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winter 2013 Utah-southern idaho chapter

MS Connection Newsletter

PRESIDENT’S MESSAGE

Taking Action One Step at a Time The old adage “little things mean a lot” is very true. Every day this year, I have witnessed small actions that made an impact. Actions like a newly diagnosed teenager coming through our doors to learn more. Or, the decision an isolated father made to seek help from a friend – my friend – who connected with me. These small victories are happening all around us – people connecting with others and the Society to better face multiple sclerosis and do something about this disease. And, the actions don’t stop there! Our Bike MS and Walk MS participants are a myriad of actions. For example, first time team captain Lenise took action when she decided to lead her team, Gates’ Gears, to raise more

than $6,000. They are our rookie team of the year! Hundreds of teams just like hers also committed to making a difference in 2012 – a difference that helped raise $2.7 million. People also took action by sharing their stories. It may seem small but it drives great awareness, inspiration and connections. Chris Nettleton’s MS diagnosis propelled his co-workers at Boise’s KBOI News to provide live coverage of Walk MS with educational stories throughout the show. And, Olympic hopeful Tom Wallisch shared his Aunt Bonnie’s MS story with media and participated in Walk MS Salt Lake City while wearing ski boots to help people better understand MS symptoms and bring more awareness. Little actions lead to great things, like saving our expense budget over $140,000! Each year various companies and professionals donate products and services for events including equipment from forklifts to horse troughs (really!); morning coffee to fuel cyclists; and President’s Message, continued on page 2

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MS connection: winter 2013

national multiple sclerosis society Utah-Southern Idaho Chapter

President’s Message, continued from page 1 professional services (video production, graphic design, bike repair and advertising). Donations of all sizes prevent us from facing cuts to programs and services that matter most.

1-800-344-4867 utah.idaho@nmss.org Chapter Headquarters 1440 Foothill Drive Suite 200 Salt Lake City, UT 84108

These actions are happening across the nation. They help to build a rallying of support that is bringing additional funds to research – more than $44 million in 2012 ($4.1 million more than last year) – and more people raising their voices to improve public policies like the recent Settlement Agreement on Medicare’s “Improvement Standard”. These accomplishments took many steps, many people taking action large and small.

Boise Office 4696 W. Overland Road Suite 222 Boise, ID 83704

During this season of giving, I will remember that all of these little things count greatly and add up to bigger things because, one-by-one, we are making a difference. I hope you will take action in the new year and join us in our efforts!

Connect With Us Online:

Sincerely, Annette Royle-Mitchelle

Like us: facebook.com/ MSutahIdaho Follow us: twitter.com/ cureMSutahIdaho Watch us: youtube.com/ cureMSutahIdaho Join us: MSConnection.org ©2012 National Multiple Sclerosis Society Utah-Southern Idaho Chapter

Chapter President

Information provided by the Society is based upon professional advice, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned.

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curemsidaho.org | curemsutah.org 1-800-344-4867

WALK MS

Steppin’ Out MS Together This fall, hundreds of Idahoans and Utahns came together and made determined steps towards creating a world free of MS at one of five Walk MS events in our chapter. First-time and veteran walkers hit the trails in Idaho at Idaho Falls, Twin Falls, and Wood River, and also in Utah at Northern Utah (Ogden) and Southern Utah (St. George) Walk MS events. The combined fundraising total surpassed $67,000. Each Walk had its own unique festivities, including kids zones, live music, raffles, and silent auctions. In Wood River even the dogs wagged for Walk MS with a canine version of musical chairs.

2013 EVENTS

Join Us! Team Captain Kick Offs Boise & Salt Lake City – January 19

Team Week February 11-15

women on the move Salt Lake City - February 23

Walk MS Boise – April 20 Salt Lake City – April 27 Idaho Falls, Twin Falls & Wood River – September 21 Northern Utah – TBD Southern Utah - TBD

Bike MS Two legs or four, all made strides at Walk Ms

Logan, Utah – June 29-30

Registration is now open to walk or volunteer on our newly designed websites – walkMSIdaho.org and walkMSutah.org. Check it out!

Additional events are in the planning stages. Please check our website for more information.

04 Living with MS

MS Symptoms and Winter Weather

By Julie Stachowiak, Phd

Most of us with multiple sclerosis are heat intolerant to the point of being unable to function outside during peak summer temperatures. But when I asked people with MS on my blog at ms.about.com what their MS temperature “limits” were, I was surprised when several people said that the cold wasn’t so great for them, either. Many people complained of increased spasticity in cold weather. Readers mentioned that their limbs “felt like wood” or that their joints ached during lower temperatures. A couple of people also mentioned that the MS “hug” could be intolerable in the cold. (The MS hug is the gripping feeling around the torso that is caused by a lesion in the spinal cord that results in spasms in the tiny muscles between the ribs.) I also know that some people with MS tend to feel more fatigued in winter months. This could be an indirect result of coping with some of the symptoms mentioned above. It could also be that the shorter days and limited sunlight exacerbate depression, which can be a symptom of MS. New data is emerging all the time on the role of vitamin D in MS. Perhaps we feel our symptoms more acutely when our vitamin D reserves are at their winter lows, although this hasn’t been confirmed yet by scientific studies. Here are a few tips to help you enjoy the colder

MS connection: winter 2013

months if you are bothered by frigid temperatures. n

Soak up sunshine during the warmest part of a sunny winter day to help your body produce vitamin D. n Don’t overdo the heat. When I get cold, I tend to take really hot showers. Recently, I got dangerously dizzy during one. Remember, extreme heat is not our friend, either. n Warm yourself from the inside. Drink a hot beverage to take the chill off. Like many other situations that we must navigate through with MS, a little strategic planning of winter activities can help you have some control over symptoms. Put some thought into what you enjoy doing in the winter, take a couple more precautions and get the most out of the cold months. Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Manifesto.

Financial Assistance Available MS creates a range of challenges that can result in short-term financial crises, difficulty obtaining critical equipment, challenges with home or auto modifications, and diminished capacity to pay for MS-generated needs. We can help! Applications for assistance are available online or by calling 1-800-344-4867.

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curemsidaho.org | curemsutah.org 1-800-344-4867

Living with ms

Commit to Eat Well Take control of your health, starting with a commitment to eat well. Here are some suggestions for how to do that from the Can Do MS staff and Andrea Glenn, a Society volunteer diagnosed with MS in 2003. n

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Eat three meals every day and always have breakfast. People who skip meals tend to overeat later. Make healthy snacks and meals ahead of time so you don’t give in to temptations. Eat more vegetables and three pieces of fruit every day. Add leafy dark greens to your lunch. Snack on raw fruit and vegetables such as carrots, apples or celery. Be aware of portion size. Many restaurant meals are large enough to feed two people. Take half home for lunch the next day, or split an entrée with someone else. Eat whole grains such as brown rice, whole grain bread and whole grain cereals. Enjoy a couple of low-fat dairy products every day, such as 1% milk or yogurt. Use olive oil or canola oil (in moderation). Read food labels and pay special attention to saturated fats and trans fats. Drink plenty of water—it’s calorie free! Enlist a friend or family member to share your goals for better eating. It helps to be accountable to someone else. Keep a food diary. Writing down every-

thing you eat will help you better evaluate whether you’ve improved your food habits.

nutrition tips for managing fatigue n

Have a small snack every few hours to refuel. Pair a protein (low-fat cheese, 1 tablespoon of peanut butter, handful of almonds) with a fruit.

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Shrink meals and eat more frequently. For example, save half your lunch and eat the rest three hours later.

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A small protein snack in the afternoon, such as a cheese stick or peanut butter, can help you be more alert.

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Avoid large portions and desserts. Both will increase fatigue.

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Avoid too much caffeine. It can lead to restless sleep and increased anxiety.

Visit nationalMSsociety.org/diet for links to recent research, recipes and articles, brochures, videos and more.

MS Smart Moves Starts January 14! The goal of this program is to turn simple lifestyle changes into lifelong, healthy habits. As the new year starts, unite with us as we strive for mind, body and spirit wellness. Make Smart Moves your new year’s goal. Learn more by contacting Chelsey.Banks@nmss.org.

06 research

Understanding Clinical Trials People with multiple sclerosis who participate in clinical trials help make new and better therapies possible. The National MS Society has updated information about ongoing clinical trials for MS at nationalMSsociety.org/2012trials. There, you can download PDFs on the following specific types of clinical trials: n

Trials funded by the National MS Society n Large phase III trials in relapsing-remitting MS n Trials in progressive forms of MS n Trials of symptomatic treatments The U.S. Food and Drug Administration (FDA) requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS. n

Phase I: The first step is to determine safety. In a small number of healthy volunteers or people with MS, researchers investigate how the body reacts to a therapy. n Phase II: If the therapy proves to be safe, studies begin to determine a drug’s effectiveness in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled”—that is,

MS connection: winter 2013

the drug is compared with the standard treatment or a placebo. n Phase III: If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. n Phase IV: These are not required for FDA approval, but might be conducted afterward to assess long-term safety and effectiveness. For more on clinical trials, visit the clinical trials registry created by the National Institutes of Health at clinicaltrials.gov.

A clinical trial glossary

Here are a few commonly used terms in clinical trials.

Blind

A clinical trial is “blind” if participants are unaware whether they are in the experimental or control group.

Control group

In many trials one group of participants is given an experimental drug or treatment, while a control group is given either a standard treatment or a placebo.

Double-blind study

A clinical trial design in which neither participants nor study staff knows which participants are receiving the experimental drug and which are receiving a placebo (or another therapy).

Randomized

A study in which participants are randomly (by chance) assigned to one of two or more treatment groups.

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curemsidaho.org | curemsutah.org 1-800-344-4867

RESEARCH

Society Researchers Honored as Healthcare Heroes Drs. John Rose and Charles Casper, who lead the Society’s MS Pediatric Data and Analysis Center at the University of Utah, were honored with the coveted Innovation in Healthcare recognition by Utah Business magazine at its annual Healthcare Heroes awards luncheon in October. “The work being done by Drs. Rose and Casper

will change how the medical community looks at pediatric MS,” said Chapter President Annette Royle-Mitchell. “We are proud to see them recognized and look forward to what they are able to discover with this important research.” In April 2011, the research team started studying and analyzing data collected from the 10 Pediatric MS Centers of Excellence located throughout the country. They have been instrumental in setting up a centralized data collection system, which includes the first pediatric MS registry in the world. This information will also provide important clues as to how the genes and environment play an important role in MS.

CLINICAL CARE

Learnings from Society Clinical Fellow Dr. Yonnet

The Chapter’s first clinical fellow, Dr. Gael Yonnet, completed his fellowship at the University of Utah this summer. Society Fellowships help to train and retain the next generation of MS experts and seek to improve the quality of care for people living with MS. During his year, Dr. Yonnet worked closely with patients and also focused on several key areas, including a groundbreaking cost analysis of symptomatic therapies that will help doctors provide more affordable choices for medications; furthering the education and discussion on the use of Botox in MS for bladder issues; and promoting quality care for people with MS by presenting at more than 20 professional meetings. “His ability to relate and empathize with patients and address sometimes overlooked discussions relating to managing MS symptoms is what his patients will remember most,” said Chapter Clinical Outreach Manager Jane Bjorklund. “He is a welcomed talent to the MS community and we are grateful for all he contributed to helping people with MS get quality care.” While his fellowship is complete, he was recruited by Wheaton Franciscan Healthcare System in Waterloo, Iowa, to start an MS clinic. Thank you, Dr. Yonnet!

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MS connection: winter 2013

news

BIKE MS

A collection of shining moments from throughout our chapter. Please share your good news with Juliann.Fritz@nmss.org.

Thank you to our more than 2,700 Bike MS cyclists for helping to raise $1.68 million! Every dollar and every mile brought us one pedal closer to a world free of MS.

Neck of the Woods Kaysville

Nine year-old Megan Mathias held a bake sale to raise money in honor of her aunts. She raised $670.20 for her Walk MS team Craven the Cure. That’s some tasty treats!

Logan & Pocatello

The Chapter hosted two Nutrition Nights this past fall. A registered dietician helped people learn easy tips for healthier habits. Check the Chapter’s Calendar online for more educational programs in 2013.

Murray

“MakingSense” is a new group bringing people with MS together for encouragement and support. The group meets 10 a.m. – noon at the Murray Boys & Girls Club the second Saturday of each month.

Salt Lake City

Todd and Pamela Jorgenson hosted their first annual “Peace, Love & Cure MS” poker tournament and raised $1,000. Chapter Trustee Phil McCarthey and his family foundation were honored with the Spirit of Giving Award at the annual Utah Philanthropy Day Luncheon on November 7. The McCarthey family has been involved with the Society for more than three decades. An honor well deserved.

Pedal Power Bike MS: Road, Sweat & Gears • Top Fundraising Team: Allstate-Eric Jeglum, $12,206

• Top Fundraiser: Rex Parker, $7,745

Bike MS: Harmons Best Dam Bike Ride • Top Fundraising Team: Bad Ass Coffee, $117,057

• Top Fundraisers (tie): Willie & Linda Blocker, $30,000 each • Highest Raised Average: Team FLH, $3,204/per rider • Top Rookie Team: Gates’ Gears, $6,026 • Mini & Mighty Team (team with less than 20): Team FLH, $54,471 • Crank it Up: Bad Ass Coffee, $31,097 increase over year prior • Largest Team: Team Harmons, 169 riders We are already counting down to the best weekend of summer 2013 – are you? Registration is open at bikeMS.org. We hope to see you all again next year.

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ADVOCACY

Federal Successes in 2012 Together on the frontline, the Society and MS activists nationwide connect with decision makers, work with partners and create change to impact the greatest number of people possible. As a united MS Movement, we want to do something about MS now. In 2012, MS activists showed what’s possible with several federal successes! n

Added an aggressive form of MS to qualify for the “Compassionate Allowances Initiative” at the Social Security Administration. This will allow people with MS who qualify to receive Social Security Disability Insurance (SSDI) more quickly than the average applicant. n

Established new federal funding avenues that have yielded $20+ million for MS research. n

Introduced legislation that would allow Medicare Part D to cover off-label drugs for people living with MS. n

Promoted awareness and importance of a wide range of caregiving initiatives for the people who care for people with MS. This included advocating for increased funding for and reauthorization of the Lifespan Respite Care Program, which improves access to quality respite for family caregivers, and supporting the introduction of legislation to support Adult Day Achievement Centers.

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Promoted increased awareness of MS on Capitol Hill by hosting legislative briefings and national recognition of MS Awareness Week. n

Formed and continued to grow the first Congressional MS Caucus in the U.S. Senate and the House of Representatives. More than 25 percent of representatives in both chambers have shown their commitment to developing policy solutions for people with MS by joining the Caucus.

BE AN MS ACTIVIST

New legislative sessions start in January. Make a New Year’s resolution to get more involved in MS advocacy at the state or federal level by learning more about public policy issues. Start online at nationalMSsociety.org/advocacy or call us at 1-800-344-4867.

2013 Sessions Begin: U.S. Congress - January 3 Idaho Legislature - January 7 Utah Legislature - January 28

10 Ways to Give

Gifts that Leave an Impression With the holidays upon us, you may be scratching your head thinking of gift ideas. How do you wrap and deliver all of the gifts in a timely fashion? Are people asking you what you want? Keep it simple but yet special! Celebrate the giving season with a donation to the National MS Society Utah-Southern Idaho Chapter and help improve the lives of thousands impacted by MS. Here are several ABCs of different ways you can share the holiday spirit:

A General Donation: Make a one-time contri-

bution, multi-year pledge, stock transfer, or year-end gift. It’s easy to donate online!

Be Part of an Event:

Form a team, register or sponsor a participant for Bike MS or Walk MS in 2013. Or attend a gala event like Salt Lake City’s Women on the Move Luncheon (Sat., February 23).

Contribute to Research:

Support the NOW Research Campaign targeted on stopping the disease, restoring what’s been lost, and ending MS forever.

MS connection: winter 2013

Dedicated Gifts:

Make a gift to a specific program such as financial assistance, scholarships, educational programs, or targeted research initiatives.

Employers Help via Workplace Giving:

Sign up to make a regular donation to the Society through automatic payroll deductions. Find out if your company participates. They might even match your gift!

Future Plans:

Designate a gift through a bequest, charitable gift annuity, charitable trust, or other estate plan.

Golden Circle:

A key to moving our mission forward is this committed group of donors ($1,000 or more/annually) who are invited to behind-the-scenes research and educational programs with the Chapter and national leadership.

Honor Someone with a Tribute or Memorial Gift: In lieu of gifts, ask for a

donation to your charity of choice, the Society! Gifts in memory or honor of a special person in your life also leave a lasting memory. This is easy to set up online at cureMSutah.org or cureMSidaho.org. MS stops people from moving, but your gift will keep us moving forward to a world free of MS. For more information, please contact Shelly.Parker@nmss.org or visit us online.

curemsidaho.org | curemsutah.org 1-800-344-4867

Volunteer spotlight

Power of a Positive Attitude

For Debbie Ned, a positive attitude can make all the difference. When she first started experiencing symptoms in 2009, she was told she either had MS or a brain tumor. When her MS diagnosis was confirmed, she was relieved. “I know there is a reason I have MS, and a purpose for all of this. And I will find out what it is now or I’ll find out later. Either way, I want to do what I can.”

11 MS made her a perfect fit for the position. Although she hasn’t been an Ambassador for long, Debbie is making an impact in her Nampa, Idaho community. This fall, Debbie spoke at an educational program at St. Luke’s Elks-Rehab and she and her family hosted MS informational tables at health fairs in Nampa and at Boise State. She’s not stopping there! In the works is a yoga therapy class for people with MS, as well as others, at the Nampa Recreation Center. Debbie is an incredible example of the power of a positive attitude. We’re excited to have her as a Movement Ambassador and appreciate the great work she is accomplishing!

When Debbie learned about the opportunity to become an MS Ambassador, she didn’t hesitate to volunteer. Exceptional people skills and the desire to educate others about

For more information on how you can become a Movement Ambassador in your community, please contact our volunteer coordinator by calling 1-800-344-4867 (option 2) or emailing GetInvolved@nmss.org.

SAVE THE DATE

Salt Lake City – Intermountain Medical Center Luncheon - 11:30 a.m.-1 p.m.

Chapter’s Annual Meeting The Chapter’s Annual Meeting is January 30, 2013, in three locations. There is no cost to attend. Registration is requested. Learn more online or call 1-800-344-4867. Boise – St. Luke’s Meridian Hospital Dinner- 6-7:30 p.m. Cedar City – Festival Hall Convention Center Luncheon - 11:30 a.m.-1 p.m.

The Annual Meeting brings together the MS community to learn, connect and inspire one another. Each meeting will include Chapter and research updates, as well as guest speakers. We also will vote on the members for the Chapter’s Board of Trustees. Nominations of those willing to volunteer in a leadership position are encouraged. A Board nomination form is available online year round. It must be received by December 31, 2012. If you are a member of the Chapter and cannot attend you can submit an online proxy voting form. Absentee votes are due end of business on January 18, 2013.

1440 Foothill Drive, Suite 200, Salt Lake City, Utah 84108

Ongoing Self Help, Support & Social Groups Idaho

Boise Nampa PM Nampa AM Idaho Falls

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

utah

Ogden 2nd Wednesday 11 a.m. Salt Lake City 2nd Thursday 6:30 p.m. Murray 2nd Saturday 10 a.m. West Jordan 2nd Wednesday 7 p.m. Price 1st Tuesday 6:30 p.m. St. George 4th Saturday 10 a.m.

calendar

Educational Events More events and educational programs can be found on page 2, the Chapter’s online calendar (cureMSidaho.org or cureMSutah.org) or by calling 1-800-344-4867. Learn more and make plans to join us!

DECEMBER

6 Teleconference: Aging and MS 6 Gentle Yoga, SLC 8 Hanukah Begins 19 St Luke’s Elks: Your Mood and the Holidays, Meridian 24-25 Society Offices Closed/Christmas

January 1 14 16 15 21 29 30

Society Offices Closed/New Year’s MS Smart Moves (see page 5) St. Luke’s Elks: Exercise, Meridian Society Scholarship Applications Due Society Offices Closed/MLK Day Relationships Matter, Cedar City Chapter Annual Meeting, Boise, Cedar City & SLC

FEBRUARY 13 18 21

St. Luke’s Elks: Relaxation, Meridian Society Offices Closed/Presidents Day Nutrition Night, Twin Falls

save the date March 11-17

MS Awareness Week


MSConnection Winter (Dec-Feb)