Annual Report 2012

The Power ofCoNNeCTioNs

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 Multiple Sclerosis 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).

Today, through a 50-state network of chapters and a collective of passionate people, the Society educates, inspires and empowers. We seek a world free of MS.

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.

ABOUT MSMultiple sclerosis is a chronic, unpredictable disease of the central nervous system. 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, se-verity and specific symptoms of MS in any one person cannot yet be predicted. MS stops people from moving. We exist to make sure it doesn’t.

• Two to three times more women than men are diagnosed with MS, but in men, the disease often takes a more aggressive course.

• MS affects 2.1 million people worldwide.

• Our chapter has one of the highest incidence rates in the country.

• More than 6,600 people with MS have sought services from our chapter.

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

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Dear Friends,

Every day we are helping people impacted by MS and joining forces with others in our community who want to do something about MS. While multiple sclerosis specifically destroys connections within the brain, our connections with one another are making us stronger!

By working together, we are truly assisting more people in more meaningful ways, stretching our donor dollars further, and engaging more volunteers, participants, advocates, sponsors and community partners in our mission.

While this report highlights many of our accomplishments from 2012, some of our work is hard to quantify like the feeling of hope when parents of a newly diagnosed child learn about advancements in MS research from partnerships around the world, the sense of mobility when a once homebound client can leave because we worked with community partners to outfit the family car for his disability, the promise of quality care when a young physician begins his career as a Society Fellow working alongside today’s experts, or the camaraderie found as a first-time Bike MS participant riding in honor of his late brother finds strength in joining forces with others.

These immeasurable forces propel us forward each day in our efforts to create a world free of MS. Thank you for your support!

Bob Harmon, Chairman Annette Royle-Mitchell, President

Bob Harmon, Board Chair (2012)Safia Keller, Chair-Elect (2013)Annette Royle-Mitchell, Chapter President

Nicole Lengel, Treasurer Cecil Hedger, Secretary

Richard Baringer, M.D.Tracy CrowellRichard FlintJohn Foley, M.D.Sarah FoltmanJay Gurmankin

Jeana HutchingsCindy KindredPhilip G. McCartheyJordan NeedlesTodd OldroydIrene Petrogeorge

Colleen RobertsJohn Rose, M.D.Ann SasichSheila SteinerDanny Velasquez

2012 BOARD OF TRUSTEES

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Chapter Financials

All statistics from Fiscal Year 2012 (October 1, 2011 – September 30, 2012)

The Chapter sought reductions in expenses including:

∫ Consolidation of office space – an 18% expense reduction. Relocation also increased visibility in the community and placed offices in more prominent business areas.

∫ Offset about $70,000 of event costs with value-in-kind donations from local community partners.

∫ Through expense reductions, and fundraising growth, local programs and services offered by the Chapter increased by 8%.

TOTAl ExpENSES

Management & General $73,090

Fundraising - $353,778Research - $481,203National Programs - $378,088

Local Programs & Services $1,360,450

52%

14%

18%

13%3%

$2,646,609

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TOTAl INCOME

In 2012, there was growth in participation and giving including:

∫ Bike MS crested $1.6 million for the first time since 2008.

∫ Corporate relationships increased corporate giving by 5% in 2012.

86%

$2,440,058

1%

Misc. Income - $32,363

Individual, Corporate, & Foundation Giving - $320,274

Events - $2,087,421

13%

MAjOR EvENTS

Bike MS: Harmons Best Dam Bike Ride $1,622,087* with 2,830 cyclists Walk MS Utah, presented by Questar $310,000* with 5,100 walkers Walk MS Idaho, presented by CBH Homes $142,000* with 1,610 walkers Bike MS: Road, Sweat & Gears $42,261* with 80 cyclists Dinner of Champions presented by the McCarthey Family – $109,575* Women on the Move presented by the McCarthey Family – $127,110*

*Gross Income

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Mobilizing people to Do Something About MS

with the help of talented volunteers and dedicated supporters, we stretch our donor dollars, connect and help more people in the community and spread Ms awareness.

Volunteers in ActionFrom scouts, teenagers and families to corporate partners like Sam’s Club and Questar, 934 volunteers gave more than 10,000 hours of service – the equivalent of more than 5 fulltime employees. Volunteers assisted in all areas of the Chapter, from event day labor to professional services to spreading awareness in local communities as MS Ambassadors.

“It is such a ‘feel good’ weekend for us. It is a pleasure and keeps us coming back each year. I have learned so much about MS from other volunteers and riders and from the MS Society - this is just a small way to help fight MS!“ Joni Spidle, Logan, Utah Bike MS Volunteer

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in the Media MS awareness was spread by people sharing their MS story and why they are involved with the Society. Highlights included an hour-long live broadcast of Walk MS Boise on KBOI2 (CBS) as well as additional TV, radio, newspaper and digital placements throughout the year with an estimated reach of more than 5 million people.

Advocating ChangeChapter advocates met with elected representatives, sent letters and attended public policy meetings. Nationally efforts resulted in $5 million in new federal funding for MS research, changes to Social Security Disability Insurance to include an aggressive form of MS, and helped bring an end to Medicare’s so-called “Improvement Standard” thereby putting needed services back in the reach of people with MS.

“I’ve enjoyed being an MS advocate because I now realize that I CAN make a difference and help educate our leaders of this disease that affects so many of us.” Kelly R. King, Salt Lake City MS Advocate

“When KBOI2 went live on the day of Walk MS, we reached even more people in the community. It boosted me up to know they were there and it made a difference in awareness about this disease. It finally showed that we have a large group of people dealing daily with MS and we will not be defeated by it! Linda Slupe, Boise Walk MS Participant

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Driving MS Research and Improving lives

efforts in Ms research are changing what was once an untreatable disease in 1993 to one where there are now nine treatment options for the most common form of the disease.

New Therapy ApprovedIn 2012, the FDA approved teriflunomide (Aubagio®), the second oral therapy and ninth disease-modifying treatment for people with relapsing forms of MS. With additional promising therapies in the pipeline – more than at any other time in history – this is an encouraging time in MS research.

investing in researchThe Society overall invested more than $44 million (nearly a10% increase from 2011) to support 350 new and ongoing research projects. Locally, the Salt Lake City diagnostic company Lineagen received $622,000 from Fast Forward L.L.C., a research entity of the Society, to study and develop a diagnostic test for biomarkers in MS to better help physicians with diagnoses.

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healthcare heroesSociety-funded researchers from the MS Pediatric Data Coordinating and Analysis Center at the University of Utah were recognized as “Healthcare Heroes” by Utah Business Magazine with its annual Innovation in Healthcare award. Their work analyzes data collected from the Society’s 10 Pediatric Centers located throughout the country to try to unlock the mysteries of MS and its impact on children.

Driving MS Research and Improving lives

“The work being done by Drs. Rose and Casper will change how the medical community looks at pediatric MS, an often difficult disease to diagnose and treat in adults let alone in children who are naturally going through changes as they grow and mature.” Annette Royle-Mitchell Chapter President

Next Generation of Ms expertsThe Chapter’s first Clinical Fellow, Dr. Gael Yonnet, concluded his year at the University of Utah where, in addition to working closely with patients, he completed a groundbreaking cost analysis of symptomatic therapies that will help doctors provide more affordable choices for medications. He also furthered the discussion and education in the medical community on the use of Botox in MS for bladder issues, and promoted quality care for people with MS by presenting at more than 20 professional meetings.

“This was an important phase in my medical education. I plan to utilize the tremendous knowledge I have acquired from this fellowship throughout my career and help bring quality specialized care to more people with MS.” Dr. Gael Yonnet Society Fellow 2012

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Direct financial AssistanceThe cost of MS can create additional hardships. The Chapter provided assistance to 71 low to moderate-income families to help them overcome challenges presented by MS. Funds were used to help with home/auto modifications, assistive technology devices, durable medical equipment, professional counseling and emergency housing expenses (eviction notices, utility shut off).

College scholarshipsFor some families impacted by MS, the possibility of sending a child to college is daunting – from added cost with an expensive disease to loss of a special caregiver. To help, $23,500 in scholarships were awarded to 11 deserving students from our chapter.

Clinical outreachImproving clinical care is a priority for the Society. Chapter outreach included focusing on rural medical centers, continuing education for more than 200 healthcare professionals and working with MS clinics to implement new ways to improve quality care for people with MS.

Enhancing Care for people Impacted by MS

The society offers a variety of local programs and services to help everyone affected by Ms move their lives forward.

“Because of my MS, my daughter had to grow up quickly starting when she was just seven years old. She has always helped me with my MS and also around the house more than any child should when young. It was an honor for her to receive the Society Scholarship.” Candi Vaughn, Fruitvale, Utah Mother of Scholarship Recipient

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Enhancing Care for people Impacted by MS

innovative ProgramsMultiple educational topics were covered throughout the year and presented via teleconferences, webinars and on-site programs, including the Improving Quality of Life series held at the University of Utah (Salt Lake City) and the St. Luke’s Elks monthly education series (Meridian, ID).

The Chapter also hosted Free from Falls, an eight-week national pilot program held at Dixie Regional Medical Center (St. George, UT) that helped people with balance issues, a common implication of MS, learn how to alleviate the risk of falling in their homes and community.

improving Quality of LifeWorking together with licensed professionals from the community, the Chapter helped individuals improve their quality of life.Efforts included helping them find ways to remain in their home and overcome challenges imposed by MS through in-home visits, modifications for safety and mobility, and help with tasks of daily living.

wellness ProgramsMS stops people from moving. Self-Improvement Grants were awarded to 35 qualified recipients for physical therapy, exercise classes, nutritional counseling and other eligible activities. In addition, the third annual MS Smart Moves, a health and wellness program was utilized by 24 clients.

Making ConnectionsConnecting with others who have MS fosters additional support and education to proactively manage MS. The Chapter trained 3 new leaders to start self-help groups for a total of 12 active groups in the Chapter (4 in Idaho, 8 in Utah), added a peer support volunteer, and introduced more than 150 new individuals – new to MS and/or the Society – to valuable information, programs and services provided by the Chapter and its community partners.

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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 Credit Union Tuffli Family FoundationMcCarthey Family Foundation Wal-Mart Foundation/Sam’s ClubThe Ray and Tye Noorda Foundation

$25,000-$49,999Community Health Charities of Utah Questar Corporation

$10,000-$24,999Acorda Therapeutics, Inc George S. and Dolores

Dore Eccles FoundationMountain America Federal

Credit UnionAnonymous EMD Serono, Inc Orbit Irrigation Products, IncAutomation Tooling Systems, Inc FedEx Sorenson Legacy FoundationBingham Cyclery Huntsman International LLC Greg SpencerBiogen Idec KBOI2 C. Scott & Dorothy E. Watkins

FoundationClear Channel Kennecott Utah Copper

Charitable FoundationComcast Xfinity Phil & Sandra McCarthey

$5,000-$9,999Associated Food Stores, Inc Larry H. Miller Dealerships SpecializedBonneville Cycling Club Novartis Sun Products CorporationBrennan Holdings Oculoplastic Surgery, Inc Swire Coca- Cola, USACBH Homes Peak Broadcasting Teva Neuroscience, IncLawrence T. & Janet Dee

FoundationPowerade Treasure Valley B.A.M.S

Digital Bytes Pure Protein University Guest HouseEdwards Lifescience Real Salt Lake LLC V.L.C.M..Kimberly Gerard Rocky Mountain MS Clinic

Keynetics, Inc Ann & Joe Sasich

Funding the Mission

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$2,500-$4,999A E Centurion Bank (American Express)

Goldman, Sachs & Co. Richards Brandt Miller Nelson

A E Federal Savings Bank (American Express)

Harmony Home Health Service LLC

Schreiber Foods, Inc

Advance Displays Holland & Hart LLP SelectHealthShirley K. Angel Hunt Electric, Inc Stephen SmithBayer HealthCare Pharmaceuticals Intermountain HealthCare Pete TaylorBeneficial Financial Group Kacey L. Kalian Twin Falls Chamber

of CommerceBracewell & Giuliani Kissler Family Foundation, Inc Utah Highway PatrolCache Valley Ice Mary S. McCarthey vitaminwaterJeff Cardon Merrick Bank Corporation Weber State UniversityChurch of Jesus Christ

of Latter Day SaintsHerbert I. & Elsa B. Michael

FoundationWestern Neurological

Associates, PCCrowell Advertising James H. Mitros Wheeler FoundationEpcon Partners, Inc Winston C. Mitchell Family

FoundationAnnette Wood, RN

Fit Stop Physical Therapy & Health Club

Katie Moeller

$1,000-$2,499AARP Cache Valley Electric Co. Henry & Leslie Eskuche

FoundationEileen Abend Carepoint Group Purchasing, LLC William FalconerActive Network Dennis Chambers Craig FantozziTom Adkins Roderick Chavez Gordon FaulknerFranklin & Elizabeth F. Alex James P. Chiasson Charles T. FerriesBernie Allen Greg G. Cole Jered FratelloAllstate Foundation Barbara & Gus Colessides Fraternal OrderDon S. Ballard Connie Corrado Friends of Multiple Sclerosis

SocietyDr. J. Richard Baringer CR England General AtomicsRoy M. Bartee, III Sally P. Davis Georgia PacificBD Medical Deseret Health Group Bill GordonFredrik M. Bergold Sally DeSonia Susanne GordonSandy Blalock DHI Computing Service Paul GrayBlank Family Foundation Discover Financial Service Gullo Properties LLCKathy Brainerd Ezekiel R. Dumke, Jr. Richard HadlockRichard Bryant Employees First Credit Union

Funding the Mission

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Catherine Harris MidAmerican Energy Foundation Skinworks School of Advanced Skincare

Lee Harwood Stephen P. Miles Mabelle Smith Ann L. Hawksworth Morgan Stanley c/o

Cybergrants, IncMary S. Souvall

Henningsen Cold Storage Co. Nelnet, Inc Spencer CottleBonnie L. Higgins Jeff Newman Pete J. SpransyAnn Hoffman Erma Nielsen Steiner Foundation, IncKathleen Holding Sharyl Noble Alice L. SteinerR. E. Holding Northrop Grumman Stanley O. StensrudHorizon Milling LLC Ocef, Inc Stewart Education FoundationJohn Hoyne Alan Overmoe T D Williamson, IncIasis Healthcare Paramount Title Corporation The PI FundIdacorp Employees Yvonne S. Pauls Betsy ThorntonDon L. Ipson Andrew Peterson Susan TorontoJerry Seiner Christopher Kia Donna Phebus Total Construction, IncAndi Johnson Michael T. Philbrick Andrea K. TownsendAnn & Phil Johnson Richard M. Potashner Dr. Anthony Turhollow, Jr.Erik Katz Praxis Properties LLC Uintah Refrigeration &

Electrical, LLCKing Family Foundation Prescott Muir Architects, PC UPS Foundation, IncKnights of Columbus Travis N. Pugh Utah Fast Pass, IncLarry Krystkowiak Questcor Pharmaceuticals, Inc Utah Pride CenterBryan Larsen R & O Construction Varian Medical SystemsMary Kay Lazarus Raymond Construction Co. Lammert VeenstraLighting Maintenance & Service David Reed Veritas FundingLin Manufacturing & Design Republic Bank VRX, LLCLogan City Enviroment Dept. Thomas Reycraft Katie WaltonLois & Friends LLC Ridley's Wells Fargo Bank, N.A.Lundberg & Associates Michael E. Roberts Renee C. WeltyMcCall Brewing Dr. John W. Rose Western National Trust CompanyLyn McCarter Tim J. Roush Craig A. WhiteMichael McHugh Rowland Hall John A. WhiteMcJunkin Red Man

CorporationSchwab Charitable Fund Roger White

Melba McKenzie Charitable Trust

Erin Sharp The William Wishnick Foundation

Media Ventures Group LLC Dustin Skaggs Karen YatesMelissa Lester Dale J. Skinner Zions Management

Services Company

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