G re a ter Delawa re Va l l ey Chapte r. Count On Us. fo rs U P P ORT. fo rr E S E A R C H. fo rh O P E

Transcription

1 G re a ter Delawa re Va l l ey Chapte r Count On Us fo rs U P P ORT fo rr E S E A R C H fo rh O P E A n nual Report 2005

2 Count On Us

3 for answe rs and support

4 Linda J. McAleer Chairman 1 From the Chairman and President Judith G. Cohen President and CEO Dear Friends: We are pleased to report that in 2005 we made many strides forward, especially in the area of re s e a rch. The Greater Delaware Valley Chapter contributed more than $3.2 million to the $35 million raised nationally to fund more than 300 clinical trials. These gro u n d b reaking studies will bring us closer to finding a cause and cure of MS and we are fortunate that our area is home to some of the top MS researchers in the world.

5 However, local activities go beyond innovative research projects. T h i s y e a r, The National MS Society provided grants for MS programs at U n i v e r s i t y of Pennsylvania, Thomas Jefferson University, MS Institute at Graduate, Lehigh Valley and Good Shepherd Rehabilitation hospitals and we are p roud to help fund and work in partnership with these leading i n s t i t u t i o n s. We never lose sight of the fact that those affected by MS count on us for a commitment to provide services and programs that will better their daily lives. One of the most significant changes of the past year was the expansion of our information and resources service. By enhancing how we connect individuals with MS to essential community resources, we are having a positive impact on the lives of people who often have nowhere else to turn. The Programs Department experienced another successful year; almost every week brought another education or social program for clients. Our largest programs included over 900 people at Coffee and Conversation: An Evening with Meredith Vieira and Richard Cohen and nearly 1,000 people at the chapter's largest Annual Meeting to date. 2 As the leadership of the Greater Delaware Valley Chapter, we want to express our sincere thanks to our thousands of volunteers and donors, and our dedicated staff. Together, we took vital strides in the fight against multiple sclerosis in As an organization, we thank you and look forward to the day when we complete our mission and end the devastating effects of multiple sclerosis. This is why we are here. Linda J. McAleer Chairman Judith G. Cohen President and CEO

6 Every hour of every day someone is diagnosed with MS.That's 200 Americans each week.

7 Our Challenge Multiple Sclerosis (MS) is a chronic, often disabling disease of the central nervous system. Symptoms may be mild, such as numbness in the limbs, or more severe, and may include paralysis or loss of vision. Most people with MS are diagnosed between the ages of 20 and 50, and the unpredictable physical and emotional effects can last a lifetime. The progress, severity and specific symptoms of MS in any person cannot yet be predicted, but research advances continue to offer hope to those affected by the disease. 4

8 The mission of the National MS Society is to end the devastating effects of multiple sclerosis.

9 About The National MS Society For more than 50 years, the National Multiple Sclerosis Society has provided help and hope for Americans with MS: hope through our extensive and promising national and international re s e a rch p rograms, and help through client programs that make daily life better for people with MS and their families. The Society serves local communities through its 50-state network of chapters, of which the Greater Delaware Valley Chapter is part. These chapters provide assistance to more than one million people annually and encourage personal empowerment for those with the disease through employment counseling, family pro g r a m s, v o l u n t e e r opportunities and advocacy. 6 Since being chart e red in 1954, the Greater Delaware Valley Chapter has been in the forefront of providing programs and services for people with MS and their friends and loved ones in the area.

10 Count on Us... For Research 7 Finding better treatments and, ultimately, a cure for multiple s c l e rosis is fundamental to everything we do. To advance this vitally important goal, we support top-notch re s e a rchers who apply their e x p e rtise in diverse areas: neuro l o g i c a l science, immunology, genetics, virology, basic sciences and clinical medical rehabilitation. In 2005, we saw research progress that broadens our understanding of this unpredictable neurological disease. Thanks to its generous c o n t r i b u t o r s, the Society was able to invest nearly $35 million in 2005 in MS research projects in the United States and abroad. In 2005, the Society launched its largest research campaign to date: Promise The goal of this campaign is to raise an additional $25-30 million for targeted research projects including: studies on the repair and protection of the nervous system; the study of MS lesions to determine if they cause different subtypes of MS; the development of pediatric treatment and care centers to help young people living with MS; and the continuation of the Sonya Slifka MS Longitudinal Study investigating the disease's influence on the daily lives and socioeconomic status of people with MS. The Greater Delaware Valley Chapter has pledged an additional $2,010,000 to this campaign over the next five years and thanks to the Leadership Donations of Mr. & Mrs. Brian DiDonato, Kent C. Griswold, Ph.D. and Lori Griswold, Ph.D., Chip Kurtzman and Martha McGeary Snider, and The Hon. Nicholas J. Maiale we are one step closer to achieving this goal. For more details on these and all research efforts, please visit the Society's Web site at In 2005, the Society committed over $35 million to fund more than 300 new and ongoing research programs. Since its founding in 1946, the National MS Society has invested over $460 million in MS research.

11 Local Research Grants Total Over $3.5 Million* Milton Alter, M.D., Ph.D. Lankenau Institute for Medical Research MS risk related to age at migration and length of environmental exposure 4/1/05 to 3/31/06 $80,950 Bruno Gran, M.D. University of Pennsylvania Role of IL-12 and the IL-12 receptor in the pathogenesis of EAE 8/1/02 to 7/31/05 $67,410 Michael J. Baime, M.D. University of Pennsylvania Mindfulness-based stress management for people with MS and their caregivers 2/1/04 to1/31/06 $44,000 Laura J. Balcer, M.D. University of Pennsylvania Longitudinal assessment of visual function in multiple sclerosis 10/1/03 to 9/30/08 $34,619 Vision, MRI lesion burden, and quality of life in MS 9/30/00 to 9/30/06 $607,749 Relation of retinal nerve fiber layer thickness to visual function in MS 3/1/05 to 2/28/06 $44,000 Elizabeth P. Blankenhorn, Ph.D. Drexel University Genetic basis for gender differences in EAE susceptibility 10/1/04 to 9/30/08 $783,134 Timothy Cunningham, Ph.D. Drexel University SPLA2 Enzyme inhibition as new therapy for multiple sclerosis 11/1/04 to 10/31/05 $44,000 Jerome J. Devaux, Ph.D. University of Pennsylvania Medical Center Visualizing abnormal axonal conduction at the single cell level 1/1/04 to 12/31/06 $141,771 Judith B. Grinspan, Ph.D. Children's Hospital of Philadelphia Central role for bone morphogenetic protein (BMP) in glial development and regeneration 4/1/05 to 3/31/08 $493,350 Takayuki Itoh, M.D., Ph.D. Children's Hospital of Philadelphia Regulation of oligodendroglial death by the Bc1 family 10/1/03 to 9/30/06 $411,678 David Pleasure, M.D. Children's Hospital of Philadelphia Excitotoxicity in experimental allergic encephalomyelitis 4/1/04 to 3/31/07 $125,309 Abdolmohamad Rostami, M.D., Ph.D. Thomas Jefferson University Mechanisms of tolerance induced by i.v. MBP in EAE 10/1/04 to 9/30/06 $147,890 Wenchao Song, Ph.D. University of Pennsylvania Complement regulatory proteins and experimental autoimmune encephalomyelitis 4/1/05 to 3/31/08 $480,150 *Multi-year grants active in fiscal

12 Count on Us... For Programs and Services 9 Knowledge and support are essential to enhancing the quality of life of people diagnosed with multiple sclerosis. Through a full range of programs and services, the Greater Delaware Valley Chapter ensures that its members know they can count on us to ease their lives. Health and Wellness Efforts promote physical, emotional and family health as well as social/recreational support. In 2005: more than 3,000 clients received support from chapter social workers or nurses at specialized MS Hospital Centers and Clinics 32 self-help groups provided more than 450 group meetings and telephone support throughout the 18-county area more than 2,000 people attended education programs such as our Young Adult Socials, Current Treatments in MS and Knocking Out Fatigue more than 500 clients participated in local teleconferences yoga and other adaptive exercise classes were expanded into clients communities over 80 clients participated in Art Talk, a program that provides in-home access to the Philadelphia Museum of Art The National MS Society offers more services for people with multiple sclerosis than any other MS organization in the world.

13 Education and Information is the chapter's largest area of request. Major efforts in 2005 include: responding to more than 15,000 calls through the Programs Department mailing over 2,800 packets of information about MS symptom management and local resources to clients p roviding support through calls or s, via the Inform a t i o n and Resources Center, to nearly 5,400 area residents sending advocacy updates to more than 500 people publishing the chapter's newsletter four times in 2005 to our mailing list of 14,500 members which provides the latest information on programs and research providing professional training for neurologists, social workers, nurses and care managers training videos to educate Certified Nursing Assistants on providing sensitive care for people with MS 10 The mission of the National MS Society is to end the devastating effects of multiple sclerosis.

14 11 Our Independent Living Program helps members remain in the community and maintain their greatest level of independence. Support included: assistance to more than 1,192 individuals through the Durable Medical Equipment Loan Warehouse portable ramps to 28 families monthly deliveries of incontinence supplies to more than 350 members over 1,540 hours of in-home health services, including physical therapy, respite care for care-givers, home health aide services and core services to more than 70 families more than 400 round-trip transportation to neurology appointments vital care management services to more than 80 individuals and families financial assistance for home and vehicle modifications to help people remain independent in their community The goal of every National MS Society program is the self-empowerment of the person with MS.

15 Family Focused Programs included: the National Pen Pal program that connected over 100 local children with others outings to Dorney Park and a family picnic for more than 800 individuals a retreat weekend for more than 60 couples Advocacy efforts included: joining over 200 activists in Washington D.C. to advocate for an increase in National Institutes of Health research funding more than 300 people taking part in Action Alert, the nationwide based advocacy action network chapter representatives meeting with state and local congressional representation to discuss priority advocacy issues affecting people living with MS 12 Since its founding in 1946, the National Multiple Sclerosis Society has been the leading provider of programs for people with MS and their families and friends.

16 Count on Us... To Raise Vital Funds to Meet Our Mission As the pace of scientific study advances and as the chapter increases its commitments to those with MS and their families, our needs for funding also grow. Our volunteers and donors count on us to ensure that no one is alone in the struggle against MS. They look to us to foster bonds of hope and caring as we provide programs and services. Those who donate to and support our efforts also count on us to channel the funds they have so diligently raised into the research that will help make MS mean mystery solved. 13 Successful campaigns that collectively raised $8.5 million in 2005, included: the MS PA Dutch Bike Tour with more than 550 cyclists and the 25th Anniversary MS 150 City to Shore Bike Tour with more than 6,500 cyclists and 1,000 volunteers MS Walks at 18 locations attracted nearly 12,000 residents and their families who made steps in the fight against MS the third annual three-day, 50-mile MS Challenge Walk, which attracted over 250 walkers The National MS Society is the only national voluntary MS organization that meets the standards of all major agencies that rate the fiscal responsibility of non-profit groups.

17 READaTHON which welcomed 11,600 students at 200 schools, reading books to raise money to help local people with MS leadership campaigns, such as Women Against MS (WA M S ), the MS Leadership Class, and the MS Dinner of Champions, which increased public awareness and raised significant funds for the fight against the disease We are also grateful to those extraord i n a ry volunteers who org a n i z e special events, including golf tournaments, dances, community dinners and so much more. We count on their dedication and spirit to pro v i d e a connection to thousands in local communities. Many of our supporters also find significant advantages in giving to our mission in more traditional ways, through the United Way donor choice program, bequests, estate planning, wills, memorial funds and gifts of stock among other options. These options, in addition to our diversified campaigns, enable us to continue the fight against MS unabated, until we have conquered this mysterious disease. 14 More than 20,000 residents are committed and dedicated to helping us meet the challenges of multiple sclerosis.

18 H ow the Chapter Dollar Was Spent 15 The Greater Delaware Valley Chapter appreciates the generosity of its donors and takes every step possible to ensure that funds are used responsibly and e ffectively as we continue our mission to end the devastating effects of MS. Chapter staff and volunteers pride themselves in being good stewards of our incoming dollars. Management and General funds enable us to make p rograms more meaningful through effective business pro c e d u res, and we consistently keep our expenditures below the recommended standards for n o n - p rofit groups. During periodic reviews, the Greater Delaware Va l l e y Chapter has received the highest ratings possible from the Society for its excellent management practices. As always, Program Services was our largest expenditure. With the increase of available funds, we were able to respond to gaps in service and to pro v i d e even more assistance to people with MS than ever before. Our second largest expenditure is National Programs and Research, an i m p o rtant area through which the mystery of MS will one day be solved. Grants are awarded throughout the United States including the Gre a t e r D e l a w a re Valley (see page 8). In addition, the chapter also funds Professional and Public Education programs in order to disseminate the most recent information about MS to health care providers, the general public, the media and all those who c a re for and about those with multiple sclero s i s.

19 Functionalized Expenses - Fiscal Year 2005 expenses 1 Program Services....$3,724, % 2 National Research & Programs...$3,221, % 3 Fundraising... $710, % 4 Net Assets to Reserves....$442, % 5 Management & General...$358, % 16 Statement of Receipts - Fiscal Year 2005 source Special Events (net of benefit to donor expenses of $1,394,548)...$6,726,679 Individual & Corporate Support...$1,487,047 Legacies & Bequests...$103,093 Interest & Investments...$140,216 Total...$8,457,035 For complete financial information, please call the chapter at A copy of the official registration and financial information for the National Multiple Sclerosis Society, Greater Delaware Valley Chapter may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania Registration does not imply endorsement.

20 Corporate Sponsors 17 $50,000+ Dr. & Mrs. Francis R. Manlove Serono, Inc./Pfizer, Inc. Subaru Of America $20,000 - $50,000 Anonymous GlaxoSmithKline Foundation GMAC Commercial Mortgage Johnson & Johnson Lockheed Martin Technology Services Inc. The Lubert Organization Maxwell Strawbridge Charitable Trust $15,000 - $20,000 Anonymous Grand Chapter of Pennsylvania Order of the Eastern Star, Inc. Minerva Kuntz Auxiliary PECO, an Exelon Company Frank C. Sabatino Esq. Tredyffrin-Easttown Jr. High School $10,000 - $15,000 American Infrastructure Aqua America Astra Zeneca Pharmaceuticals LP Comcast Cable Communications Commerce Bank Enfield Elementary School Glen Landing Middle School Griswold Special Care Indian Valley Middle School Interactive Services Group Mr. & Mrs. Robert E. Keith KPMG LLP Charles D. Kurtzman & Martha Snider The Hon. Nicholas J. Maiale Merck William T. Monahan The Warren V. Musser Foundation Oliver Heckman Elementary School Sovereign Bank West Deptford Middle School Wireless Zone Foundation for Giving Inc.

21 Thanks to Our Volunteers Thank you to the many volunteers who have dedicated their time and e n e rgy to the National MS Society. They are a testament to the generosity of the human spirit and as a result of their hard work and their commitment, the Society can continue to provide re s e a rch, programs, and serv i c e s to the more than 400,000 Americans living with MS. 18

22 Board of Trustees Fiscal Year 2005 OFFICERS: Linda J. McAleer, Chair Kent C. Griswold, Ph.D., Past Chair Larry Kane, Vice Chair Neal D. Colton, Esq., Vice Chair Russell D. Napolitano, Vice Chair Maurice D. Glavin, Secretary David N. Schlesinger, Treasurer MEMBERS OF THE EXECUTIVE COMMITTEE: Michael A. Bogdonoff, Esq. National Board of Directors Research Advocate Nathaniel R. Cohen Development Committee Joseph H. Huston, Jr., Esq. Legal Services & Governance Committee Rhonda Karp, Ed.D. Human Resources Committee Katherine M. Keefe, Esq. Nominating Committee Linda G. Kraemer, Ph.D. Research Advocate Eric Kraeutler, Esq. Nominating Committee Timothy J. Maguire Development Committee The Hon. Nicholas J. Maiale Finance Committee Trena L. Pelham, M.D. Community Programs Committee Jeff A. Petty Governance Committee Louis R. Pichini, Esq. Audit Committee A.M. Rostami, M.D., Ph.D. Clinical Advisory Committee Frank C. Sabatino, Esq. Human Resources Committee Colonel (Ret.) Michael L. Warner Government Relations Committee SPECIAL ADVISORS: Mona Forman Doyle Lenore Millhollen MEMBERS: Stephen A. Albertini Jill Broder Steinberg Marc A. Brownstein Jeff Clay Phillip D. Cooper, RPA Patricia Counsellor, R.N., M.S. Roger J. Dennis, JD Brian DiDonato Joseph P. Dunn, Jr. Patrick J. Eiding Howard K. Goldstein, Esq. Jeffrey I. Greenstein, M.D. Robert B. Kimmel Charles D. Kurtzman Margie Lefcoe-McClennen James L. Murray, Esq. Daniel S. Ojserkis, Esq. Molly D. Shepard Douglas S. Strang Andrew J. Weber LEADERSHIP COUNCIL: Martha E. Candiello, Esquire Larry Christenson William J. Einhorn, Esq. Patricia A. Flemming Edwin Hessler Fred Lublin, M.D. Michael D. MacLeod Raymond G. Perelman Donald H. Silberberg, M.D.

23 Counties Served By The National Multiple Sclerosis Society Greater Delaware Valley Chapter: In Pennsylvania: Berks, Bucks, Carbon, Chester, Delaware, Lehigh, Monroe, Montgomery, Northampton, Philadelphia and Schuylkill. In New Jersey: Atlantic, Burlington, Camden, Cape May, Cumberland, Gloucester, and Salem.

24 G re a ter Delawa re Va l l ey Chapte r 1 Reed Street, #200 Philadelphia, PA Telephone: Fax: pae@nmss.org Web site: