Annual Report 2011

MOVINGFORWARDTOGETHER

Dear friends,

In 2011, we became a new Chapter uniting southern Idaho and Utah to serve more than 46,200 people. We reached higher and contributed 6% more than last year to research and national programs. We con-nected people and organizations to maximize resources and spread awareness. We provided quality programs and services that made an important difference in the lives of people impacted by MS.

While we faced the ever changing challenges of the economy, our supporters – 20,000 donors, 10,060 event participants, 936 volunteers, and more than 60 corporate partners and sponsors – boldly rallied behind us to help move us closer to a world free of MS!

The force behind all our accomplishments is the MS community. Together we inspire one another to do more, be better and work even harder for a future free of MS. In this report, you’ll learn about some of the inspiration behind what we do.

We have ambitious work ahead but we are not tiring, we are gaining momentum and moving forward together. Thank you for all your support!

Bob Harmon, Chairman Annette Royle-Mitchell, President

Bob Harmon, Board ChairmanCecil Hedger, Secretary

Nicole Lengel, TreasurerAnnette Royle-Mitchell, Chapter President

Richard Baringer, M.D.Tracy CrowellRichard FlintJohn Foley, M.D.Jay GurmankinJeana Hutchings

Safia KellerCindy KindredPhilip McCartheyJordan NeedlesTodd OldroydIrene Petrogeorge

Colleen RobertsJohn Rose, M.D.Ann SasichSheila SteinerDanny VelasquezDebbie Worthen

2011 BOARD OF TRUSTEES

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The National MS Society’s vision is a world free of MS. Our mission is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

WHO WE AREThe National MS Society started with a simple act of love – a sister trying to help her brother recover from MS. In 1946, Sylvia Lawry gathered 20 of the nation’s most prominent research scientists and founded what would become the National MS Society (incorporated in 1947). The mission, to fund research and provide information and other services to enhance the lives of those impacted.

Today, we are a collective of passionate individuals who want to do something about MS now! We help each person address the challenges of living with MS through a 50-state network of chapters. We help people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

The Utah-Southern Idaho Chapter, headquartered in Salt Lake City with an office in Boise, Idaho, serves a diverse urban and rural territory spanning from roughly McCall, Idaho to St. George, Utah.

WHAT IS MS?Every hour someone is newly diagnosed with multiple sclerosis, a chronic, unpredictable disease of the central nervous system, which includes the brain, optic nerves and spinal cord. MS interrupts the flow of information within the brain, and between the brain and the body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted.

Two to three times more women than men are diagnosed with MS, but in men, the disease often takes a more aggressive course. Most people are diagnosed between the ages of 20 and 50; however, there are more than 10,000 documented pediatric cases. MS affects more than 400,000 Americans and 2.1 million people worldwide. Our chapter has one of the highest incidence rates in the country. We estimate 1 in 300 is affected in our area, and 6,600 of them have registered with the Chapter to receive information and support services.

It is not known what causes MS. There is no cure, yet!

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FUNDING THE MISSION

REVENUE FY11 FY10Special Events $2,358,395 $2,142,289Less Benefit to Donor Costs -304,450 -245,299Net Special Events Revenues 2,053,945 1,897,060

Membership & Contributions 346,400 408,044Legacies 1,722 0Received at National (other than legacies) 34,579 26,518Total Other Revenue 117,884 21,175Total Public Support & Other Revenues 2,554,530 2,352,797

EXPENSESLocal Program Services 1,339,369 1,217,778National Program & Research Expense 813,071 659,486Additional Research Contribution 20,000 85,200Total Program Services & Research 2,172,440 1,962,464Supporting Services

Fundraising 287,693 237,530Administration 73,467 72,882

Total Supporting Services 361,160 310,412

Total Expenses 2,533,600 2,272,876

Change in Net Assets 20,930 79,921Net Assets, beginning of year 1,102,514 1,022,593Net Assets, end of year $1,123,444 $1,102,514

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∫ Bike MS Utah: Harmons Best Dam Bike Ride – $1,502,000 with 2,753 cyclists

∫ Walk MS Utah, presented by Questar – $328,000 with 4,867 walkers

∫ Walk MS Idaho, presented by CBH Homes – $144,000 with 1,497 walkers

∫ Bike MS Idaho: Road, Sweat & Gears McCall – $60,000 with 85 cyclists

∫ Mud Run MS Utah – $78,000 with 324 runners (renamed MuckRuckus MS for 2012)

∫ Dinner of Champions, presented by the McCarthey Family – $129,000

∫ Women on the Move, presented by the McCarthey Family – $110,000

∫ Individual/Corporate Giving – $127,428, a 35% increase from 2010

∫ Traditional Foundation Grants – $175,592

*Includes benefit to donor costs

For the fourth year, 86¢ or more of every dollar raised directly supported the cause.

53% went to support people impacted by MS including informational resources, financial assistance, programs to enhance daily life, educational seminars for clients and profes-sionals, and wellness programs

33% spent on national programs and cutting-edge research to stop MS, repair what’s been lost and to end MS forever

14% used to cover fundraising efforts (11%) and administrative costs (3%). Well below Charity Navigator’s average of 25%

OUT OF EVERY DOLLAR DONATED IN 2011 …

support forpeople impacted

by MS

national programs & cutting-edge

research

fundraising& admin

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MOBILIZING PEOPLE AND GROWING AWARENESS

Engaging, training and mobilizing everyone who wants to do something about MS moves us closer to a world free of MS.

Volunteers are a driving force of the Society’s work. Joe is an example of helping to move the MS movement forward. He volunteers countless hours at the Chapter’s major events serving as a Special Events Leader managing the many others who also lend their support. In addition, he is trained as a Peer Support Leader, a fulfilling role where he shares his personal MS experiences with people newly diagnosed.

“It’s an important part of my life to give back and help people like me with MS. It’s also amazing to see all the people who take time out of their lives to do the MS events. It means a lot and I have met so many cool people volunteering.“

– Joe, West Valley City

Working for many years as an MS advocate, Cheryl sees the difference activists can make to shape and improve programs and services for people with MS. She has encouraged others to join her in her efforts to educate, advocate and represent the MS community in helping public policy makers understand the impact of MS.

“Being an advocate for people with MS has been rewarding on many levels – seeing new medications introduced, MS research recog-nized as its own need for funding, more clinical trials in our future, MS Awareness Week is getting attention and our legislators seem more open to listening. We still have a ways to go but the doors are not being [closed].”

– Cheryl, Boise

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Time and TalentEngaged 936 volunteers who gave 10,148 hours of service to the Chapter; a total estimated value of more than $216,766. Volunteers assisted at fundraising events, provided support in the office or served on a committee, helped people with MS in the community, and in many other ways.

Stand to Cure MSImplemented the Chapter’s third annual “Stand to Cure MS”, a two-day grassroots awareness program taking place in 33 grocery stores throughout Utah. It was driven by more than 200 people, who manned informational stands and served lemonade, raising $5,374 as well as educating hundreds.

Advocating ChangeMet with federal and state public policy makers advocating for MS research funding, respite programs and to safeguard local services important to people with MS including Medicaid, and the implementation of new health care reform.

Shining a Light on MSGenerated public awareness via many avenues during MS Awareness Week including distribution of 400 orange awareness ribbons, a legislator reception at the Idaho statehouse, the lighting of the top floor of a Salt Lake City high-rise (Hamilton Partner’s at 222 Main Street), and news anchors at a Boise TV station wearing orange, among other ways.

Garnered more than 140 news stories (print, TV, radio, Web) throughout Idaho and Utah in-cluding a local client highlighted by the Society in a New York Times magazine special insert.

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ADVANCING MS RESEARCH AND CLINICAL CARE

Training and retaining the next generation of MS scientists and clinicians as well as seeking ways to improve clinical care are priorities for the Society.

Dr. Gael Yonnet became one of 12 fellows in the nation, and the first for the Chapter, to be accepted to the yearlong Postdoctoral Clinical Fellowship Program. He works under the direction of Dr. John Rose in the University of Utah Neurology MS Clinic studying and imple-menting new ways to improve quality of care for those with the disease.

“There are a lot of people with MS. There is a big need to be seen by physicians and there are very few physicians equipped to take care of the disease. I hope to be able to help provide better care to more MS patients. This is an honor and a great opportunity to have more MS specialists trained offering excellent care.”

– Dr. Gael Yonnet, Society Fellow

The Chapter is proud to have two Comprehensive Coordinated Care Centers as part of the Society’s “Partner in MS Care” program to provide better care. In 2011, the Rocky Mountain MS Clinic joined the University of Utah’s Depart-ment of Neurology MS Clinic with this rigorous and prestigious designation that has only been awarded to 40 centers in 19 states. Our chapter has two!

“It takes a mix of specialists and services to treat the varied and complex issues of MS. Working together with an MS team to provide comprehensive care is moving us forward and reaching for a higher standard of care that will help us all. It is an honor to be recognized as partnering to lead the way.”

– Dr. John Foley, Director of Rocky Mountain MS Clinic

Courtesy Laura Seitz/Deseret News

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The National MS Society is one of the largest funders of MS research and education in the world.

Research to Stop, Prevent and RepairContributed $441,528 to the Society’s $40 million investment in 2011 that funds 325 of the most promising MS research projects around the world.

Educational OutreachHeld eight professional education programs in conjunction with Intermountain Healthcare and the University of Utah. More than 188 health care professionals who care for MS patients in all areas of the disease attended. Programs helped them better assist clients and increase MS knowledge.

Had five research programs for more than 200 clients and professionals to educate them about the beginning stages in the lab to what is on the horizon for future treatments and one day a cure.

MS in ChildrenNamed the University of Utah home to the MS Pediatric Data Coordinating and Analysis Center where they are studying and reviewing data collected from all 10 Pediatric MS Centers located throughout the country. There are more than 10,000 documented cases of MS in children, and the number is growing. A com-prehensive database will be a valuable tool for research and will also assist investigators in finding what causes MS.

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ADDRESSING THE CHALLENGES OF EACH PERSON LIVING WITH MS

Out-of-pocket costs for MS treatments can be $900-$3,000/month or more.

Having lost most of her mobility and in a wheelchair, Abby received a grant to fix the lift in the family’s van. This enabled her to leave her home, go to doctors’ appointments, and be part of her community, lessening the chance of isolation and depression.

“It is one of the best things as I am free to travel with other people and can go to restaurants, movies, the zoo and many other places. I can be out with other people enjoying the world. I am incredibly appreciative.”

– Abby, Salt Lake City

Financial AssistanceMet the needs of 73 families that requested assistance. The Chapter helped in many ways including critical emergency needs, durable medical equipment, accessibility modifications for homes or vehicles, assistive technology, cooling devices, and respite care, among other unique needs.

Care ManagementExpanded in-home care manage-ment by a licensed clinical social worker to include partnerships with Idaho organizations and continued with the Chapter’s long standing partners in Utah.

Maximized ResourcesPartnered with organizations to connect families with community resources extending the Chapter’s reach and maximizing budgeted resources.

Self-Help GroupsTrained new self-help group leaders to create three new groups in the Chapter (Provo, Centerville, Magic Valley). These local support networks help participants better manage the impact of MS as well as provide education and stronger connec-tions with the MS community.

Courtesy SelkoPhoto

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When one person lives with MS, it affects the whole family.

Oftentimes children are called upon to help provide care for a loved one living with MS. This added responsibility may hinder some from continuing their education, but it also inspires many to move their lives forward and seek professions to help people with MS.

“My daughter has been really patient and understanding, a big help to me [with my MS]. To see her do well and get a Society scholarship put her over the top so she could pay for her first year of college. She wants to become a nurse. We are really grateful. It helped a ton.”

– Recipient’s Mother, Idaho Falls

Couples living with MS may find themselves in uncharted territory as the disease can affect the day-to-day and romantic aspects of marriage, acceptance of life with the disease and frustrations sur-rounding MS.

“[Relationship Matters] was excellent with validating and becoming more comfortable with the issues of MS and the complexities of living with chronic illness and marriage.”

– Participant, Salt Lake City

College Scholarships Awarded $21,000 in college scholarships to 12 students in Utah and Idaho including the first Val A. & Edith D. Green scholar-ship for $5,000 to an aspiring business student. One recipient lives with MS while the others have a parent with the disease. MS should not stand in the way of an education.

Relationship MattersHeld three couples’ retreats (Boise, Price, St. George) led by relationship experts. Each pro-gram provided the 66 partici-pants with ways to better sup-port their partner. The program was funded by a grant from the U.S. Department of Health and Human Services.

Wellness ProgramsContinued several wellness programs including distribution of $5,000 in Self Improvement Grants to 46 individuals who qualified for assistance, and continued MS Smart Moves, a health and wellness program that encourages simple lifestyle changes. It had more than 100 participants.

We are grateful to all of our friends who support the Utah-Southern Idaho Chapter of the National Multiple Sclerosis Society through their energies, talents, and gifts. We could not continue to move forward without your participation!

$100,000+Harmons Grocery

$50,000-$99,999Cyprus Federal Credit Union McCarthey Family FoundationFriends of Multiple Sclerosis Society Tuffli Family Foundation

$25,000-$49,999Questar Corporation Ray and Tye Noorda Foundation

$10,000-$24,999Bingham Cyclery Kimberly Gerard Swire Coca-Cola, USABiogen Idec Huntsman International LLC Teva Neuroscience, Inc.Frances W. Burton Foundation McNamara Purcell Foundation University of Utah Department

of NeurosciencesCommunity Health Charities

of Utah, IncMiller Motorsports Park VLCM

George S. and Dolores Dore Eccles Foundation

Mountain America Credit Union

C. Scott & Dorothy E. Watkins Foundation

EMD Serono Inc. My Good Fund TrustFedEx Salt Lake Magazine

$5,000-$9,999Eileen Abend Kennecott Utah Copper

Charitable FoundationAnn & Joe Sasich

Acorda Therapeutics, Inc. L3 Communications Silicon Valley Community Foundation

Allstate Foundation Merit Medical Systems, Inc. SpecializedAssociated Food Stores, Inc. Larry H. Miller Group Emily SpencerATS Automation

Tooling SystemsOculoplastic Surgery Inc Station Park CenterCal, LLC

Bracewell & Giuliani Orbit Irrigation Products, Inc. William L. TownsendCBH Homes Roy Pagenkopf University Guest HouseFidelity Charitable Gift Fund Pure Protein University of Utah

Athletic DepartmentGoldman, Sachs & Co. Real Salt Lake LLC Vanguard Charitable

EndowmentIntermountain Healthcare Rocky Mountain MS Clinic Wasatch Advisors

DONORS

$2,500-$4,999AFS Brennan Holdings Snake River HydraulicsBecky Allan Holland & Hart LLP Spectra ManagementShirley K. Angel Humana, Inc. Scott W. and Betsy Thornton Family Bayer HealthCare Pharmaceuticals Hunt Electric Tour of UtahChris Blanchat Integra Telecom Andrea K. TownsendBonneville Cycling Club KBOI TV2 Truist Altruism ConnectedJeff & Helen Cardon Logan City Police Dept. Twin Falls Area Chamber of

CommerceChurch of Jesus Christ of Latter

Day SaintsMary S. McCarthey Utah Highway Patrol

Barbara & Gus Colessides Herbert I. & Elsa B. Michael Foundation

Varian

Lawrence T. Dee & Janet T. Dee Foundation

Stephen P. Miles Wells Fargo Bank

Ezekiel R. Dumke Jr. Jamie Mitros Wheeler FoundationeBay Foundation Employee

Gift Matching ProgramPeak Broadcasting William Wishnick Foundation

Epcon Partners, Inc. Penna Powers Brian Haynes Wolcott, Vern and Marva Charitable Foundation

E-Trade Financial Portland General Electric Zions BankBrandon Grizzell Road Respect/ Zero FatalitiesHarmony Home Health Hospice Dr. John W. RoseTodd Herfield SelectHealth

$1,000-$2,499Advance Displays Roy Bartee, III Cascade Refining, Inc.Advocate Hospice LLC Debbie & Jeff Barton Chevron Humankind Matching

Gift ProgramBernie & Sue Allen Kevin Bauer ChevronWest Credit UnionAMP Security Bear River Mutual Christ United Methodist ChurchAnonymous Becton Dickinson and Company Boyd ChristiansenJason Angel Fredrik M. Bergold Citydeals Sales & Services LLCArgent Automotive Systems, Inc. Christopher A. Bias Ronda CongerNichole Arguinchona Bioness ConserviceATK Matching Gift Program Blackbottoms Cycle Wear Robert CorcoranAutoliv ASP, Inc. Bloomberg Financial CR EnglandAXA Foundation Rachelle Brower Tracy CrowellB.L.M.F Brown Mackie College David CummingBad Ass Coffee Wolfgang Buehler Kristi T. CummingBank of America Matching Gift Cache County Sally P. DavisDr. Melinda Bargreen Cache Valley Electric Co. Davis School DistrictMatching Barnes Group

Foundation Inc.Carepoint Group Purchasing, LLC Sally DeSonia

Diversified Insurance Liz Claiborne Inc. Robert H. RoseBrian Duerden Mike Lloyd Rowland HallDutch Bros. Coffee Logan Waste Management Annette Royle-MitchellSteven B. Dwyer Mary Kay Office Dr. Kenneth L. SchaecherHenry W. & Leslie M. Eskuche

Charitable FoundationRyan May Schreiber Foods Inc.

Eye Prosthetics of Utah, Inc. McCall Brewing Company Walt SchwarzWilliam Falconer Wayne McCormack Select ComfortCraig Fantozzi Mark W. McGuire Giselle SexsmithGordon Faulkner Merrill Lynch Erin SharpCharles T. & Nancy Ferries Microsoft Matching Gifts Program Charlotte D. ShelmanBruce Frey MidAmerican Energy Foundation Donald M. SkinnerBen E. Fulton MidAmerican Energy Holdings Co. Dale J. SkinnerDonna Gallo MKL Public Relations Gerald and Tammy SloanRobert Gardiner Katie J. Moeller Laurie A. SmithGeorgia Pacific Morgan Stanley Mabelle SmithShannon E. Gordon Paul Mraz Leslie E. SnavelyAshley P. Hafen MRC SnowieAnn L. Hawksworth Maren B. Mullin John G. SpencerHenry Walker Homes Michael H. Murphy Standard OpticalHighland Hair Academy John T. Neilson Starbucks Coffee Partner Giving

ProgramsCharles Hislop Jeff S. Newman Steiner Foundation, Inc.Kathleen Holding Susan L. Obbard Ranae StevensR. E. Holding David Orchard Stewart Education FoundationRyan K. Howell Packaging Corporation of America T. D. Williamson Inc.Idacorp Employees Yvonne S. Pauls Susan D. TewITI International Personnel Management Corp. Deborah ThackerErik Katz David L. Phillips Total Construction Inc.Kennecott Utah Copper

Matching Gift PlanRichard M. Potashner Uintah Refrigeration & Electrical,

LLCKing Family Foundation Scott L. Pranger US Bank Private Client and

OutreachKissler Family Foundation Premier Management Group, LC Utah Commercial Contractors IncKnights of Columbus, Utah

State CouncilPrescott Muir Architects, PC Utah Communications

David Kruse Questcor Pharmaceuticals Inc. Utah Fast Pass, IncPaul S. Lambert R & O Construction Utah Pride CenterNicholas A. Larsen Raymond Construction WalMart FoundationPeggy J. Lewis Richards, Brandt, Miller, Nelson

FoundationBrad E. Walton

Stephen D. Lewis Patrick Rockford Renee C. WeltyLighting Maintenance & Service Rocky Mountain Power Foundation Vern G. WolcottLin Manufacturing & Design N. Kim Rogers Glen A. Wyatt

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