CHANGING THE WORLD FOR PEOPLE AFFECTED BY MS 2014 … · The New York City – Southern New York Chapter serves 12,000 people living with ... parents, couples and care-givers •

1

CHANGING THE WORLD FOR PEOPLE AFFECTED BY MS

2014 ANNUAL REPORT

2

The National MS Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. The Society is united in our collective power to do something about MS now and end this disease forever. Our vision is a world free of MS.

The Society helps each person address the challenges of living with MS through our 50-state network of chapters, funding critical 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. In 2014, the Society invested $50.6 million to advance more than 380 research projects around the world and helped more than one million people affected by MS through our comprehensive programs and services.

The New York City – Southern New York Chapter serves 12,000 people living with MS in the five boroughs and Westchester, Putnam, Rockland, Orange and Sullivan counties and helps them move their lives forward. We raise funds locally to support the Society’s critical research initiatives and provide hundreds of comprehensive support services and programs for people living with MS, their families and friends.

3

Symptoms range from

numbness and tingling to loss of

vision and paralysis Women

are diagnosed two to three times more

than men

Typically diagnosed in prime-of-life years, ages 20

to 50

Affects 2.3 million people

worldwide

Most common neurological

disease leading to disability in young

adults

A chronic, often disabling disease

of the central nervous system (the brain, optic

nerves and spinal cord) that interrupts the flow of

information within the brain and between

the brain and the body

FACTS ABOUT MS

4

Dear Friends,

This year, our MS movement made great strides to help each person living with multiple sclerosis live their best life. Hundreds of comprehensive support services and programs helped connect the 12,000 people living with MS that we serve to information, resources and others with shared experiences. Vital funds were raised to advance critical research projects. Our ties in the community were strengthened and broadened as the result of numerous collaborations and partnerships with businesses, donors, volunteers and community organizations.

No single individual can do the work of moving us closer to a world free of MS. As the saying goes, “it takes a village.” In these pages you will note the thousands of people who helped raise funds by participating in various events we host and you’ll read about an inspiring donor who brings energy and dedication to our movement.

Every person affected by MS is at the heart of all that we do. Engaging with them inspires and motivates us and our sentiment is to act with urgency to find solutions and change the world for them. The voices of people affected by MS will always be heard and we will drive change wherever it is needed.

We are proud to share with you our Annual Report for fiscal year 2014 which reflects who we are: a passionate community united in our collective power to do something about MS now and end this disease forever.

Sincerely

Jeffrey L. SilvermanChairman, Board of TrusteesNew York City – Southern New York Chapter of the National MS Society

Robin EinbinderPresidentNew York City – Southern New York Chapter of the National MS Society

PERSISTENT MOMENTUM: OUR IMPACT

5

For Mary Ellen Whelehan, who donates annually to the chapter, creating a sustainable gift was important so she bequeathed it in her will, earmarking it for research.

“Although I don’t feel a cure will be possible in my lifetime, I want research to find a way to stop multiple sclerosis and cure it,” she says. “I want somebody else to have that.”

Mary Ellen, who now has secondary progressive MS, has been active with the chapter since her diagnosis 28 years ago. She attended the Newly Diagnosed program and later joined the now defunct Professional Women’s Group.

A former employee of the banking industry until her MS symptoms forced her to stop working in 1997, Mary Ellen is currently involved with the chapter’s Government Relations Committee where she says the work is really a continuum of the “emails and calls to politicians” she has always made to hold elected officials accountable.

Mary Ellen has also participated in the chapter’s laboratory tours, which allow donors to interact with MS researchers and learn first-hand about the research projects their gifts are advancing.

Fundraising is a family affair for Mary Ellen who says her father and siblings have participated and fundraised for Bike and Walk MS and even the MS Challenge Walk. “They too have raised thousands over the years to support both the chapter and re-search,” she says. “It’s important to do.”

Mary Ellen Whelehan at center

DONOR LEAVES LEGACY TO END MS

6

The chapter raised $12.6 million, of which nearly $3.3 million was allocated to the National MS Society’s continuing research initiatives and national activities and $6.4 million was dedicated to programs and services for people living with MS, their families and friends. The chapter continued to maintain expense control, with fundraising costs of 23% and administrative costs of 2%.

Nearly 5,000 Bike MS NYC participants raised nearly $3 million.

More than 10,000 Walk MS participants raised $2.7 million.

Nearly $2 million was raised for the Society’s NOW research campaign.

Nearly $1 million was secured in donated advertising to promote fundraising events.

1,200 Climb to the Top participants raised $900,000.

The Race Against MS raised nearly $500,000 and had more than 600 guests in attendance.

More than 100 Race to Stop MS participants raised $480,000.

The annual Brain Games dinner raised more than $400,000 and had 300 guests in attendance.

The Dystel Memorial Golf Classic raised more than $190,000 with nearly 130 guests in attendance.

More than $170,000 was raised by the Women on the Move Luncheon with more than 320 guests in attendance.

More than $150,000 was raised by the Books for a Better Life Awards with more than 200 guests in attendance.

1. $12.6 million

2. $3 million

3. $2.7 million

4. $2 million

5. $1 million

6. $900,000

7. $500,000

8. $480,000

9. $400,000

10. $190,000

11. $170,000

12. $150,000

ACCOMPLISHMENTS

7

13. 8,000

14. 1,900

15. 1,000

16. 500

17. 262

18. 200

19. 22

20. 5

ACCOMPLISHMENTS (CONT’D)

Nearly 8,000 people participated in 207 programs.

Nearly 1,900 people participated in support groups, and recreation, wellness and social activities.

Nearly 1,000 healthcare professionals successfully engaged in training programs designed to educate and promote working with individuals living with MS.

The needs of more than 500 people were met via direct financial assistance for homecare, durable medical equipment, rehabilitation, counseling and more.

During MS Awareness Week, 262 clients participated in seven programs, 24 medical students were engaged and thousands were reached as part of public awareness outreach.

More than 200 people benefited from employment resources.

Twenty-two New York City – Southern New York-based research projects were funded by the Society.

Five high schools seniors, with parents living with MS, received college scholarships.

The chapter successfully advocated for funding MS research through the National Institutes of Health and the Congressionally Directed Medical Research Program.

8

STATEMENT OF ACTIVITIES FOR THE YEAR ENDING SEPTEMBER 30, 2014

PUBLIC SUPPORT AND REVENUE Special events 9,733,895 Less: Direct benefit to donor costs (1,259,646)Contributions revenue 3,529,265 Legacies and bequests 300,248 Grants from government agencies 12,854 Net investment income 190,696Service Program fees 4,750Miscellaneous income 133,537Total revenue 12,645,599

EXPENSES Program services: Research 3,112,730Public support for National activities 1,860,771Client programs 2,055,040 Community programs 973,956Professional education and training 239,193Public education 970,033Total program services 9,211,723

Support services: Fundraising 2,484,713Management and general 236,536 Total support services 2,721,249

Total expenses 11,932,972

Change in net assets 712,627 Net assets, beginning of year 1,979,688Net assets, end of year 2,692,315

STATEMENT OF FINANCIAL POSITION FOR THE YEAR ENDING SEPTEMBER 30, 2014

ASSETS Current Assets:Cash and cash equivalents 4,764,109Contributions receivables 371,365 Contributions receivables - due from National 80,835Due from chapters 15,549Prepaid expenses and other assets 235,372Total Current Assets 5,467,230

Non-Current Assets:Investments –Property and equipment, at cost, net of accumulated depreciation and amortization 168,461Due from National Multiple Sclerosis Society 195,437Total Non - Current Assets 363,898

Total Assets 5,831,128

LIABILITIES AND NET ASSETS

Liabilities:Accounts payable and accrued expenses 536,707 Deferred revenue 2,265,606Deferred rent 297,146Due to National MS Society 38,352 Due to Chapters 1,002Total Liabilities 3,138,813

Net Assets:Unrestricted 1,906,202Temporarily restricted 786,113 Total net assets 2,692,315

Total liabilities and net assets 5,831,128

FINANCIAL REPORT

9

We provide a range of programs and services to more than 12,000 people impacted by MS, so that each person can live their best life with more connection to information, resources and others with shared experiences.

Education• Programs for the newly diagnosed• Educational seminars (in-person, teleconference and online)• Information Resource Center (IRC) that responds to questions by phone or email• Timely updates on research and treatment information• Educational programs in Spanish

• E-newsletters and magazines: E-vent News and MS Connection • Educational pamphlets and brochures

Activism• Public advocacy• Government Relations Committee• Action Alert Network• New York MS Coalition Action Network

Employment Assistance and Information• Counseling on employ-ment issues• Career testing and referrals to job training programs• Workshops and support groups

Family and Social Programs• Programs for children, parents, couples and care-givers• Social adult day pro-grams• Self-help groups• Support groups for chil-dren, spouses, partners, parents and caregivers• Programs for children and teens living with MS, and children living with a parent with MS

• Networking events for people living with MS in their 20s and 30s• Online creative writing• Access the Apple: Community Outings• Social dinner dance

MOVING LIVES FORWARD: PROGRAMS AND SERVICES

10

Emotional Support• In-person and telecon-ference support groups• Peer support• Referrals to mental health providers

Wellness• Adaptive exercise and blended wellness activities including yoga, Pilates, aquatics and sports such as horseback riding, hand-cycling, golf and tennis • Information and referrals to healthcare professionals and wellness resources

Independent Living• Assistance and referrals for entitlement, housing, insurance and legal information • Information and referrals to social services, independent living resources and long-term care services• Annual Legal Day• Home evaluation for accessibility

Professional Education• Janet Pearce MS Nurse Education Program • College and graduate school internships• In-service trainings • Professional Resource Center

Direct Financial Assistance• Care management• Counseling• Durable medical equipment • Home and auto modifications• Home and respite care• Medical transportation• Occupational, physical and speech therapy• College scholarships• Critical short-term assistance

Los programas y servicios en español incluyen:• Servicios de asistencia• Programas de conse-jería y grupos de apoyo• Programas educacionales• Asistencia e infor-mación sobre empleos• Programas de recreación y mantenimien-to físico

Centro de información y recursos incluyendo boletines informativos que ofrecen la ultima información en temas variados para las personas que viven con EM, sus amigos y familiars.

PROGRAMS AND SERVICES (CONT’D)

11

Comprehensive MS care means treating the whole person and not just the disease and its symptoms. We support comprehensive care for people living with MS and their families through our affiliation with 10 Centers for Comprehensive MS Care where specially trained nurses, social workers and expert MS neurologists offer integrated services including diagnosis and medical management of MS, disease education, referrals and more.

Alpha Neurology Multiple Sclerosis Care Center of Staten IslandStaten Island, NY

Bronx-Lebanon Hospital/Bronx MS Care CenterBronx, NY

Linda Morgante MS Care Center at Maimonides Medical CenterBrooklyn, NY

Corrine Goldsmith Dickinson Center for Multiple Sclerosis at Mount Sinai Medical CenterNew York, NY

Judith Jaffe Multiple Sclerosis Center at Weill Cornell Medical CollegeNew York, NY

NYU Langone Medical Center MS Comprehensive Care CenterNew York, NY

New York Hospital Medical Center of Queens MS Comprehensive Care CenterQueens, NY

Weill Cornell Multiple Sclerosis Center at Nyack HospitalNyack, NY

White Plains Medical Center MS CenterWhite Plains, NY

CENTERS FOR COMPREHENSIVE MS CARE

12

Partners in MS Care is a national program that recognizes and supports quality MS care by encouraging strong partnerships between MS clinicians and the Society. The Society believes that people living with MS receive optimal care and support when these collaborative relationships exist.

Neurologic Practice

Nada Abou-Fayssal, M.D.Lutheran Multiple Sclerosis CenterBrooklyn, NY

David Jaeger, M.D.Crystal Run HealthcareMiddletown, NY

Claire Riley, M.D.Columbia University Multiple Sclerosis Clinical Care and Research CenterNew York, NY

Rehabilitation Practitioners

Marissa A. Barrera, MS, MPhil, MSCS, CCC-SLPAspire Center for Health and WellnessNew York, NY

Robert Schreyer, PT, DPT, NCS, MSCS, CSCSAspire Center for Health and WellnessNew York, NY

Emil Euaparadorn, PT, DSc, OCS, MSCS, CMPT, COMT, CSCSAspire Center for Health and WellnessNew York, NY

Herb Karpatkin, PT, DSc, NCS, MSCSNew York, NY

Mental Health Practitioners

Jennifer Finkel, M.D.New York, NY

Tamara Greeley, LCSW, MPANew York, NY

Ronnie Hochberg, MS, LMHC, CRCNew York, NY

Luydmila Jovine, LCSW, BCDNew York, NY

Deborah Mandelbaum, LCSWNew York, NY

Gayle Lewis, Ph.D.New York, NY

PARTNERS IN MS CARE

13

Locally-Based Researchers

Charles Abrams, M.D.State University of New York - Downstate Medical Center

Linnea Asp, Ph.D.Icahn School of Medicine at Mount Sinai

Laura Balcer, M.D.New York University School of Medicine

Yoko Bekku, Ph.D.New York University School of MedicineRobert Charlson, M.D.New York University Medical Center

Rebecca Farber, M.D.Icahn School of Medicine at Mount Sinai

Susan Gauthier, D.O.Weill Cornell Medical College

Yulin Ge, M.D.New York University Medical Center

James Goldman M.D., Ph.D.Columbia UniversityYael Goverover, Ph.D.New York University

Robert Gross, M.D.Icahn School of Medicine at Mount Sinai

Matilde Inglese, M.D.Icahn School of Medicine at Mount Sinai

Juan Lafaille, Ph.D.New York University Medical Center

Victoria Leavitt, Ph.D.Columbia University

Fred Lublin, M.D.Icahn School of Medicine at Mount Sinai

Laura Magri, Ph.D.Icahn School of Medicine at Mount Sinai

Claire Riley, M.D.Columbia University

Jack Rosenbluth, M.D.New York University Medical Center

James Salzer, M.D., Ph.D.New York University School of Medicine

Bridget Shafit-Zagardo, Ph.D.Albert Einstein College of Medicine

Timothy Vartanian, M.D., Ph.D.Weill Cornell Medical College

Lin Wu, Ph.D.New York University School of Medicine

NEW YORK CITY BASED RESEARCHERS

14

CHAIRMANPeter Goettler

CHAIRMAN EMERITUSCHAIRMAN, NOMINATING COMMITTEEMichael L. NortonTishman Speyer

VICE CHAIRMANJeffrey L. Silverman

SECRETARYTobi Rogowsky

TREASURER AND CHAIRMAN, FINANCE COMMITTEEMalcolm P. WattmanCadwalader, Wickersham & Taft LLP

CHAIRMAN, AUDIT COMMITTEECHAIRMAN, COMPENSATION COMMITTEERichard G. KabobjianDeloitte

CHAIRMAN, CLINICAL ADVISORY COMMITTEEFred D. Lublin, M.D.Mount Sinai Medical Center

CHAIRMAN, DEVELOPMENT COMMITTEE AND REGIONAL VOLUNTEER LEADERSHIP COUNCIL LIAISONGeoffrey Radbill

MEMBERSJames K. DonaghyStructure Tone Inc.

Elizabeth GiardinaMorgan Stanley Global Wealth Management

David GreensteinLakin Tire East, Inc.

Aaron E. Miller, M.D.Maimonides Medical CenterMount Sinai Medical Center

Sean A. MurdochMorgan Stanley Fund Services

Adam I. PopperWestbrook Partners

Lynn M. RuanePeople Magazine

Todd D. SilvermanMadison International Realty

Leonard H. Van OrdenKPMG LLP

Peter VermetteGoldman Sachs

BOARD OF TRUSTEES

15

It is the generosity of donors, event participants, volunteers, corporations and foundations that enables the chapter to support critical MS research and provide comprehensive services and support for people living with MS, their families and friends. Join the movement and help create a world free of MS.

• Register for Bike MS NYC, Climb to the Top or Walk MS NYC - SNY• Volunteer locally or nationally• Be a voice within the Society’s online community at msconnection.org• Connect with the chapter on Facebook or Twitter • Join the New York MS Coalition Action Network• Donate generously and inspire others to join you

Visit www.MSnyc.org or call 212-463-7787, option 1 for more information.

THANK YOU FOR JOINING THE MOVEMENT

16