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winter 2013 Utah-southern idaho chapter

MS Connection Newsletter Resolutions every person should make – newly DIAGNOSED or not

2014 brings new hope, new resolutions As 2013 comes to a close, we eagerly look forward to what advancements 2014 may bring and how we can be ready. Living with MS is a unique experience, whether you are newly diagnosed, have been living with the disease for many years or are working through some of the complications of living with MS, there are ways you can prepare for the year ahead. Many use the start of a new year as an opportunity to make resolutions with the chance of a new beginning. If you have MS or know someone who has been diagnosed with MS, here are three resolutions to consider:

diseases and disabilities. There are a number of things to consider before selecting a health plan. One-to-one help is available from ‘Navigators’ - health insurance counselors offering unbiased information, education and enrollment assistance to consumers at no cost. You can access these tools by visiting www.healthcare.gov, or call 1-800-318-2596.

2014

NEW YEAR AHEAD

Keep Your Records: Having medical records in one location can save you a headache in the event you change health care providers or insurance (see Affordable Care Act information below). For more information about how to consolidate medical records or prepare a medical power of attorney please see page 5. Understand the Affordable Care Act: Learning what has changed and how to navigate through those changes is extremely important, especially as it relates to chronic

Stay or get connected: Being connected is one of the best ways to stay informed. There are many programs designed to help those living with MS, below are a few examples to look into in 2014.

• MS Smart Moves - This is a free nine week program available online. Its goal is to encourage emotional, spiritual and physical wellness, turning simple lifestyle changes into lifelong, healthy habits. Register online by January 6. • Educational Teleconferences - This is a free educational series made available through the collaboration of nine chapters of the National MS Society. You can listen to informative conference calls on a diverse range of topics for people living with MS.

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MS connection: winter 2013

national multiple sclerosis society Utah-Southern Idaho Chapter

Living with MS/Education

Pursuing dreams

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

Multiple sclerosis shouldn’t stand in the way of an education, which is why the National MS Society’s scholarship program exists — to help highly qualified students with MS or students who have a parent with MS achieve their dreams of going to college. Since its creation, the program has continued to grow, and in 2013 nearly $1.2 million was awarded to 679 scholars nationwide.

Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108 Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83705

Connect With Us Online: Like us: facebook.com/ MSutahIdaho Follow us: twitter.com/ cureMSutahIdaho Watch us: youtube.com/ cureMSutahIdaho Join us: MSConnection.org ©2013 National Multiple Sclerosis Society Utah-Southern Idaho Chapter

Kristina J. Pearson, a 2013 recipient in the Utah-Southern Idaho Chapter, said, “Having a mother with progressive MS has had a large impact in my life. I find inspiration from the strength my mother has shown and together as a family, we face the hardships by standing together.” Kristina plans to pursue a career in Elementary Education. Scholarship applications are available now, with a deadline of January 15, 2014. For information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarships.

CONTINUED FROM COVER MSConnection.org – An online community where members discover and share experiences, get tips from experts in the field, join discussions, and more. We would love to hear what other steps you might be taking to prepare for 2014, what resolutions you are making, or how we can be of support to you. Please share with us at utah.idaho@ nmss.org or on our Facebook page at www.facebook.com/ msutahidaho. Happy New Year!


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

president’s message

MS Kills Connections – Connections Kill MS You’ve probably heard the National MS Society talking a lot about connections: “MS Kills Connections – Connections Kill MS.” I love the empowerment that this statement brings. With so much information available at our fingertips today, it’s hard to sort through our best sources to make those connections. I thought I’d share with you a few of my favorites: MSConnection.org is a wonderful social networking site for anyone impacted or interested in MS. When I checked in on this site today I learned new information about MS and employment and how best to tackle reasonable accommodations at work. I also learned more about the impact being felt by those newly diagnosed, and I was able to connect with another MS professional in the field. This is a great site for both getting information and forming connections with others facing similar life experiences. “In the News” on the Society’s website (nationalMSsociety.org) is one of my favorite sites to visit when I’m starting my day. Recently I learned about “5 Myths of MS” and advice offered by credible professionals. I also learned the number of people reported to live with MS has increased by 10% over the last five years. I visit this site regularly to keep

informed on what’s happening in the world of MS research and the information and updates “in the news.” The calendar on our local chapter’s website (MSUtah.org or MSIdaho.org) is full of opportunities. If you haven’t looked at it lately, you should try again. There’s an array of programming in virtually every community of our two states – from education or “Ask the Expert” forums, to exercise classes or social gatherings, to webinars or teleconferences you can connect with from your own home. I hope these are helpful to you, or that you find resources of your own to stay up to date, informed and connected. After all, MS kills connections and connections will kill MS! Annette Royle-Mitchell Chapter President

Annual Celebration with David Osmond on January 25

Join us for an inspirational morning hosted by David Osmond to celebrate the successes of 2013 and help us carry that momentum into 2014. This is our annual meeting of our members (that’s you!) and will be followed by a kick-off for team captains. Register to attend at MSutah.org or MSidaho.org


04 money matters

Finances as a family We share many things with our immediate families – daily routines, vacations, holidays and life milestones. However, many families don’t share one key element of their lives with one another – finances. This could be for any number of reasons. However, a collective understanding of financial matters among all members of the family is beneficial on many fronts. Here are some Do’s and Don’ts when it comes to making financial matters a family affair. DON’T treat it as a taboo subject Bring financial topics up in day-to-day conversation, discuss issues in front of your family, ask them for their input on financial decisions, and share financial articles you’ve read. DO teach children of all ages about finances Start at an early age by discussing ageappropriate financial concepts, such as how to save money in a piggy bank. Build upon these concepts as your children grow. DO share your money journey – the good and the bad When discussing your financial history with family, it is easy to omit the less-than-favorable parts. Stay open and honest and encourage

MS connection: winter 2013

other family members to learn from the full range of your experiences. DO involve the family in philanthropic efforts For many of us, charitable giving is an important element of our financial lives. No matter the size or scale, donating to causes we care about can help illustrate how money can be used as a tool to make the world a better place. DON’T avoid difficult topics Discussions about estate planning can be challenging. Sharing key financial information will serve to reduce fear and uncertainty for all involved and will save confusion, stress and worry in the future should the unthinkable occur. DON’T hesitate to seek professional advice If you feel uncertain about how much you know about financial topics such as budgeting, retirement and investments, reach out to an advisor who can help you better understand. The Society’s Financial Education Partners program offers pro bono financial planning and education to people with special health or financial circumstances. Call 1-800-344-4867 to learn more, or visit www.nationalMSsociety. org/financialplanning. Did you know the Society offers financial assistance to help people with MS who have an urgent need? We may be able to assist with accessibility items, transportation, cooling devices, crisis funding or other emergency items.


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

living with ms

The Trail of Medical Records You are your own health care advocate, and it is important to track and maintain your own medical records and have easy access to them for doctor’s appointments. As a person with MS, not only are you seeing a Neurologist, but you also see your Primary Care Physician, Physical Therapists and other doctors. You likely have records at all of these different offices. In order to keep track of all of this information it is a good idea to keep your own personal health record. Some tips to keep track of all of this are: Ask each office for a copy of your records at each appointment. Keep a diary of all of the medications that you

are taking, and with the unpredictability of MS symptoms, a diary to record any changes you may have experienced since the last visit. This is vital to bring to your appointment with your Neurologist. Try an online electronic health record system like Health Vault by Microsoft. This software program is offered free of charge at www. HealthVault.com. Whether you choose to keep your records manually or electronically, the most important thing is to start now. It will assist you and your loved ones should an emergency arise and makes the Doctor and Health Care Team’s job so much easier!

Medical Power of Attorney - The Facts We may have an illness or occurrence that renders us with the inability to communicate or make sound medical decisions for ourselves. With that possibility we need to choose a trusted family member or friend who could act on our behalf with our best interests in mind. This is referred to as a Medical Power of Attorney. Ask the person if they are willing (and capable) before you designate them as such. You can either hire an attorney to complete the paperwork for you, or most hospitals and clinics have them available if the designee is with you and you can also find a witness to sign. (HIPAA

laws do not allow hospital staff to sign). Taking these steps will ensure that your medical needs and wishes are always taken care of.

Live Fully, Live Well

The Society has traveled to Logan, Tooele, and Ogden presenting tools and ideas to help you and your support partner. Live Fully, Live Well is a program designed to discuss challenges that individuals with MS face. Call 1-800-344-4867 for more information on Live Fully, Live Well.


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MS connection: winter 2013

research

The History of MS Research The National MS Society’s Research Campaign has a long history beginning in 1945, when Sylvia Lawry placed an ad in the NY Times on behalf of her younger brother, Bernard who was diagnosed with the disease. The ad stated “Multiple Sclerosis: Will anyone recovered from it please communicate with patient.” When the more than 50 replies she received were from individuals as desperate as she to find encouraging news about MS, Lawry realized the need for an organized effort to stimulate and finance research into the cure, treatment, and cause of multiple sclerosis. On March 11, 1946, Lawry gathered 20 of the nation’s most prominent research scientists and founded what would become the National MS Society. In 1948 her group, then named the AARMS (Association for the Advancement of Research in MS), became the National MS Society. The Utah-Southern Idaho Chapter of the Society was founded in 1954. This fascinating timeline below shows how far we have come on this journey: 1396 - 1993.....Symptom Management Strategies Only 1993................Betaseron 1995................Copaxone 1996................Avonex 2000................Novantrone 2002................Rebif 2006................Tysabri 2009................Extavia 2010................Gilenya, the first oral disease modifying therapy.

(New Symptom Management Therapies were also approved: Ampyra, Nuedexta, Botox for spasticity.) 2011 ...............Symptom Management Therapy Botox (urinary incontinence) 2012................Aubagio 2013................Tecfidera With other additional MS therapies on the horizon for FDA approval and our pledge to raise $250 million for Research by 2016, our goal is to STOP disease activity and prevent progression, RESTORE lost function and END the disease of MS forever.

Help advance research in a clinical trial

Researchers across the country are searching for people living with MS who are willing to participate in clinical trials of experimental therapies. Clinical trials help to determine whether a new drug is safe and effective. Without people who are willing to serve as volunteers in these studies, we could not look forward to new and better therapies. Some trials also need participants to serve as a control group without a connection to MS, including one at the University of Utah taking place right now!


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

research

Utah-Southern Idaho Chapter Research Projects-New Findings in MS viral genetic material in different types of samples.

The study: John Kriesel, MD, of the

Searching for hints of a possible virus in the brain that may trigger MS

University of Utah School of Medicine researchers are looking for genetic material from viruses in brain and blood samples from individuals with possible early-stage MS to identify a possible trigger of MS.

Background: The cause of MS is unclear,

but one possibility is that a viral infection may trigger the destruction of the myelin coating on nerve fibers in the brain and spinal cord. This “demyelination” is one of the pathological events that occurs in people with MS and it leads to symptoms and disability. Technology has vastly improved scientists’ ability to search for viruses, and a technique called “deep sequencing” can be used to detect

University of Utah School of Medicine, has received a research grant from the National MS Society to search for genetic material from viruses in the brain, blood, and cerebrospinal fluid from 16 people with acute demyelination (myelin destruction that shows up as an attack of neurological symptoms) compared to samples from healthy individuals. Individuals with acute demyelination often have or will go on to develop MS. Studying tissue samples from these individuals maximizes the chance of identifying a virus because their disease is recent or active. What’s next? Results from this project offer the hope of identifying a virus that may trigger or contribute to triggering MS. This could spur new diagnostic strategies, new treatments, and even preventative measures for MS. If you or someone you know has or had a demyelinating disease and a brain biopsy please call 801-587-3831 or contact the investigator, Dr. John Kriesel by email at john.kriesel@hsc. utah.edu. 


08 news

Neck of the Woods Twin Falls

Fourteen people from Magic Valley took part in the Everyday Matters program this fall. During the five-week long workshop participants learned powerful techniques to increase happiness and enhance life satisfaction while living with MS.

University of Utah

The Utah-Southern Idaho Chapter has formed a partnership with the University of Utah School of Nursing Center for Extended Learning. Two Nursing students per year will complete a four semester internship with our chapter, learning about the disease of MS, our programs and services for our clients as well as the role of the MS nurse.

MS connection: winter 2013 work and Sonia used hers to volunteer in the Salt Lake City office. One of Citi’s fundraisers, the “Snack Shack,” raised over $800 by filling a decorated cubicle with treats for sale!

Heber City

Renee Burkley, a local comedian, set up a table at the Heber Valley Medical Center’s Girls’ Night Out event to promote MS awareness in her home community.

Salt Lake City

American Express invited the National MS Society to participate in their annual Charity Fair. Long time American Express employee Bruce Hillary and his friend who lives with MS, Sharyl Prisbrey, helped spread awareness about MS and shared how supporting the Society can help those living with the disease.

Boise

Join Megan Nettleton from our Chapter’s Boise office for the Understanding and Managing MS program at Saint Alphonsus in Boise on December 18 from 6-7pm. There is no topic this month. Instead, it’s a Mingle and Jingle with Megan!

ms smart moves

Roy

Citi awarded Sonia Kunz the Community Involvement Award for her efforts to bring MS awareness to Citi and help employees form a Walk MS team. Citi provides its employees with a paid day off each year to do volunteer

It’s back! This year make your new year’s resolutions include MS Smart Moves. Make goals for your overall wellness, including body, mind and spirit. You can receive the support and inspiration to meet each goal you make in this nine week program. Contact the Chapter to learn more and register by January 6.


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

SUPPORTING THE MISSION

Walk MS and Bike MS Look to 2014 Another incredible year of fundraising is in the books, and with Walk MS raising over $500,000 this year, event participants throughout our chapter raised over $2 million in 2013! Over 500 Teams – old and new - and countless individuals came together in Salt Lake City, Ogden, Logan, Boise, Twin Falls, Idaho Falls, and Wood River to walk or ride with us. We couldn’t be happier with the results or more proud of what our amazing participants and volunteers accomplished. These results are just the inspiration we need – to start planning for next year! January will be here before we know it, and that’s why this is the perfect time to put the 2014 Team Captain Kickoff on your calendars! January 25 – Team Captain Kick Off 9 a.m. - 12 p.m. Salt Lake City – University Guest House Boise – St. Luke’s Meridian This year several new teams participated in Walk MS and Bike MS, started a friendly competition with some of our veteran top fundraisers. We had the great privilege to get to know some of them, like brand new Team Captain, Jacob Pecora. He found success by reaching out to his employer to see if they would support his team in any way – and they matched what his team raised, $4,200!

Piper Wild (right) and team Piper Wild didn’t let geography get in her way as she formed a team for Walk MS. Several people on her team joined as virtual walkers and many of the donations came in from across the country. Her team raised $1,775 and Piper herself earned Elite Feet status. Maybe this is your first year participating and you need help starting a team, or maybe you are looking to increase your fundraising... both are perfect reasons to join us for the Team Captain Kickoff. We are happy to brainstorm with you, or help you host a team kickoff event of your own. It is never too late or too early to start a team and join us for one of our favorite events of the year – Walk MS and Bike MS!

Save The Date!

Join us as a participant, volunteer, committee member or donor at these events in 2014:

Walk MS

St. George - March 22 Boise - April 19 Salt Lake City – April 26 Ogden – Sept. 13 Twin Falls, Idaho Falls, Wood River – Sept. 20

Bike MS

Logan – June 28-29


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MS connection: winter 2013

Log on to nmss.org to see all the ways you can get involved and support the national ms society. Supporting the Mission

Are You a Volunteer?

Volunteers help us expand our reach, visibility and awareness across the 140,000 square miles of our chapter. You can put your passion and skills to work in our office, from your home or at an event. Opportunities exist with programs and services, supporting fundraising or assisting administratively – if you have a desire, we’ll put you to work! Consider helping us help the MS community by donating your time in 2014. Email get.involved@nmss.org with your interests.


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

Supporting the Mission

NOW Campaign update “Research is the most important thing to me, because it could mean that one day, I could wake up, put on my running shoes, and go for a run in the morning air. That is my goal.” That’s the voice of Boise resident, Gordy Myre, as he reflects on the work of the National MS Society. He’s not alone in that sentiment and that’s why the NOW research campaign has set an ambitious goal to raise $250 million for research by 2016. Locally, our chapter hopes to contribute over $3.2 million towards that total. As we wrapped up 2013, we approached the halfway mark, raising over $1.4 million to date – but there is a long

$3.2 million way to go to help people like Gordy. The NOW campaign pursues the most promising research projects all over the world. Recently Dr. Jonah Chan of UCSF was recognized for inventing new technologies to rapidly identify compounds that stimulate the regrowth of the myelin nerve casing damaged in MS. If these types of advancements excite you and bring you hope for a world free of MS, please consider supporting the NOW campaign today with a research restricted gift.

Generous Funders Support Variety of Programs We are grateful to the following foundations and supporters that contributed more than $40,000 in grant awards in 2013: Sorenson Legacy Foundation to help people living with MS maintain and improve their quality of life. George S. & Dolores Doré Eccles Foundation for our Clinical Care Program that helps people living with MS have access to better MS care by providing clinical outreach, education, and resources to a variety of health care professionals. American Express Center for Community Development for our Financial Assistance Program that helps people living with MS

maintain independence, safety, health and quality of life. Herbert I. & Elsa B. Michael Foundation to help people living with MS to proactively manage their disease and its symptoms. Lawrence & Janet Dee Foundation for our MS Scholarship Program. Intermountain Healthcare Community Partner Fund to help enhance the lives of people living with MS along all stages of the disease continuum. If you know of a foundation that may have an interest in supporting the National MS Society, please contact shelly.parker@nmss.org.


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

Ongoing Self Help, Support & Social Groups Idaho

Boise Idaho Falls Nampa AM Nampa PM Twin Falls

utah

Cache Valley Murray Ogden AM Ogden PM Price Provo West Jordan

2nd Thursday 2nd Monday 2nd Saturday 2nd Tuesday 1st Thursday

1 p.m. 1 p.m. 10:30 a.m. 7 p.m. 6 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.

calendar

January

Educational Events & More

6 15 25

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!

December 3 Educational Connections: “CogniFitness” Cognitive Health, Meridian 5 Eating well, Eating Easy Teleconference 10 Depression and MS, Emotional Wellness Teleconference 18 Understanding and Managing MS Ed Series: Mingle and Jingle, Boise

MS Smart Moves, Online Scholarship Applications Due, Online Annual Celebration & Team Captain Kick Off, SLC & Boise

February TBD, Live Fully, Live Well: Fitness, St. George

March 11 Educational Connections: Making Treatment and Lifestyle Decisions, Meridian 12 Educational Connections Sleep/Pain Management, Cedar City 18 Live Fully, Live Well: Fitness, Logan 22 Walk MS, St. George TBD Everyday Matters Series: Tooele


MS Connection - Utah-Southern Idaho - Winter 2013 Edition