MSConnection March-May 2012
Quarterly newsletter of the Utah-Southern Idaho Chapter of the National MS Society.
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 | M A R C H - M AY • 2 0 12 MS AWARENESS WEEK - MARCH 11-18 What Will You Do? This month during MS Awareness Week, people all across the country are connecting with one another to educate and share what MS means to them. They’re raising their voices and turning up the volume on multiple sclerosis, its impact in our community and how people can join the movement. What will you do? MSFACTS • 2.1 million people worldwide have MS and it’s believed 1 in 300 in our area • Utah & Idaho have one of the highest incidence rates • Women are 2-3 times more likely to have MS • Children have MS too; 10,000 documented cases • The Society is one of the largest funders of MS research • We address the challenges of everyone affected by MS “We all can do something big or small in our local communities to grow awareness and when we do it all at once, it will leave an impact,” said Becky Lyttle, vice president of community development. “Together we will strengthen our connections, raise additional support for MS, improve the lives of those impacted, and one day see an end to this disease.” In our chapter, volunteers have been busy planning bold, creative and collaborative awareness projects, including organizing flash mobs; preparing informational tables at schools with the educational “Try on MS” activity; making and distributing orange awareness ribbons to wear all week; securing declarations from public officials; asking local businesses to light-up in orange, display posters or do an awareness activity; making videos about what MS means to them; engaging their Walk MS or Bike MS team; and preparing information to send daily emails during the Week to friends or post via social networks. These are just several of the activities in the works for MS Awareness Week. Please share with us how you are spreading MS awareness this March 11-18 and throughout the year. Email Juliann.Fritz@nmss.org. INSIDE THIS ISSUE Walk MS Page 4 Research Update Page 6-7 Advocacy Page 10 VOLUNTEER Spotlight PAGE 11 LIVING WITH MS Self-Help Groups: You Get What You Give National MS Society self-help groups are founded on the belief that “positive personal change happens through individual efforts with the support of others.” Learning to live well with MS is made easier by connecting with others who are facing similar challenges, and giving and receiving support during difficult times. There are more than 1,600 self-help groups affiliated with the National MS Society. Twelve of them are in the Utah-Southern Idaho Chapter and they offer an excellent opportunity to learn from others who are living with MS. As the saying goes, “You get what you give.” A positive attitude and a willingness to look for solutions creates an uplifting environment for everyone involved. To join or start a self-help group in your area or learn about the many opportunities to connect with others online or by telephone, please contact the Chapter at 800-344-4867. New & Improved! Check-Out the Chapter’s Online Calendar Make sure to visit the Chapter’s updated online calendar. There you will find information about Society programs, educational events sponsored by pharmaceutical companies and activities by other community organizations. We’ve combined them all for one-stop shopping of programs that benefit people living with MS. The calendar is updated regularly, so be sure to check back often. Do you know of a great program going on in your area? We would love to know about it and share it with others. Contact us and we will add it to the calendar! Visit cureMSutah.org or cureMSidaho.org. It stops a guy in Oregon, who’s lost his job and his girlfriend, from wanting to give up. A father in Minnesota shares how he’s feeling MS KILLS CONNECTION > < CONNECTION KILLS MS MSconnection.org 800 -344-4867 President’s Message PuBlication oF the national multiPle scleRosis society utah-southeRn iDaho chaPteR The Power of Connections 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 800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. I recently read a news article about the value of being a “connector.” The article clarified, however, that this is not the same as networking. Connectors actually venture outside their comfort zone and connect with people or make friends to engage and assist one another. It made me think about all the connectors we have in the MS movement. 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. We’re about to start our event season where we have thousands of walkers, cyclists, or runners who connect in their very own communities – their families, neighborhoods, social groups, and workplaces – to raise awareness and funds for the National MS Society. Their ability to connect has a powerful multiplier effect that creates awareness and support for people impacted by MS. 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. We also have an impressive network of mission supporters who volunteer leading self-help groups, or serving on a committee, or becoming the face of the Society in their community as an MS Ambassador. All of these people help the Society identify partners and resources in each of the communities we serve to provide clinical, vocational, physical, and social resources for those living with MS. Our chapter covers more than 140,000 square miles and without our connectors throughout this territory, we would have limited capacity to deliver services. Thanks to those connectors we have thousands of resources to support our work. We are committed to providing support to those affected by MS at any stage of the disease, and in the way they need it. The National MS Society is dedicated to creating a world free of MS. © 2012 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 I hope you’ll watch for the Society’s exciting new campaign: MS Kills Connections <-> Connections Kill MS. We know this is true. If you’re not an MS connector today – call us, we’d love to bring you into our movement. Boise Office << Moving Spring 2012 6901 W. Emerald Street, Suite 207 Boise, ID 83704 Follow us: facebook.com/MSutahIdaho twitter.com/cureMSutahIdaho Annette Royle-Mitchell Chapter President TOLL FREE NUMBER 800 344 4867 | 3 SUPPORTING THE MISSION Walk MS – Walk the Walk Walk the Shops - Have you spread the word at the merchants you visit? Asked if they will hang a poster, display brochures or donate to your cause? (Great question after you’ve just tipped your hairdresser!) Talk the Walk - At work, at school, at social activities, have you mentioned Walk MS or asked others to join or support you? Walk the Walk - Are you prepared for event day? Whether you walk on your own or with the support of others, are you physically ready to cover the distance? Do you have layers ready for our unpredictable weather? Have you thought about how to share your accomplishment and story on event day? Every year you hear about Walk MS, or maybe you even participate (our research shows that approximately 4% of you do) but have you asked yourself how we can make the biggest impact at Walk MS? Walk MS is a tremendous awareness and community event, but it is also a source of revenue that helps the Chapter continue serving people affected by MS – to the tune of approximately $500,000 each year! Walk MS is an inspiring 2-4 hours out of your Saturday morning, but what if we all challenged ourselves to a Walk MS training program? Let’s call it the Walk to the Walk. Step by step there are little things we can all do to leave a big footprint on Walk MS. The beauty of the Walk to the Walk is that participation is open to all – whether you can join us on event day or not, there are steps EACH ONE OF YOU can take to help us make a difference. One by one, step by step, dollar by dollar, let’s all do our part to help create a world free of MS. Register to walk, volunteer or donate today at walkMSutah.org or walkMSidaho.org and help us reach our goal! WALKMS2012 Join us at one of these seven Walk MS events this year. Register today and start making plans for a great Walk MS! Set a Goal! April 21 Boise Can you raise a penny for every one of the 6,600 people acknowledging to us they have MS and using the services of our chapter? What about $300 for the 1 in every 300 people living with MS in our chapter? Set a goal and then head out on your Walk to the Walk. Here are some ideas for the journey: April 28 Salt Lake City September 22 Idaho Falls Twin Falls Wood River Northern Utah – Ogden October 20 Southern Utah – St. George Walk the Block - Have you visited all your neighbors and invited them to join you or asked for support of your fundraising goals? 4 | cureMSutah.org - cureMSidaho.org living with MS MS Smart Moves Begins June 4 Mark your calendars for June 4 and get moving with MS Smart Moves. This nine-week wellness program for individuals with MS is all about adopting a healthier lifestyle. People at all levels of ability can do it so there is no reason not to participate. How does it work? Each day, participants can receive points for healthy activities in the areas of mind, body, and spirit. Example activities include journaling, doing brain exercises like crossword puzzles (mind); eating better, exercising or stretching (body); and socializing with friends or working on a hobby (spirit). Participants receive a weekly email with wellness tips and keep a log of their activities that accumulate points. Each week, the points are submitted to the Chapter. Throughout the nine weeks the points are tallied with an overall winner being announced at the end and awarded a great prize! If your New Year’s resolution has long been forgotten, or you just need a little motivation, MS Smart Moves is a great way to make simple lifestyle changes that can turn into lifelong, healthy habits. If you know others with MS in your area, encourage them to sign-up with you. The extra camaraderie will add to the fun! As one participant said, “MS Smart Moves helped me stay motivated. I made a few pretty simple changes and they really made a difference.” Therapeutic Updates in Multiple Sclerosis Learning about Multiple Sclerosis (MS) is essential to managing its symptoms. Join us as MS specialists present the science behind MS, current therapies, and insight into managing the disease. Wednesday, March 7, 2012 Registration: 6:30pm–7:00pm Program: 7:00pm–9:00pm The Little America Hotel 500 South Main Street Salt Lake City, UT 84101 Featuring: John F. Foley, MD Director, Rocky Mountain Multiple Sclerosis Clinic Vita Kaplan, MD Rocky Mountain MS Clinic MSActiveSource is a registered trademark of Biogen Idec. This program is sponsored by Biogen Idec and Elan Pharmaceuticals, Inc. ©2010 Biogen Idec. All rights reserved 0-3639-03 TOLL FREE NUMBER 800 344 4867 | 5 RESEARCH UTAH BASED Research to Help Diagnose MS The Society’s Fast Forward, LLC recently announced a $622,000 pledge for ongoing research by the University of Utah Clinical Neurosciences Center and Lineagen, Inc., a molecular diagnostic company. The research, aimed at developing a bloodbased test to diagnose MS, involves studying specific blood proteins or antibodies in spinal fluid. science advisor and co-founder, to collaborate utilizing genetic data and innovative technology. The grant enables John Rose, MD, leading clinical MS researcher at the Neurosciences Center, and Mark Leppert, PhD, professor of human genetics at the University of Utah and Lineagen’s chief Patients would greatly benefit if clinicians were able to distinguish MS from other neurological disorders and provide targeted and appropriate treatment management. The test being The researchers hope to be able to use the test to predict disease severity and course in an individual. Development of a blood-based test would facilitate identifying the best specific treatment to improve quality of life for a person living with MS. researched would allow physicians to quickly rule out other neurological disorders, determine if a patient has MS, identify disease progression, and weigh appropriate therapies. An integral part of the Society’s comprehensive approach to MS research and treatment, Fast Forward, LLC was founded in 2007 as a not-for-profit organization, focused on speeding promising research discoveries into commercial drug development. Learn more about ongoing research funded by Fast Forward at fastforward.org. Researchers identified 52 MS genes In the largest MS genetics study ever, researchers have documented 29 new genetic variants associated with MS, and confirmed 23 others previously implicated in the disease. Most of the genes were related to immune function, and more than a third have already been linked to autoimmune diseases. A large number were related to T-cell function; T cells, a type of white blood cell, play a major role in the immune system’s attack against the nervous system in MS. Also, two genes linked to vitamin D were found: research increasingly suggests that low vitamin D levels are a risk factor for developing MS. (The Society is funding a new clinical trial of vitamin D supplementation.) The study, a collaboration between the International MS Genetics Consortium and the Wellcome Trust Case Control Consortium 2, was published in the August 11, 2011, issue of Nature, and involved nearly 10,000 people with MS and more than 17,000 who 6 | do not have the disease. While the results of genetics studies haven’t so far resulted in the ability to do individual genetic counseling, these and further findings should help uncover what causes MS and improve treatments. The Society is funding a second large study to confirm and expand these results. cureMSutah.org - cureMSidaho.org RESEARCH New MS therapy moves forward Bone health may begin early The first phase III study of alemtuzumab (proposed brand name Lemtrada) for relapsing-remitting MS found that the drug met one of two primary endpoints. Researchers found that people treated with the drug had 55% fewer relapses over two years compared to those taking the interferon Rebif. However, results of the trial’s other goal, to delay disability, were not statistically better than Rebif. The study, called CARE-MS I, involved 581 people with relapsing-remitting MS. Another trial, called CAREMS II, is still underway. People with MS have long been known to be at risk for bone loss, but a study published in the July 12, 2011, issue of Neurology suggests that it can occur very early, even before MS has been diagnosed. Alemtuzumab is a monoclonal antibody that attacks the cells in the immune system that contribute to myelin damage. It is presently approved by the FDA to treat B-cell chronic lymphocytic leukemia. Sanofi and Genzyme, the drug’s sponsors, plan to seek approval of this intravenous drug for MS in the U.S. this year. In June 2010, the FDA designated alemtuzumab a “Fast Track Product,” which should expedite its future review after results of the phase III trials are submitted. According to the study, low bone mass is more widespread among people newly diagnosed with MS, or those with clinically isolated syndrome (or CIS, a single episode of MS-like symptoms), than among people without MS. Study researchers measured bone density in 99 people newly diagnosed with MS or CIS, compared to 159 people without MS. More than half of the people with MS or CIS had low bone mass, compared to 37% of control subjects. Previously, scientists had speculated that people with MS are at greater risk of low bone density and broken bones due to factors such as lack of exercise stemming from mobility issues, medications or low levels of vitamin D (which plays a significant role in building bone). The researchers suggested that even early in MS, people should pay attention to good bone health by getting adequate vitamin D and calcium, as well as by performing weight-bearing activities. For more ideas on promoting bone health, go to nationalMSsociety.org and search for “You Can Build Healthier Bones.” MSNEWS Are you in the loop? For the latest information on MS research, visit nationalMSsociety. org/research. You also can have the latest news delivered to your inbox by going to nationalMSsociety.org/signup. The Society recently launched a blog that is regularly updated. Join the conversation at blog.nationalMSsociety.org, and connect with people with MS, the people who care about them and MS experts. TOLL FREE NUMBER 800 344 4867 | 7 8 | cureMSutah.org - cureMSidaho.org NEWS your neck of the woods draper What good things are happening in your area? We want to know about it. Please share your good news with Juliann.Fritz@nmss.org. Nationwide Sam’s Club has picked the Society as its charity of choice. All throughout February, the 9 Sam’s Clubs in our chapter were busy fundraising and raising awareness. They created awareness ribbons, hosted informational tables in front of their stores, had a treadmill walking contest and other fun programs. Who saw their Sam’s Club supporting the Society? Boise Students from Boise State University’s Service Learning Thank you Mountain America! program are working with the Chapter to increase MS awareness. The students have been busy planning an on-campus MS Awareness Week activity and forming a Walk MS team! Boise & Salt Lake City MS activists and volunteers gathered at each state capitol at the end of February to meet and share their MS story with state representatives. eBay’s local office honored the Chapter as one of their Community Champions at a special luncheon, but we think they’re the champions. Last year they formed teams for Walk MS, Bike MS and MuckRuckus MS, volunteered and also gave a grant for our scholarship program. South Jordan Mountain America Credit Union presented the Chapter with a check for $17,800. The funds were raised by an employeedriven program that included selling chocolates, “buying” dress down days in the office, hosting a silent auction and more. Now that’s teamwork! Welcome Sarah Foltman Sarah Foltman, director of donor and corporate development for St. Luke’s Health Foundation, was elected to the Chapter’s Board of Trustees at the Annual Meeting on January 19, 2012. “Sarah’s expertise in development and involvement in the Boise community are great additions to our organization,” said Chapter President Annette Royle-Mitchell. “She brings a sincere desire to help people and help them move their lives forward. We are honored to have her join us in our efforts to create a world free of MS.” Foltman has participated in Walk MS Boise with her team, MS. Moxie. “It is symbolic of how I try to manage and live with my diagnosis; with courage, aggressiveness, and a little moxie,” she said when explaining the name of her team. She also has been involved with the Walk MS Committee that is currently finalizing plans for the April 21 event at Boise’s Julia Davis Park. She is quite knowledgeable about the services of the Society, having reached out for information and assistance when she was first diagnosed with MS in 2004. The Chapter’s board is responsible for overseeing the business affairs of the Chapter to ensure activities support the Society’s mission. It is comprised of a mix of business and community leaders, as well as research and medical experts. A full list of members can be found on our website in the “About the Chapter” section. TOLL FREE NUMBER 800 344 4867 | 9 advocacy MS Activists Visit Capitol Hill avenue of important funding is the Congressionally Directed Medical Research Program (CDMRP) within the Department of Defense. The CDMRP is a peerreviewed program that funds high-risk, high-reward research. We will be asking Congress to support a $15 million appropriation to this program for MS research. Over the past four federal funding cycles, approximately $17 million has been allocated to MS research in the CDMRP. Lifespan Respite Care Act MS activists from around the country, including staff and volunteers from our chapter, are storming the halls of Capitol Hill on March 5-7 for the National MS Society’s annual Public Policy Conference in Washington, DC. They are there to personally deliver a powerful message – the importance of both federal funding for MS research and the Lifespan Respite Care Act. In addition, activists will be asking Congress to provide $50 million this year for the Lifespan Respite Care Program (LRCP). While the LRCP offers great promise to people living with MS and their families, it has been woefully underfunded. The law was authorized at nearly $200 million over five years, with just $7.5 million actually appropriated. The Lifespan Respite Care Program (LRCP) provides competitive grants to state agencies working in concert with Aging and Disability Resource Centers and non-profit state respite coalitions or organizations to make quality respite available and accessible to family caregivers through the establishment or enhancement of State Lifespan Respite Systems. Utah received one of these grants in the amount of $188,000. While that is a great start, $50 million for the Lifespan Respite Care Program in FY 2012 would allow all states to meaningfully implement Lifespan Respite and be able to demonstrate success, better supporting our nation’s 65 million family caregivers. Federally Funded Research The National Institutes of Health (NIH) is the country’s premier institution for medical research and the single largest source of biomedical research funding in the world. The NIH conducts and sponsors a majority of the MS-related research carried out in the United States. We will be urging Congress to provide $35 billion to the NIH in fiscal year 2012, an increase of nearly $5 billion over FY11. Another 10 | YOU CAN HELP Visit nationalMSsociety.org/advocacy for more information on these important issues, to sign-up for Advocacy eNews, and also on how to contact your legislators to ask them for their support on these critical issues. cureMSutah.org - cureMSidaho.org Volunteer SUSAN MILLER Finding Friendship & Personal Growth By Volunteering push me toward the Society,” she said, a decision that changed her life for the better. “If she hadn’t pushed me, I wouldn’t be doing what I am doing today.” Miller began her Society involvement by joining a support group and became close friends with Dr. Ritalinda Lee, a current board member at the AlabamaMississippi Chapter. Dr. Lee said Miller is extraordinarily welcoming and “you trust her immediately.” Miller (left) and Dr. Lee are supportive friends Susan Miller was in Salt Lake City when she was diagnosed with MS 10 years ago. Her initial experience was not unfamiliar to many people who are newly diagnosed. She found herself facing a bleak outlook with a disease that many told her would leave her unable to do anything. “I lost a job that I was really good at and that I loved,” she said. When she moved to Alabama a year later, a drug representative encouraged her to get involved with the National MS Society. It was then that Miller’s negative outlook on MS began to turn around. “I had someone GIVE US A CALL The Society can provide information and assistance on a wide variety of issues. There are MS Navigators ready and willing to help. Did you know we can help with these things? • • • • • Choosing the best Medicare plan for you Locating a neurologist in your community Answering questions about disclosing your MS to your employer Free assistance with financial planning Help paying for your wellness program Contact us today at 800-344-4867 (option 1) to speak to an MS Navigator. When Miller moved to Idaho Falls, the Boise Office, having heard about the impact she made in Alabama, asked her to get involved with Walk MS and start a daytime self-help group. Miller has organized the Walk for two years, and leads a growing and active group that averages 15 people per meeting. She stays busy with both pursuits as well as with her family and friends who are far and near. Miller advises newly diagnosed people and those who have had a negative outlook on their diagnosis to get involved by volunteering at the Society. “You kind of lose everything,” she said, but when you get involved in the community, at events, or from home, “you have a purpose again.” She appreciates the support she has received from the Society and said, “I want to give back for what I got.” GETINVOLVED Volunteer at an event by contacting GetInvolved@nmss.org April 21 Walk MS Boise April 28 Walk MS Salt Lake City June 22-24 Bike MS Utah July 28 MuckRuckus MS TOLL FREE NUMBER 800 344 4867 | 11 6364 S. Highland Drive, Suite 101 Salt Lake City, UT 84121 Join us on Facebook MSutahIdaho Your MSConnection HAS ARRIVED calendar @ A Glance New programs are always being added and many require advance registration. Please check the Chapter’s online calendar (cureMSutah.org or cureMSidaho.org) or call 800-344-4867 for more information and to RSVP. March 11-18 MS Awareness Week 13 Financial Planning Assistance 21 MS Lecture Series: MS 101, Boise 27 Chili’s Give Back Day, St George 29 Improving Quality of Life Series: Fighting Fatigue, SLC April (con’t) 26 Improving Quality of Life Series: Improving Your Quality of Life with MS, SLC 28 Walk MS Salt Lake City * Additional Walk MS events in Sept. & Oct. May 8 Financial Planning Assistance 10 Getting There: Staying April Mobile with MS, St. George 10 Financial Planning 16 MS Lecture Series: Assistance Navigating the System, 18 MS Lecture Series: Adaptive Boise Equipment, Boise 17 Improving Quality of Life 21 Walk MS Boise Series: MS and mobility- Adaptive Devices, SLC May (con’t) TBD Research Symposium 30 World MS Day June 20 23-24 MS Lecture Series: Pharmacological Management of MS, Boise Bike MS Utah: Harmons Best Dam Bike Ride, Logan ongoing M, W, F WRAP MS Exercise Group, University of Utah T MS Exercise Group, Orem Sports Medicine T, TH MS Aquatics Class West Boise YMCA