N M S -W C D A H FY 2006 Annual Report...2006 Annual Report 262.369.4400 • 800.242.3358 MULTIPLE...

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2006 Annual Report www.wisms.org 262.369.4400 800.242.3358 NATIONAL MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER 1120 JAMES DRIVE, SUITE A HARTLAND, WI 53029 FY A World Free of MS - This is Why We’re Here

Transcript of N M S -W C D A H FY 2006 Annual Report...2006 Annual Report 262.369.4400 • 800.242.3358 MULTIPLE...

Page 1: N M S -W C D A H FY 2006 Annual Report...2006 Annual Report 262.369.4400 • 800.242.3358 MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER 1120 JAMES DRIVE, SUITE A • HARTLAND, WI 53029

2006 Annual Report

www.wisms.org262.369.4400 • 800.242.3358

NATIONAL MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER

1120 JAMES DRIVE, SUITE A • HARTLAND, WI 53029FY

A World Free of MS -This is Why We’re Here

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Page 3: N M S -W C D A H FY 2006 Annual Report...2006 Annual Report 262.369.4400 • 800.242.3358 MULTIPLE SCLEROSIS SOCIETY-WISCONSIN CHAPTER 1120 JAMES DRIVE, SUITE A • HARTLAND, WI 53029

A message from the PresidentIn FY2006, the National MS Society – Wisconsin Chapter wasonce again on the forefront of research, advocacy, and clientprograms. We made a conscious decision to “Act NOW” andimpact the lives of the 10,000+ people in Wisconsin who livewith multiple sclerosis (MS). With your help we were able to change the face and future of MS.

By acting NOW to fund more research, the National MS Societyfostered advances that led to the approval of a new MS drugtherapy and progress in developing oral treatments, laboratorystrides in repairing nerve tissue, and a deeper understanding ofwhat makes people at risk for MS. Even greater treatment advances can be expected from thelaunch of an important new research training program focusing on MS rehabilitation and fromsix new Pediatric MS Centers of Excellence nationwide.

By acting NOW to change public policy, Governor Jim Doyle, working with the state legislature, signed into law Act 71, creating a voluntary charitable option to benefit multiplesclerosis programs in Wisconsin.

By acting NOW to soften the impact of MS, our MS Camp for Kids, MS Scholarship andHoliday Giving programs ensured that hundreds of families throughout the state would haveone less thing to worry about.

The incredible progress highlighted above and on the following pages is because of the thousands of dedicated volunteers and generous donors who share with us one powerfulgoal, To act as if what you do NOW makes a difference - it does!

I can’t remember a time when I’ve been more proud to be involved with the National MSSociety and to live in Wisconsin. Congratulations to you for the outstanding accomplishmentsin fiscal year 2006. This was truly a year to celebrate!

NOW is the time for a world free of MS!

Sincerely,

Colleen G. KaltPresident & CEO

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Client Services• More than 6,000 people with MS received assistance, information, community referrals

and support from our outreach, information and referral, and peer support staff.

• Eighty families were helped through our financial assistance program.

• The 2006 Holiday Giving program benefited 64 families and 126 children.

• More than 1,000 people participated in our Circle of Hope self-help groups, which number more than 40 throughout the state, sharing information, receiving support and socializing with each other.

• Thirty children from families parented by a person living with MS attended MS Camp for Kids at Camp Minikani.

• The Chapter awarded 20 scholarships to college students who have MS or have a parent with MS.

• More than 450 people living with MS, along with their families and friends, participated in client conferences held in Green Bay, La Crosse, Madison, Pewaukee, and Stevens Point. They received up-to-date information on various MS-related topics, while listening to a variety of speakers, and networked with others who share similar experiences in their fight against MS.

• 185 people participated in the nationally sponsored “Knowledge is Power” educational program. Designed for people newly diagnosed who are unable to attend a session in-person, participants received weekly mailings on various issues related to MS.

• Joining with other families affected by MS, more than 800 participants took part in Family Day celebrations, held at the Milwaukee County Zoo and the Great Wolf Lodge Water Park in Wisconsin Dells.

• Chapter volunteers in three areas of the state made 200 “Friendly Visitor” visits to those with MS living in long-term care facilities.

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A World Free of MS -This is Why We’re Here

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Client Services• Sixty people with MS benefited

from participating in MS Caring Connection programs throughout the year.

• Chapter Peer Supporters, dedicatedvolunteers with MS, continued to provide support and counseling toothers affected by MS.

• During 2006 the Chapter added more than 2,500 new service providers to our database, bringingour total to 3,615. This informationwill provide our clients with accessto a wide variety of resources, ranging from neurologists to counselors to manufacturers of durable medical equipment.

• The Chapter has five affiliated MS Centers in area hospitals throughout Wisconsin.

• Through its physician outreach initiative, the Chapter has made ongoing visits to MS Centers and other healthcare facilities throughout the state, establishing relationships and providing information on MS and the Society.

“Never doubt that a small group of thoughtful,committed citizens can change the world.Indeed, it’s the only thing that ever has.”

- Margaret Mead

Wisconsin Act 71, passed by members of thestate legislature and signed into law byGovernor Doyle, created a voluntary, charitable giving option on Wisconsin stateincome tax forms to fund “health related programs” for people living with MS.

The bill creates an income tax charitableoption on Wisconsin income tax forms. Thisgiving opportunity is an important step for ourstate, because the rate of MS within Wisconsinis one of the highest in the country. MS is aunique issue for our residents and for theirfinancial health. It is a disease that costs nearly$500 million in lost wages and increased medical expenses for our state.

Donations will fund various services for people with MS, including home and vehiclemodifications, durable medical equipment,respite care, counseling, and therapy.

See the “Donations” section on your Wisconsin Income Tax form, and make your donation to “multiple sclerosis” (MS). You may donate all or some of your tax refund or add to your tax liability.

On your tax return...Make a Mark for MS.

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Act 71

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Development Highlights FY2006 proved to be an exciting year for the Wisconsin Chapter.Through the tireless efforts of countless individuals and community-minded corporations, the Chapter raised more than $5 million for a world free of MS. This was accomplishedthrough a variety of events and donor initiatives, including oneof the state’s premier bike tours, walks in 13 cities, two majorluncheons, innovative snowmobile and golf events, independentfundraisers and numerous individual gifts. The Chapter’s Board of Trustees has committed to full support of the Major andPlanned Gift Initiative, recognizing the importance of individual giving. Thanks to generous volunteers, donors and sponsors, the Chapter garnered the following to fight MS:

• More than $275,000 from planned gifts and bequests

• More than $1 million from non-event related gifts

• More than $1.45 million from the 23rd Annual MS 150 Best Dam Bike Tour, involving over 1,700 cyclists and volunteers

• More than $1.75 million from the 18th Annual MS Walk, involving over 10,000 volunteer participants

• More than $237,000 from the MS Snowmobile Tour, involving over 130 volunteer participants

• More than $245,000 from the 6th Annual MS Luncheon in Milwaukee, featuring Alan Osmond as keynote speaker and involving over 600 guests

More than $46,000 from the 1st Annual MS Luncheon in Madison, featuring Teri Garr as keynote speaker and involving over 250 guests

More than $96,000 from the 24th Annual MS Golf Invitational,involving over 110 golfers

More than $210,000 from over 55 Independent Fundraisers, coordinated and produced by volunteers throughout the state

A World Free of MS - This is Why We’re Here

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Teri Garr

Alan Osmond

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Advocacy Highlights• State legislators cut start ribbons at six MS walk sites during the spring of 2006 and saw

first-hand the effects of MS within their local communities.

• Governor Doyle proclaimed March 13-17, 2006 “MS Awareness Week,” throughout the state.

• Advocates against MS provided personal testimonials before the Medicaid Prior AuthorizationReview Panel, ensuring continued access to four FDA approved disease modifying therapies.

• An “Action Alert” network, including more than 500 volunteers, triggered countless phone calls, emails and personal visits with state legislators. These grassroots advocates successfullypersuaded the Wisconsin state legislature and Governor Doyle to create a charitable givingoption on Wisconsin state income tax forms for 2006 and beyond to fund MS “health related programs.”

• Volunteer advocates and staff visited members of the Wisconsin delegation in Washington D.C. to discuss MS related health issues. Topics discussed included opposition to Senate Bill 1955, also referred to as the “Health Insurance Marketplace Modernization and Affordibility Act of 2005,” which was later defeated.

• The Wisconsin Chapter was recognized at the National Leadership Conference in Orlando,FL as a 2006 Cavallo Award winner for overall Programming and Advocacy efforts, and was named a 2006 Chapter of Excellence in both Family Programs and Advocacy. Additionally, two dedicated Chapter volunteers received national recognition (see box).

• The Wisconsin Chapter was showcased in a photo cover and feature story entitled “Activists in Action,” in the August-September issue of InsideMS magazine. The story highlighted the significant accomplishments of volunteer advocates on behalf of people with MS in Wisconsin.

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Senator AlbertaDarling, Mequon,was named National VolunteerAdvocate of theYear. SenatorDarling was instrumental in the passage of Act 71, as well as in procuring

funding for MS diagnosis and educationwithin the Wisconsin Well WomanProgram.

Jeffrey Gingold,Milwaukee, was namedone of two finalists forNational Volunteer of the Year. In additionto serving as a peersupporter and Chaptervolunteer, Jeffrey’srecently publishedbook, “Facing theCognitive Challenges of Multiple Sclerosis,”is garnering national attention on behalf of people with MS. He has generously designated a percentage of the book sales to the Wisconsin Chapter.

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Research HighlightsDuring FY2006, rapid progress was made in the fields of science and medicine that impacts our understanding and treatment of multiple sclerosis. Thanks to its generous contributors, the National MS Society disbursed over $42 million to support more than 350 new and ongoing MS research projects. The Society continues to spur national andinternational efforts in collaborative and cutting-edge research. More than 130 clinical trials are underway around the world and other experimental drugs are in the pipeline.

Key highlights of the year include:

• Acorda Therapeutics (Hawthorne, NY) announced positive results of a Phase 3, placebo-controlled clinical trial of Fampridine-SR, an oral drug designed to provide symptomatic relief by compensating for lost nerve conduction.

• The FDA approved the return to market of Tysabri® (natalizumab, produced by Biogen Idec and Elan Pharmaceuticals) to delay the accumulation of physical disability and reduce the frequency of relapses (clinical exacerbations) in those with relapsing MS. Mandatory registration is required for participation.

• Members of the four Nervous System Repair teams from Europe and the US met to share progress being made in the Societyfunded Promise 2010 initiative. The first clinical trials, focused on protecting the nervous system, will begin shortly.

• In a first, Johns Hopkins University researchers reported that nerve cells derived from mouse embryonic stem cells that were transplanted into rats with spinal cord injury were able to connect with muscles and partially restore function.

• Researchers from the University of California, Los Angeles reported that administering Androgel® (testosterone gel applied to the skin) to 10 men with relapsing-remitting MS significantly improved cognitive function and slowed brain tissue loss.

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In FY2006, the Wisconsin Chapter met the half-way point of its $2 million commitment to the Promise 2010Research Campaign, which targets fourareas of great potential:

• Nervous System Repair and Protection – Setting the stage for clinical testing to ultimately restore function in people with MS

• Sonya Slifka Longitudinal MS Study – Tracking all aspects of people’s lives and how they are affected by MS and its treatments

• MS Lesion Project – Studying lesion patterns to understand why MS treats people differently, and thus develop better treatments

• Pediatric MS Centers of Excellence – Research centers across the U.S. devotedto children with MS and their needs

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• Several oral MS therapies continued to progress through the pipeline:

• a Phase II controlled clinical trial of oral fingolimod (FTY720, Novartis PharmaceuticalsCorp.) in 255 people with active, relapsing MS found that up to 77% of those taking fingolimod remained free of relapses over two years; a large Phase III trial is now underway;

• oral cladribine (an immune-modulating drug by Serono), now being tested in an international Phase III clinical trial, has been designated by the FDA as a “Fast Track Product,” which should expedite its future review;

• a multicenter, Phase II controlled clinical trial of oral BG00012 (an oral fumarate, Biogen Idec) led to a 69% reduction in active inflammation on MRI scans in 257 people with relapsing-remitting MS;

• in an open-label, 144-week extension study of oral teriflunomide (an agent that may modulate T cells), those on placebo during the original trial who switched to teriflunomideexperienced up to an 85% decrease in new, active areas of disease activity seen on MRI at week 144.

• Harvard investigators reported that individuals who showed signs of significant exposure to the Epstein-Barr virus, which causes infectious mononucleosis and other disorders, were twice as likely to develop MS up to 20 years later.

• For the first time, the needs of children who develop MS-like symptoms are beingaddressed through the Society’s nationwide network of comprehensive Pediatric MS Centers of Excellence, launched early this year.

• Two genes that may contribute to making a person susceptible to developing MS have been identified by a group of European researchers known as the “GAMES” Collaborative Group.

• Researchers at Stanford University have uncovered evidence they believe may explain the role of a protein, osteopontin, in stimulating repeated relapses and disease progression as well as inhibiting spontaneous recovery from symptoms.

Research Highlights

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Centers where the National MS Society isinvesting the most research dollars:• Harvard University• University of California at San Francisco• Johns Hopkins University• Cleveland Clinic Foundation• University of Wisconsin – Madison• Washington University• Mayo Clinic and Foundation

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FY2006 Wiscons in Chapter Board of TrusteesWe are proud of the following individuals who make it their business to see a worldfree of MS.

Martin J. McLaughlin - Chairman

Michael G. Lutze - Vice Chairman

Robert L. Sowinski - Vice Chairman

Patricia K. Ackerman - Treasurer

Dennis Hollman - Secretary

David J. Raysich - Past Chairman

Colleen G. Kalt - President & CEO

Morry L. Birnbaum

Ellis Brouwer

Robert D. Engel

John O. Fleming, M.D.

Patrick Foy

Dennis J. Kuester

Jess Levin

Robert S. McCormack

Karen J. Minor

Ken A. Minor

Pamela Muma

Rick A. Nelson

Bruce J. Olson

Ulice Payne, Jr.

Jeffery S. Postles, M.D.

Patricia E. Raysich

Arita A. Robinson

James S. Sandstrom

John A. Steinhafel

Maureen Steinhafel

Jeffrey M. Steren

Alyson K. Zierdt

FY2006 Wiscons in Chapter Cl in ical Advisory Committee

Loren A. Rolak, M.D.- Chairman

Kathryn Barry, M.A., C.R.C.

Thomas E. Bush, Esq.

Mary Dukic, R.N.

John O. Fleming, M.D.

Natalie Hackbarth, R.N.

Bhupendra O. Khatri, M.D.

John F. Kramer, P.A.

Lorri J. Lobeck, M.D.

Jerri-Ann Lyons, Ph.D.

Eric Maas, M.D.

Stephen M. Rao, Ph.D.

Eric R Schmitt, Pharm D

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Condensed Statements of Financial PositionSeptember 30, 2006 and 2005

ASSETS 2006 2005Cash & investments $1,994,670 $1,850,310 Other assets 287,634 322,918Furniture & equipment 25,756 37,797

Total assets $2,308,060 $2,211,025

Total Program Expense

National Programs & Research

Fundraising

Management & General

45%

41%

11%

3%

REVENUES 2006 2005Support from the public:

Special events (Includes $3,901,714 $3,565,588in-kind donations of $38,908 for 2006 and $38,474 for 2005) Special event expense (570,633) (560,487)

Total received from special events 3,331,081 3,005,101 Annual campaigns 449,997 542,588Legacies 277,926 109,011Total support from public 4,059,004 3,656,700Other revenue:

Combined Fed. Service Campaign 116,295 106,790Received at National 172,332 189,511Interest income 59,121 27,431Program fees 5,709 5,424Miscellaneous income 20,500 –

Total other revenue 373,957 329,156Total revenues $4,432,961 $3,985,856

EXPENSES 2006 2005Program expenses:

Client services $638,974 $559,002Community service 456,103 372,588Professional education & training 182,444 185,228Public education 735,461 713,603

Total program expense 2,012,982 1,830,421Supporting services:

Fundraising 473,415 438,084Management and general 114,026 127,745

Total supporting services 587,441 565,829National programs and

research expense 1,856,115 1,492,264Total expenses 4,456,538 3,888,514

Change in net assets (23,577) 97,342

Net assets, beginning of year 1,575,328 1,477,986

Net assets, end of year $1,551,751 $1,575,328

Condensed Statements of ActivitiesYears ended September 30, 2006 and 2005

Expenses by CategoryYear ended September 30, 2006

LIABILITIES AND NET ASSETS 2006 2005Due to National MS Society $569,560 $466,549Other liabilities 186,749 169,148Total liabilities 756,309 635,697Net assets 1,551,751 1,575,328Total liabilities & net assets $2,308,060 $2,211,025

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Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for manypeople with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional aboutusing one of these medications and about strategies and effective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at www.wisms.org or 1-800-242-3358 to learn about ways to help manage multiple sclerosis and about current researchthat may one day reveal a cure.

1120 James Drive, Suite A Hartland, WI 53029(262) 369-4400 Telephone(262) 369-4410 Fax

1-800-FIGHT [email protected]

Shing-yan Chiu, Ph.D $558,155Ian Duncan, BVMS, Ph.D. $3,803,556 (two grants)John O. Flemming, M.D. $358,660Colleen Hayes, Ph.D. $467,660Julie K. Olson, Ph.D. $437,232 (two grants)Jyoti Watters, Ph.D. $44,000

Bonnie N. Dittel, Ph.D. $483,408

$6,152,671

At the end of FY2006, there were nine Society-funded research projects activein Wisconsin. The total multi-year commitment to these projects is more than$6.1 million. From the National MS Society’s founding 60 years ago to the end of FY2006, we have invested $500 million to find the cause and cure ofMS - an investment into basic and clinical research that is responsible for therapid progress we’re seeing today. The following grants were active in FY2006:

Research Commitments in Wisconsin as of September 30, 2006

University of Wisconsin-Madison Amount of Research Grant Awarded

BloodCenter of Wisconsin

Total