ms connection newsletter · best dam bike ride september 13 - walk ms northern utah, ogden ... 2014...

SPRING 2014

MS CONNECTION NEWSLETTER

SOUTHERN UTAH WALK MS HOLDS SPECIAL TRIBUTESpringtime means the start of Walk MS season and the Utah-Southern Idaho Chapter’s first event of 2014 will be held in St. George, Utah on Saturday, March 22, at Tonaquint Park.

What makes Southern Utah Walk MS so special is that organizers, Christina Hopkinson and Marc Stallings, are dedicating this year’s

event to Marc’s late father, Joe Stallings. Joe’s support of Walk MS began many years ago as the volunteer coordinator. He and his wife Linda embraced the job with enthusiasm, optimism, and a boisterous voice to encourage everyone to walk to find a cure. Linda has lived with multiple sclerosis for many years, and despite its progression, she continued to motivate herself and worked to encourage others as well, earning the Chapter’s Living with Hope Award in 2002.

FAMILY LEGACYJoe served as Walk MS Coordinator in St. George until seven years ago, when he found a replacement in Christina Hopkinson, whose mother had been recently diagnosed with MS. Christina, armed with Joe’s binder of Walk information and guidance, relished the opportunity to make a difference in this community event. Although she admits that she felt somewhat intimidated to follow in Joe’s path, he assured her that she had the energy and the passion to succeed.

JOE AND MARC STALLINGS WITH THEIR NEPHEW

INSIDE THIS ISSUE

04EXERCISE: OUR DAILY ALLOWANCE

05WHERE TO FIND EMPLOY-MENT HELP

09MS AWARE-NESS WEEK COMING UP MARCH 3-9

10GIVE WHERE YOU LIVE: SAVE THE DATE

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02 MS CONNECTION: SPRING 2014

Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108

For 2014, Christina teamed up with Marc Stallings, who begins his first year with Walk MS focusing on marketing and recruitment. Marc brings the experience of being Route Captain for Walk MS in Carlsbad, California and 6 years of experience as a volunteer with the Pacific South Coast Chapter of the Society.

Joe Stallings passed away in 2013, but there is no question that he left a legacy with all of the participants of the Southern Utah Walk MS event. With Christina Hopkinson and Marc Stallings’ commitment, this year’s event proves to be memorable.

We can’t think of a more appropriate way to kick off our 25th anniversary of Walk MS than with a tribute to Joe Stallings. We invite you to join us at Walk MS to make new connections or pay tribute to someone you love as a participant, volunteer, virtual walker or donor – if not in St. George on March 22 than in Boise on April 19, Salt Lake City on April 26 or one of our fall events. Be Inspired. Get Connected. Walk MS.

JOIN WALK MS OR BIKE MS IN 2014 The Utah-Southern Idaho Chapter is able to fund research and provide programs and services throughout our territory because of the over $2 million raised at Walk MS and Bike MS each year. Please consider joining us as a participant, volunteer or donor this year:

March 22 - Walk MS Southern Utah, St. George

April 19 - Walk MS Boise

April 26 - Walk MS Salt Lake City

June 28-29 - Bike MS Harmons Best Dam Bike Ride

September 13 - Walk MS Northern Utah, Ogden

September 20 - Walk MS Twin Falls, Idaho Falls, & Wood River

More information available at www.walkmsutahidaho.org and www.bikemsutah.org.

Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83705

NATIONAL MULTIPLE SCLEROSIS SOCIETY UTAH-SOUTHERN IDAHO CHAPTER

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Utah on the web: MSutah.orgIdaho on the web: MSidaho.orgEmail: [email protected]: 1-800-344-4867

I RIDE WITH MS I Ride With MS presented by Genzyme and MS One to One returns to Bike MS this year. If you are riding with MS, you are eligible to receive a special jersey and VIP treatment. Contact [email protected] for details today!

03NATIONALMSSOCIETY.ORG | 1-800-344-4867

2014 started off with our Annual Celebration, hosted by David Osmond. He shared many great insights about living life impacted by MS, first with his father’s diagnosis and then with his own personal battle. Many of his words resonated with me, but his challenge to ask “Why me?!?” not only when we find ourselves facing adversity, but also when times are good was a message that really stuck with me and I think is a lesson we can all learn from. At our Annual Celebration I also had the opportunity to congratulate the honorees of our Impact awards - people like Nancy Ferries, who assembled Walk MS in three weeks after a devastating forest fire swept through Ketchum to Abram Jones of Salt Lake who donated his time to mentor other team captains while leading his own team, volunteer at multiple chapter events AND then engage his own mother to volunteer in Twin Falls to companies like Modern Display and Holland & Hart who donated resources that saved the chapter thousands of dollars. You can learn more about all of our honorees and hear David’s message by watching the webcast at www.youtube.com/curemsutah. I also hope you’ll take the time to celebrate 2013 by downloading our 2013 Annual Report - and that perhaps you will consider sharing it with someone new during MS Awareness Week, March 3-9, or with your donors or teammates as you begin your fundraising campaign for Walk MS or Bike MS.

I look forward to seeing many of you at our upcoming events, and hope 2014 is a year where we will all be asking “Why Me, Why Now?” on a regular basis as the MS movement continues to make incredible progress.

Sincerely,

Annette Royle-Mitchell Chapter President

CONNECT WITH US ONLINE:

Like us: facebook.com/MSutahIdaho

Follow us: twitter.com/cureMSutahIdaho

Watch us: youtube.com/cureMSutahIdaho

JAY GURMANKIN ACCEPTS THE IMPACT AWARD ON BEHALF OF HOLLAND & HART

PRESIDENT’S MESSAGE

WHY ME?


Research shows that exercise in multiple sclero-sis, can improve mood, MS-related fatigue and cognitive function. Notably, exercise has also been shown to increase overall daily activity level, functional capacity and balance in people with MS, as well as increase in quality of life.

WHY NOT?With benefits like these why don’t we exercise? Studies show that fewer than 20% of people in the general U.S. get the recommended 150 minutes of moderate-intensity exercise per week. So, why don’t we exercise? As a person with MS, that is a pretty simple question to an-swer: I know it will make me feel better but, many times I feel so horrible or fatigued that the thought of 30 minutes of sustained exercise just makes me laugh. Or cry.

A WAY TO EXERCISEHowever, there may be an answer, Robert W. Motl, PhD, stated that it’s not just people with MS who don’t stick to exercise programs, over 50% of adults drop out of any formal exercise program after 3 months. And after 6 months, 75% have stopped exercising. Dr. Motl suggests that rather than pushing for a formal exercise program, we should strive to incorporate more physical activity into our daily lives. He calls this “lifestyle activity,” and points out that in-termittent exercise has been shown to have the same effect as “continuous bouts” of exercise. In other words, accumulating 30 minutes a day of moderate exertion doing things like walking, gardening or pushing a vacuum cleaner can be as effective as a more formal 30-minute exercise session.

In addition to this new approach to getting our recommended daily allowance of exercise, Dr. Motl has been researching the effect of social

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EXERCISE HAS BEEN SHOWN TO INCREASE OVERALL DAILY ACTIVITY LEVEL, FUNCTIONAL CAPACITY AND BALANCE IN PEOPLE WITH MS.

LIVING WITH MS

EXERCISE: OUR DAILY ALLOWANCE


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cognitive theory. Simply put, a person will be much more likely to do something if they be-lieve that they CAN do it. Talk to your health-care provider about what activities may work best for you.

FINANCIAL ASSISTANCEAssistance is available for crisis short-term needs, durable medical equipment, assistive technology, home or vehicle modifications, counseling and other MS-related needs. Call 1-800-344-4867 to learn more.

MS NAVIGATORWe are ready to help you navigate the challenges of MS with personalized response to your unique needs, up-to-date information, referrals and other practical resources. Call 1-800-344-4867 or email [email protected].

PARTICIPANTS NEEDED FOR BALANCE STUDYA Society funded study at the University of Utah is recruiting participants to investigate the gaze/postural stability and therapeutic effects of exercise in people with MS. This study will look at determining if problems within the inner ear system contribute to balance problems and falls in people with MS and whether performing specific exercises improves balance postural and vision stability. If you are diagnosed with MS, over 18 and are able to stand at least 30 seconds unassisted and interested in participating, please contact Hina Garg at 361-246-0126.

MONEY MATTERS

WHERE TO FIND EMPLOYMENT HELPAre you considering changing jobs? Have you been out of the workforce, but are thinking about returning? Do you have questions about disclosure in the workplace or how to accommodate symptoms on the job? We can help!

CALL AN MS NAVIGATORAn MS Navigator can address many of your employment-related questions and refer you to helpful resources, including employment-related publications and videos. You can reach an MS Navigator by calling 1-800-344-4867.

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You can also visit www.nationalMSsociety.org/employment for a variety of publications and helpful links. The National MS Society offers a self-guided coached program called Career Crossroads, which was designed by employment and MS experts to help individuals living with MS remain in the workforce. The program can be accessed online (self-study workbook and videos can be downloaded), or by calling an MS Navigator to receive the workbook and companion DVD by mail.

JAN CAN HELPThe Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy that can provide technical assistance and support regarding accommodations, the Americans with Disabilities Act, disclosure and self-employment for people with disabilities. Contact JAN at 1-800-526-7234 or visit www.askJAN.org for a wide variety of resources and publications.

IN YOUR STATEBoth Utah and Idaho have vocational rehabilitation agencies. The goal of these agencies is to assist people with disabilities in preparing for, securing, retaining or regaining employment. Contact an MS Navigator at 1-800-344-4867 to find an agency in your community.

TARGETED RECRUITMENTSeveral online resources feature employers who are actively recruiting qualified

people with disabilities, including:

Equal Opportunity Publications Career Center – www.eop.com/career.php

GettingHired – www.gettinghired.com

National Business and Disability Council – www.viscardicenter.org/services/nbdc

Working with MS is possible and you don’t have to do it alone. Get connected to stay on top of your employment options!

RESEARCH

THE PROMISE OF MYELIN REPAIRBY BRUCE BEBO, PHD

When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people.

While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.

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DREAM TO REALITYPeople are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm.

“...[REPAIRING] DAMAGED MYELIN WOULD BE IMPORTANT FOR RESTORING FUNCTION AND MANY BELIEVE MAY EVEN SHIELD THEM FROM FURTHER HARM.” Bruce Trapp, PhD, and his team at Cleveland Clinic have been working hard to advance the field of nervous system repair. They have shown that new MS lesions undergo natural repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin. Work is now underway to figure out what the impediment is and how to jump-start the repair process.

What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the so-called white matter and gray matter. The team found that chronic lesions in the white matter don’t remyelinate. But chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens

up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter.

In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule called hyaluronic acid (HA

for short) accumulate in chronic white matter lesions and could be at least partially responsible for the stalled remyelination.

They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.

MORE POSSIBILITIESIncreasing evidence suggests that female sex hormones might be neuroprotective and/or promote repair of myelin. I saw two very interesting presentations last October at

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ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin. Both of these projects are supported by the Society.

Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but this type of research gives hope that this strategy may eventually help restore lost function.

Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in neurons and myelin-producing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that anti-LINGO was well tolerated in people and that no negative effects were seen. This means the company will likely keep pursuing clinical development of this promising repair candidate. In other news, investigators from the Mayo Clinic are developing an agent

called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS.

We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair.

Bruce Bebo, PhD, is the associate vice president of Discovery Research at the National MS Society.

Originally published at www.MSconnection.org/blog.

NEW SOCIETY WEBSITE LAUNCHEDVisit the new look of our website to discover several new features that make joining the MS movement even easier. These features include: a “My Profile” section where you can access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.

Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too.


NEWS

NECK OF THE WOODSUtah & Idaho MS Smart Moves: The Chapter is in the final weeks of our annual MS Smart Moves program. Thank you to all of those participants, volunteers and community members who created a successful program.

Tooele Everyday Matters: March is the kickoff of Everyday Matters in Tooele. Join our quarterly workshop to learn about how positive behaviors can make a difference in your day to day life. Call 800-344-4867 today .

Twin Falls Pacific Crest Trek for MS: Twin Falls native, Megan Bullers, is hiking 2,650 miles from Mexico to Canada on the Pacific Crest Trail to raise funds in support of her father, who has had MS for 14 years. Her journey will start in April 2014 and the hike will take 4 months to complete!

Boise Beer for MS! Our Chapter was the proud recipient of the proceeds from Payette Brewing’s Busted Wagon Seasonal IPA sales, and in February, 10 Barrel Brewing hosted a charity night for the National MS Society.

Ogden Rick Thompson teamed up his two favorite

passions, ice fishing and kicking MS- and Jiggin’ 4 a Cure was born. This February, Rick, his son, and grandson used the DIY Fundraising tool to sponsor them to ice fish for 48 hours straight. At press time they had raised over $500!

SUPPORTING THE MISSION

MS AWARENESS WEEK MARCH 3-9Each year MS Awareness Week is embraced by people who want to do something about multiple sclerosis, and it happens to be the kick off to MS Awareness month. The goal is to educate people about the disease and its impact on the community, to help people learn about the National MS Society, and to engage people to help find a cure and support those impacted by MS.

How can you help spread awareness this March? Will you turn your Facebook profile orange and post an MS statistic every day? Could you wear orange every day or make orange ribbons for everyone in your office? Would you write a letter to the editor of your local paper and share your story? Could you ask a local business to promote MS Awareness on their signboard, in their newsletter or social media outlets? It doesn’t take much to start a conversation about MS and create a new connection, which is what MS Awareness week is all about.

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MS CONNECTION: SPRING 2014


We know that multiple sclerosis destroys connection, disrupts signals and divides minds from bodies. However, on the flip side, connection takes away the ability of MS to isolate. And as more connections form, we end up with more knowledge, more resources, more understanding, more ideas, and more hope. Help us connect in March, and share with us what you are doing on our facebook page, www.facebook.com/msutahidaho or #MSconnection. If you need ideas about how to spread awareness please reach out to [email protected].

WAYS TO GIVE

GIVE WHERE YOU LIVE- SAVE THE DATE!Utah and Idaho each debuted their first ever statewide Day of Giving campaigns last spring with Love Utah Give Utah and Idaho Gives. Combined, in two separate 24 hour periods these two campaigns raised over $1.3 million for non-profit organizations in our states, including over $8,000 for our chapter! Save the date for 2014: Love Utah Give Utah - March 20 and Idaho Gives- May 1.

These campaigns are not about how much you can give, but about HOW MANY people give. It is one day in your community to celebrate the non-profits that make our lives so special. Supported by the local community foundations, there are prizes available to non-profits who engage the most donors- last year the Idaho Humane Society earned an extra $3,000 by

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10COMMUNITIES STAND TOGETHER TO FIGHT MS.

NATIONALMSSOCIETY.ORG | 1-800-344-4867


engaging 291 people in their campaign…we can beat that!!! What we love about Love Utah Give Utah and Idaho Gives is that you can participate from anywhere because the campaign is all online. Help us out on Facebook or Twitter by reposting information and updates, distribute posters or flyers to let people know about it, host a Day of Giving party or just hop online and donate $10 and invite your friends and family to do the same. If you would

like to volunteer to build visibility or awareness for these important campaigns OR if your family or someone you know might be able to offer a challenge grant to help us double our impact, please reach out to [email protected]. We are looking for representatives in every community to help us exceed our 2013 totals!

VOLUNTEER

INTERNS MAKE A DIFFERENCE “Being a Nursing Intern with the National MS Society means making a difference in others’ lives. Before starting my internship I did not know much about MS, the effects of MS, nor the amount of treatment it takes to only control

some symptoms. Having seen the amount of work that is put into helping individuals with MS, I am appreciative to be a part of such a dedicated team. This is not just an internship, it is a lifelong involvement.” These words were expressed by the Chapter’s second University of Utah School of Nursing Intern. Currently, three interns are volunteering with the chapter in nursing, health education and social work. Their various roles assist our chapter in outreach and education to others on the disease of MS. They also allow us to extend our reach to healthcare professionals who may eventually go into the field to help those living with the disease. Interns are welcome at the chapter in a variety of roles, including public relations, marketing, development, volunteer management, social work, health education and more. Interns gain valuable hands on experience in their field of study, while expanding the chapter’s resources to better serve people affected by multiple sclerosis.

If you have an interest in a chapter internship email [email protected].

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DO-IT-YOURSELF FUNDRAISINGNot interested in Bike MS or Walk MS, but inspired to do something about MS? Check out Do It Yourself Fundraising. This web based tool allows you to set up your own event, tell your story and invite others to join you. You can then use the online tools to raise money in the fight against MS! Email [email protected] for more information.

MS CONNECTION: SPRING 2014

1440 S. Foothill Dive, Suite 200 Salt Lake City, UT 84108-2354

MARCHEducational Connections: Making Treatment and Lifestyle Decisions, Meridian

Educational Connections: Pain and Sleep Management, Cedar City

Live Fully, Live Well: Fitness, Logan

Educational Connections: Everyday Matters, Tooele

APRILLive Fully, Live Well: Attending to Your Whole Self, Ketchum

Live Fully, Live Well: Fitness, Manti

Live Fully, Live Well: Attending to Your Whole Self, Moab

MAYEducational Connections: Live Fully, Live Well, Twin Falls

Live Fully, Live Well: Finance, Idaho Falls

JUNEMS Wellness Expo, Murray

Educational Connections: Everyday Matters, Meridian

Educational Connections: Cognifitness-Cognitive Health, Cedar City

Educational Connections: Everyday Matters, Tooele

IDAHOBoise 2nd Thursday 1 p.m.Idaho Falls 2nd Monday 1 p.m.Nampa AM 2nd Saturday 10:30 a.m.Nampa PM 2nd Tuesday 7 p.m.Twin Falls 1st Thursday 6 p.m.

UTAHCache Valley 2nd Tuesday 6 p.m.Murray 2nd and 4th Saturday 10 a.m.Ogden 1st Wednesday 11 a.m.Price 1st Tuesday 6:30 p.m.Salt Lake City 3rd Tuesday 7:00 p.m.West Jordan 2nd Wednesday 7 p.m.

ONGOING SELF-HELP AND SUPPORT GROUPS

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EDUCATIONAL EVENTS AND MORE

ms connection newsletter · best dam bike ride september 13 - walk ms northern utah, ogden ... 2014...

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