MS Connection Fall 2013 by NMSS Utah-Southern Idaho Chapter

fall 2013 Utah-southern idaho chapter

MS Connection Newsletter university of utah to head data center

Society Commits $2.5 Million to Support Pediatric MS country to collect and analyze the data, we are The National MS Society announced a new, making headway in solving the MS puzzle.” three-year funding commitment of $2.5 million for the Network of Pediatric MS The NPMSC was launched with Society Centers (NPMSC), which includes nine clinical funding in 2006 to set the standard for pediatric centers and the University of Utah as the Data MS care, educate the medical community Coordinating and Analysis Center. Beginning about this underserved population, and create July 1, 2013, funding for the network will the framework to conduct critical research — continue to both to understand provide essential childhood MS and to infrastructure to unlock the mysteries facilitate research, of MS in adults. This including searching initiative laid the for the cause of groundwork for current MS by studying studies by the NPMSC risk factors for the to measure clinical and disease in children, cognitive manifestations close to the time of early-onset MS, and of exposure. This track environmental and support for data genetic triggering. In coordination contrast to adult MS, can be leveraged pediatric MS appears to answer other to have a narrower important research Boise Walk MS participant Andrea Varela is one of over window of onset with questions to advance 10,000 documented cases of pediatric MS more rapid and pervasive understanding of the cognitive symptoms, which need to be better disease in this most vulnerable group. understood if effective treatments are to be provided. “We are grateful for the National MS Society’s commitment to our important research,” said “This investment provides the infrastructure and T. Charles Casper, Ph. D, biostatistician and research support needed to keep this unique assistant professor of pediatrics at the University network — with the largest group of of Utah. “By working closely with the Society CONTINUED on page 3 and with all the pediatric centers around the

MS connection: fall 2013

national multiple sclerosis society Utah-Southern Idaho Chapter 1-800-344-4867 utah.idaho@nmss.org Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108 Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83704

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President’s message

Season of Change for Progressive MS Welcome Fall! For me fall is the season of change and of thanks, and there is so much to be thankful for in the progress being made to create a world free of MS. We know exciting advancements are being made to stop MS from progressing in relapsing forms of the disease – including the release just a few months ago of our tenth disease modifying therapy. But, we also want to know there are resources for those being diagnosed with progressive forms of multiple sclerosis. One of the areas I’m really excited about is the creation of the International Progressive MS Collaborative. Until recently there have been few resources and little hope for such a diagnosis. But this year the Society was instrumental in bringing together over 170 scientists from around the world to form a collaborative to establish a global research agenda for progressive MS. Leading experts across a variety of research areas affirmed the importance of working together globally to drive advances in treating progressive MS, as well as a shared commitment that such an investment can yield the results urgently needed by those living with the disease. Increased attention will speed efforts. So the International MS Collaborative has formed and is officially off and running. I have great hope for what we will do together with our global colleagues. This progress isn’t possible without the commitment of hundreds of thousands of people who want to do something about MS – our fundraisers, volunteers, and champions who inspirationally keep our mission moving forward. With gratitude I thank you, and with hope I look toward our future of a world free of MS.

Annette Royle-Mitchell Chapter President

CONTINUED FROM COVER

support for Pediatric MS well-characterized pediatric MS cases in the world — moving forward,” said Dr. Timothy Coetzee, National MS Society chief research officer. “Driving research to improve the care of children affected by MS and determining what triggers this disease is part of our commitment to all people living with MS.” The Society’s renewed investment supports research activities of the individual centers and the University of Utah Data Coordinating and Analysis Center, which is responsible for patient registry and center collaboration. It also gives NPMSC members — University of Alabama at Birmingham, Children’s Hospital Boston, Loma Linda University, Massachusetts General Hospital, Mayo Clinic College of Medicine, State University of New York at Buffalo, Stony Brook University Medical Center, Texas Children’s Hospital and University of California San Francisco — the chance to leverage additional funding sources for specific research questions.

MS connection: fall 2013

living with ms

Making Health Insurance Choices Starting October 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act (ACA)—begins enrollment for coverage to begin January 1, 2014.

and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and cover preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions.

The Web-based Health Insurance Marketplaces, (sometimes called ‘exchanges’) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education

All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1 at www.healthcare.gov. Questions can also be answered by calling the Society at 1-800-3444867 or visit www.nationalMSsociety.org/ ACAkickin for more information.

living with ms

Making Treatment and Lifestyle Decisions

People living with multiple sclerosis and their families now have more tools available to them than ever before, including 10 diseasemodifying treatments, many symptommanagement strategies and a spectrum of lifestyle-related options that can improve quality of life. However, making choices about which tools to pursue can be a complicated and emotional process, and it’s not the same for any two people.

Learn about the factors you should consider when making your own treatment and lifestyle decisions. Call 1-800-344-4867 to request the DVD and companion book, Making Treatment and Lifestyle Decisions: Thinking Clearly About Benefits and Risks, now available in Spanish and English through the Society’s North American Education Program.

msidaho.org | msutah.org 1-800-344-4867

living with ms

Everyday Matters Debuts in Twin Falls

The UtahSouthern Idaho Chapter will be hosting Everyday Matters in Twin Falls this October. This 5-week long program focuses on living your best life with MS through positive psychology. Participants from the pilot program in Salt Lake City earlier this summer learned quickly just how powerful these principles are. There are 15 spaces available and participants are asked to commit to attending for 2 hours once a week. Everyday Matters was developed with help from Shawn Achor, author of Happiness Advantage. Participants will receive a copy of his book to use as a guidepost throughout the program. If you are interested in learning more about how to live a better, fuller life while dealing with the challenges of MS, please consider joining us for this program. Those interested may contact Mykenzie Hydo by calling (801) 424-0113 ext. 31108 or sending an email to mykenzie.hydo@nmss.org.

living with ms

Free from Falls To prevent slips, trips and falls, always be aware of where you are going, and pay attention to your walking surface. If you do happen to fall, follow these steps: • Before you get back up, take inventory of your body. • Relax for a minute to get over the shock of falling, and don’t get back up until you feel better. • If you think you may be injured, don’t get up, and ask someone to call 911. • Stay in control; well-meaning bystanders may rush to your side to help, and may rush to get you upright. • Always inform your doctor of the fall. The role of exercise can help decrease slips, trips and falls by increasing endurance, muscle strength, range of motion, flexibility and an overall feeling of wellbeing. It also decreases feelings of fatigue and feelings of fear and depression. For more information on how to become free from falls, contact our MS navigator for a Minimizing Your Risk of Falls DVD and brochure at 1-800 FIGHT MS (1-800-344 4867).

06 research

Focus on MS Research A joint meeting held May 29 to June 1 by the Consortium of Multiple Sclerosis Centers (CMSC) and the Americas Committee on Treatment and Research in Multiple Sclerosis (ACTRIMS) showcased the latest directions in MS research. Featured here is a selection from more than 200 presentations on research seeking to stop MS in its tracks, restore function to those who have MS and to end the disease forever.

Stop MS

Researchers at the Colorado Blood Cancer Institute in Denver reported two-year results on a study following 24 people with highly active relapsing-remitting MS who were treated with bone marrow transplantation. Both relapses and disease activity observed on MRI scans were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and benefits of this experimental procedure for people with MS. A study at the University of California, Los Angeles, tested whether male and female sex

MS connection: fall 2013

chromosomes influence the response of the nervous system to injury. In female mice genetically engineered to express the male (XY) or female (XX) chromosome, XY mice experienced a more severe MS-like disease. However, immune responses did not differ. If confirmed in further studies, such findings may help to explain why MS progression occurs faster in men, even though MS is more common in women.

Restore: Rehabilitation

Three separate studies reported results on falling issues. • Debra Frankel, vice president Programs, Services and Clinical Care at the Society, reported that participants in the Society’s Free from Falls program improved in balance and walking, and the psychological impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-3444867. • At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of

msidaho.org | msutah.org 1-800-344-4867

medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect falls risk, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.

Restore: Repair

Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.

End MS

A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/Latinos living with MS, visit mueveteMS.org.

A study at University of Utah, Salt Lake City, using a new technique called â&#x20AC;&#x153;deep sequencing,â&#x20AC;? found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. To read more about the joint meeting and other recent MS research visit www. nationalMSsociety.org/research or sign up at www.nationalMSsociety.org/signup to have MS eNews delivered monthly to your inbox.

Support MS Research NOW The No Opportunity Wasted campaign (NOW) aims to raise $250 million for research by 2016. The Utah-Southern Idaho Chapter has committed to raising $3.2 million and we just surpassed the $1.44 million mark. If you have questions about how to join this campaign please email becky.lyttle@nmss.org.

08 fun chapter happenings in your

Neck of the Woods A collection of shining moments from throughout our chapter. Please share your good news by emailing utah.idaho@nmss.org

Meridian The third installments of our new program, Educational Connections, will be held on Tuesday, December 3, at St. Luke’s in Meridian from 6-7 p.m. Join us to learn about how to improve your cognition.

Pleasant View It’s never too early to start fundraising for a cure. Abby Kirkham and Abbie Lindhardt held a bake sale in honor of their family members with MS and raised $108 in just 3 hours!

MS connection: fall 2013

pedaled 30 miles to support MS, followed by a catered lunch, wine tasting, and live music. Their efforts raised over $7,000 for the Society.

Eagle Mountain

Too many causes, not enough time? The White family had this problem and tackled it by planning a golf tournament to benefit four different charities important to them: MS, the Starlight Program, Hirsche Smiles Foundation and the Boys & Girls Club!

SALT LAKE CITY

A group of society donors gathered at the University of Utah to learn about societyfunded research, and many were recognized with a special pin for their contributions to the NOW research campaign.

Chapter Wide

Through our Care Management and Financial Assistance programs we were able to provide Certified Nursing Assistance for a client who found herself in need due to her primary caregiver needing surgery. This was made possible by a volunteer who provided referrals for additional respite care within the area of the client.

ANNUAL MEETING

Nampa George’s Cycles hosted their first MS Wine Ride at the Sawtooth Winery. Over 50 cyclists

In 2014 the Utah-Southern Idaho Chapter will celebrate 60 years since its founding in 1954. The annual meeting will provide a look back and celebration of how far we’ve come. Date and location will be announced soon. If you’d like to receive a special email update with more details, please email utah. idaho@nmss.org or call 1-800-FIGHT MS.

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SUPPORTING THE MISSION

Bike MS tops $1.55 million

month of June and donated all earnings to the National Multiple Sclerosis Society. Icons were also offered at each register during June giving shoppers an opportunity to donate $1 or more when they checkout, and associates organized a kickball tournament and a golf tournament all to raise money for the Society. These efforts combined with their team resulted in a total contribution of $272,000 to the Society to fight MS this year! Thank you to Harmons, all Bike MS riders, volunteers, sponsors and donors for supporting this important fundraising event!

Congratulations to our top Bike MS teams! Bob & Randy Harmon present the Society with a generous check for their 2013 fundraising efforts The 27th annual Bike MS: Harmons Best Dam Bike Ride was a success with 2,600 riders and 150 teams. Forecasted temperatures in the triple digits didn’t deter this crowd, in fact volunteers worked twice as hard to show their appreciation for the extra effort required from our riders. The 2013 event raised $1.55 million to support the Utah-Southern Idaho Chapter and support is still trickling in. Teams raise over 75% of the funds at Bike MS and their efforts didn’t disappoint in 2013. Rookie Team Winco raised $17,500 and veteran Team Harmons took top fundraising honors for the first time with 194 members raising just shy of $118,000. In addition to the team’s phenomenal fundraising, Harmons also sold brats each Friday and Saturday during the

Team Harmons.....................$ 117,928 Team Bad Ass Coffee.............$108,682 Team Brain..............................$45,396 TEAM UHP..........................$43,4472 Team FLH................................$42,735

Walk MS Fall Events

Final numbers for Walk MS in Ogden (September 14) were not available at press time, but it’s not too late to join us September 21 in Twin Falls, Idaho Falls or Wood River to help wrap up a great Walk MS season! If you can’t join us, consider participating as a virtual walker, or make a donation. Fundraising continues through October 21. Help us beat our goals! Walk MS in St. George will take place late March 2014, watch for details soon.

10 supporting the mission

A Continuing Commitment

peach and tom robinson Despite Peach Robinson’s determination that multiple sclerosis would not frame her future, it has – in many positive ways. “Once her diagnosis sank in, Peach sought out as much information as she could,” explains her husband, Tom. “Since there were not many treatments in 1975, Peach turned to the Society for information.” “I first joined a self-help group, and before long my entire family was involved in Walk MS,” Peach remembers. By 1992, the team included Peach and Tom’s three sons along with the couple’s brothers, sisters, aunts, uncles, nieces, nephews, cousins and a grandmother. Peach has continued her support of the Society by serving on her local board of trustees, involving her family in

MS connection: fall 2013 volunteerism and assisting in creating new Walk MS sites. Recently, Peach and Tom decided to create a legacy that would express their family values and continued commitment to finding a cure for MS. In doing so, they joined the Society’s distinguished Lawry Circle, a program that recognizes people who remember the Society in their estate plans through a bequest, gift annuity or other deferred gift. Because the gifts represent an expression of lifetime commitment, the Lawry Circle has no minimum gift level and membership is for life. “The Lawry Circle is the ultimate way to give back and sustain the funding for future researchers and educational programs,” Peach said. “Although there are many worthy organizations out there, the Society is one of the best and is very important to us. Being members of the Lawry Circle means that we are part of the cure, even after our lifetimes.”

stop! restore! end! There has never been a more promising time to intensify your commitment to STOP disease progression, RESTORE lost function and END MS forever. For information on including the National MS Society in your estate plans and becoming a Lawry Circle member, contact Lane Malone, planned giving specialist at lane.malone@ nmss.org or 1-800-923-7727.

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Volunteer spotlight

Ferries Celebrates Nine Years as Society Volunteer

A longtime supporter of multiple sclerosis, Nancy Ferries is entering her ninth year as the volunteer Walk Coordinator for Walk MS in Wood River, Idaho. Nancy’s involvement as a fundraiser began 30 years ago when she and her husband, both avid skiers, participated in their friend Jimmy Huega’s Snow Express fundraiser for what would later become The Jimmie Heuga Center for Multiple Sclerosis. In 1990, Ferries’ stepdaughter, Annie was diagnosed with MS followed by her stepson’s diagnosis in 2006. Shortly thereafter, Nancy

didn’t just ski for MS, but began walking for MS too. Each year, about 120 people support the National MS Society by participating in this 3-mile walk. Annually, Walk MS Wood River raises $25,000 to $35,000. Ferries attributes the impressive amounts raised to the support of the Sun Valley community, their generous donations to participants, and the contributions of local businesses for the raffle held in conjunction with Walk MS. The key to a successful event is growing strong roots in the community. “Become familiar with the town enough to get local community support,” she says. “Start with people with MS to get them involved. They will be your best advocates.” If you’d like to become a Walk MS Coordinator or volunteer for an event, contact the National MS Society Utah-Southern Idaho Chapter at GetInvolved@nmss.org.

get involved! join today!

Nancy Ferries, Walk MS Wood River Volunteer Coordinator and Elite Feet Member

Have you ever thought about serving on a National MS Society Committee? Committee members help in a variety of ways, regardless of where they live. Some roles may include coordinating and planning fundraising events, shaping strategic plans or getting the word out about all of the support available for people affected by MS through outreach and other activities. We’re currently looking for new committee members in a variety of areas. If you’d like more information please email GetInvolved@nmss.org.

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2nd Thursday 1 p.m. 2nd Monday 1 p.m. 2nd Saturday 10:30 a.m. 2nd Tuesday 7 p.m. 2nd Tuesday 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. 2nd Wednesday 7 p.m.

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Educational Events & More

16 Understanding and Managing MS Ed series: Symptom Management, Boise 24 Live Fully, Live Well – Finance, Logan

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!

September 11 18 19

Diet, Exercise and MS, Price Understanding and Managing MS Ed series: Eat Well, Live Well, Be Well, Boise Nutrition Night, St. George

October 1-29 Everyday Matters, Twin Falls 3 “Information on the Affordable Care Act”, West Region Teleconference

Live Fully, Live Well – Fitness, Tooele

November 20

Understanding and Managing MS Ed series: Caring for the Care Partner, Boise

December 3 5 18

Educational Connections, “Cognifitness” - Cognitive Health St. Luke’s, Meridian Nutrition and MS, West Region Teleconference Understanding and Managing MS Ed series: Mingle & Jingle, Boise