated with Tecfidera for 4.5 years as part of the ENDORSE study,” explained Falcetti. “They developed PML and recently died due to complications associated with aspiration pneumonia.”

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Wales First U.K. Country To Approve Cannabis-Based Medicine for MS Patients

Cannabis MS drugWelsh health minister Mark Drakeford has announced that Wales has become the first UK country to authorize a cannabis-based medicine under its National Health Service. Sativex, a proprietary oral spray cannabinoid medicine that has been licensed in the UK to treat muscle spasms and stiffness in people with Multiple Sclerosis (MS) since 2010, has been approved by the All Wales Medicines Strategy Group (AWMSG), and will be available on prescription to treat MS patients who fail to show any response to other medicines. The active chemical agents of Sativex — Delta-9-tetrahydrocannabinol/cannabidiol — are derived from the cannabis plant.

The All Wales Medicines Strategy Group (AWMSG) is a statutory advisory Welsh Assembly-sponsored public body established under the 1977 National Health Service (NHS) Act, to provide advice on medicines management and prescribing to the Welsh Government’s Minister for Health and Social Services in an effective, efficient, and transparent manner, bringing together NHS clinicians, pharmacists, healthcare professionals, academics, health economists, industry representatives, and patient advocates. AWMSG, acting in a strategic and advisory capacity, is an authoritative and expert channel through which consensus can be reached on the use of medicines within both primary and secondary care.
Now that the AWMSG’s recommendation to approve access to the treatment has been ratified at ministerial level, Wales will become the only place in the UK where people with MS can routinely access the medicine. Mr. Drakeford is cited saying, “I hope this decision will help ease the suffering of some of those who have to live with the reality of MS every day.”
According to the U.K. MS Society there is “a very clear need for new treatments for MS symptoms.” The Society notes that “There are few effective treatments for the symptoms of MS. Most of the current drugs only benefit a minority of people and frequently have adverse side effects… this is especially true of pain control, where few treatments are effective… Available treatments for spasticity… afford partial relief and have unpleasant side effects.”
sativexbottleSativex is also in development and clinical trials as a treatment for cancer pain and neuropathic pain of various origins, and has been has launched in 11 countries and approved in a further 13.
Earlier this year NICE – the body that decides what treatments should be available on the NHS in England and Wales – rejected the drug in their draft clinical guidelines for MS because it was not deemed ‘cost effective,’ but AWMSG decision overrules the NICE guideline in Wales. However, the MS Society, which contends that the NICE ruling was based on a flawed assessment of Sativex’s cost effectiveness, notes that unless local NHS bodies agree otherwise, persons living in England, Scotland, and Northern Ireland for whom Sativex is indicated an appropriate therapy and will continue to go without, or will need to fund the treatment privately. Health departments in England, Scotland, and Northern Ireland follow a different drug approval system than Wales, and the medicine is still not confirmed for use.
That may be subject to change. According to a report by The Guardian’s Nicholas Watt, U.K. drug minister Norman Baker is advocating liberalized drug laws be introduced to legalize already widespread use of cannabis to relieve symptoms of certain medical conditions, including the side effects of chemotherapy, voicing concerns that “credible people” are being obliged to break the law in order to secure the only substance that can help relieve their condition, Mr. Baker is writing to U.K. health secretary, Jeremy Hunt, to call for a review of the medicinal properties of cannabis.

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