2011
Annual Report
Delaware Chapter
2011 Annual Report
About Multiple Sclerosis Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information between the brain and body. Every hour in the United States, someone is newly diagnosed with the disease. 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, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and over 2.1 million worldwide.
About the National Multiple Sclerosis Society MS stops people from moving. The National MS Society exists to make sure it doesn’t. The Society addresses the challenges of each person affected by MS by funding cuttingedge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move forward with their lives. In 2010 alone, through its national office and 50-state network of chapters, the Society devoted $159 million to programs and services that assisted more than one million people. To move us closer to a world free of MS, the Society also invested $37 million to support 325 new and ongoing research projects around the world. The Society is dedicated to achieving a world free of MS. Join the movement at nationalMSsociety.org. Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at nationalMSsociety.org or 1-800FIGHT-MS (344-4867).
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2011 Annual Report
2010 Board of Trustees: Front Row: Sanjai Rao, DO; Bianca Fraser-Johnson; Diana Caine; Erika Ceasar, Esq; Stephanie Battis Middle Row: Larry Green; Jason Silversteen, DO; Maria McCabe; Mary Anne Murray; Cheryl Heiks; Heyward Damon, Jr.; Nitin Rao, Esq Top Row: Enrique Hernandez; Carl Hertrich; Richard Pulling, Jr.; Kate Cowperthwait;Tom O’Brien Not Pictured: Richard Habibi; Gail Janionowski; Steven Kessler; Matt Lenzini; Kathleen Matt; Alan Potts; Michele Sammons; Maria Schaffer; Betty Sweeny
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2011 Annual Report
PROGRAMS AND SERVICES • MS—the diagnosis and disease • Symptom Management—living a full and active life • MS Research—education about recent research advances • Social Events • Free Financial Planning Consultations • Caregiver Support • Knowledge is Power—mail/DVD program addressing all facets of learning to cope with MS and the impact on the family • Keep S’myelin—special print and internet program for children of a parent with MS
Support and Counseling • Self-Help Groups—provide camaraderie and positive support to people facing the challenges of living with MS. Groups are both peer-led and professionally-led. • Short-Term Professional Counseling—for individuals and/or their families at no charge. Four sessions are permitted per fiscal year. • Friendly Visitors—in-person peer support provided to residents of long-term care facilities by trained volunteers who also live with MS or have a close association to MS. • Caring Hands—chore service provided to people living with MS by teams of volunteers twice a year, generally in the spring and fall.
Information and Referral MS navigators respond to requests for information about all aspects of MS, connect people with MS and their families to appropriate resources, and are always available to provide emotional support or just listen. Navigators seek to empower individuals and families by developing action plans to assist them in resolving many types of issues.
HomeAble™ HomeAble™ provides funding for home modifications to members living with MS who demonstrate need and meet financial eligibility criteria. This program fosters independence within the home environment and helps to prevent and/or forestall institutionalization.
Financial Assistance Emergency Financial Assistance: The Chapter offers short-term emergency financial assistance to members demonstrating financial need. The Program team helps individuals resolve the crisis with the goal of preventing future emergencies. Limited assistance is given in the following categories: • Respite Care • Home Health Care • Air Conditioning
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2011 Annual Report
• Chore Services • Physical Therapy • Auto Modifications • MS-related Supplies • Durable Medical Equipment • Family/Caregiver Support Scholarship Program: Scholarships are awarded to students who have MS or who have a parent with MS. Prospective student applications are reviewed and approved by a third party hired through the national office. Approved applications are reviewed by the Chapter Programs Committee, which makes the award determinations. Students must be starting their first year of higher education to be considered. One-time renewals may be available to prior-year recipients. Arthur Stapler Memorial Adventure Fund: Grants are awarded to individuals living with MS in Delaware and neighboring chapters. Applicants must request funding for an activity of an adventurous or once-in-alifetime nature. Also, group activities can be awarded that meet the same criteria. Transportation: Paratransit tickets are provided to members who demonstrate financial need so that they may use the state’s specialized transit service via DART.
Exercise Programs Regular exercise is an important tool for staying conditioned and for bouncing back from exacerbations. The Chapter organizes and supports various types of ongoing exercise groups throughout the state. • Aquatics • Yoga • Gym Memberships Some programs are adapted so that people of any physical ability level can participate. Scholarships are available for those who demonstrate financial need.
MS Physical Therapy Assessment Clinic The Chapter collaborates with the physical therapy department at the University of Delaware to provide free assessments of gait, balance, movement, vision, mental health, nutrition, home/work environmental issues, need for assistive technology, etc. This model was honored nationally for its unique collaborations. The program is currently overseen by the Associate Director of the NOA Physical Therapy Clinic at the University. While our members benefit from these periodic assessments, students gain experience in the physical issue of MS, while the chapter facilitates the development of MS-savvy medical professionals in the field. 5
2011 Annual Report
Advocacy The Government Relations Committee initiates or actively participates in advocacy at both the federal and state levels on issues that will improve life or lead to a cure for people with MS. The Committee successfully lobbied to have the Chapter added to the State of Delaware tax check-off box. Health care reform and accessibility continue to be top priorities for the Committee.
2010 Income Sources (Fiscal YearEnding in 09/30/2010)
Bike MS: Bike to the Bay
$974,218
Walk MS
$305,480
MS Golf Tournament
$96,030
Readathon
$15,437
Women Against MS
$34,700
United Way & CFC
$36,763
PNC Bank Run/Walk
Program Fee Income
$9,343
Other Non-Campaign Income
$8,131
Miscellaneous Income
$2,014
Employee Campaign
$1,626
$102,270
Bike MS: Crankin’ for a Cure
$19,916
38%
43%
National Direct Mail Income
$19,032
Individual Contributions
$28,898
National Programs and Research
Client and Community Services
Board Campaign
$10,959
Tributes and Memorials
$14,390
HomeAble & Public Grants Other Campaign Income Interest Income
$207,053
12%
Fundraising
$16,538 $4,732
7%
Management and General
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2011 Annual Report
Donors Individuals and Corporations who gave more than $1,500, the number of Delawareans living with multiple sclerosis, from 10/01/09 - 09/30/11 $1,500 - $2,499 Linda Allan Aaron Augenblick Kristie Augenblick Dr. & Mrs. Kenneth Bell Blue Cross Blue Shield of Delaware Herman Boyd David Brand Kristin Chambers Christiana Care Health System Kate & John Cowperthwait Joseph DeSantis Charles Falletta Bianca Fraser-Johnson & Michael Johnson JoAnne & Larry Green John Hewes Honda Financial Services Paula Janssen Jeffrey Jennings JPMorgan Chase Foundation Victoria Mendham Robin Reynolds Kelly J. Roarty Maria Schaffer Schwab Foundation Kathy Smith TD Bank, N.A. Michael Uhlman Bill Wallach
$2,500 – $4,999 AAA Mid-Atlantic AIG Matching Grants Program Anonymous Robert Arrowsmith Julia & Charles Cawley Elizabeth Collins Ronald Cooney Davis-Smith Accounting Associates The Fraser Charitable Foundation Go Fish! LLC Hanover Uniform Co Hatzel & Buehler, Inc. Maria Paz & Enrique Hernandez Carl & Joey Hertrich Jewish Federation of Greater Philadelphia J. F. Sobieski Mechanical Kaiserman Company, Inc Barbara & Steven Kessler Nancy Ladd Kenneth Markiewitz NW Sign Industries, Inc. Jennifer & Tom O’Brien Jennifer & Terry Patrick Potter Anderson & Corroon Alan & Judy Potts State Employees Campaign (SEC) Tara Quinn & Gregg Galardi Thermo Fisher Scientific United Way of Delaware Thomas J. Vizacaro WSFS Bank
Bank of America Client Foundation Barclays Bank Delaware Biogen Idec Boeing Employee Good Neighbor Buccini/Pollin Group Burns & McDonnell City Of Newark Colonial Metals Inc. Crystal Trust Heyward & Doneene Damon Delaware Park E. I. Du Pont De Nemours & Co. Enerfab Bruce Finkelstein F&M Kurtz ING Direct Longwood Foundation, Inc. Karen & Gary McCrea NRG Energy, Inc Pepsi Cola Bottle Company PNC Bank Mike Schroder Deborah & Michael Stapler TD Charitable Foundation Tunnell Companies, L.P. Donald Wolfe Note: This listing represents, to the best of our ability, all contributions received between October 1, 2009 – September 30, 2011. It does not include donations given through the United Way of DE. If we have omitted your name or spelled it incorrectly, please accept our apologies and call the Chapter office at
$5,000 + Anonymous AstraZeneca LP Company Bank of America
(302) 655-5610 so that we may correct our records.
2011 Annual Report
Sponsors PNC BANK RUN/WALK FOR MS Title Sponsor PNC Bank Sponsors AI DuPont Hospital Anonymous Asset Management Bank of America Biogen Idec Blue Cross & Blue Shield of DE Buffalo Wild Wings Central YMCA Computer Sciences Corporation Contompasis Foundation Delaware Running Company Dole Fresh Fruit Company Double U Design Enterprise Flasher Hy-Point Dairy J & J Snack Food Mikimotos & Presto Pine Mountain Springs Pizza by Elizabeths Sheraton Suites Wilmington Theater N The Total Bakery Source Washington Street Ale House WJBR 99.5 FM WALK MS Presenting Sponsor Pot-Nets Communities 8
Sponsors Biogen Idec Bruster’s Chick-fil-A Clear Channel Outdoor D’Ambrosio Bakery Dole Heritage Shores Country Club Herr’s Pepsi Pfizer Spallco Rita’s Water Ice Wilmington Blue Rocks WJBR 99.5 FM MS BIKE TO THE BAY Presenting Sponsor NRG Energy Indian River Power Plant Sponsors Bank of America Bike Line Clear Channel Outdoor Dave’s Road Bikes, Inc. Dole Dunbar’s Cyclery Grotto Pizza Fast Signs Fifer Orchards The Fresconi/Guariano Family Hale Trailer Henry’s Bikes The Independent Order of Odd
Fellows Kirby & Holloway Moveable Feast Pine Mountain Springs Spallco Tom Wagner, State Auditor Total Bakery Source Winner Autoworld Wooden Wheels WJBR 99.5 FM WSFS Bank MS GOLF TOURNAMENT Title Sponsor Delaware Park Presenting Sponsor International Game Technology Sponsors AAA Mid-Atlantic Anonymous Damon Executive Event Planners Firebirds Restaurant The Golf Channel Mercedes-Benz Pepsi Potter Anderson and Corroon, LLP Puma/Cobra Mike Stapler READATHON Grant Sponsors DuPont Company Laffey McHugh Foundation
Throughout the year, the Delaware Chapter organizes events that raise funds and increase public awareness
MS. There are several key fundraising events per year: Walk MS, Bike MS: Bike to the Bay, MS Pro-Am Golf Tournament, Thanksgiving Day Run/Walk for MS, Bike MS: Crankin’ for A Cure, and Readathon. In addition to these Society hosted events, many of our about
dedicated volunteers host community events to raise funds.
For more information visit www.msdelaware.org. Sponsors Farley Printing Wilmington Blue Rocks
Committees Walk MS Monroe Colvett Jamie Colvett Marsha Custer Alyssa Dicker Dale Donaway Jamie Erwin Bekki Helton Lisa Marchione Louise McGinniss Walter McGinniss Marty McLaren Sheila Morrow Lindsey Ostafy Kay Oesterling Robert Oesterling Mindy Rolkowski Nicole Rowe Doreen Scott-Baker Charles Smutz Christa Scalies Amy Sterling Beth Tarrant Lisa Vitanza-Long Chapter Programs Erika Caesar, Esq.
Heyward Damon, Jr. Bob Faatz Bianca Fraser-Johnson Gail Jasionowski Matt Lenzini Kathleen Matt, PhD Maryanne Murray Stephanie B. Battis Rick Pulling, Jr. Nitin Rao, Esq. Michele Sammons, Chair Betty Sweeny Clinical Advisory Rae Booth Michael Carunchio, MD Thomas Celello, MD David Cozzolino Glen Greenberg, MD Alvin A. Lloyd Kathleen Matt, PhD Stephen Penny, MO Sanjai Rao, DO Frances Schanne, MD Ken Seaman Jason Silversteen, DO, Chair Governance Heyward Damon, Jr. Bianca Fraser-Johnson Lawrence Green Cheryl Heiks, Chair Carl Hertrich Tom O’Brien
Government Relations Diana Caine, Co-chair Vickie George Enrique Hernandez Robert Merritt Barb Meyer Maria McCabe, Co-chair Carolanne O’Brien Darnell Trower Amy Vittori Stephanie Weir MS Golf Tournament Robert Cecil, Esq Heyward Damon, Chairman Larry Green R.G. Hackett Ryan Kidwell Bill Koch Timothy Kozenski Jason Lenzini Alan Potts MS Bike to the Bay Peter Appel Scott Bailey Michael Berninger Tom Bremer Herk Carney Mike Carr Becky Harrison John Haupt Kathy Mitchell-Riley Rick Pulling
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2011 Annual Report
MS Bike to the Bay (cont.) Jackie Spence John Spence Henry Tremper Tracy Walls-Pulling PNC Bank Run/Walk for MS Jolly Bailey Cory Foard Tom Hanus Janine Harlam, Co-Chair Jack Holloway, Co-Chair J. Gordon Kaiser Dave Kasey Wayne Kursh William M. Lowther Rose Mili Kathy Rodriguez Bev Zimmermann
Board of Trustees Officers Chairman Carl Hertrich Vice Chairman Heyward Damon, Jr. Secretary Gail Jasionowski Treasurer Steve Kessler Governance Chair Cheryl Heiks 10
Audit Chair Maria Schaffer Clinical Advisory Chair Jason Silversteen, DO Members Stephanie A. Battis Diana Caine Bianca Fraser-Johnson Lawrence D. Green Richard Habibi Enrique Hernandez Matt Lenzini Kathleen Matt Maria McCabe Mary Anne Murray Tom O’Brien Alan Potts Capt. Rick Pulling Nitin Rao, Esq. Sanjai Rao, DO Michele Sammons Betty Sweeny Honorary Lifetime Board Members Robert E. Faatz Michael Friedberg Elizabeth Greene William M. Lowther Hugh Mulloy Charlie Potts John Prince
Delaware Chapter
The National MS Society is a collective of passionate individuals who move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn’t.
MS Society—Delaware Chapter 2 Mill Road, Suite 106, Wilmington, DE 19806 ph: 302-655-5610 • fx: 302-655-0993 msdelaware.org • kate.cowperthwait@nmss.org
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Annual Report design donated by Aloysius Butler & Clark