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How do you 'Stick With It?'

The Winter issue of InforMS Magazine – headed your way in December – will focus on adherence to treatment of multiple sclerosis. Whether it’s pharmaceutical disease modifying therapies, a regular exercise regimen or diet, we’re interested in how you stick with various elements of your treatment.

Please take a moment to fill out the form below. Some responses will be used in the Winter issue of InforMS.

 
Adherence to MS Treatments - InforMS Winter 2014
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eMS News 63

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Putting a patch on MS?
Multiple sclerosis is an immune-mediated disease of the central nervous system. In people with MS, specific immune system cells (T-cells) misidentify elements of the brain and spinal cord as foreign and try to destroy them. Myelin has long been thought to be a target—the red flag to the bull—that ignites this attack process. Over the years, different strategies have been used to try to limit this immune attack. One of these is to retrain the immune system so it is tolerant to myelin. In that case, the attacking cells would simply ignore myelin and leave it alone. That is the logic underlying a recent study by Polish researchers. The goal of their study was to induce myelin tolerance and thereby reduce myelin destruction and MS attacks.
In this recent small study, researchers in Poland used a skin patch to administer small amounts (1.0 mg) of myelin particles (peptides) to 20 people with relapsing-remitting MS. In the following year, these 20 people showed significant reductions in MRI disease activity and clinical relapses when compared to ten people who were given an inactive placebo patch, and when compared to four people who received a much larger dose (10 mg).
 
 
Dr. Enrique Alvarez
Meet Dr. Enrique Alvarez
This month, Dr. Alvarez became the newest member of the Rocky Mountain MS Center at Anschutz Medical Campus team—making him the seventh fellowship-trained MS specialist on staff.
Please tell us about yourself: I went to medical school here (Denver, CO), and did my MD/PhD through the Medical Scientists Training Program (MSTP). My wife was also in the program; that’s where we met. We were offset by a year, so I did my internship here for general internal medicine. After, I did a three-year neurology residency at Washington University in St. Louis and then continued on with an MS fellowship. My wife did a Medicine residency and a Rheumatology fellowship. We then started to look around at jobs and are so happy they had us back in Denver—we love it here. We’ve got two kids: a 4 month old and a two and a half year old. My free time is mostly spent with my family and my golden retriever, Daisy. 
 
 
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September 7, 2013, Gadgets, Gizmos & Strategies: Hear from specialists on ways to make your life easier with MS, including resources, strategies, accommodations and equipment that can make all the difference.
Join companies and organizations from the Denver area as they display a variety of the latest products and resources for making life with MS easier. The equipment and resource exhibit hall will be open throughout the seminar, offering the latest in technology and resources.  Click here to registerWestminster, CO. 
 
 
September 17, 2013, Q & A with Dr. Vollmer: Visit with Dr. Tim Vollmer, the Medical Director of the MS Center, and get your questions answered. Audience participation is encouraged.  Click here to learn more or register. Greeley, CO.
 
 
September 21, 2013, Legal Issues and MS: Join us as we explore Social Security Disability Benefits (SSDI) and other legal issues pertinent to people with MS.
Join us for this free seminar featuring Tom Stewart PA-D, JD, MS, Joan Bechtold, JD, and Pat Daily, LCSW, which will answer these questions and more! Click here to register. Westminster, CO.
 
 
Every Month
MS 101: Empowerment through Education for the Newly Diagnosed. Join Pat Daily, LCSW, for an informal discussion of issues important to people newly diagnosed with multiple sclerosis. Family members and friends are also welcome. There is no charge, but registration is required and class size is limited. Call 303-788-4030 ext. 120 to learn more. Denver and Westminster, CO
 
 
 
 
Multiple Summits for Multiple Sclerosis August, 2013
August isn't over yet and there's still time to get outdoors with over 1,000 hikers and donors from around the nation for this outdoor fundraising event.
No time to get outdoors? Donate to one of the MS4MS teams.  Click here for more information or contact Katie Mills at 303-788-4030 ext. 111 or  This email address is being protected from spambots. You need JavaScript enabled to view it.
 
 
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eMS News 61

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Table of Contents
  • BG-12 Approved
  • Welcome: Jacquelyne (Jackie) Brafford
  • EDUCATION: Scientific Advances in MS Research & Treatments
  • Resources for Living with MS
First-Line Oral Treatment for Multiple Sclerosis

BG-12, an oral treatment for relapsing-remitting forms of multiple sclerosis, has received FDA approval and will be sold under the name Tecfidera. Manufactured by Biogen Idec, it becomes the third oral disease-modifying medication available to treat MS. Others include fingolimod (Gilenya) and teriflunomide (Aubagio).
Tecfidera has been clinically proven to reduce relapses and development of brain lesions, and appears to slow disability progression over time. It also has an encouraging safety profile and is well-tolerated by patients.
Tecfidera appears to have dual anti-inflammatory and neuroprotective effects, which may represent a new class in treatment for MS. It has been shown to activate the Nrf2 transcriptional pathway. This pathway is thought to defend against oxidative-stress induced neuronal death, protect the blood-brain barrier, and support maintenance of myelin integrity in the central nervous system—all key elements to treating MS.
Tecfidera has been used for many years in Europe and elsewhere to treat psoriasis. Phase III clinical trials of Tecfidera include the DEFINE and CONFIRM studies, which combined, enrolled more than 2,600 patients. For more detailed information about these studies CLICK HERE.
The most common side effects associated with Tecfidera were flushing and gastrointestinal (GI) events (i.e., diarrhea, nausea and abdominal pain) and occurred in up to 60% of patients but were generally mild and generally resolved with in a few weeks. In some patients, average lymphocyte counts decreased during the first year of treatment and then remained stable. The incidence of infections and serious infections was similar in Tecfidera-treated patients and those on placebo. Patients taking Tecfidera should have a complete blood count (CBC) before starting treatment and a follow-up CBC annually.
“Tecfidera represents the second oral treatment [the first being Gilenya] that is more effective than current first-line medications and has a good safety profile,” said Dr. Timothy Vollmer, Medical Director of the Rocky Mountain MS Center. “Side effects from Tecfidera were relatively mild and only lasted for a couple of weeks." 
PLEASE NOTE:
If you are a patient at the Rocky Mountain MS Center: It is estimated that it’s going to take us 4-6 weeks to create a process for prescribing this medication. If you would like to learn more about getting a prescription or switching to this drug, please make an appointment with your provider by calling 720-848-2080 (press 3).
Welcome: 
Jacquelyne (Jackie) Brafford

Jackie is the new recruitment professional research assistant for the neurology department at the Rocky Mountain MS Center. Jackie graduated from the University of Nevada, Reno with a B.A. in philosophy and theatre and obtained a post-bachelor’s degree in Biology from the University of Colorado Denver.  She has a background on the clinical side working in a family planning clinic and in the float-pool team at Denver Health Hospital. Supporting the family planning team in several studies on women’s health and contraception is where she gained her interest in research. Jackie enjoys creating artistic puppet shows, learning to play the ukulele and being with her 140 pound Great Pyrenees.
Jackie is looking forward to meeting all the new patients and being a part of the team.
Charity Navigator Designates MS Center as a Four Star Charity
The Rocky Mountain MS Center has proudly received the coveted 4-star rating from Charity Navigator for a 2nd year in a row.
Charity Navigator is an independent organization that evaluates nonprofits based on two broad areas of performance; Financial Health and Accountability & Transparency. The resulting ratings show donors how efficiently  a charity will use donor support today, how well it has sustained its programs and services over time, and the level of commitment to being accountable and transparent. Visit the Rocky Mountain MS Centers Charity Navigator page HERE.  
Support the MS Center today and be confident that your support is being used responsibly.
MS Awareness clothing, buttons, and mugs!
Wear an MS Awareness shirt and help spread the love! For the month of March, shirts are being sold at cost to help spread the message that MS is not contagious. Mugs, buttons, and lunch sacks are also for sale!
8845 Wagner Street | Westminster, CO 80031 US

eMS News

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eMS News is the monthly email newsletter distributed from the Rocky Mountain MS Center at the University of Colorado. We launched our first issue in March of 2009.
 
 
September 25, 2013: Affordable Care Act: 10 Things to Know
 
August 30, 2013: Putting a patch on MS?
 
July 25, 2013: Can sunlight decrease depression in people with MS?
 
March 29, 2013: BG 12 Approved
 
March 20, 2013: Pediatric Multiple Sclerosis
 
February 26, 2013: MS Center Launches Newly Designed Website for People and Families with Multiple Sclerosis; New Clinical Trials Open: Brain Activity and Fatigue
 
February 13, 2013: InforMS: The Art of MRI. The Science and the Art of Reading the Multiple Sclerosis Brain
 
January 25, 2013: The Eyes Have It: Retinal Thinning and Multiple Sclerosis December 11, 2012: Vitamin D and Multiple Sclerosis - Do You Need It and How Much? October 31, 2012: InforMS-Risk. October 17, 2012: Rocky Mountain MS Center Program Updates October 4, 2012: Fall Educational Events September 14, 2012: A New Oral Drug for MS: Aubagio (teriflunomide) August 16, 2012: Does Vitamin D May Reduce Disease Activity?; Flu Vaccines and MS July 13, 2012: Does Stress Management Reduce Disease Activity in MS; 5 Tips for Staying Cool; Videos: Living Well with MS June 14, 2012: Exercise and MS; Rocky Mountain MS Center at AMC is Expanding; Open Trials at the MS Center; Videos: Living Well with MS May 9, 2012: BG 12 Updates; Upcoming events April 23, 2012: Oral Drug: Ono-4641; New Clinical Trials; Home Accessibility: 300 Tips for Making Life Easier; Living Well with MS February 28, 2012: Stratify JCV: a Blood Test for PML; Videos: Key Advances In MS Research and Treatments January 31, 2012: Combination Therapy: Key to a Disease-Free State?; Safety Concerns Over Gilenya; Outdoors: MS and Skiing

eMS News 42

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In this edition of eMS News
August 2, 2011
  • Breaking News: Laquinimod Phase III Results
  • Multiple Summits for MS
  • Clinical Trials: Copaxone plus Oral Estriol
  • MS and Diet: Healthy Eating on a Budget
  • Events and Seminars

Breaking News

Oral Drug: Laquinimod  
Laquinimod: A new class of MS drugs? Laquinimod is an investigational, oral, once-daily therapy for the treatment of relapsing-remitting multiple sclerosis (RRMS) that has gone through two pivotal Phase III trials, ALLEGRO and BRAVO.  This drug appears to represent a new class of drugs that minimize disability in MS: it does suppress the immune system but appears to work directly in the nervous system to minimize the damage done by the inflammatory attacks that characterize MS. In the ALLEGRO study, laquinimod demonstrated a significant positive impact on disease activity, disability progression and MRI measures of inflammation and neurodegeneration, while maintaining a favorable safety and tolerability profile. Specifically, laquinimod showed a statistically significant 23 percent reduction in annualized relapse rate and 36 percent significant reduction in the risk of confirmed disability progression, as measured by EDSS. Teva released results from the Phase III BRAVO study, of which Dr. Vollmer is the co-principle investigator with Dr. Pers Sorenson of Copenhagen University Hospital. While data showed that the BRAVO study did not achieve its primary endpoint of a statistically significant reduction of  the annualized relapse rate, there was a trend in favor of a reduced relapse rate similar to that seen in the Allegro study.  The BRAVO study did confirm the highly significant decrease in risk of sustained disability and a decrease in brain atrophy as seen in the ALLEGRO study also. “Data from the ALLEGRO and BRAVO studies demonstrated that laquinimod reduced disability and brain tissue loss, two of the most important goals in the treatment of relapsing forms of multiple sclerosis,” said Professor Per Soelberg Sørensen, MD, Head of MS Research Unit, Copenhagen University Hospital, Rigshospitalet, Co-principal investigator of the BRAVO study. “These effects, coupled with a favorable safety profile and a once-daily dosing regimen create a promising potential treatment for the disease.” Additional analyses of the BRAVO study data are ongoing and will be released at ECTRIMS in the fall. "We are encouraged by the overall outcomes achieved in the laquinimod Phase III clinical development program, and plan to submit applications to regulatory authorities in the U.S. and EU," said Professor Yitzhak Peterburg, Teva's Group Vice President, Global Branded Products.  It is possible this new medication could be available by the end of 2012.

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Outdoors
Multiple Summits for MS
(MS4MS)
It's climbing month! This month teams from all around the US are climbing mountains to raise money for and awareness of MS.  This event is tailored for anyone. Don’t want to climb a mountain? DRIVE up one! Four-wheel up one! Take the stairs everyday for one month! The point is, build a team, set a goal, and summit! You pick any date in August, pick your trail, gather your team, raise a little money, and GO! This is a do-it-your-way event! GOAL: $30,000
Progress:
$13,183 (as of August 1, 2011)

_______________________________________________________ Clinical Trials
The following studies are limited to people who can travel to the Rocky Mountain MS Center at Anschutz Medical Campus in Aurora, CO for all study visits and procedures. Copaxone plus Oral Estriol: The Rocky Mountain MS Center at Anschutz Medical Campus is looking for women with relapsing-remitting MS for a 24-month study to see if there are fewer relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo. For more information, call 303-724-4644. If you would like to see a more complete list of clinical trials occurring at the Rocky Mountain MS Center at Anschutz Medical Campus, please click HERE. For information on various clinical trials throughout the United States, please visit
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Living Well
MS and Diet: Healthy Eating on a Budget
By Elizabeth Yarnell
Elizabeth Yarnell, ND, Director of the “Fight MS with Food” project, runs a nationwide virtual clinical practice focused on helping people in chronic physical distress feel better.
One way to cut down on monthly expenses is to cook at home more often and to employ cost-cutting measures to help you get the most nutrition out of every food dollar. The keys: a) shop smartly and b) know how to throw together quick and easy meals.
The secrets to saving money on produce are to buy what’s in season or what’s on sale, and then to preserve things correctly so that they last longer. Potatoes should be stored in a cool, dark place – not the fridge – with good air flow, for example. Mushrooms last longer in a paper bag in the main section of the fridge than in a Styrofoam container in the produce drawer. Fresh herbs last longer when washed immediately and rolled in a damp paper towel, then packed in an open plastic bag in the fridge.
Now, what to do with all of that good food? With just a cast iron Dutch oven and a few minutes, you can quickly and easily throw together a delicious (and nutritious!) dinner in minutes – without having to resort to take-out.
Tuna is a good source of omega 3’s – just what the doctor ordered to keep the nervous system functioning well. I keep individual servings of boneless tuna steaks in the freezer just for meals like this one. Just pop the frozen fish directly into the pot; there’s no need to thaw and it won't add any cooking time.
Sesame Tuna with Orange Sauce
Serves 4
1 cup couscous or quinoa
1 cup plus 2 tablespoons broth of water
4 4-ounce tuna steaks
zest of 1 orange
1 orange, squeezed or 1/2 cup orange juice
4 teaspoons honey
6 tablespoons soy sauce
5 teaspoons sesame oil
8 to 10 garlic cloves
4 tablespoons sesame seeds, toasted
2 teaspoon freshly grated ginger,
1 head broccoli, cut into florets (about 4 cups)
2 small yellow squash, cut in medallions
  1. Preheat the oven to 450° F.
  2. Coat the inside of a cast iron Dutch oven and lid with sesame oil.
  3. Place the couscous with the water in the pot and stir to make a smooth layer.
  4. Add the tuna steaks in single layer (it is okay if they are partially or completely submerged), and drizzle or spray with olive oil.
  5. In a small bowl, whisk the orange zest, juice, honey, soy sauce, sesame oil, garlic, sesame seeds, and ginger until thoroughly combined. Pour half the mixture over the tuna.
  6. Add the broccoli and squash into the pot and pour on the rest of mixture.
  7. Cover and bake for about 53 minutes, or until 3 minutes after the aroma of a fully cooked meal escapes the oven. Serve immediately.
Per serving: Calories 475    Prot 38g     Carb 51g    Fat 14g      Chol 43mg  Sod 128mg        Fiber 7g
Elizabeth Yarnell, ND, is the author of Glorious One-Pot Meals: A Revolutionary New Quick and Healthy Approach to Dutch Oven Cooking (Clarkson-Potter, 2009). A naturopath, patented inventor, and Director of the “Fight MS with Food” project, Elizabeth runs a nationwide virtual clinical practice focused on helping people in chronic physical distress feel better. She blogs and speaks about healthy eating to groups around the country.
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Events and Educational Seminars
To see our full calendar of events, please click HERE or go to www.mscenter.org.
Conversations on MS with Dr. Vollmer

Visit with Dr. Tim Vollmer, the Medical Director of the MS Center, and get your questions answered. This seminar series is held in local libraries and is open to the public (registration is required). The seminars open with a brief presentation by Dr. Vollmer on breaking news about MS, and then opens into a question and answer session. Audience participation is encouraged.
  • August 30, Ft. Collins, CO
  • Sepetmber 9, Glenwood Springs, CO
To learn more and register, please click HERE
August 15, Sept. 12, Oct. 17, Nov. 14, Dec. 5
5:30 pm, locations to be determined.
Join Pat Daily, LCSW, and Alex Hempel, RN, BSN, for an informal discussion of issues important to people newly diagnosed with multiple sclerosis. Family members and friends are also welcome. There is no charge, but registration is required and class size is limited. Call 303-788-4030 X 102 to learn more.

Advances in Multiple Sclerosis and Current Therapies
Thursday, August 18, 2011
Registration 6:00 - 8:30 PM Featured Speaker(s)
Ronald S. Murray, MD, Medical and Research Director, Multiple Sclerosis Clinic of Colorado
Jack Llewellyn, PhD, Sports Psychology Consultant, Professional Athletes and Teams
Red Lion Hotel Denver Southeast
3200 S. Parker Road
Aurora, CO 80014
Visit www.sharedsolutions.com to register online or call 800-887-8100. This event is sponsored by TEVA.

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PAST ISSUES

June 20, 2011: Beating The Heat; Upcoming Events; What Nurses Know:Multiple Sclerosis June 1, 2011: Non-Embryonic Stem Cells and MS; Clinical Trials; KADEP Enterprises; Events and Seminars March 3, 2011: Vitamin D and Your Diet, Clinical Trials, Getting Outdoors: Skiing Event January 19, 2011: Laquinimod: A Potential New Oral Treatment; A Wii Problem; Clinical Trials November 29, 2010: ECTRIMS 2010 and CCSVI; Caregiver's Month: Book reveiw and recommendations; Foresight Ski Guides: Outdoor Resources November 1, 2010: A new tool: SD-OCT; Enjoy the outdoors this winter!; Free week of skiing for people with MS!; Clinical Trials: Novartis Primary Progressive, Ono, Elan, and Copaxone plus Oral Estriol

September 9, 2010:
Do MS "types" mean anything?; Book Review; MS Center at Anschutz clinical trials August 6, 2010: DVTs; Beating the Summer Heat 101; MS Center at Anschutz clinical trials July 16, 2010: Tysabri, JC Virus and PML; Feeling through words; National clinical trial; MARBEL, Copaxone plus Oral Estriol and ORACLE

June 25, 2010: CCSVI research update; Fingolimod study update; Proper disposal of medication; Mountain adventure here you come!; National clinical trial; MARBEL, Copaxone plus Oral Estriol and ORACLE

June 11, 2010: Updates: Ocrelizumab Study and Stem Cell Study; Book review: "The Multiple Sclerosis Manifesto"; "Life if either a daring adventure or nothing." - Helen Keller; MARBLE, Copaxone plus Oral Estriol, Lily HMRF and ORACLE

May 20, 2010: Genetics and MS, Join a community conversation!, MARBLE, Copaxone plus Oral Estriol, Lily HMRF and ORACLE

April 28, 2010: CCSVI, Recap: Invisible Symptoms Seminar, Marble, Estriol plus Copaxone and ORACLE

March 30, 2010: Neutralizing Antibody Tests, Sleep Like a Baby, Marble, Estriol plus Copaxone and ORACLE

March 11, 2010: CCSVI Update and MS Awareness Month, The Power of Music, Tysabri, Marble, Estriol plus Copaxone, ORACLE and OCTAGON

February 25, 2010: CCSVI, Acupuncture and MS, Tysabri, Estriol plus Copaxone, ORACLE and OCTAGON

February 4, 2010: Updates: Ampyra, fingolimod and cladribine, Keeping track of it all..., Study on Physical Therapy, Estriol plus Copaxone, ORACLE and OCTAGON

January 22, 2010: Mesenchymal Stem Cell Transplants, Finding Adventure..., Study on Physical Therapy, Estriol plus Copaxone, ORACLE and OCTAGON

January 7, 2010: The Importance of NARCOMS, Healthy Lifestyle Tools, Estriol plus Copaxone, ORACLE and Sankyo December 10, 2009: Pediatric MS, My Very Necessary Medical I.D. Card, Estriol plus Copaxone, ORACLE and Sankyo November 25, 2009: Spasticity, A New Year's Resolution: Become a Dream Chaser, Estriol plus Copaxone, Duloxetine, Impax, ORACLE and Sankyo

November 12, 2009: Tysabri, National Family Caregivers Month, Estriol plus Copaxone, Duloxetine, Impax, ORACLE and Sankyo

October 29, 2009: Combination Therapy, Moving Beyond Your Diagnosis, PT Study, Estriol plus Copaxone, Impax and ORACLE October 15, 2009: Vitamin D, 29 Gifts: The Joy of Giving, Estriol plus Copaxone, ORACLE and local study October 1, 2009: MS Related Fatigue, Facebook, Estriol plus Copaxone, ORACLE and local study September 17, 2009: Stem Cell Transplants, Improving Cognition, Estriol plus Copaxone, ORACLE and local study

September 4, 2009: H1N1, Advanced Care Directives, Lilly Duloxetine, Sankyo, ORACLE, Atacicept and OCTAGON

August 20, 2009: Estriol, InforMS: A Conversation with Pat Daily, Impax Study and Sankyo

August 6, 2009: Fampridine-SR, Wii-habilitation, Clinical Trial-Nerispirdien and MS Pain Study July 23, 2009: Low-Dose Naltrexone, Finding Accessibility, Clinical Trial-Nerispirdine and MS Pain Study July 14, 2009: High-Dose Cytoxan, Yoga and MS, Clinical Trial-Copaxone Plus Oral Estriol June 25, 2009: Dirucotide, Beating the Summer Heat, Clinical Trial-Sankyo June 11, 2009: BG-12, Staying Smart, Clinical Trials-Nerispirdine and Sankyo

May 28, 2009: Teriflunomide, Farmer's Market, Clinical Trial-Duloxetine

May 14, 2009: Cladribine, Palliative Care, Clinical Trial-Duloxetine April 30th, 2009: Laquinimod, Depression and MS, Clinical Trials-Sankyo and Ono

April 16, 2009: Fingolimod, Stress Managment, Clinical Trials-Sankyo and Ono April 2, 2009: Clinical Trials' Legislation, Water: A Powerful Tool, Clinical Trials-Duloxetine March 19, 2009: Rituximab, An Overflowing Glass, Clinical Trials-Laquinimod March 5, 2009: Alemtuzumab and Cladribine, Smoking, Clinical Trials-BRAVO

 

This Education Summit is presented in part by Rocky Mountain MS Center supporters, including patient education grants and/or sponsorships from:

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