The National MS SocietyCount On Us. Annual Meeting offers

Fall/2004 Calendar of Events p. 12 Learn Online p. 19 Research Update p. 27

Leadership Day p. 7 Young Adults p. 7 Medication Errors p. 10

Fall 2004

Greater Delaware Valley Chapter

The National MS Society...Count On Us.

Annual Meeting offers inspiration and information ount on Us” is the fitting theme of the Greater Delaware Valley Chapter’s 2004 annual meeting, scheduled for November 17, 2004 at the Adam’s Mark Hotel. “We’re letting people know they can count on us for support, up-todate research and answers,” says Faith Cortright, the chapter’s program manager.

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The event, held from 9 a.m. to 3 p.m., will feature three comprehensive workshops, more than 50 exhibitors and celebrated keynote speaker, Zoe Koplowitz, a marathoner with MS and diabetes. Koplowitz is the author of “The Winning Spirit: Life Lessons Learned in Last Place.” Each workshop is conveniently scheduled twice so members can attend two out of the three sessions. “But You Look So Good...The Hidden Aspects of MS,” addresses symptoms that

aren’t obvious to family and friends. The two-part discussion will cover speech and swallowing problems and conventional and complementary medications. Speakers include Jeannie Metzger, a speech language pathologist at Good Shepherd Rehabilitation Hospital in Allentown and Dr. Donald Barone of the Kennedy Health System in Stratford, N.J. A workshop on accessibility and universal design will focus on the gadgets and equipment that make it easier for people with MS to perform everyday activities. Speakers also will display accessible yet stylish furniture designed for people with disabilities. The workshop features Jerry Werner, an occupational therapist at Good Shepherd Rehabilitation Hospital and David Raufer from HipHouse, a Philadelphia furniture company. continued on next page…

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The third workshop presents a panel of physicians who will explain cutting-edge MS research results. “It’s a very popular session,” Cortright says. “Everyone wants to know about the latest findings.” Panelists include Dr. Jeffrey Greenstein of the Graduate Hospital, Dr. Clyde Markowitz of the Hospital of the University of Pennsylvania, Dr. Alex Rae-Grant of Lehigh Valley Hospital and Dr. A.M. Rostami of Thomas Jefferson University Hospital. Dr. Thomas Leist of Thomas Jefferson University Hospital will serve as moderator.

National Multiple Sclerosis Society Greater Delaware Valley Chapter 1-800-548-4611 One Reed Street, Suite 200 Philadelphia, PA 19147 Chairman Linda J. McAleer Vice Chairmen Larry Kane Russell D. Napolitano Chair, Community Programs Trena Pelham, MD Secretary Maurice D. Glavin

The event will showcase over 30 exhibitors, including pharmaceutical companies, nursing homes, rehabilitation facilities, and health and wellness centers. Representatives from companies displaying medical equipment and car and home modifications also will be on hand. Participants can visit the exhibition area between workshops, or they can spend the workshop time perusing the displays.

Treasurer Douglas S. Strang Chapter President Judith G. Cohen Newsletter Co-Editors Susan Needham, PhD Amy F. Scarlett Contributing Writers Eileen Smith Dale Dallabrida Pam George The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use or contents of any product or service mentioned. The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS. Information provided by the Society is based upon professional advice, published information and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. ©2004 National Multiple Sclerosis Society, Greater Delaware Valley Chapter

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FROM PAGE 1

Along with information, the annual meeting will offer inspiration. Koplowitz will share how she found self-fulfillment and selfacceptance despite her disability. The volunteer appreciation luncheon, scheduled for 1 p.m., will be another source of encouragement. The chapter will recognize our Hall of Fame volunteers, who “continue to go above and beyond,” says Judith Cohen, the chapter president. “They’re volunteers who have a long history with us.” About 600 people are expected to attend this year’s annual meeting, which is free to the chapter’s constituency. To receive a mailed confirmation, register by November 1. In addition to the Annual Meeting Brochure information which was mailed to your home, there is also a registration form in this issue of “MS Connections.”

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FROM PAGE 1

Going the Distance When Zoe Koplowitz was diagnosed with MS in 1973, there were few treatment options. “They gave you a pat on the head, said they were sorry and sent you home,” recalls Koplowitz, now 56. She opted for a quiet, cautious life. A seemingly harmless vitamin changed all that. She nearly died when the pill went down the wrong way. Life, she realized, is a calculated risk, and she was going to take some. At age 40, she completed the New York City Marathon, a test of physical and mental endurance. Since then, she’s successfully completed 18 marathons. Her fastest time is 19 hours and 57 minutes; her slowest is 33 hours and 10 minutes. In both cases, she finished last. Her feat is all the more remarkable, considering she walks the marathons on crutches and she also has diabetes, a condition in which blisters can lead to serious foot problems. A marathon is a metaphor for living with MS, says Koplowitz, who lives in Manhattan. To reach the finish line, she concentrates on one stage at a time. She also relies on support in the race, just as she does in dealing with chronic illness on a day-to-day basis. Friends walk for a mile or a few hours, and the Guardian Angels escort her through the rough neighborhoods at night. She takes breaks in the same spots each year. “I’ve seen people grow up,” she says. Many give her flowers and charms to carry with her. “They want a part of themselves to cross the finish line,” she says. It doesn’t matter to the well wishers that she is the last to cross the finish line. “It’s not necessarily about being first,” she concludes. “It’s about doing everything you do with the center of your being.” Zoe Koplowitz is the keynote speaker at this year’s annual meeting on November 17.

THE ANNUAL MEETING “COUNT ON US” Wednesday • November 17, 2004 Adam’s Mark Hotel • City Avenue and Monument Road • Philadelphia www.adamsmark.com/philly/index.asp Registration begins at 9 a.m. • Program begins at 9:30 a.m. Call 1-800-548-4611 for additional event information or if you haven’t already received your Annual Meeting Brochure. www.nationalmssociety.org/pae

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COUNTY ZIP E-MAIL

ADDRESS

CITY

STATE

TELEPHONE

1-800-548-4611

___ I will not be attending the luncheon.

____ I need a vegetarian meal.

____ Bucks County, PA

For additional registrants please make copies of this form

____ Camden County, NJ

____ Berks County, PA

following areas: ____ Chester County, PA ____ Lehigh County, PA

___ I will not be attending the luncheon.

I will need transportation from one of the

Transportation

____ Community Center Exhibit Area

____ Research Update

____ Camden County, NJ

____ Bucks County, PA

____ I will be attending the luncheon.

Lunch

____ Community Center Exhibit Area

____ Research Update

____ Accessibility and Universal Design

____ Chester County, PA ____ Lehigh County, PA

____ Berks County, PA

following areas:

I will need transportation from one of the

____ I need a vegetarian meal.

Transportation

____ Community Center Exhibit Area

____ Community Center Exhibit Area

____ I will be attending the luncheon.

____ Research Update

____ Research Update

Lunch

____ Accessibility and Universal Design

____ Accessibility and Universal Design

____ Accessibility and Universal Design

____ “But You Look So Good”... The Hidden Aspects of MS

____ “But You Look So Good”... The Hidden Aspects of MS

____ “But You Look So Good”... The Hidden Aspects of MS

____ “But You Look So Good”... The Hidden Aspects of MS

Session 1 10:45 a.m. (Please check one) Session 2 12:00 p.m. (Please check one)

E-MAIL

ZIP

COUNTY

Session 1 10:45 a.m. (Please check one) Session 2 12:00 p.m. (Please check one)

TELEPHONE

STATE

(as you would like it to appear on your name badge) LAST NAME:

LAST NAME:

FIRST NAME:

(as you would like it to appear on your name badge)

Please list guest or assistants also attending:

NATIONAL MS SOCIETY 1 Reed Street, Suite 200, Philadelphia, PA 19147 www.nationalmssociety.org/pae 1-800-548-4611

FIRST NAME:

REGISTRATION FORM

2004 Annual Meeting & Volunteer Recognition Luncheon

Count On Us...

Space limited. Reservations are required.

Three ways to Register 1) Register online at www.nationalmssociety.org/pae 2) Complete the registration form and mail today 3) Call us at 1.800.548.4611 Return your registration by November 1 st, to receive a confirmation letter, directions to the facility and parking instructions.

SIGN UP NOW!

R E G I S T R AT I O N F O R M FALL2004

PRESIDENT’S MESSAGE he National Multiple Sclerosis Society’s fiscal year is drawing to a close which provides me a perfect opportunity to reflect on the past year and share information with you regarding the Society’s forwardlooking goals.

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thousands of requests for information, resources and support as well as by coordinating resources for people coping with MS and their families by providing equipment, incontinence supplies, home assistance, transportation services and financial assistance to help with home or automobile modifications.

The Society exists to fulfill our mission — to end the devastating effects of multiple As we move into the new year sclerosis. In addition to serving Judith G. Cohen the Chapter focuses on clear, the ongoing needs of our interactive communication clients, we are always searching with you, our clients. We begin our new for new outlets in which we can provide initiatives with this issue of “MS our programs and services. Connections” and the addition of the Just Throughout the 2003-2004 year we Wondering feature. You ask us questions concentrated on the varying needs of about MS and we provide you with the specific populations. For example, we answers — chances are great that you are reached out to the African American not the only person with the question. population with a hugely successful Delve further into the newsletter for more program — MS and the African-American information about Just Wondering. Experience — in which over 300 Another improvement slated for the individuals participated. The National MS winter is an overhaul of our Web site. The Society also hosted the first Young staff at the Society is forming a task force, Person’s Group where we specifically which will include some of you, to review targeted 20- and 30-year olds who have and revamp our existing site. Our goal is MS. Each time we host new events, we to provide clear, easy-to-access, interactive learn more about the diverse needs of information that you need. these targeted populations. The time and energy it takes to produce new programs and services is possible because of your efforts. We are a community-driven organization. You point out our opportunities in programs and services so we can bolster our offerings. Because of your advice we targeted new populations this past year and reached more individuals than ever before. We continued and expanded our client services, by responding to

You are our best source of ideas so as you think of additions or new programs and services, please let us know through our informational e-mail address at [email protected] or call us at 800-548-4611. I look forward to greeting you at our upcoming Annual Meeting or at the variety of programs scheduled throughout the fall and winter.

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PROGRAMS SIX AREA STUDENTS WIN SOCIETY SCHOLARSHIPS The Greater Delaware Valley Chapter of the National MS Society was fortunate to host six of 52 students nationwide who received the 2004 National Multiple Sclerosis Society Scholarship, created to assist those with MS or those who live with someone who has the disease, in their efforts to attain a higher education. Students were chosen for their excellent academic record, financial need, numerous activities and awards, and a personal essay about the impact of multiple sclerosis on their life. The six students were spread throughout our service area: Alison Parkin is a recent graduate of Council Rock South High School, Churchville, Pennsylvania; Anthony Rucci is a recent graduate of Catasauqua High School, North Catasauqua, Pennsylvania; Emily Martorano is a recent graduate of Burlington Township High School, Burlington, New Jersey; Lee Levkowitz is a recent graduate of Vineland High School, Vineland, New Jersey; Lori Tornetta is a recent graduate of Methacton High School, Audubon, Pennsylvania; and Mandi Tomlinson is a recent graduate of Franklintowne Charter High School, Philadelphia, Pennsylvania. “We know many families are struggling to cope with the financial impact of MS. We know of situations where students have deferred college acceptance to work and save money, and we even know of situations where a scholarship has been declined due to the lack of funds for non-tuition expenses. This is why we’re here — because MS shouldn’t stand in the way of an education,” says Judith G. Cohen, president of the Greater Delaware Valley Chapter. Congratulations to all of these fabulous students! Special thanks to Kent Griswold who funded the Jean Griswold Scholar Award in honor of his mother and to Neal Colton who funded three Gwen Colton Scholar Awards in memory of his late wife. From top to bottom(clockwise): Alison Parkin, Anthony Rucci, Emily Martorano, Lee Levkowitz, Lori Tornetta and Mandi Tomlinson

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PROGRAMS SELF-HELP GROUP LEADERSHIP DAY People with MS count on the Greater Delaware Valley Chapter of the National Multiple Sclerosis Society for information and support. And the chapter relies on leaders and volunteers to help deliver those services. “This is a volunteer-driven organization, and quite honestly, our work couldn’t be done without the help of many people,” says Judith Cohen, the chapter president. On November 17, the chapter will hold its annual Leadership Day, an afternoon of recognition, training and networking for Self-Help group leaders and the Information and Resource (I&R) staff. The event takes place at the Holiday Inn on City Line Avenue in Philadelphia. Self-Help groups, which offer peer support and information, are offered in 18 counties. Some groups target special needs, such as caregiving or parenting. Others are more general and feature group discussions or guest speakers. The volunteer group leaders provide an important network in their communities and serve as a link between members and the chapter. Attendance at Leadership Day is by invitation, and guests may stay overnight at the Holiday Inn to attend the annual meeting on November 18. Leadership Day registration begins at 2 p.m.; the program begins at 3 p.m.; and dinner is served at 6 p.m. For more information, call Faith Cortright at 1-800-548-4611, extension 164.

YOUNG ADULTS SHARE CONCERNS

Ah, the exuberance of youth — and the challenges of multiple sclerosis. The two aren’t mutually exclusive, especially when young people with MS have the support of their peers and a forum for airing their concerns. On June 23, 26 adults aged 21 to 35 met at Dave and Buster’s on the Philadelphia riverfront to talk about living with MS and to share ideas for educational and wellness programs. In a two-hour session, adults with MS and chapter staff came up with suggestions for programs on pregnancy, employment and wellness. “The young adult discussion was a great program in that I was able to meet people my age who are dealing with same problems,” one woman said. “I discovered connections that I did not know existed.” She added that she hopes the chapter will have more discussion groups — and she will get her wish. The chapter hopes to sponsor events in other counties to help generate ideas. The Society also is forming an advisory group of young adults to discuss ways to blend their concerns into programs. If you are interested in serving on the committee, contact Sarah Talasnik at the Society at (215) 271-1500, extension 175 or e-mail [email protected].

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PROGRAMS SOCIALIZING IN THE SUMMER People with MS and their families got together at two socials in July — for the sole purpose of interacting with one another and having fun. At Sesame Place in Oxford Valley, Pennsylvania, Bert and Ernie greeted 317 visitors from the chapter, including members and their guests. At an event at Dorney Park & Wildwater Kingdom in Allentown, Pennsylvania, 540 members and their families turned out for a day of activities, including a picnic, water rides, a roller coaster and shopping. The socials, which were sponsored in part by Serono/Pfizer, allowed families to take a break from the physical, emotional and financial burdens that often come with MS to enjoy a day of fun together. In addition, they had the chance to network with other families and to learn that they are not alone in dealing with MS. Lucien Garo of King of Prussia, Pennsylvania, said he was especially appreciative for the use of a motorized scooter, provided free of charge. “It helped me to keep up with the kids and enjoy the day,” he said. “The family trip was fun-filled for everyone.” Look for more family socials in 2005!

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Families of all ages enjoyed this year’s Sesame Place Family Day.

RESOURCES

Just Wondering…

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n this issue, we’re launching a new feature called Just Wondering. In this column, we’ll answer some of the most commonly asked questions about MS, including its symptoms and treatments. We’ll also answer questions often asked about the Greater Delaware Valley Chapter, its programs, services and events. With each issue, we’ll tackle a few new questions, and archive the olds ones on our Web site so you can always refer back to them. We want the newsletter to be as alive and useful to you as it can be, so please be sure to let us know what questions you’d like to see answered here. We’ll take the ones we think will be of interest to the broadest range of our readers, consult the experts for the answers, and print them here. To submit a question, leave a message at 1-800-548-4611 extension 411 or e-mail [email protected]. Q: IS IT OKAY FOR A PERSON WITH MS TO HAVE AN OCCASIONAL COCKTAIL?

Q: WHY IS YOUR NEWSLETTER PRINTED IN SUCH LARGE TYPE?

A: An occasional cocktail is probably not an issue for concern. Alcohol consumption in moderation is fine, unless you take medications that cannot be combined with alcohol.

A: Because one of the more common symptoms of MS is visual impairment, it is the policy of the National MS Society to publish all client materials in at least 14-point font. This ensures that our materials, including the newsletter, are easier to use for people with vision difficulties.

However, some people with MS report that some of their neurological symptoms, especially imbalance and lack of coordination, worsen temporarily after even one drink. Since alcohol depresses the central nervous system, it may also have an additive effect with certain medications that are commonly prescribed for MS. These include baclofen, diazepam, clonazepam, and some antidepressants. It’s always best to talk to your physician about how much alcohol is appropriate for you to drink and how often.

Q: DO YOU HAVE ANY LITERATURE ABOUT HEALTHY EATING AS IT RELATES TO MS? A: Yes. There are many good sources of information about nutrition and MS. The National MS Society has a lending library available to you. Access the library by visiting our Web site at www.nationalmssociety.org/pae. There is a link at the top of the page called “Library and Literature.” Click on the link to access a search of our library materials, or call us at 1-800-548-4611.

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RESOURCES

Avoiding Medication Errors aking the wrong medications or taking medications incorrectly can have serious consequences or even be fatal. Here are some suggestions to help you and your loved ones avoid harmful drug interactions, problems with dosages and other potential adverse effects.

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At home: • Make a list of all your medications, including the dosage, frequency of use, condition it is for, name of pharmacy and prescribing physician. • Any time your medications change, change your list. • Keep all medications in their original containers. • Don’t chew, crush or break capsules or tablets unless so advised. You may make the medications unsafe or ineffective. At the doctor’s office: • Bring a copy of your medication list on every visit. • If your doctor offers samples, ask if the medications will interfere with any other medications you are using. • Ask the drug name, how the prescription should be filled, and how often the medication should be taken.

• Encourage the doctor to institute electronic prescribing as a way of enhancing patient safety. At the hospital: • Take your loved one’s medication list with you. • Ask the physician the names of any new medications to be used and the reasons they are being prescribed. • Look at all medications before you take anything. If they appear different from what you usually take, question why. • Ask hospital staff to check your hospital ID bracelet before administering medications to prevent receiving someone else’s medicines. • When you are ready to go home, have a knowledgeable person review each medication with you. Find out what condition it treats and whether it is to be taken in addition to what you have at home for the same condition or in lieu of it. Ask about possible side effects. Update your medication list from home as needed. (Reprinted from “Take Care!” with permission of the National Family Caregivers Association, Kensington, MD, the nation’s only organization for all family caregivers. 1-800-896-3650; www.nfcacares.org)

• Ask the doctor to write the purpose for the medication on the prescription. Drug names can be “look-alikes” when written in longhand. Having the purpose noted will help the pharmacist to double check the prescription. 10

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RESOURCES

I N F O YO U C A N U S E

Check Out What’s Available Through Our Lending Library

“The Accessible Home” This handy book offers how-to instruction and tips on everything from increasing wheelchair access throughout a house to installing an accessible and attractive bathroom. The book also provides a list of national resources that provide additional information on creating accessible space and a section on finding a contractor.

“Elder Design” Although written for the aging population, many of the ideas, tips and concepts can be adapted for people with physical disabilities. Chapters are arranged by room, or you can skip right to the chapter on Designing for Specific Physical Conditions. The book provides an Action Plan that serves as a guideline for important questions one needs to ask if renovating a home. The book also provides an extensive list of resources for various products that will make a home more accessible. To borrow an item from the library or to receive a copy of the catalog, call 1-800-548-4611, extension 155 or visit the website at www.nationalmssociety.org/pae. Click on the “Library and Literature” link.

REVIEW YOUR MEDS WITH ONE EASY FORM

Here’s a convenient new way to help keep track of medications. A Review of Regular Medications Form is now available from the National Multiple Sclerosis Society. The form enables you to readily list various medications, how often you take them, the dosage, refills and special instructions. It could be an important tool in monitoring your care, especially if you take more than one medication and have several doctors. Take the form with you to all your appointments so you can readily provide your medical team with information regarding your prescriptions. To request a copy, call the Information and Resource Center at 1-800-548-4611.

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CALENDAR OF EVENTS Please note that space is limited and registration is required for all programs. When program location is indicated for the NMSS Office, the session will be held in the GRISWOLD SPECIAL CARE Wellness and Education Center. Programs are free unless otherwise indicated. Limited financial assistance may be available through the Greater Delaware Valley Chapter of the National MS Society. For more information or to register, contact the Chapter at 1-800-548-4611.

Gentle Yoga Series Michelle Carlino, CYT, Instructor Date:

*No class on November 28 Time:

11 a.m. to 12:30 p.m.

Location:

Barry Brown Education Center, Voorhees, NJ

To Register: 1-800-548-4611 ext. 255

Yoga at Good Shepherd Kathy Toseland, MA, Instructor

OCTOBER

Dates:

Tuesdays, January 4 through February 22

Michelle Carlino, CYT, Instructor

Time:

11 a.m. to 12 p.m.

Date:

Location:

Good Shepherd Rehabilitation Hospital Edward’s Center

Gentle Yoga Series Mondays, October 18 through December 13 *No class on November 15 Time:

10 a.m. to 11:30 a.m.

Location:

NMSS Office - One Reed Street, Philadelphia, PA

To Register: 1-800-548-4611 ext. 255

Balancing Your Body

820 S. 5th Street Allentown, PA 18103 Cost:

$40 ($5 per session)

To Register: 610-778-9303 and ask for Jerry Werner

Liz Watson, PT, Magee Rehabilitation

Nutrition: Separating Diet Fact from Fiction

Date:

Thursdays, October 14 through December 16

Gavi Kestenbaum, Presenter Date:

Wednesday, October 20

*No class on November 11 and November 25

Time:

6 p.m. to 7:30 p.m.

Location:

NMSS Office - One Reed Street, Philadelphia, PA

Time:

11 a.m. to 12 p.m.

Location:

NMSS Office - One Reed Street, Philadelphia, PA

To Register: 1-800-548-4611 ext. 255

To Register: 1-800-548-4611 ext. 255 12

Sundays, October 10 through December 5

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CALENDAR OF EVENTS

Creative Journaling Judy Brett, MA, Instructor

NOVEMBER

Date:

Friday, October 22 & 29

MS Aquatic Exercise

Time:

10 a.m. to 11:30 a.m.

Date:

Location:

NMSS Office - One Reed Street, Philadelphia, PA

Tuesdays and Thursdays November 1 through December 18

Time:

10 a.m.

Location:

Rodale Aquatic Center, Allentown, PA

To Register: 1-800-548-4611 ext. 255

A Special Night Out For Couples

To Register: 610-606-4670

Featuring Cheryl and Len Chatman

Cost:

Date:

Thursday, October 21

Time:

6 p.m. to 8:30 p.m.

Location:

Williamson’s Restaurant, Horsham, PA

To Register: 1-800-548-4611 ext. 260

The Latest Updates in Multiple Sclerosis Featuring Omar Kahn, MD Date:

Sponsored by TEVA Neuroscience

Spasticity and MS Featuring Jeffrey Greenstein, MD

$95 per seven-week session

Saturday, November 6 (two locations)

Location #1: Doubletree at Plymouth Meeting, PA Time:

8 a.m. to 11 a.m.

—OR—

Date:

Saturday, October 30

Time:

8 a.m.

Location #2: Belle Voire Manor, Bensalem, PA

Location:

Philadelphia Airport Marriott

Time:

1 p.m. to 4 p.m.

To Register: 1-800-548-4611 ext. 259

To Register: 1-800-548-4611 ext. 262

Co-Sponsored by Medtronic

Sponsored by TEVA Neuroscience

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CALENDAR OF EVENTS

Teleconference: Financial Planning for a Life With MS Featuring Gene King, MST, CFA, CSA Date:

Tuesday, November 9

Time:

12 p.m. to 1 p.m.

Location:

by phone from your home or office

DECEMBER Teleconference: Art Talk: Photography In collaboration with the Philadelphia Museum of Art

To Register: 1-800-548-4611 ext. 262

Teleconference: Art Talk: African Voices In collaboration with the Philadelphia Museum of Art Date:

Wednesday, November 3, 7 and 17

Time:

1 p.m. to 2 p.m.

Location:

by phone from your home or office

Date:

Wednesday, December 1, 8 and 15

Time:

1 p.m. to 2 p.m.

Location:

by phone from your home or office

To Register: 1-800-548-4611 ext. 255 *Because space is limited, special consideration will be given to first-time participants.

JANUARY MS Aquatic Exercise

To Register: 1-800-548-4611 ext. 255

Date:

*Because space is limited, special consideration will be given to first-time participants.

Tuesdays and Thursdays January 3 through February 19

Time:

10 a.m.

Location:

Rodale Aquatic Center, Allentown, PA

To Register: 610-606-4670 Cost:

$95 per seven-week session

MS LEARN ONLINE An internet-based educational program • Quality information

• Convenient access

To connect to MS Learn Online go to: www.nationalmssociety.org Select “Educational Programs” and look for the MS Learn Online section 14

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CALENDAR OF EVENTS

Gentle Yoga Series Pat Albright, Instructor Date:

Wednesdays, January 12 to March 2

Time:

10 a.m. to 11:30 a.m.

Location:

NMSS Office - One Reed Street, Philadelphia, PA

To Register: 1-800-548-4611 ext. 255

Gentle Yoga Series Michelle Carlino, CYT, Instructor Date:

Sundays, January 15 to Sunday, March 6

Time:

11 a.m. to 12:30 p.m.

Location:

Barry Brown Education Center, Voorhees, NJ

To Register: 1-800-548-4611 ext. 255

Teleconference: Art Talk: Sculpture In collaboration with the Philadelphia Museum of Art Date:

Wednesday, January 12, 19 and 26

Time:

1 p.m. to 2 p.m.

Location:

by phone from your home or office

FUND RAISING

Homerun for our MVP Read-a-thon Students The Society recently recognized elementary- and middle school-age children for their reading and fundraising efforts for the 2003-2004 Read-A-Thon, a program of the National Multiple Sclerosis Society, Greater Delaware Valley Chapter. More than 11,000 students at 275 schools participated in this year’s program; they raised over $508,000. The National MS Society hosted a Read-A-Thon MVP Awards Program for the 38 students who raised more than $500 each — several of whom raised more than $1,000 each. Schools that raised at least $8,000 also were honored. A Philadelphia Phillies game followed the awards program. Eight students raised $1,000 or more during the 2003-2004 Read-a-thon program. Congratulations to Omar Rambert-Daniels for raising over $3,000! Congratulations to our MVPs!

To Register: 1-800-548-4611 ext. 255 *Because space is limited, special consideration will be given to first-time participants.

Space is limited - register early!

Front row: Kelsea Schagrin, Omar Rambert-Daniels, Fancesca Papazis. Back row: Sarah Haig, Becka Boguski, Philadelphia Phillies’ Ryan Madson, Samantha Walkwitz. Not pictured: Natasha Gadsden and Zachary Rocktashel.

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FUNDRAISING

WORKPLACE DONATIONS AND THE

United Way Give to the Greater Delaware Valley Chapter of the National MS Society through United Way’s Donor Option Program. It’s easy! Complete your United Way pledge form and mark the section for Donor Choice or Donor Option. For the United Way of Southeastern Pennsylvania, our agency code is #00243. For all other United Way Campaigns and workplace giving campaigns, please check the booklet listings or simply fill-in the chapter’s name and address as follows: National Multiple Sclerosis Society Greater Delaware Valley Chapter One Reed Street, Suite 200 Philadelphia, PA 19147

Other workplace donor programs include: • Community Health Charities • State Employees’ Combined Appeal • Combined Federal Campaign

Thank you for thinking of the National MS Society when you contribute through your workplace campaigns! For more information, please contact: Dolores Kerslake at 800-548-4611 [email protected] 16

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FUNDRAISING

If Only We Had Known he National Multiple Sclerosis Society recently received a surprise bequest of $10,000 from the estate of a woman we had never thanked. Of course, we appreciated the gift immensely. It revealed a gracious and generous person — someone special. The gift will certainly help us accomplish our mission of ending the devastating effects of multiple sclerosis.

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But we feel a bit cheated. We never had the opportunity to express our gratitude to her for such kindness. We were unable to let her know how much her gift would mean. If only we had known, we could have said, “Thank you.”

1-800-923-7727 or e-mail us at [email protected] so that we can add you to our Honor Roll. If not, perhaps you will let us send you a free but valuable guide, “Creating a Legacy Through Your Will,” about gift and estate planning. Just call us at the above listed number to request your copy. It is worth reading whether or not you choose to make a future gift to the National Multiple Sclerosis Society.

We encourage our friends to let us know when they include the Society in their estate plans. Not only can we express our appreciation, but also we can make sure that they are kept up-to-date with all of the developments the Society makes toward a cure for MS.

MS strikes adults as they start college, start families, start careers.

The Society has established the “Pillars of Society” which recognizes those who have included the Society in their estate plans. Members automatically receive a certificate signed by General Mike Dugan, president and CEO, special updates throughout the year, and an invitation to attend a special Leadership Dinner at our annual National Leadership Conference. Current Pillars of Society members are listed in our Honor Roll of Philanthropy on our Web site at www.nationalmssociety.org under Get Involved.

MS never takes a holiday.

If you’ve named the Society in your estate plans, please contact us at

This is why we care. Learn about local MS services at www.nationalmssociety.org/pae

This is why we give. Ask us about year-end giving to the fight against MS. Call 1-800-548-4611. This year more than 37,000 people in the Delaware Valley area will participate in a National MS Society event.

This is why we need volunteers! Call us to find out how you can help, 1-800-548-4611.

www.nationalmssociety.org/pae

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FALL2004

ADVOCACY

“IF YOU DON’T VOTE, YOU DON’T COUNT.” accessibility problems to their There has never been a local election board. The N.J. more important time to Division of Elections recently vote — the 2004 updated its website to include Presidential election is a form in which voters can predicted to be the closest forward their concerns over in history. NOW is the time voter accessibility. The to ensure that the 50 million form asks voters to Americans with disabilities identify their polling place exercise their right to vote at to specify the type of difficulties when an accessible polling place. voting. The Web site can be accessed • 38 percent of all people with at: http://www.NJElections.org disabilities are not registered to vote. • In 2000, 41 percent of Americans with disabilities voted versus 51 percent of all adults — a difference of 10 million people. To Ensure Access to Your Polling Place • Contact the local board of elections NOW to find out if your local polling place is physically accessible and whether accessibility devices are available. • If a polling place is not accessible, request that accommodations be made or request reassignment to one that meets the ADA checklist for polling places. www.ada.gov/votingchecklist.htm • Voters are permitted to ask a poll worker for assistance or bring someone to help. • Voters with disabilities may apply to vote with an absentee ballot. Some states have deadlines for these applications. • Access to polling places is your right. People with disabilities must report 18

TA K E A C T I O N

JOIN THE MULTIPLE SCLEROSIS ACTION NETWORK The MS Action Network is the center for Advocacy at the National MS Society. Together we represent the interests of people with MS as important policy decisions are made in both the public and private sectors. Our advocacy is focused on: federal funding for MS research, quality health care, long-term care, disability rights, and health insurance and prescription drug coverage. The MS Action Network works on these important issues at the federal, state, and local levels. To join the MS Action Network, go to http://capwiz.com/nmss/mlm/

1-800-548-4611

E D U C AT I O N

MS Learn Online Announces Bonus Web Cast Series or the second time this year, MS Learn Online® announced a BONUS web cast series. This bonus series includes four separate interviews taped at the American Academy of Neurology meetings this past April. Unlike other MS Learn Online® programs, these web casts do not contain any slides; they are audio only.

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BONUS WEBCASTS: • TOPIC: Long Term Slowing of Disability Progression in Patients using Glatiramer Acetate (commercial name Copaxone) TOPIC EXPERT: Kenneth Johnson, M.D., Professor of Neurology, University of Maryland and Director of Maryland Center for Multiple Sclerosis • TOPIC: Effects of Donepezil (commercial name Aricept® on Memory and Cognition in MS: Comprehension Analysis of the AMES Study TOPIC EXPERT: Lauren Krupp, M.D., Professor of Neurology at State University of New York at Stony Brook • TOPIC: Effects of Estriol on Imaging Markers of Tissue Loss in Patients with Multiple Sclerosis TOPIC EXPERT: Nancy Sicotte, M.D., Assistant Professor of Neurology at UCLA • TOPIC: Erythropoeiten therapy effective in MOG induced Experimental Autoimmune Encephaloymyelitis TOPIC EXPERT: Peter Dowling, M.D., Chief of Neurology, East Orange Veterans Administration Hospital, New Jersey and Professor of Neurology and Neurosciences, University of Medicine and Dentistry in New Jersey

These interviews are in addition to our regularly scheduled MS Learn Online® programs. Like other programs, you can access a web cast by going to www.NationalMSSociety.org/ MSLearnOnline. If you are on MS Learn Online’s® mailing list, you will receive an e-mail notice notifying you of each new program’s availability. Anyone can receive MS Learn Online® e-mail notices by simply sending their e-mail address to [email protected]. Recent and upcoming MS Learn Online® programs include: • Health Insurance – Private Insurance (available now) – Public Insurance (available now) Topic Expert for Both Health Insurance Broadcasts: Kimberly Calder, MPS Manager, Health Insurance Initiatives National Multiple Sclerosis Society New York, NY • Clinical Trials – Understanding Clinical Trials - part I (available now) – Understanding Clinical Trials - part II (available after Oct. 7, 2004) – How Do I Participate in a Trial? (available after Oct. 21, 2004) – Trials Currently Underway (available after Nov. 4, 2004) Topic Expert for All Clinical Trial Broadcasts: Jeffrey Cohen, MD The Mellen Center Cleveland Clinic Foundation Cleveland, Ohio

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FALL2004

P RO F E S S I O N A L E D U C AT I O N

National Professional Education Series for Nurses Coming Soon

W

e are pleased to announce a new professional education series entitled “Early Diagnosis and Early Treatment of MS: What Nurses Need to Know,” which will be scheduled in several locations within the chapter during late 2004 and 2005. The topic of the program is the importance of early diagnosis and early treatment of multiple sclerosis. Along with background information on MS, clinically isolated syndromes, and the disease modifying therapies, the program will offer practical recommendations on how to promote adherence to therapeutic regimes.

chair of the Society’s Research Programs Advisory Committee and member of the Advisory Committee on Clinical Trials of New Drugs. • Ms. Ben-Zacharia — who is also affiliated with Mount Sinai’s Corrine Goldsmith Dickinson MS Center — is an MS certified nurse and is certified as a nurse practitioner in adult and acute care. CME credits will be available for this program. For more information, look for upcoming flyers or contact Susan Needham at 1-800-548-4611 or [email protected].

The CE-approved program will consist of a 40-minute video presentation (available on VHS or DVD), which will be followed by a 20-minute discussion/ Professional Education Series Q&A period, hosted Early Diagnosis and Early by an MS-certified nurse. Treatment of MS: What Nurses

Need The video presentation, which is currently in postproduction, features Fred Lublin, MD, and Aliza Ben-Zacharia, CNP-A.

to Know

• Dr. Lublin is director of the Corrine Goldsmith Dickinson MS Center — a Society-affiliated MS center. He is also a clinician, researcher and professor of medicine at the Mount Sinai School of Medicine in New York City, as well as the immediate past 20

1-800-548-4611

S TA F F P RO F I L E

Staff Profile my Scarlett, the chapter’s new vice president of communications, is coming home — both to the east coast and to her roots in non-profit work.

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about,” she said. “I’m trying to build an infrastructure in our department in terms of graphic design and writing in hopes of building more interactive communication with our clients.”

A native of York, Pennsylvania, Scarlett worked in communications at Memorial Hospital, as well as for the United Way of York County.

A graduate of Elizabethtown College in Pennsylvania, Scarlett moved back east from Scottsdale, Arizona, where she worked in media relations for the Air Line Pilots Association.

“I really enjoyed my time in health care,” she said. “I feel most comfortable working in places where people care about others.” One of her goals in her new position is to make the newsletter more visually attractive and more relevant to readers.

Amy Scarlett

“I feel most comfortable working in places where people care about others.”

“We’ll be asking clients for their ideas, the kinds of topics they’d like to learn more

In her new role, she’s determined to raise awareness of MS to new heights. “We need to get the word out about the types of programs and services we offer as well as our special events,” she said. “When people have access to more information and support, their lives can improve.”

Do you have the knowledge to overpower MS? Knowledge Is Power! is a free, at-home educational series designed to help people who are newly diagnosed learn to live with the devastating effects of MS. For more information or to register, please call 1-800-FIGHT-MS, e-mail us at [email protected] or visit us at www.nationalmssociety.org.

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FALL2004

VOLUNTEERS

Calling all volunteers! The MS Society wants you! Volunteers at the Greater Delaware Valley Chapter of the National MS Society all have one thing in common — they are caring individuals working together to help people with MS. This fall and winter, there are many special opportunities for volunteers in Philadelphia to help raise both money and awareness of MS. The Annual Meeting, slated for November 17, is just one example. In addition, the Society is always grateful for volunteers to help with special projects at the offices in Philadelphia and Allentown. To learn more about how you can lend a hand, contact Kathie Cronk, manager of volunteer development at 1-800-548-4611, extention 132 or at [email protected]

So, what’s in it for the volunteers? Consider these benefits: • The joy of participating in rewarding work. • Making a difference in the lives of more than 11,000 area individuals living with MS and their families. • Becoming part of a team of family and friends who volunteer together. • Sharing your skills and talents with people with MS and with other volunteers. • Developing new and marketable skills through training and orientation programs. • Serving as a leader in your community. • Facilitating internships for college students. • Support research that will bring about an end to the devastating effects of MS. • Fun, fun, FUN!

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1-800-548-4611

SUPPORT

SELF-HELP GROUPS Training new group leaders: Training new leaders helps to keep the network of self-help groups strong and growing. In June, the chapter trained leaders for a new MS self-help group at the Good Shepherd Home in Bethlehem. The home provides occupational therapy, physical therapy and speech therapy in a long-term residential setting. The chapter also trained group leaders at Magee Rehabilitation Center, at 1513 Race Street in Philadelphia. Magee plans a new self-help group open to the community, to begin later this year. GROUP UPDATES • Friends with MS — Lehigh Valley Nancy Eckert, RN, BA, of the Lehigh Valley Hospital MS Center was the guest speaker at the September meeting. Nancy discussed community resources, current research and ways to build good patient-doctor relationships. The group has begun hosting a game night on the fourth Wednesday of each month. While group meetings focus on MS issues, game night is a time to socialize and have fun. • The Montgomery/Pottstown Group welcomed Amy Lane of Health and Wellness Health South. She demonstrated light exercises that can be done from a chair. • The Lower Bucks Group gave an enthusiastic response to a presentation on identity theft, courtesy of the local district attorney’s office.

• S’myelin in West Chester at ACAC This past September the group hosted two guest speakers from the Chester County Office of Disabilities Services. Linda Reading discussed general services, and William McGrory spoke about computer services provided through the Office of Disability Services. On October 7th urologist, Dr. Bernstein, will speak to the group about a symptom of MS — bladder problems. • Inglis House residents enjoyed a sixweek yoga course, tailored to the needs of people with limited mobility. Instructors Marian Garfinkle and Pat Albright worked one-on-one with residents, inspiring and coaxing them to realize their potential. Students learned exercises and relaxation strategies to use on their own. This popular class helped students increase physical flexibility, as well as overall well-being. • Berks County Group members gave positive reviews of the “Financial Planning” presentation delivered by a presenter from the Waddell & Reed office. • Gloucester/Washington Group welcomed Dottie Pfohl, RN, MSCN of MS Center at the Hospital of the University of Pennsylvania, at their September meeting. Dottie spoke about general MS symptoms from a nursing perspective. The group will host an “Ask the Pharmacist” presentation at their October meeting.

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FALL2004

SUPPORT NEW GROUPS ARE FORMING Attention men in the Lehigh Valley area: Maybe you like to network with others dealing with MS, but you just aren’t comfortable discussing some issues in mixed company. A growing number of men in Carbon, Northampton and Lehigh counties are interested in starting a men-only group. If you’d like to explore joining, call Jamie Kelly at 1-800-548-4611 or email [email protected]. A self-help group is forming in the Montgomery and Bucks County area for gay and lesbian people living with MS. Anyone interested in helping to lead or attending this group should call the chapter at (800) 548-4611 and speak with Jamie Kelly. Fall is a great time to plan group activities and schedule speakers for the coming year. Be sure to join your group’s planning meeting and have your vote count. The chapter has a professional speakers’ bureau and can help groups find speakers. If you’d like to recommend a speaker, call Faith Cortright at 1-800-548-4611 or e-mail [email protected].

To start a self-help group or find out more about groups in your area, contact Jamie Kelly at 1-800-548-4611 or [email protected].

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IF YOU ARE A MOM OR DAD WHO HAS MULTIPLE SCLEROSIS, WE HAVE A RESOURCE FOR YOU!

Keep S’myelin is a free newsletter designed to help kids ages 5 to 12 learn how to live and be comfortable with MS by providing accurate information in a format that is easy and fun to read. Puzzles, games and a parents’ section are included, too!

Keep S’myelin will surely keep both kids and parents smiling and informed about MS.

For more information, call the National MS Society at 1-800-FIGHT-MS or visit www.nationalmssociety.org.

1-800-548-4611

THANK YOU

■ Thanks to American Mobility in

Bensalem, PA and its suppliers who provided 15 scooters for members to use free of charge at our recent Family Fun Day at Dorney Park. Their generosity allowed these members to see more of the park and enjoy more of the fun with their families than they would have on foot or using manual wheelchairs.

■ Kim Bock recently received a $1,000 grant from the Sam’s Club Foundation for her efforts on behalf of the National MS Society. Kim is walking in the upcoming Challenge Walk and was presented with this check at a special luncheon at Sam’s Club.

■ Thanks to the many supporters

who donated air conditioners to members through our air conditioner exchange program. Through your kindness, many area clients made it through another summer with fewer heat-related symptoms.

■ Kudos to the students and faculty at Maternity B.V.M. School where Jeannine Roach raised over $400 by selling MS Walk Sneakers for the May 2 Walk. The money was raised in honor of Jeannine’s mom who has MS. Way to go Jeannine! From George, Miss Veasy, Mrs. McGarry and Team Red Tiger.

■ KormanSuites International City

recently held a car wash fundraiser for the National MS Society. Thanks to KormanSuites for raising over $500 for our chapter!

■ While learning about the concept of

charity and non-profit organizations, the students of Tiferet Bet Israel Religious School recently raised and donated money to the National MS Society. Thanks for your contribution!

■ Thanks to the employees at Equity One in Marlton, NJ for their donation from their recent Jeans Day.

■ HealthSouth Reading Rehabilitation Hospital contributed over $3,000 from a recent fundraiser.

■ The Grand Chapter of the

Pennsylvania Order of the Eastern Star, Inc. recently held its Annual Grand Session at the York Expo Center. During the Informal Session, a check presentation was made by Jo-Anne Karnes, Worthy Grand Matron of The Grand Chapter continued on next page…

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FALL2004

THANK YOU of Pennsylvania Order of the Eastern Star and Worthy Grand Patron Ronald Kerns to Margie Adelmann, President of the Central Pennsylvania Chapter of the National Multiple Sclerosis Society The check totaling $127,726.37 represents funds raised from their special project “Melt MS” snowman pin sales. This donation brings their fund raising for MS to over $700,000 in 6 years! Funds generously donated from the Grand Chapter of the Pennsylvania Order of the Eastern Star, Inc. will be used to provide programs and services in the state of Pennsylvania to those living with the challenges of multiple sclerosis. The National MS Society is incredibly fortunate to have the commitment of this organization and its wonderful members to our mission.

■ The Society Receives Thanks . . . Dear National MS Society: This letter is to thank you for sponsoring me in my county’s program to build ramps for the handicapped. This program is one where the county, using corrections officers and selected prisoners, will provide the planning and the labor to build an accessible ramp. You paid the cost of the materials. I have been confined to a wheelchair for the last year. We have moved to an accessible house, but getting in and out was almost impossible. Now with the ramp, I can get out to the car, the yard or where ever I need to go. My other MS friends can come into my home. Thank you so much. You have no idea how much this has added to the quality of my life. This has been such a wonderful addition to my home and my life. Thank you, thank you, thank you. Sincerely, Virginia Bednarczyk

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1-800-548-4611

RESEARCH NEW STUDIES MAY LEAD TO BETTER MS TREATMENTS

believe this disease is similar to MS in humans.

Recent groundbreaking research may point the way to better therapies for people with multiple sclerosis.

The treated mice suffered fewer and milder EAE attacks, and their brain and spinal cord tissues showed less damage to myelin and nerves, compared with untreated mice. Besides stimulating production of Nogo-blocking antibodies, Nogo vaccinations acted on the immune system in other ways to help tame an aggressive attack.

A protein called Nogo, found in the brain, could hold the secrets to stimulating nerve repair. Unlocking those secrets may reveal ways to restore function in people with MS, spinal cord injury or stroke damage. Part of the myelin coating that insulates nerve fibers, Nogo acts to prevent damaged nerve fibers from repairing themselves. In fact, Nogo may be part of the reason that nerves in the brain and spinal cord don’t regenerate easily. However, Australian researchers found that vaccinating mice with Nogo eased the severity and duration of an MS-like disease. The Nogo injections prompted the mice’s immune systems to produce antibodies, which neutralized the Nogo and allowed nerve repair. Published in the July 7 issue of “Nature Neuroscience,” the research was partially funded by the National Multiple Sclerosis Society. Mice that received weekly Nogo shots were less prone to EAE, a laboratoryinduced disease in which the autoimmune system attacks brain and spinal cord tissues, destroying myelin and damaging nerves. Researchers

Later experiments showed that mice bred to be deficient in Nogo also had some protection against EAE. For these mice, the disease had a delayed onset, shorter duration and milder symptoms. Researchers continue to study Nogo. If further work supports and expands the recent findings, Nogo or a similar molecule may play a role in the development of new treatments for people with multiple sclerosis. Society funding for this work included a research grant to Claude Bernard, DSc, PhD, of La Trobe University, Bundoora, Australia, as well as a postdoctoral fellowship to collaborator Wim Mandemakers, PhD, of Stanford University Medical Center. Dr. Mandemakers’ project was paid in full by the Alan Buegeleisen Research Fund, in honor of National MS Society founder Sylvia Lawry.

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FALL2004

RESEARCH PROTECTING NERVE FIBERS FROM DAMAGE Researchers report on a protein that may protect nerve fibers from damage. This finding presents a possible therapeutic target in diseases, such as multiple sclerosis, where these fibers degenerate. Dr. Toshiyuki Araki and colleagues from Washington University in Saint Louis, including past NMSS grantee, Dr. Jeffrey Milbrandt, studied a mouse model in which nerve fiber damage is delayed after injury. The team found that administering a compound that deactivates “Sir2” proteins eliminated the delay, exposing nerve fibers to damage more quickly. Sir2 proteins have been linked to extended lifespans in yeast and worms. This study may provide for new therapeutic strategies that protect nerve fibers in MS by increasing the activity of Sir2. (Science 2004 Aug 13;305(5686):1010-1013) A BETTER VIEW OF MS? Diffusion tensor MRI (DTI) may give a better view of MS disease activity, in the brain, according to a new report. Dr. Susan Kealey and colleagues examined 36 areas of myelin damage from 20 people with MS using MRI, and DTI, which reveals how many protons in water molecules are moving in tissue, and in what direction. If fatty myelin is intact, then water should be repelled, but if it is damaged, water will infiltrate the tissue. DTI revealed areas of damage that were 45 percent larger than those seen using conventional MRI. This method may prove to be a more sensitive method than currently used standard imaging techniques for

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determining disease activity in people with MS, and is under study by several National MS Society grantees. (American Journal of Roentgenology 2004 Aug;183(2):497-503) ESTROGEN AND THE IMMUNE ATTACK IN MS Administering the female hormone estrogen to mice has been shown to protect them from developing an MSlike autoimmune disease (EAE), and a preliminary NMSS-sponsored human trial suggested it might reduce disease activity, but the mechanism for this protection is unknown. Dr. Magdalena Polanczyk and colleagues (Oregon Health and Science University and others) report that treating mice with estrogen increased the numbers of immune cells known as CD25+ T cells. These cells are crucial to regulating the normal immune responses. The researchers also observed that protection from EAE seemed to correlate with an increase in FoxP3, a protein that is very active in CD25+ T cells, and that is essential to maintaining a healthy immune response. These data suggest that estrogen’s protective effect in EAE is due to its encouragement of the immune system’s natural regulatory properties. Co-author Dr. Halina Offner is funded by the National MS Society. (The Journal of Immunology 2004 Aug 15;173(4):2227-30)

1-800-548-4611

CLINICAL TRIALS COMPANY REPORTS POSITIVE TRIAL OF NEURODEX FOR UNCONTROLLABLE LAUGHING AND CRYING (PSEUDOBULAR AFFECT) IN MS Avanir Pharmaceuticals announced positive results from a Phase III clinical trial evaluating the safety and effectiveness of the oral drug NeurodexTM (a combination of dextromethorphan and quinidine sulfate) for treating the symptom of “pseudobulbar affect,” a condition involving uncontrollable laughing and/or crying affecting a small proportion of persons with MS and some other disorders, such as ALS, Alzheimer’s disease and stroke. In a press release issued August 24, 2004, the company reports that it intends to apply to the U.S. Food and Drug Administration for approval to market the drug for pseudobulbar affect based on the results of this and another trial that studied patients with ALS. Avanir has not yet published the data from the MS trial, but provided an outline of the results in its press release. According to the press release, 150 individuals at 22 clinical sites, who had MS and a history of pseudobulbar affect, received either oral Neurodex or inactive placebo every 12 hours for 90 days. Those on treatment experienced a statistically significant reduction in a clinical score (the Center for Neurologic Study Lability Scale) that measures the

frequency and severity of episodes of pseudobulbar affect, the primary endpoint examined in the study. Secondary endpoints indicated that the drug reduced the number of episodes, improved quality of life and quality of relationships, and reduced pain. Side effects were tolerable, with dizziness being the primary complaint in some who received the active treatment. “The availability of a drug that could safely and effectively treat pseudobulbar affect would be a real breakthrough for those with MS and other neurological conditions who experience this troubling symptom,” said Dr. Nicholas LaRocca, a clinical psychologist who directs the National MS Society’s research programs in patient management and health care delivery and policy. Multiple sclerosis involves an immunesystem attack against the central nervous system — the brain, spinal cord and optic nerve. The cause of pseudobulbar affect in MS is thought to be related to disease-induced tissue damage in areas of the brain involved in emotional expression. The exact number of persons with MS who have pseudobulbar affect is not known, but some estimates suggest about 10%. There is currently no drug approved specifically for treating pseudobulbar continued on next page…

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FALL2004

CLINICAL TRIALS affect. The prime ingredient of Neurodex is dextromethorphan, a cough suppressant used in many over-thecounter cough and cold remedies. Neurodex is a combination of this ingredient with an enzyme inhibitor, quinidine, which seems to help sustain levels of dextromethorphan in the body. Neurodex is not currently approved for use outside of clinical studies, and has not yet been reviewed by the FDA for safety and efficacy against the symptom of pseudobulbar affect. Individuals experiencing this symptom should consult their physicians to discuss treatment options which may include other drugs as well as counseling to assist them and their families to cope with this problem. A Clinical Bulletin providing details about pseudobulbar affect and its treatment in MS is available on the National MS Society’s Website at the following link: http://www.nationalmssociety.org/pdf/ forpros/Pseudobulbar.pdf. TEST OF NEW MEDICATION IN INJECTION FORM

TEST FOR AVONEX VS. BETASERON A randomized, rater-blinded, multicenter, parallel-group study comparing the efficacy and safety of Betaseron 250 mcg subcutaneously every other day with Avonex 30 mcg intramuscularly once per week in relapsing-remitting multiple sclerosis patients previously treated with Avonex. Sponsored by Berlex Laboratories For information, contact: Cynthia Perez-Roldan University of Pennsylvania Philadelphia 215-662-4893 PHASE I TRIALS Several unfunded Phase I trials are being conducted evaluating agents for the treatment of spasms and spasticity, agents for the treatment of fatigue, and agents for neuroprotection in patients with multiple sclerosis. For more information, contact: Robert Knobler, MD 215-643-9045

A Randomized, Double-Blind, PlaceboControlled Study to Evaluate the Safety, Tolerability and Efficacy of NBI-5788 in Patients with Relapsing Multiple Sclerosis. Sponsored by Neurocrine Biosciences, Inc. For information, contact: Cynthia Perez-Roldan University of Pennsylvania Philadelphia 215-662-4893 30

1-800-548-4611

CLASSIFIEDS To place a classified ad in “MS Connections,” please send an e-mail to: [email protected] Be sure to include all details for the ad as well as your name and phone number. If you wish to sell an item, please include the asking price. If you don’t have access to e-mail, please call us at 1-800-548-4611, extension 275 and record the pertinent information. HELP WANTED: PART-TIME FILE CLERK. Adams Insurance Agency; 275 W.

Kings Highway; Audubon, NJ 08106. Please send resume or e-mail for an appointment. [email protected] SEEKING COMPANIONSHIP & FRIENDSHIP: 44-year old Phoenixville

resident with MS is seeking friendship. Enjoys animals, outdoor activities and movies. Looking for other area residents for conversation and friendship. Call Dennis at 610-983-3948. FOR SALE: 1993 FORD CONVERSION VAN. Excellent condition. 95,000 miles,

Crow River lift with floor latches. TV, carpet, lights, VCR - Plush! Teal and white - a must see! $9,000 or best offer. Call 610-259-3251 and ask for Jim Jr. FOR SALE: JAZZY 1122 MOTORIZED CHAIR. Never been used. Six wheels, all

options. $2,500 or best offer. Call 215-474-2563. FOR SALE: 2002 DODGE CARAVAN.

35,000 miles. Ramp on passenger side with removable seats. Sliding doors on both sides. A/C and radio. $26,000. Call 856-596-3905.

FOR SALE: 1987 CHEVY CONVERSION VAN. 64,000 miles, Braun electric lift.

A/C, power steering, 8-cycle motor. $6,800. Call 570-897-0326. CLEANING SERVICE AVAILABLE:

Catherine’s Cleaning Company. Let us do the dirty work! Residential and commercial. Free estimates. Call 484-326-1034. FOR SALE: NEW, NEVER USED FIBERGLASS RAMP. Approximately

2 1/2’ by 5’ with non-skid treads. $125. Call 610-874-0392. FOR SALE: QUICKIE P210 POWER CHAIR. Brand new - never been used.

External charge. Great condition. $1,000. Call 215-473-9213. FOR SALE: 1990 CHEVY ASTRO VAN.

Wheelchair lift on side, new tires, A/C, cassette player, raised roof. New engine approximately 25,000 miles. Just painted. $2,500. Call 610-691-0669. FOR SALE: HOVERAROUND MOTORIZED WHEELCHAIR. Brand new.

Valued at $7,000. Runs 22 miles per battery charge. Joystick controls. Best offer. Call 610-964-8563. FOR SALE: 1999 PLYMOUTH GRAND VOYAGER SE V6. Excellent condition.

21,000 miles. Powered ramp, Braun conversion with lowered floor side entry. Manual tie-downs. Power windows, seats, locks and mirrors. Heat and A/C - front and rear. $24,990. Call 856-854-8489. FOR SALE: B&D INDUSTRY POWER SEAT BASE. Moves forward, up and

down, and turns left only. Best offer. Call 570-992-4302. FOR SALE: UPOLSTERD ELECTIC LIFT CHAIR. Brown/tan. Used occasionally.

$300 or best offer. Call 570-992-4302. www.nationalmssociety.org/pae

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MS 150 BIKE TOUR

FALL2004

Many thanks to our 2004 cyclists, pedal partners, sponsors and volunteers who made the MS 150 City to Shore Bike Tour a huge success!

Greater Delaware Valley Chapter One Reed Street, Suite 200 Philadelphia, PA 19147 RETURN SERVICE REQUESTED

NON-PROFIT ORG. U.S. POSTAGE PAID Doylestown, PA Permit No. 219