MS Connection Spring2011

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 | S P R I N G • 2 0 1 1

INSIDE THIS ISSUE

UTAH - SOUTHERN IDAHO CHAPTER

“SCHOLARSHIP” CONTINUED ON PAGE10

BIKEMS

Pedal for a purpose at these two great rides:

• Utah – June 25-26• Idaho – July 23-24

Ryan Jensen, one of 12 Chapter scholarship recipients.

CHAPTER AWARDS $23,000 IN COLLEGE SCHOLARSHIPS

MS should never stand in the way of an education. The 12 recipients of the Utah-Southern Idaho Chapter’s college scholarships for the upcoming school year could have easily let it, but they haven’t.

“The Society strives to help people impacted by multiple sclerosis move their lives forward,” said Chapter President Annette Royle-Mitchell. “We are honored to be able to assist these aspiring students who have a parent with MS or have MS themselves reach their educational goals more easily.”

This is the first year for the Chapter’s highest honor, the Val and Edith Green Scholarship which grants $5,000 annually to a Utah student to be applied over two years. It was awarded to Ryan Jensen (Grantsville, Utah), an exemplary student involved in student government, who will be attending Utah State University to study business.

“It amazes me that all of these sad and negative things can bring forth something so positive and inspiring,” noted Jensen in his application. “If [my mom] can smile and do the regular tasks she does every day and have MS on top of it, I know that I can do a lot of amazing things too. She doesn’t realize that I look up to her.”

MS=

Society Fellowship PAGE 4

Bike MS History PAGE 15

Volunteer Spotlight PAGE 17

Advocacy Update PAGE 18

TOLL FREE NUMBER 1 800 344 4867 | 3

I can hardly keep up these days! We’re halfway through our fiscal year and we’ve got movement (I mean REALLY GOOD movement) all around us. In addition to our chapter-wide programs such as our scholarships, MS Smart Moves, and MS Learn Online, to name just a few, we’re having fun meeting many of you at the community-based programs happening locally throughout Idaho and Utah. Read about some of them in Your Neck of the Woods (this is a fun section on page 12).

On top of this, initiatives we’ve been pursuing to improve access to and quality of clinical care are also yielding results. Our Chapter now has two (yes two!) Comprehensive Centers for MS Care (see the update about Rocky Mountain MS Clinic on page 4). In addition, the University of Utah was awarded a contract to be the Pediatric Data Collection Center for all the Pediatric MS Centers of Excellence in the country (see page 5), and they’ll also be hosting a Society Clinical Fellow, Dr. Gael Jean Yonnet, who begins in July (see page 4). These achievements not only recognize the clinical expertise in our community, but help us advance MS care overall.

This incredible movement we are seeing in programs, services, and clinical care cannot happen without the work of our volunteers and fundraisers. With powerful strides, we launched our fundraising season with Walk MS in Boise and Salt Lake City (watch for more Walk MS this fall too). Later this month our Bike MS is on the road in Logan, Utah and will be followed in July with another event in McCall, Idaho. And, just in case that wasn’t enough, we’ll be getting down and dirty at our first Mud Run MS event in August (you must come out to see or participate in this one)!

There is no time to rest. We have exciting work in front of us and people who are counting on us to make sure that living with MS does not get in the way of living well. Thank you to each of you who are a part of this movement.

Annette Royle-Mitchell Chapter President

THERE IS MOVEMENT ALL AROUND

PRESIDENT’S MESSAGE

Annette Royle-Mitchell, Chapter President, with Joni Olson and Ryan Jensen, 2011 scholarship recipient and his mother (front row) and Craig Wagstaff, VP of Questar Gas, Allan Bradley, Questar Pipeline Pesident & CEO and Brook Osterland, Chaper Programs and Advocacy Coordinator (back row).

STAY IN THE LOOP!

In an effort to use resources more effectively, we often send information and updates out by email. Do we have your correct email address or have you selected to receive updates electronically? Please help and let us know by calling 800-344-4867 or emailing [email protected].

4 | cureMSutah.org - cureMSidaho.org

This spring, the Salt Lake City based Rocky Mountain MS Clinic was awarded the National MS Society’s prestigious designation of a Comprehensive Coordinated Care Center – “Partner in MS Care”. This is the second such designation for a clinic in the Chapter’s territory.

“We congratulate Dr. John Foley and the Rocky Mountain team for meeting the stringent guidelines of the ‘Partner in MS Care’ program,” said Chapter President Annette Royle-Mitchell. “We are so

appreciative of all the hard work of the MS clinics throughout our area and this second designation is a real honor for the Chapter. It will not only benefit our local community but MS care overall, and that is an important Society objective.”

Dr. Foley and staff accepted the recognition at the Annual Research Symposium in Salt Lake City on May 26.

Clinics apply and qualify for this designation via a thorough evaluation and interview process, and are designated a “Partner in MS Care” after review from the local Clinical Advisory Committee and the National Partners in MS Care Review Panel.

Learn more on our website in the “Local News” section. n

A priority for the National MS Society is to attract, train and retain the next generation of MS scientists and clinicians. To help drive this initiative this year, the Society has a Postdoctoral Clinical Fellowship Program that accepted 12 highly qualified fellows nationwide for the yearlong program.

Working at some of the most prestigious MS training sites around the country, the fellows will gain valuable experience and mentoring in providing quality, specialized care for people with MS.

Salt Lake City’s Dr. Gael Jean Yonnet is one of the fellows accepted into the program. He will work under Dr. John Rose at the University of Utah Neurology MS Clinic.

Yonnet originally planned a career dedicated to neurology; however, after becoming a paraplegic from a snowboard accident while in medical school,

he sought a residency in physical medicine and rehabilitation (PM&R). “I wanted to learn more about this specialty that helped me reclaim my life,” he said.

A graduate of the University of Utah’s medical school where he also completed his residency, Yonnet is excited to utilize the tremendous knowledge he acquired throughout his training and expand it to the treatment of patients with multiple sclerosis. PM&R is an important aspect in the improved quality of life and care of those living with the disease. n

ROCKY MOUNTAIN MS CLINIC EARNS “PARTNER IN MS CARE”

SOCIETY’S 2011 CLINICAL FELLOWSHIP PROGRAM ADVANCES MS CARE

NEWS

Dr. Yonnet at work. Photo courtesy of Laura Seitz/Deseret News


The University of Utah was selected by the National MS Society to manage the MS Pediatric Data Collection Center that will study and analyze data collected from the Pediatric MS Centers of Excellence located throughout the country.

In 2005, six Pediatric MS Centers of Excellence were identified by the National MS Society to better meet the needs of growing and developing children dealing with MS. The Centers focus on providing comprehensive care, but also have the opportunity to collect important data critical to better understanding the complexity of MS.

Leading the data project are Dr. Charles Casper, a bio-statistician with extensive experience in National Institutes of Health-sponsored studies, and Dr. John Rose, professor of the University’s Department of Neurology and noted MS neurologist.

“Clinical studies by the pediatric network are demonstrating new features of the disease that help with diagnosis and management,” said Dr.

Rose. “Pediatric MS is felt to be important in the understanding of the cause and precipitating factors [of MS]. Clinical research is important and may reveal factors that would be difficult to discern in adults. A comprehensive database on pediatric MS is a valuable tool for future research that could assist investigators in the quest for the [cause] of MS.”

To date, there are 10,000 documented pediatric MS cases and the number is growing. n

Dr. Charles Casper, Chapter Clinical Outreach and Education Manager Jane Bjorklund, Dr. Emmanuelle Waubant and Dr. John Rose look forward to future results from the MS Pediatric Data Center. Dr. Timothy Coetzee is the Society’s new

chief research officer. He has researched MS his entire career. Coetzee was instrumental in founding Fast Forward, the research subsidiary of the National MS Society that focuses on speeding new treatments to market, and served as its president 2006-2010. He received his Ph.D. in microbiology and immunology in 1993 from Albany Medical College, NY, and in 1995, received the Society’s Advanced Postdoctoral Fellowship to support his research on the structure and function of myelin. He joined the Society’s Research Department in 2000, where, among other accomplishments, he helped establish the Translational Research Partnerships in Nervous System Repair and Protection in MS. This project is a five-year commitment to fund four large collaborative research teams focused on developing tools and strategies to promote nervous system repair and protection in MS. n

RESEARCH

MS PEDIATRIC DATA CENTER STUDY TO BE IN UTAH

DR. COETzEE NAMED SOCIETY’S CHIEF RESEARCH OFFICER


The turn of the year saw MS researchers assessing their progress in a number of areas. A think tank on progressive MS brought together MS investigators, research funding agencies and industry representatives.

How does MS progress?

At the think tank, which was hosted by the Society and its commercial drug development entity Fast Forward last December in Boston, Society President and CEO Joyce Nelson pointed out that progressive MS is the centerpiece of the Society’s Strategic Response for the next five years, with a focus on:

• Researching what leads to disease progression, • Finding ways to repair damage to the nervous

system, • Accelerating the development of new therapies.

Better identification faster

Finding ways to more quickly identify progressive MS based on biology rather than on symptoms would mean therapies could be tested earlier in the course of the disease and possibly protect the nervous system from injury.

Some evidence indicates that nerve degeneration occurs independently of inflammatory events, but there is other evidence that degeneration stops when inflammation subsides. Therefore, more research is needed to understand the cause of underlying nerve damage in progressive MS and to identify new targets for therapies. Participants also discussed the need for biomarkers—“footprints” that could help identify or predict MS progression. Think tank participants reported that steady progress is being made in finding noninvasive ways of detecting nervous system damage and whether protection or repair are taking place.

Additional issues

The participants discussed other important issues, as well. Many clinical trials do not run long enough to make clear whether there is an effect against slow progression. The traditional measurement of disability progression, the EDSS scale, is not sensitive to subtle change, which poses a problem in monitoring progressive MS.

And, some previous trials used a mixed population of people with primary progressive MS and secondary progressive MS. Since it’s not clear that all types of progressive MS would respond the same way, mixing participants may be one reason that some past trials were not successful.

“Part of the conversation included how newer approved treatments may help

in the battle to protect the nervous system in

people with MS.”

RESEARCH

RESEARCH NExT STEPS


For a complete wrap-up of the meeting and a webcast featuring a panel of several participants, visit nationalMSsociety.org/thinktank.

Repairing the nervous system

On January 11, Dr. Coetzee, chief research officer of the National MS Society, was joined by Drs. Peter Calabresi, Ian D. Duncan, Charles ffrench-Constant and Gavin Giovannoni for the webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” The four researchers recently served as leaders of four international teams in the National MS Society’s Nervous System Repair and Protection Initiative, funded through the Promise: 2010 campaign.

The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other diseases, they are good candidates for future clinical trials.

New drugs emerging

The researchers also talked about repairing the nervous system by stimulating the body’s own repair cells to be more active or by trying several types of stem cells to repair myelin. Part of the conversation included how newer approved treatments may help in the battle to protect the nervous system in people with MS.

“For the first time we’re really starting to see the emergence of very, very effective drugs for treating inflammation,” Dr. Giovannoni said, noting that these therapies might also help to stave off nervous system damage and allow natural repair processes to work, although this has not yet been proven. “We’ve seen people who have highly active disease going on these drugs and improving,” he said.

RESEARCH

This year’s Annual Research Symposium held at LDS Hospital in Salt Lake City on May 26 addressed some of the ways people with MS can enhance their quality of life through healthy nutrition and physical activity. Emerging disease-modifying therapies and how medical management may change was a very important topic, balanced with a presentation on the importance of nutrition and MS.

Presenters included Dr. John Foley, director of the Rocky Mountain MS Clinic, Dr. John Rose, professor of neurology at the University of Utah, and Eve Steiner, who received a Master of Science in nutrition and did her thesis on MS diets. n

ANNUAL RESEARCH SYMPOSIUM

RESEARCHNEWS

For the latest information on MS research, visit nationalMSsociety.org/research.

You can also get the latest news on research in your inbox by going to nationalMSsociety.org/signup.

For a full report or to read a transcript of the webcast, visit nationalMSsociety.org/webcasts. n


Has your New Year’s resolution long been forgotten? We all start off the year with the best of intentions, many of which have disappeared by February. Well, it’s never too late to make a new resolution. We have just the one for you: MS Smart Moves – the summer edition! For those of you who have participated in Fit MS in the past, this is the same program, with a new name.

This nine-week wellness program (June 6 - Aug. 6) is designed especially for those who are living with MS no matter the level of ability. Each week, you complete healthy tasks in the areas of mind, body and spirit. At the end of each week, you turn those points in to the Chapter. At the conclusion of the program, a grand prize winner will be named.

You earn points each day for such things as drinking enough water, eating five servings of fruits and vegetables, writing in a journal, and exercising or doing physical therapy. Whether your goal is to improve your flexibility, eat healthier, or run a 5k, MS Smart Moves is a great way to start.

Wellness of body, mind and spirit is the key to leading a healthy and quality lifestyle while living with MS. This program puts into action many of the things you have heard before -- exercise decreases the risk for heart disease, lowers blood pressure, raises the good cholesterol, strengthens bones, increases flexibility, endurance, energy, and overall general well being. For people with MS, exercise can help to decrease the complications that arise from muscle fatigue, weakness, contractures, and spasticity. Why not exercise and have a chance to win a great grand prize?

While the relationship between MS and stress might not be clear, what is clear is that too much stress doesn’t make anyone feel better. So, get those healthy spirit points by engaging in a stress reducing activity each day. Maybe crossword puzzles or Sudoku are your thing to keep your mind sharp. With MS Smart Moves, you can receive points each day for healthy mind activities, too.

Let MS Smart Moves add to an enjoyable summer. You can register at anytime during the program – just visit our website (cureMSutah.org or cureMSidaho.org) or call 800-344-4867 (option 1). Sign-up today and be on the road to wellness! n

LIVING WITH MS

Smart MovesMind Body Spirit

Walking (gait), balance and coordination problems are among the most common mobility limitations in MS. Most gait problems can be helped to some extent by physical therapy (including exercises and gait training), the use of appropriate assistive devices and, in some cases, medications for spasticity, fatigue, and walking speed.

Visit nationalMSsociety.org/walking_gait_problems for an overview of resources and a list of articles, brochures and videos exploring what can be done for walking problems. Or call us for help! 800-344-4867 (option 1). n

WALKING, BALANCE OR COORDINATION PROBLEMS?

MS SMART MOVES: THE SUMMER EDITION KICKS OFF JUNE 6


Summer means longer days, no school, and a great reason to get in the pool. It also means hot weather! The Chapter’s Financial Assistance Program might be able to help you beat the heat. The program assists those in need with such things as air conditioner repair, cooling vests, and utilities that are facing shutoff.

Visit our website (cureMSutah.org or cureMSidaho.org) for more information about this program, including the eligibility criteria, and to download an application. You can also call 800-344-4867 (option 1), to learn more about the Financial Assistance Program. n

New videos are now available via MS Learn Online. Topics include swallowing difficulties, mood changes, MS and the African American community, searching for the cause of MS (two-part series), and more. New Learn Onlines in Spanish are also now available. View these videos any time, night or day, at nationalMSsociety.org/mslearnonline, where you can also sign up to receive an e-mail when a new webcast debuts. Transcripts (.pdf format) and podcasts (.mp3 audio format) are available for most programs. n

LIVING WITH MS

Idaho FallsSept. 10

Twin FallsSept. 17

Sun Valley/Wood River

Sept. 24

Northern Utah (Ogden)Sept. 24

Southern Utah (St. George)

Sept. 24

NEW MS LEARN ONLINES

FINANCIAL ASSISTANCE PROGRAM CAN HELP

walkMSutah.org - walkMSidaho.org


“SCHOLARSHIP” FROM PAGE 1

Being a teenager is hard enough but for Alec England (Hailey, ID), there was the additional challenge of receiving a MS diagnosis his freshman year of high school. He did not let it deter him from excelling in school and being accepted to the University of Utah nor did it stop him from participating in school athletics. He was one of the Chapter’s top scholars, as well.

The entire scholarship committee, composed of staff, Board members, and volunteers, remarked about the difficult decision-making process they had while reviewing the 31 applications received this year. And, they hope this program provides great value to these students.

The scholarship process also engaged several of the Chapter’s top fundraisers who were paired with a recipient from their state. Any Bike MS or Walk MS participant raising $10,000 or more had a scholarship named in their honor. Many of these incredible supporters made congratulatory phone calls to the students. Such naming opportunities are available again for next year.

Applications for 2012 will be available online in October.

Congratulations 2011 Scholarship Recipients!

Val & Edith Green Annual ScholarshipRyan Jensen, Grantsville, UT - $3,000 (additional $2,000 in 2012)

Willie Blocker ScholarshipJoshua Lake, Leamington, UT - $3,000

Andrea Townsend ScholarshipAnonymous, UT - $2,500

Greg Eades ScholarshipNicole Fisher, Hooper, UT - $1,500

Greg Spencer ScholarshipBlair Higbee, Layton, UT - $1,000

Ryan Ren ScholarshipAshlyn Cahoon, Tooele, UT - $1,000

Mark Purcell ScholarshipSarah Baker, Price, UT - $1,000

Christopher Bias ScholarshipStephanie Martella, Riverton, UT - $1,000

Additional Chapter Scholarships

Angela Cheney, Idaho Falls, ID - $2,500

Alec England, Hailey, ID - $2,500

Sierra Trusnovec, Challis, ID - $1,000

Victoria Gunning, Boise, ID - $1,000

SUPPORTING THE MISSION

WALK MS EVENTS START STRONG

Thanks to amazing participants, volunteers and sponsors, both Boise and Salt Lake City kicked off the start to the Chapter’s seven Walk MS events this year.

Approximately 1,200 participants turned out at Julia Davis Park in downtown Boise on April 16. The KBOI2 (CBS) Morning News Crew and WOW Country 104.3 emceed the event and fed off the amazing energy from the crowd. Walkers enjoyed a fun team and sponsor village, the ever popular Dutch Bros. Coffee served fresh brews, and all welcomed the sunshine for a beautiful day in the park. The event raised more than $70,000.

Two weeks later on April 30, close to 4,000 walkers braved the cold and unseasonable spring snow at the Gateway Mall in Salt Lake City. The final tally that day was $240,000! Mix 107.9 DJs pumped up the crowd while cheerleaders from the University of Utah and local area high schools applauded walkers at the start. Bumble the Bee from the Salt Lake Bees baseball team was on hand to greet returning walkers.

A special thank you to CBH Homes (Walk MS Idaho) and Questar (Walk MS Utah) for their financial support and to the many volunteers who helped make the event happen! n

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Date: Thursday, August 18, 2011

Time: 6:30 PM (Dinner will be provided)

Location: Market Street Grill

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Speaker: Tamara Miller, MD

Date: Thursday, October 20, 2011

Time: 6:30 PM (Dinner will be provided)

Location: Hilton Garden Inn

Address: 1741 Harrison St. North Twin Falls, ID 83301

Speaker: Gareth Parry, MD Professor of Neurology Medical Director of the Multiple Sclerosis Center University of Minnesota



NEWS

YOUR NECK OF THE WOODSCheck out the many good works and events that happened this spring throughout the Chapter.

Please share with us what you have been doing in your local community and help inspire others. Send your “happenings” to Juliann Fritz ([email protected]). We’d be honored to highlight it in the next MSConnection.

Boise

A group of eight Gap employees volunteered for Walk MS Boise in April. “It is a great cause and we are happy to help,” shared the group’s organizer, Samantha Wiars.

Michelle Jacobi and friends hosted a “Gamble Away MS” fundraiser at the Hillcrest Country Club to benefit the Chapter. “People with MS gamble every day,” the invitation noted. The festive evening included a silent auction as well as craps, black jack and poker tables.

Boise-area young adults gathered at the Bardenay restaurant to network and enjoy one another’s company. That evening, the restaurant also had a charity night with 20% of the proceeds from the dinner rush going to the Chapter.

Duchesne

Kesha Lowe hosted a community walk at Duchesne High School as a project for her Family, Career and Community Leaders of America student organization. About 50 walkers participated and raised $300. The cause was close to the students’ hearts because their advisor has MS and walking is difficult for her; however, she walked three laps during the event! The day included walking, running, line dancing, and fun games.

iDaho Falls & BeyonD

This winter, Sam’s Clubs from Hawaii to Puerto Rico raised more than $1 million for the Society. Of that, $26,000 was from the Utah-Southern Idaho region and will benefit the Chapter! In an effort to help drum up awareness at her local store, support group leader Susan Miller spoke about MS. Customers were then invited to donate money and write their names on a pair of paper feet. By the end of the month, they had a wall of paper feet and raised almost $3,000!

ogDen

More than 50 people came out for the first ever MS Night at the Museum, a family social, at the Ogden Eccles Dinosaur Park. Thanks to everyone who joined us. A great time was had by all.

RiveRton

In the Society’s national magazine Momentum, Angelina Kump shared her story about being a teen with MS and dating. The story is in the current Summer 2011 issue on page 49. Kump also was a 2009 Chapter scholarship recipient. Thanks for sharing your story and helping others!

PRice & Boise

Relationship expert Matt Townsend conducted two-day couples relationship programs in both cities. These were funded by the Healthy Marriage Initiative through the Department of Health and Human Services and the Society.

twin Falls

The Chapter hosted a MS 101 presentation by Dr. John Steffens at the Hilton Garden Inn. The program covered a variety of MS information. Steffens has a neurology clinic in town and also is a hospitalist, a specialist in inpatient medicine, at the University of Utah.

salt lake city

“Project Runway” host Tim Gunn and Lucky Brand Jeans made a $1,000 contribution to Walk MS when Gunn was in town (the same day as the Walk) for a fashion charity event and book signing.

TOLL FREE NUMBER 1 800 344 4867 | 13

NEWS

This August, tune-in to the Food Network to see “The Great Food Truck Race.” The show made an appearance at Walk MS the end of April while filming the second season of the program.

veRnal

The Vernal community came together to create the Vernal Community Walk for MS, raising $3,000. Thank you to Lorrie Ovaeta for spearheading this incredible effort for the MS movement. n Longtime support group leader

Danny Velasquez and KUTV2 (CBS) meteorologist Debbie Worthen were named to the Board of Trustees for the National MS Society Utah-Southern Idaho Chapter this spring. The board is responsible for overseeing the business and affairs of the Chapter to ensure activities support the Society’s mission.

Danny and Debbie bring a real passion for helping people with multiple sclerosis move their lives forward,” commented Chapter President Annette Royle-Mitchell. “They are great additions and will add valuable perspectives to support us with our important work, creating a world free of MS.”

Velasquez has been a longtime support group leader in Price, Utah and serves as a national trainer helping to educate new support group leaders throughout

the country. He also serves on the Chapter’s Programs Committee helping to grow the reach and diversity of services available to those impacted by MS.

Worthen was first introduced to the Society when she accepted the challenge to ride and fundraise for Bike MS last summer. She was inspired by the people she met and wanted to do something to bring greater awareness to MS. In addition to the board, she will serve on the Marketing-Communications Committee.

The Chapter’s board, currently led by Chairman Bob Harmon of Harmons Grocery, 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 “About the Chapter.”n

September 9-10Get involved in this refreshing

awareness campaign with participating grocers this

summer. Learn more by contacting [email protected]

Welcome Danny Velasquez and Debbie Worthen!

VELASQUEz AND WORTHEN NAMED TO CHAPTER’S BOARD OF TRUSTEES

Salt Lake City Continued


INGENIOUS FUNDRAISING STARS having a gooD time FoR a gReat cause

SUPPORT THE MISSION

Our participants and volunteers raise remarkable sums year after year, often while juggling jobs, family obligations, and even MS itself. We asked several fundraising champs to share their innovative ways.

Creative Company

kathy camomile, salt lake city: Longtime Walk MS participant Kathy Camomile has put the “fun” in fundraising, but most importantly gets her co-workers involved. Her company, Varian Medical Systems, supports a Walk MS team each year, VMS Against MS, and this year donated more than money! Several co-workers volunteered to have their longtime mustaches shaved off, as well as a couple of scalps, so to speak, all to help raise funds for MS. They called the event “Shaving Delight.”

They didn’t stop there. Another fundraiser this year involved six senior managers singing karaoke during the lunch hour. The crowd sang along to renditions of “Call Me,” “Living on a Prayer,” and “LeRoy Brown.” As one can imagine, singing wasn’t their forte, but they did it with style dressing up as their favorite rockers. Events like these build team spirit and MS awareness. They were able to raise $8,000 from the lunchtime exploits.

Resourceful Ways

carlene christiansen, ogden, ut: For the past seven years, Carlene Christiansen has individually raised more than $7,000 for Walk MS. One way she does it is through recycling. Every morning she walks with her husband and along the way they pick up aluminum cans. Over the years, they have befriended folks on the route and many save their cans just for them. Since June 2010, she has raised $703 from picking up cans.

Another creative way Christiansen raises money is with holiday gift wrapping. She contacted the local mall to make arrangements. The first year, she had a little cubby in the food court and was kept busy; however, in 2009 the mall gave her a vacant store and together with

team members wrapped their way to $6,000!

Entertaining Fun

John and Judy Fisher, twin Falls, iD: For those of you that enjoy staying in bed, John and Judy Fisher have a fundraising idea that will take the covers – Bed Racing for MS! The Bed Races require brains and brawn as teams have to first build their custom beds (including wheels!) and then race them through the streets.

Building on their success, the 2nd Annual Historic Downtown Twin Falls Bed Races will take place June 18. Learn more on Facebook when you “like” Bed-Racing-For-Multiple-Sclerosis. Many of you in the area may already have seen the TV commercials for this hair-raising event, so start making your bed today! n

BRATS FOR MS

Visit any Harmons Grocery store in Utah on Fridays or Saturdays in June and buy a $3 brat meal to benefit MS. This program raises more than $40,000 annually for the Chapter. Yum!

TOLL FREE NUMBER 1 800 344 4867 | 15

SUPPORT THE MISSION

Cycling history was made in 1986! Not only did Greg Lemond win the Tour de France, the first American to do so, but it also was the beginning of Bike MS Utah, one of the best cycling events in the state. That first year 100 cyclists pedaled the mountainous roads of Summit County (Park City area) where the route crossed three dams giving it the name, Best Dam Bike Ride.

We are honored to have several participants from the first year joining us for the June 25-26 ride, especially 80-year-old Frank Roskelley, who has participated every year. Like many, the ride initially appealed to him because of the challenge, but he soon got caught up in the cause. One year while asking for donations, a co-worker told him he would be happy to support his efforts; he had just been diagnosed with MS.

“That’s when my motivation for the ride changed to riding for people living with MS,” he said. “As I met more people living with MS, I realized that I could suffer a few days if they can live every day with MS.”

When the ride started, there were no MS-specific treatments and the MRI was just being introduced to better assist with diagnosis. Today, not only is MRI technology available in nearly every hospital, but there are also seven disease-modifying therapies, including an oral treatment, helping to slow the progression of the disease. There also is a symptomatic therapy that improves walking for people with MS, and we have learned that a focus on wellness and a healthy active lifestyle can have a tremendous impact for better management of the disease.

We have come a long way but there are still miles to pedal. Over the course of a quarter-century, more than 30,000 cyclists have participated raising more than $11.9 million to help create a world free of MS and improve the lives of many.

Presently, the ride brings together approximately 3,000 cyclists, offers route options up to 175-miles over the course of two days, raises more than $1.5 million each year, and is based out of Logan, Utah. Yes, it still crosses a dam, the Hyrum Dam.

Let’s keep riding toward a world free of MS! Sign-up today to ride or volunteer for the 25th Anniversary of Bike MS: Harmons Best Dam Bike Ride the weekend of June 25-26. Visit bikeMSutah.org.

ANOTHER GREAT RIDE BIKE MS IDAHO - JULY 23-24

Save the date! Bike MS Idaho: Road, Sweat & Gears Ride through McCall, Idaho is another great event. Very picturesque, it brings about 250 cyclists together and offers a variety of routes for all ability levels. Visit bikeMSidaho.org n

25TH ANNIVERSARY OF BIKE MS UTAH

BIKEMSCHAMPIONSContribute your MS story to the cause and be a Bike MS Champion. The program pairs people living with MS with cyclists who ride in their honor. For more information, contact Shelly Parker at: [email protected] or 800-344-4867 (option 2).


MONEY MATTERS

In order to qualify for SSDI (Social Security Disability Insurance) benefits, a person needs to have paid sufficient FICA taxes, thereby earning “work credits,” in addition to having a disability that makes holding a regular job impossible. Visit www.ssa.gov/pubs/10029.html for an overview of eligibility requirements and work credits, which are earned each quarter of a year an individual is employed.

The SSA (Social Security Administration) recognizes MS-related difficulty with motor skills, concentration, memory, fatigue, vision or side effects of medications as among the criteria for receiving benefits.

The SSA will require the following:

• The names and contact information of doctors, caseworkers, hospitals and clinics involved, the dates of visits and copies of any medical records.

• The names and dosages of all prescription medicines.

• Laboratory and test results.

• Work records from your employer. Letters from colleagues or supervisors that support the claim.

Start the process

Ask your neurologist (and occupational therapist, if relevant) to evaluate your ability to continue working. “Make sure you have your doctor’s help and encouragement from the beginning,” said Kris Erickson, MSCIR, MSSMC, health insurance manager of the National MS Society. “Without that, your claim may be turned down and you’ll have to appeal.”

“We also recommend that you journal your symptoms,” Erickson added. “A description of what is happening on a day-to-day basis can make a big difference, especially if you have invisible MS symptoms. Saying ‘extremely tired,’ for example, is less useful than saying ‘MS fatigue, four 45-minute

naps a day that interfere with bathing, eating, cleaning the house.’”

You can apply online at www.socialsecurity.gov/applyfordisability. Or call 800-772-1213 to schedule an in-person or phone appointment. Keep copies of all the information you give to or receive from the SSA, as well as the contact information for your SSA interviewer. Be patient, persistent and punctual. “And don’t be afraid to ask for help,” Erickson said. An MS Navigator® can provide you with materials to help with the initial application; call 1-800-344-4867. In the event of a rejection, the Navigator will connect you with the appropriate professionals to assist in organizing an appeal.

For more information, visit www.nationalMSsociety.org/SSDI or www.socialsecurity.gov/disability. n

HOW TO GET STARTED WITH SSDI

GETINVOLVED

Do you prefer bikes, mud or paper? You don’t have to choose! Volunteer for Bike MS, Mud Run MS or in our office. Contact [email protected].

TOLL FREE NUMBER 1 800 344 4867 | 17

VOLUNTEER

Boise’s Sarah Dance knew little about MS or the National MS Society until she began dating Steve, who has MS, several years ago. Although Steve was not very open about it, Sarah wanted to learn more about the disease and how she could help. Soon after they began dating, she heard about Walk MS and formed Team Dance.

The first year, the team had five members, but now she has a couple dozen and has been one of the top fundraisers in Idaho the last two years.

The Dances were married four years ago, and Sarah has furthered her commitment to MS by taking on a leadership role with Walk MS. She helps with planning, publicizing, and coordinating volunteers to spread the word about the Walk. She and her husband also have a strong group of family, friends, and coworkers who support the Walk and join or donate to Team Dance. “We ask everybody,” she said.

All of her efforts leading up to the event don’t detract from her enjoyment. “The day of the Walk is so amazing,” said Dance. Though she doesn’t consider herself an emotional person, she can’t help but be overcome by the atmosphere at the Walk and how much it means to everyone involved. “MS really does affect so many people,” she said, and her involvement with the Society has allowed her to befriend many of them.

According to Dance, volunteering with the Society is extremely rewarding. She encourages everyone to consider getting involved, even if you only have limited time to spare. Every little bit counts. n

Mykenzie Hydo was a social work intern at the Chapter for the last year. She graduated in May and rejoined the staff for the summer. The numerous projects she worked on and will continue to help with include peer support groups, the financial assistance program, and educational workshops.

“During the nine months while I was an intern here, I have been consistently impressed by the passion and commitment of the staff. They truly embody the Society’s core values. I have seen first-hand how teamwork is a driving force of the Society’s

mission. Every staff member has a unique set of responsibilities, and yet we are all united in a common purpose — to ultimately better the lives of those who are affected by MS.

“At the end of last year, my best friend was diagnosed with MS, and that was when my professional interest in fighting MS became a personal one, too. I am grateful to have been able to introduce her to the many programs, services, and resources the Society offers. I am proud to serve with such an incredible organization!” n

VOLUNTEER SPOTLIGHTinsPiReD By a loveD one

IN HER OWN WORDS: the volunteeR exPeRience By mykenzie hyDo

Sarah Dance at Walk MS


The Legislative session in Idaho ended April 7, nearly a month after the Utah session. Both states focused on the budget with significant discussions on what services can be cut while still providing adequate programs for our most vulnerable community members.

In Utah, the majority of potential cuts

to Medicaid were offset by better-than-expected revenues, an agreement to eliminate the structural deficit over time (rather than all at once), and tobacco settlement and social service block grant money that was used to fill in most of the remaining gaps. Our Advocacy Team visited legislators at the statehouse to encourage support for services that benefit people with multiple sclerosis such as physical and occupational therapy. We were pleased to see these programs maintained!

In Idaho, legislators passed $35 million in state funding cuts to the Medicaid program. Due to the subsequent loss of federal matching funds, this will mean $108 million less for the Medicaid program statewide. Fortunately, physical and occupational therapy services were not cut; however, our Advocacy Team will have to watch closely to see just how these cuts may play out for our community.

If you would like more information on local advocacy efforts, please contact Taryn Magrini ([email protected] or 800-344-4867, option 1) to sign up for our monthly Advocacy E-news. n

In March, approximately 350 MS activists from all over the country convened at the nation’s capitol for the National MS Society’s 20th annual Public Policy Conference. Joining this group was Chapter President Annette Royle-Mitchell, Programs and Advocacy Coordinator Brook Osterland, Utah volunteer Jenn Gonnelly, and Idaho volunteer Cheryl Bloom. MS activists, all donning “MS orange,” visited offices on Capitol Hill to raise awareness about multiple sclerosis and advocate for improved access to neurological care (S. 597), MS research funding in the Congressionally Directed Medical Research Programs (CDMRP), and the Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495) that would extend funding for daytime care to people with MS and similar diseases.

Though the Public Policy Conference lays some important groundwork on key issues, there is still work to be done. That work is done by advocates like you. So, take the time to learn more about these important issues, contact your legislators, and become an MS activist. Visit nationalMSsociety.org/advocacy to learn more about these and other important issues that impact the lives of thousands of Utahns and Idahoans living with MS. n

The Idaho Statehouse

Volunteer Cheryl Bloom, Congressman Jim Risch (R-ID) and Chapter President Annette Royle-Mitchell at the U.S. Capitol.

ADVOCACY

2011 STATE LEGISLATIVESESSIONS ARE A WRAP

ACTIVISTS VISIT WASHINGTON, DC

TOLL FREE NUMBER 1 800 344 4867 | 19

SUPPORT THE MISSION

Sadie BallardYolanda M. Dick

Guy Frederick GroomsElizabeth Reynolds

Nancy GruaDeeAnn L. Wilson

Jan MorganSandra Steinvoort

Roger OttersbachLaverne C. GagelTraci Maier and FamilyMichelle L. Schwartz

Helen RobertsNancy E. KuglerD. Colene Warren

In lieu of gifts for special events or flowers for the loss of a loved-one, many choose to make a donation in tribute or memory of someone special. Find out how to make arrangements and also other ways you can make a difference by calling 800-344-4867 (option 2) or by visiting our websites (cureMSutah.org or cureMSidaho.org).

MEMORIALS

LETS GET DIRTY!MUD RUN MS UTAH

AUGUST 13 • MILLER MOTORSPORTS PARK BENEFITING

MUDRUNMSUTAH.ORG

MUDRUNMSUTAH.ORG

AUGUST 13, 2011

40pt. 4” Round Pulp Coasters

800-344-4867PuBlication oF the national multiPle scleRosis society utah-southeRn iDaho chaPteRStudies 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 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

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 Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The National Multiple Sclerosis Society is dedicated to creating a world free of MS.

© 2011 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

Boise Office 6901 W. Emerald Street, Suite 207 Boise, ID 83704 Follow us at: facebook.com/MSutahIdaho


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MS Connection Spring2011

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Transcript of MS Connection Spring2011