The Power of CONNECTions
Annual Report 2012
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 ARE The 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 MS Multiple 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, severity 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! 2 | Annual Report 2012
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 todayâ€™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
2012 BOARD OF TRUSTEES Bob Harmon, Board Chair (2012) Nicole Lengel, Treasurer Safia Keller, Chair-Elect (2013) Cecil Hedger, Secretary Annette Royle-Mitchell, Chapter President Richard Baringer, M.D. Tracy Crowell Richard Flint John Foley, M.D. Sarah Foltman Jay Gurmankin
Jeana Hutchings Cindy Kindred Philip G. McCarthey Jordan Needles Todd Oldroyd Irene Petrogeorge
Colleen Roberts John Rose, M.D. Ann Sasich Sheila Steiner Danny Velasquez
Chapter Financials Total Expenses $2,646,609
The Chapter sought reductions in expenses including:
3% 13% 52%
Local Programs & Services $1,360,450 National Programs - $378,088 Research - $481,203 Fundraising - $353,778 Management & General $73,090
∫ 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-inkind donations from local community partners. ∫ Through expense reductions, and fundraising growth, local programs and services offered by the Chapter increased by 8%.
All statistics from Fiscal Year 2012 (October 1, 2011 – September 30, 2012)
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Total Income $2,440,058 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.
Events - $2,087,421 Individual, Corporate, & Foundation Giving - $320,274 Misc. Income - $32,363
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 5
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 Action
From 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 6 | Annual Report 2012
Chapter 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
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.
“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
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 Approved
In 2012, the FDA approved teriflunomide (AubagioÂŽ), the second oral therapy and ninth disease-modifying treatment for people with relapsing forms of MS. With additional promising therapies in the pipeline â€“ more than at any other time in history â€“ this is an encouraging time in MS research.
Investing in Research
The 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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Society-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. “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 Experts
The 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 9
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. Direct Financial Assistance
The 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).
For 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. “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
Improving 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.
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Multiple 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 Life
Working 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.
MS 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.
Connecting 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. 11
Funding the Mission 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-$99,999 Cyprus Credit Union McCarthey Family Foundation The Ray and Tye Noorda Foundation
Tuffli Family Foundation Wal-Mart Foundation/Samâ€™s Club
$25,000-$49,999 Community Health Charities of Utah
$10,000-$24,999 Acorda Therapeutics, Inc
George S. and Dolores Dore Eccles Foundation Anonymous EMD Serono, Inc Automation Tooling Systems, Inc FedEx Bingham Cyclery Huntsman International LLC Biogen Idec KBOI2
Clear Channel Comcast Xfinity
Mountain America Federal Credit Union Orbit Irrigation Products, Inc Sorenson Legacy Foundation Greg Spencer C. Scott & Dorothy E. Watkins Foundation
Kennecott Utah Copper Charitable Foundation Phil & Sandra McCarthey
$5,000-$9,999 Associated Food Stores, Inc Bonneville Cycling Club Brennan Holdings CBH Homes Lawrence T. & Janet Dee Foundation Digital Bytes Edwards Lifescience
Larry H. Miller Dealerships Novartis Oculoplastic Surgery, Inc Peak Broadcasting Powerade
Specialized Sun Products Corporation Swire Coca- Cola, USA Teva Neuroscience, Inc Treasure Valley B.A.M.S
Pure Protein Real Salt Lake LLC
University Guest House
Rocky Mountain MS Clinic
Ann & Joe Sasich
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$2,500-$4,999 A E Centurion Bank (American Express) A E Federal Savings Bank (American Express) Advance Displays Shirley K. Angel Bayer HealthCare Pharmaceuticals Beneficial Financial Group
Goldman, Sachs & Co.
Richards Brandt Miller Nelson
Harmony Home Health Service LLC Holland & Hart LLP Hunt Electric, Inc Intermountain HealthCare Kacey L. Kalian
Schreiber Foods, Inc
Bracewell & Giuliani Cache Valley Ice Jeff Cardon Church of Jesus Christ of Latter Day Saints Crowell Advertising Epcon Partners, Inc
Kissler Family Foundation, Inc Mary S. McCarthey Merrick Bank Corporation Herbert I. & Elsa B. Michael Foundation James H. Mitros Winston C. Mitchell Family Foundation
Fit Stop Physical Therapy & Health Club
SelectHealth Stephen Smith Pete Taylor Twin Falls Chamber of Commerce Utah Highway Patrol vitaminwater Weber State University Western Neurological Associates, PC Wheeler Foundation Annette Wood, RN
$1,000-$2,499 AARP Eileen Abend Active Network Tom Adkins Franklin & Elizabeth F. Alex Bernie Allen Allstate Foundation Don S. Ballard Dr. J. Richard Baringer Roy M. Bartee, III BD Medical Fredrik M. Bergold Sandy Blalock Blank Family Foundation Kathy Brainerd Richard Bryant
Cache Valley Electric Co.
Henry & Leslie Eskuche Foundation Carepoint Group Purchasing, LLC William Falconer Dennis Chambers Craig Fantozzi Roderick Chavez Gordon Faulkner James P. Chiasson Charles T. Ferries Greg G. Cole Jered Fratello Barbara & Gus Colessides Fraternal Order Connie Corrado Friends of Multiple Sclerosis Society CR England General Atomics Sally P. Davis Georgia Pacific Deseret Health Group Bill Gordon Sally DeSonia Susanne Gordon DHI Computing Service Paul Gray Discover Financial Service Gullo Properties LLC Ezekiel R. Dumke, Jr. Richard Hadlock Employees First Credit Union
MidAmerican Energy Foundation Skinworks School of Advanced Skincare Lee Harwood Stephen P. Miles Mabelle Smith Ann L. Hawksworth Morgan Stanley c/o Mary S. Souvall Cybergrants, Inc Henningsen Cold Storage Co. Nelnet, Inc Spencer Cottle Bonnie L. Higgins Jeff Newman Pete J. Spransy Ann Hoffman Erma Nielsen Steiner Foundation, Inc Kathleen Holding Sharyl Noble Alice L. Steiner R. E. Holding Northrop Grumman Stanley O. Stensrud Horizon Milling LLC Ocef, Inc Stewart Education Foundation John Hoyne Alan Overmoe T D Williamson, Inc Iasis Healthcare Paramount Title Corporation The PI Fund Idacorp Employees Yvonne S. Pauls Betsy Thornton Don L. Ipson Andrew Peterson Susan Toronto Jerry Seiner Christopher Kia Donna Phebus Total Construction, Inc Andi Johnson Michael T. Philbrick Andrea K. Townsend Ann & Phil Johnson Richard M. Potashner Dr. Anthony Turhollow, Jr. Erik Katz Praxis Properties LLC Uintah Refrigeration & Electrical, LLC King Family Foundation Prescott Muir Architects, PC UPS Foundation, Inc Knights of Columbus Travis N. Pugh Utah Fast Pass, Inc Larry Krystkowiak Questcor Pharmaceuticals, Inc Utah Pride Center Bryan Larsen R & O Construction Varian Medical Systems Mary Kay Lazarus Raymond Construction Co. Lammert Veenstra Lighting Maintenance & Service David Reed Veritas Funding Lin Manufacturing & Design VRX, LLC Republic Bank Logan City Enviroment Dept. Katie Walton Thomas Reycraft Lois & Friends LLC Wells Fargo Bank, N.A. Ridley's Lundberg & Associates Renee C. Welty Michael E. Roberts McCall Brewing Western National Trust Company Dr. John W. Rose Lyn McCarter Craig A. White Tim J. Roush Michael McHugh John A. White Rowland Hall McJunkin Red Man Roger White Schwab Charitable Fund Corporation The William Wishnick Melba McKenzie Erin Sharp Foundation Charitable Trust Karen Yates Media Ventures Group LLC Dustin Skaggs Melissa Lester Zions Management Dale J. Skinner Services Company Catherine Harris
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