MSC_summer2013 by NMSS Utah-Southern Idaho Chapter

SUMMER 2013 UTAH-SOUTHERN IDAHO CHAPTER

MS CONNECTION NEWSLETTER CONGRATULATIONS SOCIETY SCHOLARSHIP RECIPIENTS!

Chapter Awards $24,500 to 16 Bound for College The National MS Society believes MS should not stand in the way of an education. In 2003, we established the Society Scholarship program to help aspiring high school students achieve their dream of continuing their education. This year, $655,200 was awarded to 421 recipients from across the country, including a total of $24,500 for 16 young people from the UtahSouthern Idaho Chapter bound for college.

when exacerbations are difficult. She plans to study business at Colorado College this fall. “[I] believe that my mom is the truest cliché, my mom has MS but MS does not have her. Knowing this has made me feel prepared for anything that comes my way,” she noted in her application.

Paige Leonnig (Eagle, ID) also credits her mom, who was diagnosed with “Many of these teens have MS when she was eight had to grow up quickly years old, with her own either by helping a parent “MY GOAL IS TO FACE THE REST OF MY approach to dealing with with MS or learning to life’s challenges. “My goal LIFE THE WAY MY MOM HAS FACED manage their own MS is to face the rest of my life HER OWN – A SMILE ON MY FACE, diagnosis,” said Chapter the way my mom has faced President Annette RoyleHOPE IN MY HEART AND OPTIMISM her own – a smile on my Mitchell. “Often, the face, hope in my heart and FILLING MY MIND.” added expense of college optimism filling my mind.” or the loss of a caregiver is Paige plans to work in difficult for a family. The healthcare one day. Society is here to help and we’re thankful to These are just two of the 16 amazing students our many supporters who make our important receiving scholarships this year. work – helping people impacted by MS – possible.” A special highlight of the scholarship program is to honor the Chapter’s top fundraisers. Any The Chapter’s highest honor, the Val and Bike MS or Walk MS participant raising Edith Green Scholarship, which grants a Utah $10,000 or more had a scholarship named in student $5,000 over the course of two years, their honor. was awarded to Jade Frost (Holladay, UT). An exemplary student, she has balanced school Scholarship applications for 2014 will be with helping to care for her mom, especially available on our website in October.

CONTINUED ON PAGE 3

MS CONNECTION: SUMMER 2013

NATIONAL MULTIPLE SCLEROSIS SOCIETY Utah-Southern Idaho Chapter

CARLSBAD TO SAN DEIGO - SEPT. 27-29, 2013

MYMSCHALLENGE.COM

1-800-344-4867 utah.idaho@nmss.org

3 DAYS 50 MILES

C O N N E CT TO END MS

Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108 Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83704

Connect With Us Online: Like us: facebook.com/ MSutahIdaho

Join others from throughout the west for an all-inclusive weekend along the beautiful coastline of southern California.

Learn more and sign up today!

Watch us: youtube.com/ cureMSutahIdaho Join us: MSConnection.org ÂŠ2013 National Multiple Sclerosis Society Utah-Southern Idaho Chapter

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 MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned.

MSIDAHO.ORG | MSUTAH.ORG 1-800-344-4867

PRESIDENT’S MESSAGE

Knowledge is Power

I love the title of one of our programs for people newly diagnosed – Knowledge is Power. Isn’t that the truth! I’m a big believer in the value of learning new things, asking hard questions and exploring the unknown. The knowledge we acquire always contributes to better decisions and life experiences. I think that’s why I love the programs and services we offer at the Society – resources that offer knowledge on just about anything when it comes to MS. Information that can help you understand what MS is when you are newly diagnosed, or resources in the community that can help you adapt when the rhythms of your life and MS change. We all have a right to live well, and how powerful it is to be given tools of knowledge that help us do that. Information on nutrition, exercise, techniques, social groups, or adaptive tools – they all empower us. I personally love learning about advances in research that are offering more solutions every day. Plus, things I can do to support those I care about who are impacted by MS. I encourage you to let us know what we can do to give you the knowledge and tools you need to live with empowerment. We love visitors to our offices in Boise and Salt Lake City or we are easy to connect with via phone, on the web, and on Facebook (see all our contact info on page 2). Right now, we are in the process of putting our 2014 plans in place and I’d love to hear from you on what they should be. I hope you will be empowered with new insights as you read this issue of the MSConnection, and I look forward to learning your ideas, too.

Annette Royle-Mitchell Chapter President

CONTINUED FROM COVER

2013 SCHOLARSHIP RECIPIENTS

Val & Edith Green Scholarship Jade Frost, Holladay, UT - $5,000 McCarthey Scholarships Cynthia Coombs, Herriman, UT - $2,500 Dean Whitworth, Herriman, UT - $1,500 Yara Call, Hooper, Lehi, UT - $1,000 Laurel Spencer Scholarship Cortney Kinder, Dutch John, UT - $2,500 Greg Spencer Scholarship Kayla Atkisson, Draper, UT - $1,000 Frank Lundquist Scholarship Brenna Bergeson, Cedar Hills, UT - $1,000 Chris Bias Scholarship Allison Gardiner, West Jordan, UT - $1,000 Mark Purcell Scholarship Megan McCulley, Holladay, UT - $1,000 Mark Jensen Scholarship Marlee McKean, Salt Lake City, UT - $1,000 Linda Blocker Scholarship McKenna Smart, Provo, UT - $1,000 Willie Blocker Scholarship Peter Vernon, Highland, UT - $1,000 Chapter Scholarship Paige Leonnig Eagle, ID - $1,500 Kristina Pearson, Ikom, ID - $1,500 Ryan Clark, Herriman, UT- $1,000 Trevor Conrad, Rexburg, ID - $1,000

04 LIVING WITH MS

Heat and Cognition

BY JULIE STACHOWIAK, PhD

Results from a recent study show a link between heat and impaired cognitive function in people with multiple sclerosis. I bet that many, if not most, of you reading this will think, â&#x20AC;&#x153;This is news? I could have told anyone that my thinking (along with other things) is impaired in hot weather.â&#x20AC;? However, this study actually is a big deal, because it is the first time that such a link has been formally demonstrated.

THE NUMBERS

Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, compared cognitive functioning under different temperature conditions in 40 people with MS and 40 people without MS. The data showed that cognitive functioning in people with MS was more affected by hot weather than cognitive functioning in people without MS. On cognitive testing, people with MS performed significantly better on cooler days than they did on warmer days, while people without MS performed the same regardless of the outside temperature. For more information on the study, which was published in Neurology, visit nationalMSsociety.org/ heatcognition. This is important information for many reasons. In the study scientists pointed out

MS CONNECTION: SUMMER 2013

that this type of seasonality could affect clinical trial results. For instance, if people enrolled in a trial in the summer and were followed for six months through fall and into the winter, a drug to treat cognitive dysfunction (or many other MS symptoms, really) could seem like it was working, when in fact, some of the improvement might simply be due to temperatures dropping.

WHAT YOU CAN DO

That is interesting from a scientific perspective, but what does this information about heat and cognition mean for people with MS? There are no treatments that are effective for cognitive dysfunction, but there are some things we might be able to do to help ourselves. Many of us have strategies we use to stay cool and avoid overheating. Here are a few additional tips you may want to consider:

ASK FOR ACCOMMODATIONS AT WORK

You may want to explain to your employer that the hot weather makes things a little

COOL LIQUIDS CAN HELP BEAT THE HEAT

MSIDAHO.ORG | MSUTAH.ORG 1-800-344-4867

harder for you and that you want to do a good job, but need a little help. Be specific in what you want, such as asking for a fan or cooler working area, and why you need it. You could also ask for people to communicate with you in writing, so that you wouldn’t miss anything that might be mentioned in passing – document requests in email or using a shared online calendar might help. For more information about accommodations at work, visit nationalMSsociety.org/accommodations or call an MS Navigator® at 1-800-344-4867.

FIX YOUR WORLD

I think many of us are our own enemy when it comes to cognitive dysfunction. We try to multitask while living in a world with constant noise and clutter, which leads to stress and frustration when we can’t get everything done or we forget things. Try this: Clean up your house. Turn off the television. Focus on one thing at a time. When you talk on the phone, just concentrate on the conversation – don’t simultaneously fix dinner, surf the Internet and keep an eye on your toddler. You may think you have no time for only doing one thing at a time – trust me, you will get more done and it will be done better if you don’t try to do it all at once.

BE PATIENT

Treat yourself kindly. Yes, I get mad at my brain for slowing down in the summer and I

have gotten frustrated that my work doesn’t get done and I forget things and on top of it, I feel lousy for a good chunk of the year. Guess what? That hasn’t helped me one bit. In fact, it makes everything worse when I let myself get flustered. When I feel these emotions coming on, I try to slow down my reactions and figure out how to make my immediate situation better. Sometimes, dropping everything and having a big cold glass of iced tea is enough to derail the negativity. Other times, it may take a little more effort, like taking a cool shower or making a phone call to a friend.

Understanding & Managing MS An educational series held each month through December with a new topic about living a better life with MS. Light meal provided. Registration required. Visit MSidaho.org or call 1-800-344-4867, option 1.

WHEN:

Third Wednesday at 6-7 p.m.

WHERE:

St. Alphonsus Regional Medical Center in Boise

UPCOMING TOPICS:

June 19 - Keeping It Together July 17 - St. Alphonsus Specialists August 2 - Up and Coming Research and Treatments

MS CONNECTION: SUMMER 2013

RESEARCH

Making Treatment Personal BY DR. LINDA BUCHWALD

One of the most frustrating aspects of treating multiple sclerosis, for both doctors and people with MS, is not knowing in advance how an individual will respond to a particular medication. Our frontline disease-modifying treatments, the ones we use first in treating someone with MS, all have demonstrable benefit in clinical trials and in real practice. However, not everyone’s MS responds equally to all of these medications.

FINDING THE “SIGNATURE” OF MS

Currently, no doctor can predict which people will respond best to which drugs. However, if a doctor could identify which patients were more likely to respond to treatment, and if there were clues as to how active their disease will be, it would give doctors a tremendous advantage in recommending therapy. MS research now seems to be on the path to do precisely that at some point not too long from now. A team led by Dr. Philip L. De Jager, a Harry Weaver Scholar of the National MS Society who is affiliated with Harvard Medical School and Brigham and Women’s Hospital in Boston, has discovered that differences in active genes — detectable in blood samples

— have the potential to be used to group people with MS into categories that may predict disease course and responses to therapy (Science Translational Medicine, 2012; 4:153ra131). The team related specific MS disease patterns to genes that were active or inactive in blood samples from 141 people who were newly diagnosed with MS and who had not yet been treated. The blood samples contained immune cells known to be important in the disease activity involved in MS. From these cells, the team extracted a type of molecule called RNA, which shows which genes were turned on in the immune cells. In this way, the team was able to find a “signature” that could predict, early on at least, the likelihood of active disease.

A FIRST STEP PROMISES MORE

It’s very important to note that this study was a first step, and there are many more questions to answer, including whether this process can predict a shift from a relapsing form of MS to a progressive form. Further research is needed to verify and refine this approach before it becomes a tool that can benefit treatment decisions made by people with MS and their health care providers.

MSIDAHO.ORG | MSUTAH.ORG 1-800-344-4867

RESEARCH

Advances in Pediatric MS

An increasing number of medical centers across the United States are collaborating on research on how and why multiple sclerosis happens in children and teens. Their work is already yielding valuable information on early triggers of MS.

A COLLABORATIVE APPROACH

The Network of Pediatric MS Centers was initiated in 2006 through a grant from the National MS Society. Thanks to its multidisciplinary approach, researchers at participating institutions are gathering valuable data on the disease. “We have been able to unravel key features of pediatric MS such as distinct characteristics of the disease on the MRI and spinal fluid of patients younger than 11,” says Emmanuelle Waubant, PhD, professor of Neurology and Pediatrics at the University of California – San Francisco, which is currently running a large study aimed at unraveling the triggers of pediatric MS. “Until this groundbreaking

work, these atypical characteristics at disease onset resulted in delayed diagnosis and care, and thus higher chance of disability.” Thus far, the network has learned that MRIs of patients under 11 show larger and more poorly defined MS scars compared to adults, and that MS scars in young patients often go away within a few months, which is very rare in adults. They also observed that the spinal fluid of young patients can show more inflammation than in adults. Younger people can also have problems thinking and experience lethargy with their first MS attack. These findings have helped make the way forward clearer. “Now that these distinct features in younger patients have been identified, accurate diagnosis in children with MS is made easier and early treatment can better prevent disability onset,” says Dr. Waubant. To learn more about pediatric MS and research in the field, visit nationalMSsociety.org/pediatricMS.

DID YOU KNOW?

Important work on pediatric MS is taking place here in our chapter too? The University of Utah hosts the MS Pediatric Data and Analysis Center where researchers are studying data from all of the pediatric MS clinics around the country. Drs. Rose and Casper lead this effort and were recognized last fall as “Healthcare Heroes” for their efforts helping to unlock the secrets of MS.

08 FUN CHAPTER HAPPENINGS IN YOUR

Neck of the Woods Please share your news with Juliann.Fritz@nmss.org.

CHAPTER-WIDE

Several MS clinicians from our area attended the national Consortium of MS Centers meeting in Orlando, FL, at the end of May. The meetings included a special roundtable organized by our chapter that focused on how to better serve people with MS, especially in rural areas. Idaho Gives (May 2) and Love Utah Give Utah (March 22) introduced us to new donors and helped to spread MS awareness. These special statewide days of giving raised $8,000 from 89 different donors! Special thanks to Norco and other donors who made matching gifts. And, to volunteers who helped with the campaigns!

IDAHO FALLS

In May, the Chapter hosted Relationship Matters, a weekend program to help couples better manage the impact of MS on their relationship.

MURRAY

Our first MS Wellness Expo was held at Intermountain Medical’s Doty Education Center. Participants benefitted from a variety of vendors, programs and made new connections.

PRICE

Danny Velasquez, a chapter board member and a Self Help Group leader, turned in 220 volunteer hours (wow!) to his employer Rocky

MS CONNECTION: SUMMER 2013 Mountain Power. They will make a donation for every hour volunteered. Does your company have such a program?

ST. GEORGE

Varoom! Bike MS 150 Club member Don Ipson held a classic car rally and cruise in April and raised more than $12,000.

NOW RESEARCH CAMPAIGN

The Chapter has set a goal to raise $3.2 million specifically for research by 2016. This past quarter, $53,000 was donated bringing our current total to more than $1,045,000! Do you know someone who can help us achieve our goal? Contact Becky.Lyttle@nmss.org.

I RIDE WITH MS PROGRAM

Harmons Best Dam Bike Ride is pleased to partner with Genzyme and MS OneTo-One to celebrate cyclists who are riding with MS. The “I Ride with MS” program provides a complimentary jersey and other VIP benefits to those who sign up and ride at Bike MS. Learn more and sign up at tinyurl.com/c79ksjx or call us today.

COVER GUYS

Did you see the cover of the latest issue of the Society’s national magazine Momentum? That’s Rex Parker and Team WinCo from Boise! A special thank you to the team for braving the winter cold for the photo shoot and to Rex and Gordy Myre who shared training tips for the article. Way to go team!

MSIDAHO.ORG | MSUTAH.ORG 1-800-344-4867

SUPPORTING THE MISSION

Walk MS Connects People Mix sunshine and thousands of people who want to do something about MS and you have an amazingly inspirational morning. That’s what happened in April at Walk MS in Boise and Salt Lake City. Throughout the year, participants were busy raising funds, but when it was time to come together at Walk MS, they celebrated their strength and the power of connections. “I raise money not for myself, but for others that can’t afford [things like] their medication and because of these wonderful events where we come together and support one another,” shared Troy Meyer who lives with MS. In Boise, the KBOI2 News crew broadcasted live from the event while on stage KBOI2 Sports Director Chris Nettleton and WOW 104.3 DJ Jesse James rallied the crowd along with CBH

97.1 ZHT RADIO DJ JESSICA WITH TROY MEYER Home’s Corey Barton, who shared why the event is special for him and his staff who walk and volunteer each year. Salt Lake City had 97.1 ZHT DJ Jessica from the Morning Zoo, who interviewed participants throughout the morning before Utah Voices sang the Star Spangled Banner and Questar’s Tom Jepperson thanked the walkers and also shared why Questar enjoys supporting and volunteering at Walk MS. While participants had until May 27 to turn in final donations, at press time preliminary totals including sponsorships were more than $135,000 for Boise – surpassing the events goal – with close to 2,000 people walking; and $240,000 for Salt Lake City with about 4,000 participants.

MORE WALK MS EVENTS! September 14 - Northern Utah (Ogden) September 21 - Idaho Falls, Twin Falls, and Wood River TEAM BEARDS FOR A CURE SHARES THEIR STORY

10 SUPPORTING THE MISSION

DIY - It’s Fun! What’s DIY Fundraising? It’s Do It Yourself Fundraising where a third-party like you hosts a fundraiser to benefit the Society. DIY events can be small affairs – a bake sale, neighborhood yard sale or dinner party – or bigger fundraisers involving your community. It also can be an event you’re participating in such as a 5K, mud run or marathon. With the Society’s online DIY Fundraising Toolkit, you can easily turn your fundraising idea into a reality. Download the toolkit at tinyurl.com/cyoopub or call us to learn more. Several amazingly creative DIY events from our chapter include:

SWIMMING FOR MS

Utah’s Patrick Dimoh was looking for a way to help his fiancée who has MS. He decided to use one of his favorite activities – swimming – to make a difference. For every $5 donated, he would swim 25 meters (one lap of a standard swimming pool). He raised more than $1,045 and swam 209 laps at his local pool. That’s making a splash!

MS WINE RIDE

Boise’s Mike Cooley of George’s Cycles & Fitness loves cycling! He’s merged this passion

MS CONNECTION: SUMMER 2013 with honoring the memory of a friend who had MS and also helping others he knows with the disease move their lives forward. Mike planned a bike ride and worked with the Chapter staff to set up a fundraising page to give added motivation to every mile people pedal. Join him at this 30-mile ride on August 25 that bases out of Nampa’s beautiful Sawtooth Winery. Visit bikereg.com/Net/18815 to sign up and see his DIY donation page.

BED RACES

John and Judy Fisher know how to put the fun in fundraising! Each year they organize Bed Races that involve teams creatively customizing gurneys and then racing them through the streets of downtown Twin Falls. PJs are optional, but all wear festive attire adding extra zest to the event. Their efforts raise more than $3,500 each year. Join them on June 15. Learn more at facebook.com/ Bed-Racing-For-Multiple-Sclerosis.

MUSIC ABOVE THE BLUE

Audrey D’Orazio started this special evening of local music, auctions and more to support a friend who was diagnosed with MS. She formed a committee – Treasure Valley Battle Against MS – to organize and help promote what has become an annual gala. Last year it raised $8,000 and had great media coverage in the community. Learn more at facebook.com/TVBMS.

MSIDAHO.ORG | MSUTAH.ORG 1-800-344-4867

VOLUNTEER SPOTLIGHT

Behind the Scenes at Bike MS

GARRETT DRIVING THE BIKE MS CREW Garrett Harding first got involved with the Society as a Bike MS cyclist. In 2002, he and several co-workers started a team for the challenge and for the camaraderie. “It sounded like fun,” he said. His reason to be involved changed the more he learned about MS. “At first, it was just a bike ride, but then I found out I had a friend with MS.” The next year, he also started to meet and get to know the Society staff and was asked for his advice on how to make the weekend work better. It was then that he traded in his bike shorts for a volunteer t-shirt and for the last decade has been working behind the scenes to make Bike MS one of the best rides in Utah.

In the months leading up to Bike MS, Garrett and fellow committee members meet regularly after work to help plan, promote, secure the route, and get ready for the big weekend. Garrett also is a manager for Fed-Ex and knows all about organizing and delivering large quantities. While it takes nearly a week to set up the event on-site, he helps to get a semitruck worth of items to the Cache County Fairground and to a dozen rest stops. Garrett also has recruited his friends and co-workers to lend a hand and brings a volunteer team to Bike MS that helps the staff all weekend starting well before the sun rises. “The thing I always remember most about Bike MS is the camaraderie and teamwork each year,” he said. “The sum is bigger than all the parts. One person alone can’t make a difference against this disease or anything. The sum of everyone coming together makes the outcome bigger than what one person can do.” Thank you Garrett for being part of the MS movement!”

HELP MAKE THE MAGIC HAPPEN!

There is still time to volunteer for Bike MS (June 29-30) or take on a volunteer leadership role with one of our various event committees that will start to plan for 2014 events this fall. We are always looking for leaders to help with logistics, community networking, or even lending a talent such as graphic design or photography. Email GetInvolved@nmss.org and join us in one of the best jobs you’ll ever have!

1440 S. Foothill Drive, Suite 200, Salt Lake City, Utah 84108-2354

ONGOING SELF HELP, SUPPORT & SOCIAL GROUPS IDAHO.

Idaho Falls Nampa AM Nampa PM Twin Falls

UTAH

Murray Ogden AM Ogden PM Price Provo St. George West Jordan

2nd Monday 1 p.m. 2nd Saturday 10:30 a.m. 2nd Tuesday 7 p.m. 1st Thursday 6 p.m. 2nd & 4th Saturday 10 a.m. 1st Wednesday 11 a.m. 3rd Tuesday 6:30 p.m. 1st Tuesday 6:30 p.m. Last Wednesday 6:30 p.m 4th Saturday 10 a.m. 2nd Wednesday 7 p.m.

CALENDAR

Educational Events & More More information, as well as additional events, are available online (MSidaho.org or MSutah. org) or by calling 800-344-4867. Learn more and make plans to join us!

EVERY THURSDAY AT NOON Free Gentle Yoga at the University of Utah, SLC

JUNE 4 6

Educational Connections, Pain and Sleep issues, Meridian Sleep Management, West Region Teleconference

12 Walk MS Fundraising Celebration, Boise & SLC 19 Understanding and Managing MS Ed series: Keeping It Together, Boise 27 Adaptive Yoga for all levels, Logan 29-30.Bike MS: Harmons Best Dam Bike Ride!

JULY 17 31

Understanding and Managing MS Ed series: St. Alphonsus Specialist, Boise Everyday Matters, SLC

AUGUST 1 21

Intimacy and Family Planning, West Region Teleconference Understanding and Managing MS Ed series: Research & Treatments, Boise