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UTAH - SOUTHERN IDAHO CHAPTER

M O V I N G T O W A R D A W O R L D F R E E O F M S | S U M M E R • 2 0 11

JOIN THE WALK MS MOVEMENT

MS= Keep Movin’ at Walk MS.

REGISTERTODAY Sign-up at walkMSutah.org or walkMSidaho.org. Participation is free. Fundraising is encouraged.

INSIDE THIS ISSUE

Yoga Classes Coming PAGE 6

In the coming weeks, more than 1,500 people from throughout our chapter will be making strides for a world free of multiple sclerosis at five Walk MS events – Idaho Falls on Sept. 10, Wood River on Sept. 24, Northern Utah (Ogden) on Sept. 24, Southern Utah (St. George) on Sept. 24 and Twin Falls on Oct. 1 (new date). Have you signed up? “Walk MS is a time to rally together with friends and family to raise awareness and support for research and programs that help people with MS move their lives forward,” said Becky Woolley, vice president of community development for the Chapter. “Each Walk MS is unique with its own local flare but each celebrates the determination of all of us to find an end to MS forever.” The Walk MS events range from a one to a three-mile route accessible for people of all ages and abilities. Each Walk MS event includes contests, awards, music and light snacks. “MS is a very silent disease,” shared Kerry Fuller who participated in Walk MS Boise earlier this year. “Walk MS gives me an opportunity to educate and inform people about it. Having fun combined with supporting a great cause is a unique experience. It is a great way to let someone you know who has MS that you care. If you have MS, it gives all those people who ask if they can help, a way to do it.” Did you know that 87 cents of every dollar raised by walkers goes directly to supporting the cause? This means every dollar you raise makes an impact. Grab your family, friends, and co-workers and start a team today. Together, we will achieve a world free of multiple sclerosis. Walk MS is proudly presented by CBH Homes (Idaho) and Questar (Utah).

Stand To Cure MS PAGE 8

Your Neck Of The Woods PAGE 10

Mud Run MS PAGE 15

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This free program can help you achieve some of your goals for living well with MS

Finding the Right MS Treatment for You Wednesday, October 5, 2011 Registration: 5:30pm–6:30pm Seminar: 6:30pm–9:00pm

John F. Foley, MD Director, Rocky Mountain Multiple Sclerosis Clinic Salt Lake City, UT

Vita Kaplan, MD Rocky Mountain MS Clinic

Alyssa Audd, MS Advocate Logan, UT

The Little America Hotel 500 South Main Street Salt Lake City, Utah 84101 Complimentary dinner will be served. Complimentary parking is available. Code: F

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PRESIDENT’S MESSAGE

WE KEEP MOVING! I came across a quote recently from Martin Luther King, Jr. that says: “If you can’t fly, run. If you can’t run, walk. If you can’t walk, crawl. But by all means, keep moving!” I’m proud to say that those associated with the National MS Society are great examples of what it means to keep moving. I meet new people every day who are part of our movement – those benefiting from our local programs, or volunteering for the Society, or fundraising for our important cause. Many of whom are doing all three! We’ve already had more than 8,000 volunteer hours logged this year with folks committed to serving on committees or leading groups, providing resources in our community, running our events, and volunteering in our offices. The volunteers truly fuel our capacity to serve people with MS. We’ve hosted 12 fundraising events since last spring that have raised over 70% of our Chapter’s income to support local programs and research to find a cure. That’s over $2 million, thanks to

our team captains and participants who work diligently to seek funds to support the mission of the Society. We’re also happy to report more people impacted by MS are utilizing our programs and resources to keep moving. This issue of Chapter President the MSConnection Annette Royle-Mitchell is filled with some of those resources which can help us all live well. Programs like our new Live Fully, Live Well educational program, exercise and wellness resources, and even our Self Improvement Grant program which will be funded again for our upcoming fiscal year. I’m proud to be part of an organization that moves forward with such intention. Let’s keep moving!n

TABLE OF CONTENTS RESEARCH NEWS............................................................. 4

HEALTH AND WELLNESS TOOLS..............................12

THE BENEFITS OF DENIAL ........................................... 5

TEN TIPS FOR HIRING HELP........................................13

YOGA CLASSES COMING ............................................. 6

MUD RUN MS UTAH.....................................................15

WII KEEP MOVING.......................................................... 7

BIKE MS 2011 IS A WRAP.............................................16

STAND TO CURE.............................................................. 8

NOW CHAMPIONS.......................................................17

SOCIETY NEWS................................................................ 9

LEGISLATIVE UPDATE...................................................18

YOUR NECK OF THE WOODS....................................10

VOLUNTEERS.................................................................19

NEW CHAPTER DIRECTOR...........................................11

MEMORIALS & TRIBUTES............................................20 TOLL FREE NUMBER 1 800 344 4867

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RESEARCH

YUCK FACTOR: THE SEQUEL If drinking a glass of worm eggs could help with MS, people might just grimace and swallow. Two recently published studies explore whether infection with relatively harmless parasitic worms, called helminths, can reduce disease activity. The idea stems from the “hygiene hypothesis,” which suggests that an early lack of exposure to infectious agents may cause the immune system to later overreact and trigger MS.

In the first phase of a clinical trial (Helminth-Induced Immunomodulation Therapy, or HINT) supported by the National MS Society, John Fleming, MD, and colleagues at the University of Wisconsin, Madison, administered a drink containing helminth eggs to five people with recently diagnosed MS. The participants were then monitored with MRI scans. Study results, published in Multiple Sclerosis Journal 2011 Mar 3, showed that participants tolerated 4

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the helminth treatment well and neurological symptoms did not get worse. However, the small number of participants and the study design made it difficult to draw firm conclusions about the treatment’s effectiveness. The second phase of this study is now under way. In a previously reported Argentine study, Jorge Correale, MD, and Mauricio Farez, MD, at the Institute for Neurological Research, Buenos Aires, followed the disease course of 12 people with MS who ingested helminth eggs. They showed fewer relapses, better disability scores and lower MRI activity compared with uninfected people. In a followup study published in Journal of Neuro-immunology 2011 Jan 28, the researchers report that in four infected participants who required anti-parasitic treatment, MS symptoms and disease-related MRI activity subsequently increased. However, again, because the study was so small, further studies are needed to establish a direct link between parasites and improvements in MS. n

UPDATE ON ORAL BG-12 In April, Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced relapses in people with relapsingremitting MS in a phase III trial. The results of another study comparing BG-12 with glatiramer acetate against placebo are expected later this year. n

AMERICAN ACADEMY OF NEUROLOGY MEETING The American Academy of Neurology’s annual meeting, held April 9-16 in Honolulu, offered promising results about oral MS medications, treatment of symptoms and better understanding of mechanisms involved in the disease. For example, the first reported results of a phase III trial of oral laquinimod suggested it could significantly reduce disease activity and disability progression, while appearing to be well-tolerated. For more news from the AAN conference, go to nationalMSsociety.org/AANews. n

PEDIATRICMS The Network of Pediatric MS Centers met August 1 in Utah to investigate the possibility of completing a new patient registry for pediatric MS, as well as look at new research concepts for this unique population of MS patients. For more information please look for the upcoming articles in future MSConnections.

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LIVING WITH MS

THE BENEFITS OF DENIAL long-term. “You have to move past denial in order to treat and make plans,” she cautioned. “If instead of accepting your diagnosis, you believe the doctors made a mistake, you might not avail yourself of appropriate therapy for both disease and symptom management.” To develop a sensible perspective, it’s important to get as much information as possible. “Find a neurologist you can work with, who allows you to be active in your own care,” Dr. Giesser advised. “It’s less scary when you feel empowered.” Denial allows people to take time to get used to a new situation and not focus on fears of what might Dr. Rintell also suggested speaking with other happen down the road. “Denial gets a bad rap,” people with MS or a professional with relevant said David Rintell, EdD, a psychologist at Partners experience. “After the initial shock, most people MS Center at the Brigham learn that MS can be a “Denial is not a river in and Women’s Hospital in difficult illness, but they Boston, Mass., “but it can be Egypt. And it actually has realize that they will be OK very useful and is sometimes with it. Being optimistic a place in helping people turns out to be realistic.”.n necessary.”

absorb a diagnosis of MS.”

Denial is a very basic defense mechanism, explained Barbara Giesser, MD, clinical director of the UCLA MS Program. “In the process of adapting to chronic illness, denial can be a useful first step in the process of acceptance.” In fact, said Dr. Rintell, people who are unable to use denial may become disabled by anxiety. “Hopelessness is destructive—it reduces motivation, and makes us less likely to adhere to treatment,” he said. “I encourage people to let go of the worst-case scenario and continue to live life, go to work, enjoy relationships and take some time to get used to having MS. Loved ones can help by giving their diagnosed friend or family member permission to deny and therefore cope.”

SELFHELPGROUPS Have you attended a Self Help Group? They are a great opportunity to get connected to your community, learn from others, and both receive and provide support from others whose lives are impacted by MS. We have Self Help Groups throughout Utah and southern Idaho. These groups are a great way to meet other people living with MS. There are new groups in Salt Lake City, Provo, Jerome and Twin Falls. Visit our website for a complete list of Self Help Groups.

However, said Dr. Giesser, denial doesn’t work TOLL FREE NUMBER 1 800 344 4867

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LIVING WITH MS

YOGA FOR MS CLASSES COMING SOON! In recent years, increased attention has been drawn to the numerous mental, physical, and emotional benefits of yoga. Yoga has been practiced for thousands of years and today, a growing body of scientific evidence has begun to confirm the multitude of benefits that have long been touted by its practitioners. Perhaps one of yoga’s best features is that it can be enjoyed by people of all ages and ability levels— including people living with MS. The benefits of yoga for people with MS may include improved balance and coordination, greater strength and flexibility, decreased fatigue, an increased ability to manage stress, and an improved sense of wellbeing. Adaptive Yoga for MS combines breathing exercises with a series of gentle stretching poses that are carefully adapted by a certified yoga instructor to meet the needs of each individual. Props such as chairs and folded towels are often used to make each

pose as comfortable as possible. Yoga is especially recommended for people with multiple sclerosis because it is relaxing and noncompetitive, and its benefits can be experienced when poses are held for as little as five seconds. The Utah-Southern Idaho soon will be offering Adaptive Yoga for MS classes with the pilot program starting first at the Chapter office in Salt Lake City and branching out within the next year to reach more people living with MS throughout Utah and Southern Idaho. Class details can be found on the Chapter’s website and updates on Facebook (facebook.com/ MSutahIdaho). Those interested in learning more also can contact Mykenzie Hydo at 801-424-0112(ext. 31118). As the yogi masters say at the close of class, Namaste (common meaning “good day”)!n

SUMMER SMART MOVES COMES TO A CLOSE

The summer edition of MS Smart Moves concluded on August 6. Summer Smart Moves marks the fourth time that the Utah-Southern Idaho Chapter has administered the wellness program. More than 100 people participated in the program this year. All united in the goal of improving their overall health and wellness. Smart Moves is a nine-week

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wellness program for individuals with MS. Participants earned points over the course of the program in the categories of mind, body, and spirit. The grand prize went to the individual with the highest point total at the end of those nine weeks. If you did participate this year, make plans to sign-up next year. Smart Moves will be back and better than ever in 2012. Have suggestions for Smart Moves? We would love to hear from you. Email brook.osterland@nmss.org to share your experiences with the MS Smart Moves program. n

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LIVING WITH MS

WII KEEP MOVING Play is an important part of health and wellness. For one thing, it keeps you moving. When Salt Lake City’s Michelle Fowler was diagnosed with multiple sclerosis in 2008, staying active and enjoying pastimes was imperative but some days difficult. Fowler is a passionate runner but found she would lose her balance and tire easily. This limited the time she could spend being active. She had two choices. One was to stop moving and the other was to keep moving. Fowler chose to keep moving and she did it with the help of her Wii gaming system. Her favorite game is “Wii Play” a series of nine games that include table tennis and fishing. Fowler also believes her balance seemed to improve the more she played. “It just makes you feel good to keep moving,” she said with enthusiasm. “Instead of sitting around moping that I have MS, I am in control of

the disease instead of it being in control of me.” Boise’s Michelle Jacobi finds power in using her Wii as well. Her favorite game is “Guitar Hero”. It entails being a ‘rock star’ and uses a lot of fast and rhythmic hand movements. She plays every chance she gets. “I always feel so empowered,” she said. “And I think ‘What’s next for me to accomplish?’ There is something so powerful when you play to music that you love. It is also a great stress reliever.” Another game she enjoys is “Train Your Brain.” It challenges you with mental and physical activity. “It’s important to keep your brain as active as your body,” Jacobi added. “Both games help me focus which is important because if you don’t use it, you lose it.” Both women agree that adding play to their routine has made a difference in how they live with MS. Wii is just one way to do it. Find what works best for you and add play to your day!

When Asked About Wii on Facebook You Said … ‘Wii Fit and Wii Fit Plus love them and I can program certain workouts for how I am feeling on certain days” “I, too, use Wii Fit Plus, and mix it up I do Just Dance 2” “My daughter has Zumba and loves it!!!” n

AFFORDINGWii One of Wii’s drawbacks is that it’s not cheap. It usually retails for $250 and up, depending on the model, accessories and games, although with a little Internet research, you may uncover lower prices. And, with the holidays coming up, maybe it’s worth putting this on your Wish List.

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SUPPORT THE MISSION

STAND TO CURE MS, SEPTEMBER 9-10 Have you ever wondered if one person can really change the world? Well, one can with a little help from their friends! In 2008, then six-year-old Thomas Taylor wanted to help his mom who was recently diagnosed with MS. He wanted to do something about MS now. And so he did, one cup at a time. His mother suggested a lemonade stand and Thomas excitedly began working on the project. While his mother looked for lemonade recipes online, Thomas recruited other children to work with him. “Thomas is a very hands-on kid,” his mother Heidi said proudly. “He was only in kindergarten and he organized the project really well.” With a great recipe and a free cardboard lemonade stand, he was on his way to starting something big. That summer Thomas raised

more than $1,000, for the Society and with that the annual Stand to Cure MS was born. Now in its fourth year, Thomas’ idea matched with help from Chapter volunteers has spread to grocery stores throughout Utah. Last year volunteers served more than 6,000 glasses of lemonade, talked to countless grocery shoppers about multiple sclerosis and raised $10,000. “The Stand to Cure MS is an incredible program as well as a lot of fun,” said Stephanie Rokich, volunteer coordinator for the Chapter. “It’s a great way to get involved, meet others from the Chapter and spread MS awareness.” Thomas’ mother agrees and is impressed that very young children can get involved in important philanthropic work. She suggests that parents who want to instill

Thomas Taylor mans his first stand. charitable values in their children volunteer with them. “We now volunteer at our local grocery store and are impressed when the neighborhood children want to come and help,” she said. “The kids really enjoy it. They serve lemonade and my husband and I answer questions about multiple sclerosis.” While Thomas started serving lemonade to raise money for MS research, the program has provided an incredible opportunity to educate more people about multiple sclerosis and how it affects the lives of local families.

Gary Shelton and family hosting a Stand to Cure table last year. 8

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Join Thomas and others September 9-10 at a local Utah grocery store and help spread MS awareness. For more information, email GetInvolved@nmss.org. Together, we can create a world free of MS! n

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NEWS

WELCOME TO DIGITAL MOMENTUM! Momentum, the National MS Society’s flagship magazine, is now available online at nationalMSsociety.org/ magazine in a fully digital edition with plenty of bonus

features. It includes all content from the print edition, including advertisements, and allows you to click on live hyperlinks, comment on articles and respond to reader comments, download whole issues as PDFs, print pages and share articles via e-mail, links or by posting to social networks. Digital Momentum is also available for free from iTunes and the Android Market. The app includes the magazine, the latest Society news, our Twitter feed and videos. n

MEDICARE “IMPROVEMENT STANDARD” CHALLENGED For many people with MS, physical, speech or occupational therapy may be essential in preventing their abilities from deteriorating. However, many of these folks have been denied medically necessary rehabilitation services that they are eligible for through Medicare because of something called the “improvement standard.” The standard actually violates Medicare’s own official regulations, which say that “the restoration potential of a patient is not the deciding factor” for coverage and that therapies that help prevent physical and cognitive deterioration or maintain optimal functioning, even if improvement is not expected, are to be covered. This past January, a class- action lawsuit was filed in the U.S. District Court in Vermont, with the National MS Society as the first national health organization named plaintiff, and subsequently joined by the Alzheimer’s Association, United Cerebral Palsy, Parkinson’s Action Network and Paralyzed Veterans of America. The lawsuit seeks to assure that a person’s “improvement” status is not a basis for denying ongoing

therapy services. The outcome will be reported in “Government News” at nationalMSsociety.org/ advocacy. n

POTENTIAL ANTI-SPASTICITY TREATMENT BOOSTED BY THE SOCIETY’S FAST FORWARD PROGRAM Key early-stage research on an oral treatment for spasticity, the painful and debilitating muscle spasms associated with MS, is underway at Canbex Therapeutics. The UK-based company received a $2.8 million Translation Award in March, 2011, from the Wellcome Trust, a global charitable foundation, to support this research. The work is being led by David Baker, PhD, an MS investigator under the National MS Society’s Promise: 2010 initiative. The Canbex spasticity program has been supported by the Society’s Fast Forward initiative to move this potential therapy toward clinical trial faster. n

RESEARCHNEWS Visit nationalMSsociety. org/research for the latest news.

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NEWS

YOUR NECK OF THE WOODS Check out the good works and events that happened this summer throughout the Chapter. Do you have a story or event to share? Send it to: juliann.fritz@nmss.org.

participate in Bike MS McCall. You can read about his journey at travisbikesamerica.com. Thanks Travis!

educates people about MS. Great job!

BOISE Over 200 people attended the Treasure Valley Battle Against MS 1st annual fundraiser, Music Above the Blue. The group came together to honor Sgt. John “Johnny” Briggs, Jr., diagnosed November 2010, and raise funds for the National MS Society.

MacKay’s Donna Cain with her sister-in-law Nan Cain. Travis White bikes through Idaho raising awareness.

DRAPER, UT

Music Above the Blue Organizing Committee. Denver’s Travis White embarked on a momentous adventure this summer. The 61 year old who lives with MS cycled across America from Astoria, OR to Portsmounth, NH (3,667 miles) raising money and awareness. While passing through Boise, Pocatello, and Twin Falls, he spoke with media and encouraged Idahoans to 10

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Lyric Motion celebrated their first dealership in the U.S. with a grand opening on July 29 and 30. A brand new Lyric, as well as other donated items, raised $2,321 in a silent auction for the Society. The Lyric is an electric vehicle that operates at just pennies per mile and provides reliable, safe, fun and convenient transportation. Check out their website to learn more (lyricmotion.com).

MACKAY, ID Donna Cain has been going the extra mile to earn money for Walk MS Idaho Falls. Cain sets up tables at farmer’s markets, tractor pulls and car shows across rural southeast Idaho. There she sells wristbands and

PARK CITY, UT It’s never too early to get a jump on 2012 fundraising! Top Bike MS fundraiser, Kevin Bauer, hosted a golf tournament at the Promontory golf club on August 1, raising more than $10,000.

Kevin Bauer (blue) with some great MS supporters.

SALT LAKE CITY “What is Art to Someone with Multiple Sclerosis?” was an exhibit at the Sorenson Unity Center this summer June 3-Aug. 4. It showcased drawings,

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NEWS

paintings and mixed medium art work by Barbara Barman, Kaye Calfo, Beth Hazur and L.D. Artman who all live with MS. The pieces celebrated their abilities and outlook on the world.

The artists from the Sorenson exhibit.

Congratulations to Dr. Timothy West who recently finished a fellowship at the University of California, San Francisco, sponsored by the National MS Society. He is off to Las Vegas to head the multiple sclerosis program at that Cleveland Clinic Ruvo Center for Brain Health. His mother Abby is the namesake of the Bike MS Utah team Abby’s Avengers. This summer the eBay Foundation presented a $5,000 check to support the scholarship program in the Utah-Southern Idaho Chapter. Over a dozen members of the eBay Give Team

delivered the check and toured the Chapter headquarters to learn more about what the Society does. And, while there, committed a team of 25 to Mud Run as well! n

Ebay Give Team donates to the Scholarship Program.

WELCOME JUDY BISHOP, DIRECTOR OF PROGRAMS & SERVICES The Chapter is pleased to announce Judy Bishop has joined the staff as Director of Programs and Services. Prior to joining the team Bishop was the Clinical Program Manager at the University of Utah’s MS Rehabilitation and Wellness Program. She also is the former Director of Wellness at Northeast Georgia Medical Center in Gainesville, GA. Prior to moving to Utah, she was actively involved with the American Heart Association serving as HeartWalk chairman for five years and Heart Fund chairman for a year. She is a graduate of Temple University in Philadelphia, where she also completed a masters degree in Exercise Physiology. In addition, Bishop is a former national competitor in rowing. n

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LIVING WITH MS

TOOLS TO HELP WITH HEALTH AND WELLNESS You’ve heard it before, and chances are, you will hear it again: managing your overall health and wellness is an integral part of living with MS. The Utah-Southern Idaho Chapter could not agree more. That is why we strive to provide you with tools to help you to achieve your health and wellness goals. Here are several programs we hope you will take advantage of in the coming months.

SELF IMPROVEMENT GRANTS Beginning October 1, the Chapter will again be taking applications for the Self Improvement Grant program. This wellness focused grant covers 50 percent (maximum of $100) of a wellness related expense for individuals with MS. Grants can be for a gym membership, a piece of exercise equipment, a weight loss program, or any other expense that aims to improve health and wellness. Applications will be available online or by calling the Chapter at 800-344 - 4867.

LIVE FULLY, LIVE WELL

GET TOGETHERS

The Live Fully, Live Well program offered in partnership by the Society and Can Do MS (formerly the Huega Center for Multiple Sclerosis) is a wellness program for people with MS and their support partners. The program consists of webinars, toolkits for self-help groups, and online videos to introduce various wellness topics. Click here for additional information.

We are in the midst of planning some fun social programs across Utah and southern Idaho. We have a movie night planned for young adults with MS in the Salt Lake City area on September 20 at Brewvies. We will also be hosting Family Night at Linder Farms in Meridian on October 20. Visit our website to register and for a complete list of upcoming programs.

IN-PERSON PROGRAMS Connecting with others can help improve wellness, whether it be connecting with your spouse or partner, or meeting others whose lives have been impacted by multiple sclerosis. The Chapter is offering several opportunities to do just this. For those living in southern Utah, we will be hosting Eight Hours to a Lifetime of Relationship Satisfaction, a two-day program for couples living with MS taking place September 21-22. In northern Utah, we are kicking off Gateway to Wellness in early October. It is a six-week in person wellness program for individuals with MS. Make sure to check the Chapter’s online calendar for additional programs.

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Sometimes, all you need to jumpstart you on the road to wellness are a few other people to get together and exercise with or go to a yoga class with. If you are interested in starting a group like this in your area, the Chapter is here to help you. Just give us a call (800344-4867) and we can help you get started. For those living with MS, wellness is more than disease management. We hope you will take advantage of some of the wellness tools mentioned above. n

PROGRAMSCALENDAR Be sure to visit the Chapter website for a complete list of upcoming educational and social programs. We hope to see you there!

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MONEY MATTERS

TEN TIPS FOR HIRING HOME HELP BY AL TAINSKY

3. Have him or her agree to give one month’s notice—and do the same. 4. Don’t hire an alcoholic. (I expect my caregivers to be clean and sober in my home.) 5. Keep food separate. (Sometimes we eat together, sometimes we don’t.) 6. The caregiver’s room should hold all the caregiver’s goods. (I have no room for storage and nothing should hinder my movement in my home.) 7. No sleepovers and no inviting friends over without permission. (I need night coverage and that is non-negotiable.) 8. Keep your computer and printer for your personal use only.

Respect, honesty, compassion, compatibility and civility are core ingredients of a successful caregiving relationship. But a sense of humor and a soupçon of soul don’t hurt either. I was diagnosed with MS in 1987, but I trace the disease back to the 1950s and a summer so hot it melted the tar on Anderson Avenue in the Highbridge section of the Bronx. For nigh on 20 years, I have hired, fired and lived with caregivers. I call my current live-in caregiver Mr. Wizard. His technical and computer skills are remarkable. He has a sense of humor and he taught Sunday school for about 14 years. His younger sister is developmentally disabled and the love he feels for her shows a man of substance. Here are a few of my tips to finding your own Mr. Wizard. 1. Have applicants supply the names, addresses and phone numbers of three personal or work references. 2. Hire someone with a clean driving record.

9. If a caregiver steals, lies or cheats, make a plan for coverage before firing the miscreant, so you’re not left on your own. 10. Don’t surrender control of your life to anyone. Need help? Call a friend, call a relative, call the Society, call the closest Independent Living Center and if necessary call the police. Al Tainsky was a professional journalist and sometime writer of comedy for television when he was diagnosed with MS 24 years ago. He continued to live independently and to write articles for Momentum magazine, Real Living with MS, and other disability publications. He died of a heart attack in February shortly after completing this article. We will miss his smarts and his spirit. n

AFFORDINGCAREGIVERS Call 1-800-344-4867 to talk to an MS Navigator®. Also go to nationalMSsociety.org for the brochure, “Hiring Help at Home.”

TOLL FREE NUMBER 1 800 344 4867

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SUPPORT THE MISSION

e 33 rd Annual presented by the McCarthey Family

to benefit the National MS Society Celebrating community and athletic leaders including the renowned Dr. John Rose & Dr. John Foley, as well as, Charles “Chick” Hislop, Phil Johnson, Dave Checketts, Dr. Chris Hill and Jimmer Fredette, among others. September 14, 2011 La Caille Restaurant More information is available at cureMSutah.org or by calling 801-424-0112, Ext.31102

SAM’S CLUB RAISES NEARLY $1.2 MILLION DOLLARS TO BENEFIT PEOPLE LIVING WITH MS. After six short weeks of fundraising in over 600 clubs across the country, and at the conclusion of an intense MS-themed dodge ball tournament at their annual meeting, Sam’s Club presented a check to the Society for nearly $1.2 million. Making the most of grass roots fundraising techniques that included donation jars, caramel apple and hot chocolate sales, and MS bracelet and sneaker sales in club parking lots, Sam’s Club employees rallied together to make a significant financial contribution to the MS movement. On behalf of the National MS Society and people with MS everywhere—thank you Sam’s Club!

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Sam’s Club Dodge Ball Tournament

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SUPPORTING THE MISSION

RUNNERS GOT DOWN & DIRTY AT MUD RUN MS UTAH The inaugural Mud Run MS Utah took place August 13 and included tons of thrills and muddy spills. Approximately 350 runners came from multiple states and throughout Utah – Vernal, Spanish Fork, Ephraim, Provo, Lehi, Park City, Ogden, Tooele and the Salt Lake valley – to the Miller Motorsports Park to play dirty for a good cause. The event raised $60,000 for multiple sclerosis research and local programs and services for people impacted by the disease. “Mud Run MS brought the community together for an amazingly exciting event while also educating a new audience of participants about multiple sclerosis,” said Chapter President Annette Royle-Mitchell. “Today we saw people voluntarily tackle muddy challenges and conquer them just as we will one day overcome this disease for a world free of MS.”

Team CPK having fun and getting dirty! For the Tsosie-Medina family, who signed up just days prior to Mud Run MS and raised more than $1,200, the day was about being together and helping a loved one and many others with multiple sclerosis. “We did it to support my cousin and MS,” said Joni Tsosie who came from Dallas to run with her cousins and siblings living throughout Utah. “It was amazing and so much fun. We’d come up to an obstacle and take a deep breath and then just try it. We tried them all and waited for each other as a team. Going through obstacles and knowing it was for a good cause helped us do it.”

Brian Moore of team Medina’s Pig Faces gets muddy for his cousin. Designed by former Marines, Mud Run MS Utah is a 10K (6.2 miles) “boot camp” style obstacle course. It is produced by The Original Mud Run. Saturday’s event had more than 20 obstacles that included swinging across mud pits, crawling on elbows through wet dirt, gliding down a 30 foot tall slip and slide splashing into the mud, among other fun challenges. The adventure finished with the Tooele Fire Department hosing participants off.

“I felt like it all was for me,” said her cousin Marco Medina who also got dirty with his family. “Technology and life today are moving so fast, hopefully they’ll find a cure in my life time. That’s why we’re pushing for all this.” Mud Run MS Utah was proudly supported by the Miller Motorsports Park, Harmons Grocery, Station Park, Simmons Media Group (X96 and 101.5 The Eagle), Silver Bean Coffee, Squatters Beers, Wasatch Brewery, Worldwide Rental Service, Powerade and Glacéau Vitamin Water. n TOLL FREE NUMBER 1 800 344 4867

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SUPPORTING THE MISSION

BIKE MS 2011 IS A WRAP! More than 3,000 cyclists pedaled with purpose in our Chapter this summer. Their efforts riding and fundraising will help make a difference in the lives of many. The 25th Anniversary of Bike MS Utah: Harmons Best Dam Bike Ride (June 25-26) was a huge success. Thanks to all the generous riders and their supporters, more than $1.4 million dollars was raised. The ride based out of the Cache County Fairgrounds in Logan, Utah, and went throughout scenic Cache Valley and into parts of Idaho. The stories of why people rode left a lasting impression. While at the last rest stop on Saturday, some of the Society staff saw Cal and Leslee Engh of Cal’s Flyers. Earlier in the spring the Enghs came into the office when they first decided to participate in Bike MS because Cal has MS. They were excited and anxious about their first ride. It was a treat to see them just 11 miles before meeting their goal at the finish line.

Gordy Myre with rest stop volunteers. Alison Moon who spearheaded Team Marissa, made up of family members who all rode in honor of her late daughter and several other members of their family with MS, was impressed with what can be accomplished. Her team of nine didn’t own bikes until they signed up and eight of them persevered to complete their first century ride while also raising more than $6,000. Another highlight was having National Passport Rider Bruce Reid, who drove from Florida, participate. He has ridden in Bike MS events in 27 states and commented that Bike MS Utah was one of the best organized with a great atmosphere. Now that’s something to brag about!

Cal’s Flyers at their first Bike MS. Photo courtesy Zazoosh.com 16

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Bike MS Idaho: Road, Sweat & Gears McCall took place a month later (July 23-24). The close knit group of nearly 100 cyclists raised approximately $55,000. The ride based out of the fun resort town of McCall, Idaho, and went along Lake Payette, up to the Payette River and Upper Payette Lake, and out to Secesh Summit.

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SUPPORTING THE MISSION

Inspiration to ride with purpose was felt throughout the Idaho event.

NOW MS RESEARCH

Leah Rouke, who was diagnosed with MS in 2008, rode in her first Bike MS McCall but second Bike MS of the summer. She went the distance cycling 135 miles (and that’s in addition to the 150 miles she had under her belt from Bike MS Denver). Rouke’s positive energy was contagious and her cow bell brought additional fun to the ride. She also rode in honor of her mother and aunt who are both living MS. While walking is difficult for Gordy Myre, he’s all about being active and riding in McCall. He met his goal to go 50 miles this year pedaling his recumbent bike with arm power. One SAG/HAM radio volunteer mentioned he is one of the reasons he volunteers at Bike MS. CHEERS FOR VOLUNTEERS! Both Bike MS events couldn’t have been a success without the 400 volunteers that worked tirelessly to check-in participants, serve water and food, and make sure everyone was having a good time. Thank you! n

The National MS Society has committed to raise $250 million for MS research through the new campaign – MS NOW (No Opportunity Wasted). The initiative aims to fund research to STOP MS in its tracks, to RESTORE what’s been lost, and to END MS forever. To achieve this bold fundraising goal by the end of 2015, we need everyone in the MS movement to stand together so no opportunity is wasted and all promising research paths are followed. Join MS Ambassador and Research Champion Phil Keoghan of “The Amazing Race,” by becoming an MS Research Champion today. It’s easy to be a MS Research Champion. Visit the nationalMSsociety.com/NOWChampion website and join the revolution. Watch the “NOW MS Research” video and take the new online training module. When complete, you’ll receive an electronic certificate of completion you can proudly display and an electronic reference card you can print and share with others. Ask your community to join you in becoming a Champion in the MS Research Revolution. Those that make a $30 donation also will receive a “Champion for MS Research” t-shirt to wear proudly.

Finish line volunteers kept the energy up at Bike MS with cheers and applause

Help us get this revolution going NOW! n

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ADVOCACY

SUMMER LEGISLATIVE UPDATE Both Idaho and Utah state legislators have been busy preparing for what promises to be busy and potentially stressful 2012 legislative sessions. Utah legislators are utilizing interim meetings to hammer out details of Medicaid reform. Advocates have expressed concerns over the potential impacts on people with disabilities and low-income families if the Medicaid waiver the state recently applied for is granted. Specifically, the waiver could increase the out of pocket costs to Medicaid recipients and lacks well-defined quality standards regarding outcomes of care. In the meantime, leaders in both states continue to work hard to determine the next steps for implementing health care reform and the Affordable Care Act (ACA). Both states have created task forces to study the issues and come up with suggestions. Utah already has a health insurance exchange, but the exchange is not yet up to the standards required by the ACA, while Idaho must work to create an exchange from scratch. Idaho’s Department of Insurance has been working on a plan and will likely have legislative proposals for the establishment of an exchange next session. To find out more information regarding the Health System Reform Task Force in Utah, please visit the blog Health Matters (http://blog.healthpolicyproject.org) by our friends at the Utah Health Policy Project. For more information about health reform in Idaho, you can periodically check the exchange’s new website – healthexchange.idaho.gov. For other questions or to sign up for our monthly Advocacy E-News, please contact Taryn Magrini (taryn.magrini@nmss.org or 800-344-4867 (option 1).

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At the National Level For members of Congress, August means time in their districts. For staff and activists at the Utah-Southern Idaho Chapter, August means an opportunity to meet with those members to discuss the National MS Society’s priority federal issues. Throughout the August Congressional recess, staff and activists did just that. The Society has identified three priority issues: MS research funding via the Congressionally Directed Medical Research Program, the Adult Day Achievement Center Enhancement Act (HR 883/S 495), and Improving Access to Neurological Care (HR 2224/S 597). We also took the opportunity at these meetings to urge members to join the MS Caucus in their respective chamber of Congress; the Caucus is co-chaired on the Senate side by Utah Senator Orrin Hatch. All three of these issues are of critical importance to the estimated 400,000 people in the United States living with MS. For more information on each of these issues, please visit nationalMSsociety.org/ advocacy. Take the time to contact your elected officials, share your story, and urge their support on each of these three important issues. n

SOCIETYADVOCACY Get involved in MS advocacy and learn more about public policy issues by visiting nationalMSsociety.org/advocacy. Or call our office to find out about state and local issues at 800-344-4867 (option 1).

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VOLUNTEER

VOLUNTEERING: A FAMILY AFFAIR The Escobedos are a tight-knit group. When Kim was diagnosed with MS 12 years ago, her doctor gave her a choice – her family or her career. “When I was diagnosed I loved my career and was very career-oriented,” she said. But she knew she needed her family at that difficult time in her life, and they needed her too. “I needed to give my career up and be with my family,” she decided. Her husband, Bill, and their three children, Daniel, 18, Amberly, 16, and Michael, 14, rallied together and became closer because of it. Although the first year was hard, Kim said, “I would never change it for anything. My kids and I are so close. It’s just wonderful.” It didn’t take long for the Escobedos to get involved with the National MS Society. Kim started a support group in 1999 at the Nampa Recreation Center, which she still leads today and has grown to include about 50 people. Kim said her family is

very encouraging and helps her manage the support group. She also considers her fellow friends in her support group to be part of her family. “We are family. I can’t give up on them,” she said. The family also volunteers at both Walk MS and Bike MS after a Society staff member encouraged them to become further involved. At Bike MS, they are in charge of one of the rest stops. While Kim and most of the kids (along with their friends) take care of the cyclists with drinks, snacks, and cheers, Bill and Daniel drive the rest stop truck all weekend, delivering supplies. “I think it’s good for my family to be together and be helpful to others. We’re together as a family,” Kim said. Through all the struggles of living with MS, Kim’s advice is to stay positive. As her support group motto goes, “Bring your smiling face and come join us.” n

IN THEIR OWN WORDS: WHY DO YOU VOLUNTEER WITH THE SOCIETY? “I volunteer because it gives me a self worth feeling, and because I have MS and know it’s easier when people are helping you do certain tasks.” – Jermaine Wright “The Society makes it easy.” – Alaina Vrontikis “I volunteer because I have MS, and I can interact with those who don’t and thank them for helping to raise funds to find a cure!“ – Lisa Eppley

“After being diagnosed with MS myself and seeing all that the National MS Society does to help people like myself who are either diagnosed with or affected by MS, I decided that I wanted to be involved. It’s been wonderful meeting and getting to know the people who make the Society what it is and knowing that I am helping make a difference with something so important to me and many others. It really helps me with my own struggles.” – Grace Drouin

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SUPPORTING THE MISSION

MEMORIALS & TRIBUTES Memorials

Tributes

Carleen Astle Janet E. Lawson Lori Lish Nancy Snyder

Samantha Snarr Gramse Tabitha Thompson

Adele Lamke Goodman Sharon Abramsohn Karie Rae Gordon Marcia Reese, JoAnne, Helen, Carolyn, Marcia, Mary Ellen “The Club Girls” Robert F. Hale Questar Paula Hansen Eric Spencer

Joan Hall-Fienberg Mr. and Mrs. Michael Harper Steve Horton, Team FLH Ryan Stevenson Annette and Gary Mitchell Ron and Pam Clem Kim Peacock Eveline and Ira Field Launa and Sharon Kari Hymas

Steve Kalinski Michael W. McCullough Richard A. Kimball Allene Fowler Ann Marsh Glennae Fielden Gayle Flinn Newnham Dorothy Morris Roger Ottersbach Laura K. Gagel Willard and Sharlynne Milham Fred Thompson Deanna L. Steadman

In lieu of gifts for special events or flowers for the loss of a loved-one, many choose to make a donation in the honor or memory of someone special. If you would like to make a donation, please visit our website cureMSutah.org/ cureMSidao.org or call 80-344-4867 (option 2).

800-344-4867

PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY UTAH-SOUTHERN IDAHO CHAPTER Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. Information provided by the Society is based upon professional advice, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The National Multiple Sclerosis Society is dedicated to creating a world free of MS. © 2011 National Multiple Sclerosis Society, Utah-Southern Idaho Chapter National MS Society Utah-Southern Idaho Chapter 6364 S. Highland Drive, Suite 101 Salt Lake City, UT 84121 Boise Office 6901 W. Emerald Street, Suite 207 Boise, ID 83704 Follow us at: facebook.com/MSutahIdaho

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MSC Summer 2011  

Quarterly newsletter of the Utah-Southern Idaho Chapter of the National MS Society. Issue highlights Chapter news, health & wellness informa...

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