MOVING FORWARD TOGETHER Annual Report 2011
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 connected 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
2011 BOARD OF TRUSTEES Bob Harmon, Board Chairman Cecil Hedger, Secretary
Nicole Lengel, Treasurer Annette Royle-Mitchell, Chapter President
Richard Baringer, M.D. Tracy Crowell Richard Flint John Foley, M.D. Jay Gurmankin Jeana Hutchings
Safia Keller Cindy Kindred Philip McCarthey Jordan Needles Todd Oldroyd Irene Petrogeorge
2 | Annual Report 2011
Colleen Roberts John Rose, M.D. Ann Sasich Sheila Steiner Danny Velasquez Debbie Worthen
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
WHAT IS MS?
The 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.
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.
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.
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! 3
FUNDING THE MISSION FY11
Special Events Less Benefit to Donor Costs Net Special Events Revenues
$2,358,395 -304,450 2,053,945
$2,142,289 -245,299 1,897,060
Membership & Contributions Legacies Received at National (other than legacies) Total Other Revenue Total Public Support & Other Revenues
346,400 1,722 34,579 117,884 2,554,530
408,044 0 26,518 21,175 2,352,797
Local Program Services National Program & Research Expense Additional Research Contribution Total Program Services & Research Supporting Services Fundraising Administration Total Supporting Services
1,339,369 813,071 20,000 2,172,440
1,217,778 659,486 85,200 1,962,464
287,693 73,467 361,160
237,530 72,882 310,412
20,930 1,102,514 $1,123,444
79,921 1,022,593 $1,102,514
Change in Net Assets Net Assets, beginning of year Net Assets, end of year
4 | Annual Report 2011
For the fourth year, 86¢ or more of every dollar raised directly supported the cause.
national programs & cutting-edge research
support for people impacted by MS
fundraising & admin
OUT OF EVERY DOLLAR DONATED IN 2011 … 53% went to support people impacted by MS including informational resources, financial assistance, programs to enhance daily life, educational seminars for clients and professionals, and wellness programs 33% spent on national programs and cuttingedge 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%
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
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
6 | Annual Report 2011
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 recognized 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
Time and Talent
Engaged 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 MS
Implemented 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.
Met 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 MS
Generated 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 including a local client highlighted by the Society in a New York Times magazine special insert.
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.
Courtesy Laura Seitz/Deseret News
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 implementing new ways to improve quality of care for those with the disease.
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 Department 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!
“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.”
“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. Gael Yonnet, Society Fellow 8 | Annual Report 2011
– Dr. John Foley, Director of Rocky Mountain MS Clinic
The National MS Society is one of the largest funders of MS research and education in the world.
Research to Stop, Prevent and Repair
Contributed $441,528 to the Societyâ€™s $40 million investment in 2011 that funds 325 of the most promising MS research projects around the world.
Held 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.
MS in Children
Named 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 comprehensive database will be a valuable tool for research and will also assist investigators in finding what causes MS.
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. 9
ADDRESSING THE CHALLENGES OF EACH PERSON LIVING WITH MS Out-of-pocket costs for MS treatments can be $900-$3,000/month or more. Financial Assistance
Met 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. Courtesy SelkoPhoto
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
10 | Annual Report 2011
Expanded in-home care management by a licensed clinical social worker to include partnerships with Idaho organizations and continued with the Chapter’s long standing partners in Utah.
Partnered with organizations to connect families with community resources extending the Chapter’s reach and maximizing budgeted resources.
Trained 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 connections with the MS community.
When one person lives with MS, it affects the whole family. College Scholarships
Awarded $21,000 in college scholarships to 12 students in Utah and Idaho including the first Val A. & Edith D. Green scholarship 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.
Held three couples’ retreats (Boise, Price, St. George) led by relationship experts. Each program provided the 66 participants with ways to better support their partner. The program was funded by a grant from the U.S. Department of Health and Human Services.
Continued 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.
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 dayto-day and romantic aspects of marriage, acceptance of life with the disease and frustrations surrounding 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 11
DONORS 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 Federal Credit Union Friends of Multiple Sclerosis Society
McCarthey Family Foundation Tuffli Family Foundation
$25,000-$49,999 Questar Corporation
Ray and Tye Noorda Foundation
$10,000-$24,999 Bingham Cyclery Biogen Idec Frances W. Burton Foundation Community Health Charities of Utah, Inc George S. and Dolores Dore Eccles Foundation EMD Serono Inc. FedEx
Kimberly Gerard Swire Coca-Cola, USA Huntsman International LLC Teva Neuroscience, Inc. McNamara Purcell Foundation University of Utah Department of Neurosciences Miller Motorsports Park VLCM Mountain America Credit Union My Good Fund Trust Salt Lake Magazine
C. Scott & Dorothy E. Watkins Foundation
Kennecott Utah Copper Charitable Foundation L3 Communications
Ann & Joe Sasich
$5,000-$9,999 Eileen Abend Acorda Therapeutics, Inc. Allstate Foundation Associated Food Stores, Inc. ATS Automation Tooling Systems Bracewell & Giuliani CBH Homes Fidelity Charitable Gift Fund
Merit Medical Systems, Inc. Larry H. Miller Group Oculoplastic Surgery Inc
Goldman, Sachs & Co.
Real Salt Lake LLC
Rocky Mountain MS Clinic
Orbit Irrigation Products, Inc. Roy Pagenkopf Pure Protein
Silicon Valley Community Foundation Specialized Emily Spencer Station Park CenterCal, LLC William L. Townsend University Guest House University of Utah Athletic Department Vanguard Charitable Endowment Wasatch Advisors
$2,500-$4,999 AFS Becky Allan Shirley K. Angel Bayer HealthCare Pharmaceuticals Chris Blanchat Bonneville Cycling Club Jeff & Helen Cardon
Brennan Holdings Holland & Hart LLP Humana, Inc. Hunt Electric Integra Telecom KBOI TV2 Logan City Police Dept.
Church of Jesus Christ of Latter Day Saints Barbara & Gus Colessides
Mary S. McCarthey
Lawrence T. Dee & Janet T. Dee Foundation Ezekiel R. Dumke Jr. eBay Foundation Employee Gift Matching Program Epcon Partners, Inc. E-Trade Financial Brandon Grizzell Harmony Home Health Hospice Todd Herfield
Snake River Hydraulics Spectra Management Scott W. and Betsy Thornton Family Tour of Utah Andrea K. Townsend Truist Altruism Connected Twin Falls Area Chamber of Commerce Utah Highway Patrol
Herbert I. & Elsa B. Michael Foundation Stephen P. Miles
Jamie Mitros Peak Broadcasting
Wheeler Foundation William Wishnick Foundation
Penna Powers Brian Haynes
Wolcott, Vern and Marva Charitable Foundation Zions Bank
Portland General Electric Road Respect/ Zero Fatalities Dr. John W. Rose SelectHealth
Wells Fargo Bank
$1,000-$2,499 Advance Displays Advocate Hospice LLC
Roy Bartee, III Debbie & Jeff Barton
Cascade Refining, Inc. Chevron Humankind Matching Gift Program Bernie & Sue Allen Kevin Bauer ChevronWest Credit Union AMP Security Bear River Mutual Christ United Methodist Church Anonymous Becton Dickinson and Company Boyd Christiansen Jason Angel Fredrik M. Bergold Citydeals Sales & Services LLC Argent Automotive Systems, Inc. Christopher A. Bias Ronda Conger Nichole Arguinchona Bioness Conservice ATK Matching Gift Program Blackbottoms Cycle Wear Robert Corcoran Autoliv ASP, Inc. Bloomberg Financial CR England AXA Foundation Rachelle Brower Tracy Crowell B.L.M.F Brown Mackie College David Cumming Bad Ass Coffee Wolfgang Buehler Kristi T. Cumming Bank of America Matching Gift Cache County Sally P. Davis Dr. Melinda Bargreen Cache Valley Electric Co. Davis School District Matching Barnes Group Carepoint Group Purchasing, LLC Sally DeSonia Foundation Inc.
DONORS Diversified Insurance Brian Duerden Dutch Bros. Coffee Steven B. Dwyer Henry W. & Leslie M. Eskuche Charitable Foundation Eye Prosthetics of Utah, Inc. William Falconer Craig Fantozzi Gordon Faulkner Charles T. & Nancy Ferries Bruce Frey Ben E. Fulton Donna Gallo Robert Gardiner Georgia Pacific Shannon E. Gordon Ashley P. Hafen Ann L. Hawksworth Henry Walker Homes Highland Hair Academy Charles Hislop Kathleen Holding R. E. Holding Ryan K. Howell Idacorp Employees ITI International Erik Katz Kennecott Utah Copper Matching Gift Plan King Family Foundation Kissler Family Foundation Knights of Columbus, Utah State Council David Kruse Paul S. Lambert Nicholas A. Larsen Peggy J. Lewis
Liz Claiborne Inc. Mike Lloyd Logan Waste Management Mary Kay Office Ryan May
Robert H. Rose Rowland Hall Annette Royle-Mitchell Dr. Kenneth L. Schaecher Schreiber Foods Inc.
McCall Brewing Company Wayne McCormack Mark W. McGuire Merrill Lynch Microsoft Matching Gifts Program MidAmerican Energy Foundation MidAmerican Energy Holdings Co. MKL Public Relations Katie J. Moeller Morgan Stanley Paul Mraz MRC Maren B. Mullin Michael H. Murphy John T. Neilson
Walt Schwarz Select Comfort Giselle Sexsmith Erin Sharp Charlotte D. Shelman Donald M. Skinner Dale J. Skinner Gerald and Tammy Sloan Laurie A. Smith Mabelle Smith Leslie E. Snavely Snowie John G. Spencer Standard Optical Starbucks Coffee Partner Giving Programs Jeff S. Newman Steiner Foundation, Inc. Susan L. Obbard Ranae Stevens David Orchard Stewart Education Foundation Packaging Corporation of America T. D. Williamson Inc. Yvonne S. Pauls Susan D. Tew Personnel Management Corp. Deborah Thacker David L. Phillips Total Construction Inc. Richard M. Potashner Uintah Refrigeration & Electrical, LLC Scott L. Pranger US Bank Private Client and Outreach Premier Management Group, LC Utah Commercial Contractors Inc Prescott Muir Architects, PC Utah Communications
Questcor Pharmaceuticals Inc. R & O Construction Raymond Construction Richards, Brandt, Miller, Nelson Foundation Stephen D. Lewis Patrick Rockford Lighting Maintenance & Service Rocky Mountain Power Foundation Lin Manufacturing & Design N. Kim Rogers
Utah Fast Pass, Inc Utah Pride Center WalMart Foundation Brad E. Walton Renee C. Welty Vern G. Wolcott Glen A. Wyatt
cureMSutah.org | cureMSidaho.org | facebook.com/MSutahIdaho | 800-344-4867