SPRING 2013 DELAWARE CHAPTER
MS CONNECTION NEWSLETTER
READ ABOUT THREE STAR WALK MS TEAMS, INCLUDING 436 APS PORT DAWGS OF DOVER (PICTURED ABOVE) PAGE 4
INSIDE 03 THIS ISSUE
MS AWARENESS WEEK EVENTS
CLINICAL TRIALS: FAQS
MEET OUR THREE NEW TRUSTEES
CRANKIN’ FOR A CURE: NEW LOCATION
MS CONNECTION: SPRING 2013
LETTER FROM THE PRESIDENT
RUN. WALK. BIKE. VOLUNTEER.
Run, Walk, Bike and Volunteer, my theme for 2013. New year, new plans, and new goals! Run – The Newark Jaycees are hosting the Shamrock & Roll on March 16th at Mojo Main in Newark, DE. Through the do-it-yourself fundraising* the Jaycees have chosen the Delaware chapter to be the beneficiary for this first time event. I am doing the 5k, my first attempt to move faster than my dog and I invite you to join me at www.races2run.com.
CONNECT WITH US ONLINE: MSDelaware.org Like us: Facebook.com/ MSDelaware Follow us: @MSSocietyDE Watch us: Youtube.com/ MSSocietyDE
Walk – With five walk sites across our state, and five different dates, there is an MS Walk convenient to you and your family. Undaunted by fund raising, many of our teams host fund raisers with garage sales, bake sales, and fund raisers at local restaurants. Bike – Crankin’ for a Cure has a new start/finish site, new route and a new date! On June 15th (a Saturday), cyclists will start at Aqua Sol in Bear for a 25 or 50 mile route. Both routes finish back at the restaurant for lunch on the deck! Registration is open at www.CrankinforaCure.org. Volunteer – Not only “day-of ” for our events, but many events have committees that help plan. These volunteers tend to have an area of expertise (route planning/ marking, registration, sag drivers) specific to the event. Others are more general; Government Relations, Emerging Leadership , etc. There is room for all types of fulfilling work long term or short term. Sometimes there are limits to what volunteer activity is appealing to you and your friends. That’s where *do it yourself fundraising comes in. What if you and your family want to host an event? A Car Show? A fashion show or a dinner? We now have the capability through do it yourself fundraising. It could not be simpler. Check out the advantages and guidelines on our website www.MSDelaware.org. Our goal is to meet you halfway in your efforts, wherever halfway is for you.
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MS Awareness Week is a way to spread the word about the devastating effects of multiple sclerosis, kick off the Walk MS season, and build momentum for the cause to create a world free of MS. Here are easy ways you can get involved! Visit MSDelaware.org for additional information. March 11th Statewide Open Houses - Meet chapter staff, enjoy complimentary refreshments, or register for Walk MS. Christiana Care - 774 Christiana Road, Suite 201, Newark, DE CNMRI Dover - 10745 State Street, Dover, DE CNMRI Milford - 111 Neurology Way, Milford, DE
Buffalo Wild Wings Fundraiser- Four locations - Limestone Rd. in Wilmington, S. Main St. Newark, Rt. 40 in Bear, and Rt. 1 in Rehoboth// All day//Portion of proceeds go to the Delaware Chapter - use coupon*
Ruby Tuesday’s Fundraisers - All Ruby Tuesday’s Statewide//All Day 20% of the proceeds will go to the Delaware Chapter - use coupon*
Wear Orange! Encourage your school, workplace, or family to wear orange. Take photos and post them to www.Facebook.com/MSDelaware. California Pizza Kitchen - Christiana Mall Location//All Day 20% of proceeds go to Delaware Chapter - use coupon*
March 16th Shamrock & Roll - 5k run/walk hosted by the Newark Jaycees to benefit the Delaware Chapter Registration starts at 9//Race starts at 10 am//Live music on course and at finish line Car Show - Hosted by Walk MS Team APS Port Dawgs at the Dover Buffalo Wild Wings
All proceeds benefit the Delaware Chapter. For more information visit www.mammagainstms.com. *Coupons can be found at www.MSDelaware.org on the Community Fundraising Events page.
NATIONAL MULTIPLE SCLEROSIS SOCIETY Delaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806 1-800-344-4867 Chairwoman: Maria McCabe Chapter President: Kate Cowperthwait Editor: Stephanie Fitzpatrick © 2013 National Multiple Sclerosis Society, Delaware Chapter
Information provided by the Society is based upon professional advice, published experience 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. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
MS CONNECTION: SPRING 2013
TEAM WORK Here’s a behind the scenes look at how and why some dedicated team captains recruit and fundraise for Walk MS. Sunny Schmidt Team 436 APS Port Dawgs (on cover) Walk MS: Historic Dover Sunny Schmidt and her husband Brad, who lives with MS, have been involved with Walk MS for over 4 years. With over 140 walkers, they were the largest team at the Walk MS: Historic Dover site - raising over $8,000 in 2012!
“It makes me feel like I’m doing something not only for my husband, but for everybody who has MS,” she said. “This is out there. Anybody can get it. So if we can find a cure for one person with MS, we can find a cure for everyone.” The Port Dawgs host a variety of fundraisers throughout the year to raise money and will host a Car Show on March 16th at Buffalo Wild Wings in Dover. For more information visit www.MSDelaware.org and click on the community fundraising events page. William Quillen Team Delmarva Happy Campers (below) Walk MS: Heritage Shores
“My husband looks fine, but he doesn’t feel fine,” she said. “He doesn’t look sick until he gets up in the middle of the night and can’t go to the bathroom because his legs buckle.” After Brad’s diagnosis, the Schmidt family found support through the Delaware Chapter. They decided to give back through Walk MS. “We’re really, really lucky to have such a great support system,” Sunny said about the 436 APS Port Dawgs. Sunny and Brad and their two kids also form a more immediate family team each year and participate in the PNC Bank Thanksgiving Day Run/Walk for MS in Wilmington.
“My mother had MS and passed away about 12 years ago and we originally walked for her. Then I was diagnosed. My wife is big on keeping you moving, so I don’t feel sorry for myself,” shared William Quillen, Team Captain of Delmarva Happy Campers. His mother-in-law is a member of Delmarva Happy Camper Association which is where most of their team support comes from, aside from their friends and family. They raised nearly $1,000 last year through personal
NATIONALMSSOCIETY.ORG | 1-800-344-4867 fundraising asks, posting flyers throughout the community, and a fundraiser at Texas Roadhouse in which their team was given 10% of all dinner bills.
year in memory of her mother.
A few years later, she found out that one of her former students had MS and she thought “this isn’t fair”. She began rallying friends and family together and so began her fund“We don’t go out unless we are raising journey. She then branched having fun. Get friends/family 2013 Walk MS Dates to the Walk MS: Baywood Greens together you can get a lot acwhere her hair salon, Vivian’s Style’s complished and have fun doing Wilmington Riverfront actively helps her to recruit team it,” shared William. members and donations. April 13, 2013 William and his wife’s positive outlook and leadership at Walk MS: Heritage Shores has kept them moving. “I’ve been meeting more and more people especially at the walks and you can exchange experiences. You develop new friendships. Just keep plucking. Believe it or not, MS has made my relationship with my wife much stronger,” continued William.
Historic Dover April 20, 2013
“My dream is that when my kids are turning 30, they will remember walking for MS, and it will be a disUniversity of Delaware ease that no longer exists,” she said.
May 5, 2013
This year she expects over 30 walkers on her team and has had the Heritage Shores help of many other organizations May 31, 2013 throughout Kent/Sussex including the Milford Duck-Inn Car Wash, the Corvette Club of Sussex County and Baywood Greens the Sussex Tech Football team. The June 7, 2013 Corvette Club even helped her team to raise over $5,000 from a recent car show for their 2013 team!
Brandi Nowakowski Team Vivian’s Style (pictured right) Walk MS: Baywood Greens
Brandi Nowakowski, a Milford resident, is the team captain for Team Vivian’s Style in Rehoboth, is no stranger to MS. Her mother lived with MS. Brandi remembers seeing her mother struggle with various treatments that were not effective. After her mother passed, she began to walk in the Dover Walk alone each
REGISTER FOR WALK MS AT WWW.DELAWAREWALK.ORG
UNDERSTANDING CLINICAL TRIALS People with multiple sclerosis who participate in clinical trials help make new and better therapies possible. The National MS Society has updated information about ongoing clinical trials for MS at www.nationalMSsociety.org/2012trials. There, you can download PDFs on the following specific types of clinical trials: • Trials funded by the National MS Society • Large phase III trials in relapsing-remitting MS • Trials in progressive forms of MS • Trials of symptomatic treatments The U.S. Food and Drug Administration (FDA) requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS. • Phase I: The first step is to determine safety. In a small number of healthy volunteers or people with MS, researchers investigate how the body reacts to a therapy. • Phase II: If the therapy proves to be safe, studies begin to determine a drug’s effectiveness in people with MS. These studies may last several months or several years, and involve larger numbers of people. The study is “controlled”—that is, the drug is compared with the standard treatment or a placebo.
MS CONNECTION: SPRING 2013 • Phase III: If an MS drug shows effectiveness, an even larger study is conducted in hundreds of people to gain a better understanding of the drug’s effectiveness and possible side effects. • Phase IV: These are not required for FDA approval, but might be conducted afterward to assess long-term safety and effectiveness. For more on clinical trials, visit the clinical trials registry created by the National Institutes of Health at www.clinicaltrials.gov.
A CLINICAL TRIAL GLOSSARY Here are a few commonly used terms in clinical trials. Blind A clinical trial is “blind” if participants are unaware whether they are in the experimental or control group. Control group In many trials one group of participants is given an experimental drug or treatment, while a control group is given either a standard treatment or a placebo. Double-blind study A clinical trial design in which neither participants nor study staff knows which participants are receiving the experimental drug and which are receiving a placebo (or another therapy). Randomized A study in which participants are randomly (by chance) assigned to one of two or more treatment groups.
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10 CLINICAL TRIAL FAQS Delawareâ€™s own MS specialist, Dr. Jason Silversteen, takes some of the guess work out of clinical trials by answering the FAQs below. 1. Are there any clinical trials currently taking place in Delaware? There are several clinical trials being conducted in Delaware, both at Christiana Care MS Center as well as in a couple private neurological practices. 2. How do I go about joining a trial? One common way is to get a consultation at an MS Center or with an MS specialist. The other is through clinicaltrials.gov. This website lists all recruiting trials, the participating sites, and contact information for those interested.
07 is explicitly described at enrollment in a clinical trial. 6. Are there any costs involved that I will need to pay? In most clinical trials, there is no out of pocket costs for the patient. In most trials, the patient receives the experimental therapy and all testing at no cost. Sometimes patients are reimbursed for incidental expenses 7. If I enter a clinical trial, am I obligated to remain in the trial until completion? No. You can decide at any time that you wish to exit the trial. Every trial has a policy built in where the treating physician can decide to take a patient out of the trial to be treated with another therapy. This would happen in the event of intolerable side effects or serious adverse events. In addition, any patient in a clinical trial can still be treated for relapses just like they would otherwise.
3. How long does a trial usually last?
8. Are there any implications that could affect my current health insurance?
Trial length is variable but typically between 1-3 years.
Participating in a clinical trial does not affect oneâ€™s health insurance benefits
4. What will be expected of me?
9. Will I be informed of the outcome of the trial?
All trials expect the participating subject to adhere to all required appointments, testing and procedures. Every clinical trial expects the participant to be committed towards completing the trial.
The outcome of trial would be revealed to the patient by the treating physician once all data has been collected and published.
5. What will the time commitment be?
10. Can I participate in more than one trial at a time?
The time commitment for every trial is variable. It depends on whether the trial is a phase 2, phase 3, or phase 4 trial and the type of testing involving. The exact time commitment
You cannot participate in more than one clinical trial at the same time. This is to ensure the validity of the data being collected.
08 NEWLY DIAGNOSED
WORKING WITH MS JULIE STACHOWIAK, PhD
Many people with multiple sclerosis find it difficult to continue working. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all. I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work. Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the
MS CONNECTION: SPRING 2013 past two years and have been on disease-modifying therapy for less than six months or not at all.
WHAT THEY FOUND: •
People with higher levels of fatigue and disability all decreased their working hours within 12 months following diagnosis. Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.
People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”
Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.
While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.
WORKING A BALANCE Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.
LIKE THIS ARTICLE? Coming this Spring to your email inbox is a Programs and Services e-newsletter featuring topics like this that directly relate to living with MS, research, and upcoming events. Interested? Be sure to call the office and give us your email!
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TRIBUTES & MEMORIALS Oct. 1, 2012 – Jan. 1, 2013
IN MEMORY OF... Barbara Gail Saienni Matthew Houston Joanne Saienni Anthony & Juliann Figliola Rose & Pauline Amalfitano Elaine & David Rosenberg Diane Schmidt Francis & Elizabeth Kearns Eva Saienni Martha Marsey Charles & Patricia Armbruster Griffiths Construction Inc. Larry Curtis Joyce Ann Nickerson Capital School District Joan Engel & the Related Arts Staff at Central Middle School Holly Loughrey Siegwarth Guray Tosun Daphne Neveras-Lupfer Pat & Dick Manski Milowicki Family Brenda & Jamie Yates Keith & Jean Marsh Sheryl Simpson Jerald & Virginia Lee Mr. & Mrs. Carleton Borden, Jr Hope Zucker
Nancy & Kevin Sherwood Bruce & Judith Gwaltney Melvyn & Ellen Pell Sandra Dobbs Phyllis Harvey Tina Mashington Edward Dudley Michael & Ann Marie D’Amore Nina Kirschner Brandywine-Naamans Rotary Diamond State Chapter of AALNC Richard & Pat Giles Pat Giles’ JCC Exercise ClassJoyce Fournakis Mary George Joan Frati Grace Casey Mahlon Graves Jeannette Bossert Thomas Casner John & Charlene Zelnak Mark & Cheryl Bossert Sandra Pearson William C. & Amy Monaghan Don & Joanne Bilyew Northwest Kansas Groundwater Management Dist. Russell Labowitz Marilyn Lawenthal DeLeon Selby James Sinclair Marilyn DeLeon Peter J. Devine Theresa & John McCool Mr. & Mrs. Robert Dinan Norbert & Marlene McDonough Pat Vanderkraats Walter & Herta Dignan
Bernice Schacter Stem Cell Go
IN HONOR OF... Doris & Joe Adelson Bert & Shelly Levin
Joanne Bennetti Ladies Ancient Order of Hibernians, Inc Jamie Colvett Dorothy Truitt
Betty Swain Russ & Amy Ardolina Jan Kaufman Rachel Boone Patti & Gary Boone
Alan J. Fink, MD Tina & Henry Heiman
REMEMBER THE MS SOCIETY AT TAX TIME Your 2012 Delaware tax returns will include an option to donate to the MS Society. Thanks to the success of this program, we received almost $12,000 in 2011! To make your mark in 2013, see DE Schedule III – Contributions to Special Funds and check the box for the MS Society!
2013 PUBLIC POLICY CONFERENCE - MARCH 4-6, 2013 MS activists from Delaware and all over the country will converge on Capitol Hill in Washington D.C. to meet with federal legislators. Check out the next edition of MS Connection for details and photos!
MS CONNECTION: SPRING 2013
BIKE TO THE BAY
AWARDS PARTY On January 17th the Delaware Chapter recognized Bike to the Bay’s 2012 top achievers at Catherine Rooney’s inWilmington, DE. Pictured right are representives from Team Y’s Guys, the 2012 Top Fundraising Team. Left to Right: Tom Harrigan (Team Captain), Kate Cowperthwait (Delaware Chapter President), Mike Berninger, Larry Carmpbell, and Ed Pankowski.
B2B TOP 10 FUNDRAISING TEAMS 1) Y’s Guys – $52,727 Captain: Tom Harrigan 2) HAC PACK - $41,459 Captain: Cindy Mannis 3) NRG Indian River Generating Station $34,182 Captain: Bruce Daisey 4) Accenture High Performers - $30,579 Captain: David Gingrich 5) M&T Bank - $28,028 Captain: Matthew Lindsay 6) The Cyc-Os - $20,025 Captain: Michael Bonkowski 7) Sussex Cyclists - $19, 744 Captain: Richard Barros 8) Mount Vernon Trailblazers - $18,643 Captain: Steven Parker 9) Team DISCOVER-$16,821 Captain: Dave DiGiacoma 10) Tour de Fruit - $15,649 Captain: Sean Clancy
B2B TOP 10 FUNDRAISING INDIVIDUALS 1) Richard Nenno - $17,390 2) Richard Barros - $10,050 3) Ronald Bottomley - $9,045 4) Mark Lindell - $8,910 5) Scott Wilson - $7,385 6) Michael Bonkowski - $7,055 7) Robert Collins - $6,655 8) Dan Weber - $6,300 9) Leslie Kopp - $6,020 10) Mike Davis - $5,905
VISIT WWW.BIKETOTHEBAY.ORG TO SEE THE REST OF THE 2012 AWARD WINNERS INCLUDING BEST TEAM TENT, BEST REST STOP, AND MORE!
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MEET OUR THREE NEWEST BOARD OF TRUSTEES MEMBERS The Delaware Chapter is proud to announce the addition of three community leaders to its Board of Trustees – Jim Lardear (AAA Mid Atlantic), Tina Pairo (M & T Bank), and Lisa Vitanza (Bank of America). Officially confirmed at the 2012 Annual Meeting, the Delaware Chapter is looking forward to adding their expertise and leadership skills to an already robust Board of Trustees.
UPCOMING PROGRAMS APRIL UD Assessment Clinic April 12 Ballgame: Delmarva Shorebirds April 21st Easter Seals Caregiver Conference April 26 LINKS Teleconference Series See Website For Dates
Women’s financial planning specialist for M & T Bank
Founding member of the Emerging Leadership Council
2010 recipient of the Jefferson Award for Public Service
Site Human Resources Director of Public and Manager at Bank of Government Affairs America for AAA Mid-Atlantic
SAVE THE DATE! MS Golf Tournament
Presented by Delaware Park Monday, June 24, 2013 White Clay Creek Country Club
National Multiple Sclerosis Society Delaware Chapter
For more information email Ainsley.Hertrich@nmss.org or call (302) 655-5610 or 1-800-Fight-MS.
MAY UD Assessment Clinic May 3 Mind, Body, Spirit TDB Camp Fairlee Manor TDB JUNE Ballgame: Wilmington Blue Rocks June 16
FOR MORE INFORMATION CALL (302) 655-5610 OR 1-800-FIGHT-MS OR VISIT WWW.MSDELAWARE.ORG
FREE MAILING FOR THE BLIND AND HANDICAPPED Delaware Chapter 2 Mill Road, Suite 106 Wilmington, DE 19806 (302) 655-5610 1 (800) FIGHT-MS
CRANKINâ€™ FOR A CURE SATURDAY, JUNE 15, 2013 Aqua Sol Restaurant & Bar///Bear, DE Registration Opens: 7:00 am Ride Begins: 8:00 am Featuring a NEW Start/Finish location this year! Ride a 25- or 50-mile loop starting and finishing at Aqua Sol Restaurant & Bar overlooking the beautiful C & D Canal and Summit North Marina. The ride is fully supported with rest stops, bike mechanics, and support vehicles. A light lunch will be provided to cyclists after the ride at Aqua Sol. REGISTER NOW & SAVE Registration Fees: $50 March 2nd - May 31st $55 June 1st - Event Day
REGISTER OR SIGN UP TO VOLULNTEER AT CRANKIN4ACURE.ORG OR CALL (302) 655-5610 OR 1-800-FIGHT-MS.
SHARE THE CHALLENGE Bring your friends and co-workers along for the ride. Join or form a team to conquer the Bike MS challenge together. Contact Linda Risk, Teams Coordinator, by email at Linda.Risk@nmss.org or call (302) 655-5610 or 1-800-FIGHT-MS.
Published on May 2, 2013