SPRING 2015

MS CONNECTION NEWSLETTERWALK MS PROVIDES HOPE, MAKES CONNECTIONS“Sometimes it feels like there is not much you can do to fight MS. But, I’ve found that participating in fundraising events is one way I CAN fight back and bring hope to myself, my family and friends.” This spring will be Anna Figgins’ third year participating at Walk MS with Team MSed Up. Supporting Walk MS doesn’t just bring hope to Anna, the funds raised bring hope to more than 2.3 million people worldwide living with MS. Walk MS raises over $500,000 annually in our chapter, providing critical funds to support research and to connect people affected by MS with the resources they need to live their best life.

Anna, who lives with MS, says, “Participating is empowering. To be surrounded and supported by so many is an emotional high and gives me strength. Besides that, it’s a huge fun party!” Whether you are newly diagnosed or have been living with MS for many years, Walk MS connects people living with MS and those who care about them. “Without MS in my life, I would have missed the opportunity to meet

INSIDE THIS ISSUE

05CHANGE MAKERS

07HAVING A SAY

10RESEARCH

11REACH OUT FOR HELP

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ANNA FIGGINS AND AMANDA LEARY

02 SPRING 2015

PRESIDENT’S MESSAGE

LIVING YOUR BEST LIFEAt the National MS Society, everything we do is to change lives! We are committed to driving solutions for every person impacted by MS, whether that’s research to find a cure or knowledge about what you need to live your best life.

But what does “live your best life” mean? One thing we know for sure is that YOU know what is best for YOU. So, in addition to funding research to find a solution for MS, we’ve also recently gathered 60 wellness experts to discuss

Society programs focusing on diet, exercise and emotional health, identifying knowledge gaps, and ultimately helping us to develop approaches to improving lives. These experts identified six dimensions of wellness, including physical wellness, emotional wellness, occupational,

general, spiritual, social and intellectual wellness. Our dedication to delivering evidence for these will help empower you to make decisions that allow you to live your best life now.

This issue of the MS Connection touches on several of these dimensions and I’m hopeful will be a resource for you and your family. I’d like to hear what “living your best life” means to you so that we can work to incorporate those solutions right here in our community. I hope I’ll hear your thoughts when I see many of you at our Walk MS events in April, or I encourage you to contact me by phone (800-344-4867) or email (annette.royle-mitchell@nmss.org).

We don’t have all the answers just yet, but you can be assured of our commitment to finding solutions and changing lives.

Annette Royle-Mitchell Chapter President

SARAH RINGLING, ANNETTE ROYLE-MITCHELL, KENT PACKER AND JUDY BISHOP

HOW FAR WE’VE COMEAre you interested in reading the 2014 Annual Report? You can download it from our website:

Visit MSutah.org or MSidaho.org

>>About this Chapter

>>Financials

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

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

Boise Office 4696 W. Overland Road Suite 168 Boise, ID 83705

NATIONAL MULTIPLE SCLEROSIS SOCIETY UTAH-SOUTHERN IDAHO CHAPTEROnline or By PhoneMSutah.org / MSidaho.orgutah.idaho@nmss.org1-800-344-4867

and love some of the world’s most amazing warriors.”

Six different Walk MS events will take place in our chapter this year, and we invite you to join us – either in person or as a virtual walker. There is no cost to register and each location offers fully accessible one to three mile routes, with rest stops and support vehicles. Society staff are happy to help you register, navigate the online tools or brainstorm fundraising ideas to make the most of your Walk MS experience. Anna was surprised by the “goodness of those around us who just want to show love and support, boy did it make us feel just that!” Team MSed Up raised money by pre-selling team t-shirts and through a bake sale organized by Anna’s 14-year-old daughter. The bake sale connected the entire neighborhood and engaged a supporter who offered to match everything they raised.

With your support this year, we can exceed

our fundraising goals and contribute more to research than ever before. Hope for a cure is what excites Anna the most as she dreams about that magical day when she can share the news of “Mystery Solved” with her husband and kids and have a cry fest with her co-captain.

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Like us: MSUtahIdaho

Follow us: cureMSUtahIdaho

Watch us: cureMSUtahIdaho

REGISTER TO WALK OR VOLUNTEER TODAY AT WALKMS.ORGBoise – April 18

Salt Lake City – April 25

Ogden - September 12

Twin Falls – September 19

Idaho Falls – September 19

Wood River – September 19

VOLUNTEERS NEEDEDIf you can’t participate in Walk MS, but you still want to help, we need on-site volunteers for our Boise and Salt Lake City April Walks. We are also looking for members to join our Walk MS committees for Fall. Please email Amanda.Savage@nmss.org for questions or sign up on our website.

04 SPRING 2015

HEALTH & WELLNESS

THE MANY FACES OF WELLNESSWellness is traditionally defined as a healthy balance of body, mind and spirit. The National MS Society has expanded those dimensions to also include physical, emotional, social, occupational, spiritual and intellectual. Feeling healthy is a goal for everyone, and achieving wellness is a process that is individualized and life-long that involves making informed lifestyle choices. Although it may be more challenging when faced with a chronic condition like MS, it is not impossible.

Being outdoors and experiencing nature is an excellent way to reduce the stress of everyday life and maintain the various aspects of wellness. However, limited accessibility to beautiful locations in our community may prevent us from traveling to these sites, but that is consistently improving. Harriman State Park in Island Park, Idaho (28 miles south of West Yellowstone; approximately 300 miles from Salt Lake City) recently created the John Muir Interpretive Trail. This 3/4 mile trail is ADA accessible and includes a fishing platform on the river that is also ADA compliant (including wheelchair accessibility.)

The grand opening and dedication of this trail and fishing access will be held June 27, 2015 in honor of the late Joe Tulpinsky, who lived with MS. He and his wife, Linda, chose this site to embrace the beauty of the great outdoors and to increase their quality of life (wellness.)

Harriman State Park provides an accessible option for every BODY to witness the beauty of this country. Go! Enjoy! And allow its beauty and accessibility to help you create that healthy balance of body, mind and spirit you deserve.

LD ARTMAN FISHING ON THE SNAKE RIVER AT HARRIMAN STATE PARK

PHOTO COURTESY OF LINDA SUMMERS (JOE TULPINSKY & LINDA SUMMERS)

05NATIONALMSSOCIETY.ORG | 1-800-344-4867

SUPPORTING THE MISSION

COMMUNITY CHANGE MAKERS SALT LAKE CITY:The Art Access gallery hosted a ceramics exhibit by Ryan Moffett that explores the artist’s personal experience with multiple sclerosis. The exhibit helped to bring awareness about the disease and the Society for all who attended.

ST. GEORGE:Bike MS 2014 Top Fundraiser, Don Ipson, kicked off his fundraising season on March 28th with a classic car rally and cruise.

STANSBURY PARK:On March 13, Tamra Stephenson hosted a Zumbathon to raise money for MS. Tamra is a certified instructor who lives with MS and was eager to put her passion to work for the cure. She is looking forward to expanding her efforts in the future.

TWIN FALLSThe 6th Annual “Bed Racing for Multiple Sclerosis” event is being held Saturday, June 20th, at Noon in Downtown Twin Falls on Main Street N. This fund raising event includes an exciting afternoon of racing beds down

Main Street complete with Chinese fire drills, crazy costumes, decorated beds, and laughter. There will also be a wheelchair obstacle course, weighted one leg race, street volleyball, and a mitten coin grab, all for spectator participation. And don’t miss the prize spinwheel and raffle happening throughout the afternoon.

Want to be involved? Contact Lebron or Jinger at msbedrace@gmail.com for more information. They are looking for race participants, spectators, and event volunteers.

Find on Facebook under Bed Racing for Multiple Sclerosis.

*This is a third-party event and is not hosted by the Chapter

WASHINGTON DC: The Society’s annual Public Policy Conference was held March 9-11, 2015 in Washington, DC. Volunteers and staff activists from each of the National MS Society’s chapters were in attendance including our own Sarah Ringling (ID) and Kent Packer (UT). Sarah and Kent visited the offices of each Congressman from their respective state to share their story about how the support of a bill mandating the tracking of incidence and prevalence of MS, access to complex rehabilitation technology and MS research funding can make a difference in their lives and others living with MS.

WEST VALLEY:Over 177 people donned their orange gear for an MS Orange Out night at the Utah Grizzlies to wrap up MS Awareness Week.

06 SPRING 2015

LIVING WITH MS

NMSS PROGRAMS COMING TO A LOCATION NEAR YOUWe are here to support you! Our chapter is hosting several free programs in your area. So, mark your calendars, and register online at MSutah.org or MSidaho.org and view our calendar or call 800-FIGHT-MS and choose option 1.

MS 101 is designed for people who have been recently diagnosed—but it’s really valuable for anyone who wants to learn more about an MS diagnosis, symptom management, and treatment options. Taught by experienced clinical professionals, MS 101 can be beneficial for anyone living with MS.

• April 14, Draper, UT

Free From Falls is a 3-hour program to teach you how to identify and prevent fall risks. You’ll also get hands-on instruction in fall-prevention exercises from a rehabilitation professional.

• May 16, Park City, UT • May 16, Ketchum, ID • June 6, Twin Falls, ID

Making Treatment and Lifestyle Decisions offers a broad overview of the treatment options available for those living with MS, covering

disease-modifying therapies, and symptom management options and lifestyle choices.

• April 21, Logan, UT • June 2, Meridian, ID

Mood and Cognition in MS presents our growing knowledge about the cognitive and emotional aspects of living with MS. You will come away from this program with practical approaches to managing these aspects of MS so you can live your best life.

• Check Website Calendar for Dates

Rehab for MS Symposium is open to anyone who is in the rehabilitation fields or students interested in these fields: Physical therapy, occupational therapy, exercise physiology, or wellness. Remote participation is also available. For more information: 800-344-4867 or email isabel.gardett@nmss.org.

And don’t forget about the Society’s Telelearning programs (nationalMSsociety.org/telelearning). Upcoming topics include, “Managing MS Bowel and Bladder Symptoms” and “Sex Ed for Grownups: Intimacy in MS.”

FREE JERSEYS FOR CYCLISTS WITH MSWe are pleased to welcome back the “I Ride with MS” program sponsored by Genzyme and MS One to One. If you live with MS and are interesting in riding in Bike MS this year, register at bikeMSutah.org and when asked for your connection to the cause, click “I have MS.” All program recipients will receive a free jersey, exclusive VIP benefits and other perks. Contact amanda.savage@nmss.org with questions.

07NATIONALMSSOCIETY.ORG | 1-800-344-4867

ADVOCACY

HAVING A SAY

08 SPRING 2015

VOLUNTEER

ROY BARTEE, “WHY I CONTINUE TO BE A TEAM CAPTAIN.”National Volunteer Week is April 12-18, 2015, and Roy Bartee, a 27-year volunteer, shares with us his story as a team captain and why it is important to him to continue.

“I rode in my first MS150 in 1988 because of a pamphlet I saw about the ride. My Mom was living with MS since before I was born, so it seemed like a good way for me to participate and show my support for her.

Ten years later, I rode it again, but in Utah. By this time, my Uncle and his wife were both diagnosed with MS. Because I still enjoyed cycling, I signed up, and my tenure as a team captain began.

I am now Captain of my third corporate team. In July of last year, I formed my company and am starting a team from scratch to continue my support.

I’ve stayed involved for 27 years because of my personal connections with MS. I understand that MS is bigger than my family. MS affects the lives of the patients and the lives of those who love and care for them.

I’ve also stayed involved because the world of MS has changed significantly in the last 50

years. When my mom was diagnosed, doctors had no clue what to do. I have seen the world of MS go from having NO disease-modifying medications, to now having many. It gives me hope that we can find a cure in my lifetime.

I continue to be a team captain because I also know that my teams make a difference. We are fundraisers all working toward the same goal. We motivate and challenge each other. It’s very satisfying seeing team members successfully push themselves past perceived limits.

I’ve learned a lot during my tenure as a team captain, like it being our job to inspire and motivate, but it’s NOT our job to do everything. So, find people willing to help and who have the time to be the support you and the team need.

Communicating with team members is as important as recruiting them. Tell them to talk to everyone about the event, explain the ride, the cause, and why they ride. Remember, it’s not a race, and there are mileage options, so anyone at every fitness level is encouraged to participate.

Email your team consistently and include emails with nutrition and training tips, practice ride information, and recognize accomplishments. Motivate them to reach beyond themselves with pep talks of encouragement. Remind them that training, fundraising, and recruiting are three core responsibilities of all team members.

Most importantly, don’t forget why we are doing this. It’s a fun event, but it’s also a fundraising one. There are a lot of tips and tools to help with fundraising, and it isn’t as scary as it seems.”

09NATIONALMSSOCIETY.ORG | 1-800-344-4867

SUPPORTING THE MISSION

A WEEKEND OF DISCOVERY FOR COUPLES Over Valentine’s Day weekend, our Chapter hosted a two-day Relationship Matters workshop for couples living with MS in Salt Lake City. Fifteen couples participated – some who have been together for several years, and others had been together for several decades. The workshop was taught by a local couple’s therapist, Kate Scribner, LCSW, and was based on materials developed by the National MS Society.

During the weekend, couples learned ways to enhance communication in their relationships and improve conflict-resolution skills. For many couples, a highlight of the workshop was the opportunity to break into two groups – one group for partners living with MS and one group for care partners. Each group discussed the challenges they found difficult to bring up with their partners. For many partners, this was a cathartic experience, and they learned that they were not alone in facing similar challenges.

At the close of the workshop, the group decided that they would like to meet again in six to eight weeks to check in with each other to discuss the progress they were making, and any issues that had arisen along the way.

One couple remarked, “We didn’t realize we had so much we could work on to improve

our relationship, and we are excited to get started!” The Chapter will be hosting its second Relationship Matters program at Saint Alphonsus Regional Medical Center (1055 North Curtis Road) in Boise on Saturday, May 2nd from 9:00 a.m. to 4:00 p.m. Breakfast and lunch will be served. Space is limited, so advance registration is required. Please contact Mykenzie Hydo at mykenzie.hydo@nmss.org or 800.344.4867, option 1 to register.

On May 7, Idaho will unite for 24 hours of giving during Idaho Gives. It’s the state’s biggest day of giving, and it’s your chance to make a real impact. All you have to do is point, click, and donate to the MS Society. http://bit.ly/IdahoGives2015

ADVOCACY 101Becoming an MS Activist is a simple way to improve not only your own life, but the lives of others living with MS. Learn about tools and resources to share your story and influence your elected officials to effect real change in public policy. Register at www.nationalMSsociety.org/advocacy101.

SPRING 201510

RESEARCH

RESEARCH ON IMMUNE ACTIVITY IN MSUnderstanding and stopping MS in its tracks requires a better understanding of the role that the immune system plays in this disease. This system is involved both in the inflammatory attacks on myelin and, very possibly, in the injury to axons (the wire-like nerve fibers) that contributes to longer-term disability. Research on the immune system includes studies on:

• Understanding components of the immune system such as T cells, B cells, and antibodies

• Identifying new targets for therapeutic intervention while leaving the rest of the immune system capable of fighting infections

• Identifying substances and processes involved in the injury of axons

• Identifying the body’s natural immune messenger molecules that can either turn on or turn off immune attacks

WE’RE MAKING PROGRESSStudies of the immune system in MS laid the groundwork for every disease-modifying therapy now available, and these studies continue to hold promise for finding ways to

stop MS. Here are reports of recent progress:

DECADES OF BASIC RESEARCH PAY OFF WITH EARLY CLINICAL TRIAL OF IMMUNE THERAPY An international team has reported results of a small, early clinical trial involving 10 people with relapsing or secondary-progressive MS. The trial tested the feasibility and safety of using a patient’s own altered blood cells to reduce immune responses against specific components of myelin, the nerve covering that is a key target of immune attacks in MS. Treatment appeared safe and showed signs of reducing immune responses to myelin, This is one example of how the Society’s long-term investment in basic research that has relevance to MS pays off.

DIETARY SALT MAY STIMULATE ACTIVITY OF KEY IMMUNE CELLS INVOLVED IN MS ATTACKS Three studies suggest that dietary salt can speed the development of an MS-like disease in mice, and provide new insights on immune system activity involved in MS. While more research needs to be done to confirm a role for salt in triggering MS, or to determine whether reducing salt can inhibit MS immune attacks, these studies pinpoint new avenues for strategies that can decrease MS attacks. These studies were the product of a collaborative team effort funded in part by the Society.

Read further about these studies and more, visit http://www.nationalmssociety.org/Research.

NATIONALMSSOCIETY.ORG | 1-800-344-4867 11

LIVING WITH MS

REACH OUT FOR HELPFor Brian Thompson, symptoms of multiple sclerosis were something he ignored as long as he could. Between 2007 and 2009, he experienced two cases of optic neuritis, an inflammation that can cause a complete or partial loss of vision. However, after treatment, he regained his vision completely. “So, I went far too long before getting a diagnosis,” the Burbank, California, resident says.

Thompson’s symptoms slowly progressed over the next three years, and he started experiencing issues with balance, endurance, strength and heat intolerance. “I was at a point where I could no longer disregard these symptoms,” he remembers. Shortly thereafter, he was diagnosed with MS.

“What do I do now?” and “How will my life change?” are just a couple of the questions Thompson had after he received the news. However, at the MS Comprehensive Care Center at the Keck School of Medicine of University of Southern California, Thompson connected with an MS-certified care manager. “She has been an amazing resource,” he says. “She has helped me with everything from filling out paperwork to making sure I ask my neurologist the right questions.”

When Thompson broke his leg after a fall and required in-patient care, the care manager connected him to a local rehabilitation facility and set him up with 72 hours of support for his recovery time at home. The extra support was a relief for Thompson and his girlfriend, Shelli. “Having the help took the burden off us. Sometimes MS becomes the third person in the room. It’s nice to not have to focus on it,” he says.

WE ARE HEREOur MS Navigators help identify solutions and provide access to the resources you are looking for. Call 1-800-344-4867 or contact us online at nationalmssociety.org.

• Find MS specialty care—doctors, counselors, social workers, physical therapists and more

• Get personalized answers about your unique needs, including up-to-date information, referrals and practical resources

• Understand available benefits

BRIAN THOMPSON, DIAGNOSED WITH MS IN 2012

SPRING 2015

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

APRIL14 MS101 – Draper

18 Walk MS - Boise

21 Making Treatment & Lifestyle Decisions: Thinking About Benefit & Risks –Logan

25 Walk MS - SLC

MAY2 Relationship Matters – Boise

12 MS101 – Idaho Falls

16 Free From Falls 1-day – Park City

16 Free From Falls 1-day – Ketchum

17 World MS Day

19 Sex Ed for Grownups – Intimacy & MS*

21 Sex Ed for Grownups – Intimacy & MS*

JUNE2 Making Treatment & Lifestyle Decisions:

Thinking About Benefit & Risks – Meridian

6 Free From Falls 1-Day – Twin Falls

27-28 Bike MS – Logan

* denotes online events

ONGOING SELF-HELP AND SUPPORT GROUPS

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 p.m.West Jordan 2nd Wednesday 7 p.m.

EDUCATIONAL EVENTS AND MORE