SUMMER 2013 Delaware, Southeastern Pennsylvania & South Jersey
MSConnection Newsletter
BIKE MS:
GEARING UP FOR THE BIG RIDE To think it all started with a father and son going on a bike ride. Just over 30 years ago, the President of the National MS Society’s Minnesota Chapter and his 10-year-old son decided to attempt a 150-mile bike ride. It took longer than they thought, but he decided that if the two of them could ride 150 miles in two days, it might be a good challenge for others and a unique way to raise funds for the National MS Society. In 1980, 200 cyclists rode the first Bike MS, raising $33,000 for the Minnesota Chapter.
Markus Streker, Sean Clancy and Bobby Banana (Sean’s son Erik) Celebrate at the Bike to the Bay finish
INSIDE 13 THIS ISSUE
CHALLENGE WALK MS 2013 ON THE MOVE
CONTINUED ON PAGE 6
14
20 22
27
LOCAL STUDENTS RECEIVE SOCIETY SCHOLARSHIPS
TIPS TO BEAT THE HEAT
Face of MS: LISA MURRAY
DISCLOSURE IN THE WORKPLACE
02
MS connection: SUMMER 2013
GREATER DELAWARE VALLEY CHAPTER
DELAWARE CHAPTER
National Multiple Sclerosis Society 30 South 17th Street, Suite 800 Philadelphia, PA 19103 1-800-548-4611
National Multiple Sclerosis Society 2 Mill Road, Suite 106 Wilmington, DE 19806 302-655-5610
Chair: Marianne Jackson Vice Chairs: Valli Baldassano, Larry Kane President: Tami Caesar
Chair: Maria McCabe Vice Chair: Matt Lenzini President: Kate Cowperthwait
Connect with us online: nationalMSsociety.org/pae n pae@nmss.org Like us: facebook.com/greaterdelMS Follow us: twitter.com/greaterdelMS Watch us: youtube.com/nmsspae
Letter from the presidents
WORKING IN PARTNERSHIP
Connect with us online: nationalMSsociety.org/ded Like us: facebook.com/msdelaware Follow us: twitter.com/MSSocietyDE Watch us: youtube.com/mssocietyde
Tami caesar, president Greater Delaware Valley Chapter
Pin us: pinterest.com/greaterdelvalMS
Š2013 National Multiple Sclerosis Society, Greater Delaware Valley 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. MSConnection welcomes letters to the editor. Send letters to kevin.moffitt@nmss.org or the address above. Include your name and a phone number or email where we can reach you, if necessary.
NOTE: we may edit your letter for length and
content.
03
nationalmssociety.org | 1-800-FIGHT-MS
Kate Cowperthwait, president Delaware Chapter
This issue of MSConnection marks a new era for the Delaware and Greater Delaware Valley chapters of the National MS Society. For decades our two organizations have worked side by side on specific events, such as Challenge Walk MS and the MuckFest MS, as well to deliver client services. But now we are taking our partnership one step further, aligning chapter efforts wherever possible.
Over the past few months, staff and volunteer leadership for our respective chapters have held a number of meetings to explore ways in which we could improve our collective mission delivery while reducing expenses. One of the immediate and most noticeable
outcomes of these discussions is this, the first joint issue of MSConnection that will be delivered to more than 17,000 homes in Delaware, South Jersey, southeastern Pennsylvania and the Lehigh Valley. In the end, we know that you, as someone affected by MS, are probably not terribly concerned about the geographic service areas of the National MS Society. What is most important to you, and to us, is that the Society is doing everything it can to help local families living with MS overcome the daily challenges that come with the disease while fueling the research that will one day make MS no more. This combined effort of our two chapters will provide more comprehensive information about some of the educational, social and fundraising events happening in our area. So if there is a program in Newark, DE about new treatment options or a family-friendly fundraising event in Easton, PA, you will be able to find out about it within the pages of your quarterly MSConnection. It is our hope that the Delaware and Greater Delaware Valley chapters working together more comprehensively will bring us closer to achieving our shared vision of a world free of MS. Sincerely, Kate Cowperthwait, President Delaware Chapter
Tami Caesar, President Greater Delaware Valley Chapter
04 Research BRIEFS Early Clinical Trial Shows Feasibility of Reducing Immune Responses in People with MS Using Their Own Altered Blood Cells
An international team has reported results of a small, early clinical trial involving 10 people with relapsing or secondary-progressive MS that tested the feasibility and preliminary safety of using a patient’s own altered blood cells to reduce immune responses against specific components of myelin, the nerve covering that is a key target of immune attacks in MS. They report that the treatment appeared safe and showed signs of reducing immune responses to myelin. Larger, longer
MS connection: SUMMER 2013
trials of this approach would be needed to evaluate its safety and potential to treat multiple sclerosis. The study, by Roland Martin, MD (Institute for Neuroimmunology and Clinical MS Research, Hamburg and University Hospital Zürick) and colleagues including Stephen D. Miller, PhD (Northwestern University, Chicago), was published in the June 5, 2013 issue of Science Translational Medicine (5, 188ra75 (2013). The trial was largely funded by the German Federal Ministry for Education and Research.
Research sheds light on emotional changes in MS In proclaiming May as National Mental Health Awareness Month, President Barack Obama sought to “shine a light” on the mental health problems experienced by millions of Americans. Emotional changes may be a major concern for people with MS. Clinical psychologist David Rintell, EdD (Brigham & Women’s
Hospital, Boston) addresses these issues with people with MS in his practice, and has been funded by the National MS Society’s Health Care Delivery and Policy Research (HCDPR)program to study ways to help enhance mental health to people with MS.
Clinical Trial Results Announced in Study of Peginterferon Beta1a - Company Submits Application to FDA Based on the results reported below, Biogen Idec announced in a press release that it has submitted an application to the FDA for approval of peginterferon beta-1a for the treatment of relapsing forms of MS. Biogen Idec announced that a phase III study of peginterferon beta-1a, injected under the skin either every two or four weeks, reduced the relapse rate significantly more than placebo in a study of 1500 people with relapsing MS, reaching the primary goal of the study. Peginterferon is a new formulation of the interferon beta-1a molecule
05
nationalmssociety.org | 1-800-FIGHT-MS
which enables it to maintain effects in the body for longer periods of time. More data from this ongoing study, also called the ADVANCE study, will be presented at the American Academy of Neurology Annual Meeting in March. According to a press release, the company is planning to file for regulatory approval in the United States and European Union in 2013.
Studies Report Progress Understanding What Drives Repair of the Brain’s Insulating Myelin, Which is Damaged by MS Researchers at the universities of Edinburgh and Cambridge, and at Stanford, have reported separate studies making inroads to understanding factors that stimulate the repair of myelin, the nerve insulation that is a target
of multiple sclerosis. These important laboratory discoveries, supported in part by the National MS Society, are still in early stages and need to be confirmed and expanded, but they could eventually lead to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS. The studies were recently reported in the journals Brain and Nature Cell Biology.
Study Finds that the Incidence of MS Appears to be Higher in African American Women, Contradicting Previous Findings A new study of 496 people newly diagnosed with MS found that the risk of developing MS was 47% higher in African American women, compared with Caucasian American men or women. It also found that the risk was 50% lower in Hispanic/Latino Americans, and 80% lower in Asian
Americans. Previous research had indicated that the risk of MS was lower in blacks than whites, so these findings warrant further study in a larger sample. Annette Langer-Gould, MD, PhD, and colleagues (Kaiser Permanente, Southern California, Pasadena) report their findings in Neurology (2013;80:1734). n
MORE RESEARCH Visit us online at nationalMSsociety.org to stay on top of the latest MS research
06 CONTINUED FROM COVER The idea quickly spread: by 1985, every Society chapter started holding rides. There are now 100 rides all in every area of the country that, over the years, have raised more than $1 billion for the fight against MS. This year will mark the 30th anniversary of Bike MS: Bike to the Bay. The Delaware Chapter’s signature event will take place September 21-22 and will take riders through Delaware’s quaint, rural towns and into Delaware Seashore State Park just one mile south of downtown Dewey Beach. At last year’s event, crisp temperatures and sunny skies greeted the 2,000 cyclists, volunteers and spectators who participated in the ride. Cycling, comfort food and camaraderie are always in order for this annual event, which is the largest and longest-running cycling event of its kind in Delaware. More importantly, though, Bike MS raises more than $1 million each year to support the 1,550 Delawareans living with multiple sclerosis. “Bike to the Bay is a top-notch cycling event with a well-supported route, fun rest stops and great food,” said Sean Clancy, team captain of Tour De Fruit.
“The best is saved for last at the finish line in the team village where I have a chance to celebrate my accomplishments with my teammates, friends and family. I have a great sense of pride every
MS connection: SUMMER 2013
year, not only because I have achieved a huge physical challenge, but because I know I am making a difference in the lives of those living with MS.”
Elizabeth raised $1,230 and earned VIP status at last year’s ride. Her team raised nearly $13,000. “I know that with each dollar donated, each mile biked, we are only closer to living a life free of MS,” says Elizabeth. “Why do I ride? In summary, to show MS who’s boss.”
For the Greater Delaware Valley Chapter, 2013 will mark the 33rd year of Bike MS: City to Shore Ride. In 1989, 78 cyclists hopped on their bikes for the first ever City to Shore Ride from Philadelphia to Ocean City. “In the early years, there was a lunch stop with peanut butter and jelly, bread and a couple of knives,” said Mike Bobal, a 32-year veteran who meets an old Navy buddy at the ride each year. “Now there’s an entourage that follows you everywhere and food galore!” The 2013 City to Shore Ride will take place September 28-29.
I have MS. This is why I ride For 26-year-old Elizabeth Martin, Bike MS is an escape. “As a rising business development professional, I was on my way to a bright future climbing the corporate ladder. In March of 2012, literally overnight, I lost feeling in my legs. Shortly thereafter, I was diagnosed with MS, which has taken my voice and my walking abilities,” says Elizabeth. “MS has taken a lot from me, but fortunately, not my ability to bike. With a recumbent bicycle, I along with the rest of my team, Team Sparkle, crossed the finished line at last year’s ride.”
07
nationalmssociety.org | 1-800-FIGHT-MS
MS experience with your friends, family members, and co-workers, and make a difference together. Being part of a team is a great way to enhance your Bike MS event experience. Your team can train together, fundraise together, wear special team jerseys during the event, and make your Bike MS ride the social event of the season. “We provide biking shirts for our team, sport shirts for our team and their families, a pep rally dinner, and for those pedaling both ways, we provide housing and a team dinner,” said Andrea Rosenthal, team captain of Jersey’s Team.
Elizabeth Martin
Bike MS is for everyone. Well, almost. Bike MS events are open to cyclists of all skills and abilities. With route options ranging from 17 miles to 175 miles, there’s an option that’s right for you. Cyclists must be 12 years old or over as of the morning of the ride. Bicycle tagalongs, trailers and carriers will not be permitted for cyclists of any age. All minors (ages 12-17) must have a notarized waiver signed by their parent/guardian.
It’s more fun when you ride together! One person can change the world, so just imagine what a team can do. Share the Bike
It’s easy to form a team. Just select “Form a Team” when you’re registering, and from there we guide you every step of the way. Through our online tools you can set your fundraising goal and ask your friends, family, and co-workers to join you. You will also receive a complete team captain’s kit with everything you’ll need to recruit team members, raise pledges and generate enthusiasm. You do not have to be on a team, but it is fun to have people to ride with. The encouragement and the camaraderie among team members can make the ride more enjoyable. There are also special team prizes and incentives available. Learn more about starting a team at BikeMS.org.
Fully supported rides Bike MS rides are fully supported so don’t fret! Support vans from our sponsoring bike shops will be on the route, at the start,
08
MS connection: SUMMER 2013
and at the finish lines to provide assistance. SAG (support and gear) vehicles will also be traveling the route all day long to keep our riders safe. There are rest stops every 10-15 miles along the route. Equipped with first aid and fully stocked with energizing snacks and delicious meals. SAG vehicles will pick you up and transport you to the next rest stop or to the finish line if you are unable to complete the ride.
Join us for an event that’s more than a ride — it’s anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives… making every mile that much sweeter. n
Don’t just ride, Bike MS! Bike MS will take you further than you’ve ever gone before. It’s not the miles that matter — it’s the unforgettable journey.
So where does the money go?
BIKE MS: CITY TO SHORE RIDE 2013
Your supporter helps:
• Support research aimed at finding the cause of MS, better treatments and a cure
• Reconnect families affected by MS by coordinating family fun days, kids’ camp, and other family support and social programs
All cyclists must raise a minimum of $300 to ride. As efficient, effective stewards of • Stimulate changes in public our donors’ contributions, we • Inform and educate people policy by coordinating a with MS about a variety of make sure that more than 79 statewide and nationwide issues through publications, cents out of every dollar we Government Relations education seminars, and atraise goes directly to improve Committee and providing home teleconferences the lives of people living with training and support to our MS through programs, services • Provide direct support constituents and financial assistance and research. Approximately • Support emotional health for the FDA-approved 21 cents of each dollar is and physical well-being medications, medical spent on administration and through a network of selfequipment, counseling fundraising — a ratio that help groups, a peer support services, respite care, is far better than the average telephone program and college scholarships, and of other successful nonprofit more! other emergency assistance. organizations.
09
nationalmssociety.org | 1-800-FIGHT-MS
CHOOSE YOUR RIDE Bike MS: Bike to the Bay 2013
Bike MS: City to Shore Ride
Enjoy a 2-day cycling adventure through scenic southern Delaware. We have route options for cyclists of every level, ranging from 17-175 miles. The ride is fully supported with catered rest stops, bike mechanics, full meals, and support vehicles. Enjoy flat terrain as you travel through Delaware’s quaint, rural towns and listen to the waves as you roll into the beach. A fantastic finish awaits you with great food, music, and massages to ease your sore muscles. Invite your family and friends to cheer as you cross the finish line and enjoy a memorable celebration.
Named by Bicycling Magazine as the “Best Cycling Getaway in NJ,” the Bike MS: City to Shore Ride is considered one of the best cycling events on the east coast. Ride with 7,000 cyclists of all ages and cycling abilities for the challenge of your choice with several route options. Enjoy flat terrain as you travel through the quaint towns and back roads of Southern New Jersey. Pedal through the blueberry fields of Hammonton, experience the serene beauty of the Pine Barrens and listen to the waves as you roll into historic Ocean City.
September 21 & 22, 2013 From Dover to Dewey Beach, DE Registration fee: $40 through 7/31/2013 17-, 45-, 75-, 100-, 150-, and 175-mile route options
September 28 & 29, 2013 From Cherry Hill to Ocean City, NJ Registration fee: $65 through 8/29/2013 25-, 45-, 75-, 100-, 150-, and 175-mile route options
10
MS connection: SUMMER 2013
nationalmssociety.org | 1-800-FIGHT-MS
CALLING ALL VOLUNTEERS Whether you have an hour or a day to spare, there are many volunteer opportunities available at various locations in our region. See below for a list of opportunities near you:
CENTER CITY PHILADELPHIA AND WILMINGTON, DE: With Bike MS just around the corner, now is the time to help us get ready! We need lots of hands to help us get rider packets ready. Tasks typically include sorting, stuffing and labeling envelopes. All ages and groups are welcome throughout the summer. Call 1-800-FIGHT-MS to volunteer or contact Joy.McManus@nmss.org at the Greater Delaware Valley Chapter or Ainsley.Hertrich@nmss.org at the Delaware Chapter to sign up with your local chapter. DELAWARE (VARIOUS LOCATIONS): Bike MS: Bike to the Bay takes place September 21-22 and will take riders through Delaware’s quaint, rural towns and into The Towers in Dewey Beach. There are a variety of volunteer locations and opportunities available throughout the weekend. Call 302-655-5610 to sign up. NEW JERSEY (VARIOUS LOCATIONS): Bike MS: City to Shore Ride takes place September 28-29 and will take riders from Cherry Hill, N.J. to the Ocean City boardwalk. Join us as 7,000 cyclists raise money to fight MS. There are a variety of volunteer locations and opportunities available. Contact Joy.McManus@nmss.org to sign up.
We want to thank everyone who participated in MuckFest MS Philly on June 8 and 9, 2013. More than 6,000 brave souls gathered in Newtown Square, Pa. to take on our five mile mucky obstacle course. They ran, swam, jumped and sloshed through heaving pits of pure muck and raised nearly $400,000. These funds will support vital programs and services for people living with MS in our area and cutting-edge research into the cause, treatments and cure for MS. Thank you for making a difference. We also want to thank all of our volunteers - we couldn’t have done it without you!
11
12
MS connection: SUMMER 2013
Thanks for making Walk MS 2013 a success! Together we held 19 walks over five weeks in three states. We saw old friends, made new connections and celebrated our efforts in moving forward and creating a world free of MS. Let’s keep Walk MS going all year long. Continue to grow awareness and make connections by sharing your stories, photos and videos on our social media pages.
CONNECT WITH US ONLINE:
Thank you for your dedication to Walk MS. We couldn’t make a difference without you. n DELAWARE CHAPTER: facebook.com/MSDelaware twitter.com/MSSocietyDE GREATER DELAWARE VALLEY CHAPTER: facebook.com/greaterdelMS twitter.com/greaterdelMS
WALK MS 2013
nationalmssociety.org | 1-800-FIGHT-MS
13
CHALLENGE WALK MS: PHILADELPHIA FREEDOM PASS
SEPTEMBER 7 - 8, 2013 EASTON, MD
2 days. 30 miles. connect to end walk to create a world free of MS
CHALLENGE WALK MS:
GET READY FOR THE ROAD TRIP OF A LIFETIME This year, Challenge Walk MS is hitting the I-95 corridor and heading south to the beautiful Eastern Shores of Maryland. The Greater Delaware Valley Chapter is partnering with the Maryland Chapter of the National MS Society to bring you the first ever Challenge Walk MS: Philadelphia Freedom Pass, an exciting event you won’t want to miss! Join us on Saturday and Sunday, September 7-8 for Challenge Walk MS: Philadelphia Freedom Pass. The inspirational journey will have you exploring 31 miles of the scenic Chesapeake Bay. Enjoy exclusive perks,
multiple sclerosis including housing and transportation, and support the 14,000 people living with MS in our area. On Saturday, September 7, take in the breathtaking views of the Chesapeake Bay and celebrate your accomplishments at a candlelight ceremony in honor of those living with MS. On Sunday, September 8, venture through the streets of historic Tilghman Island and be greeted by cheering friends and family as you cross the finish line at Black Walnut Pointe. Throughout the event, enjoy themed rest stops and scrumptious meals. Visit challengephilly.org for more information and to sign up! n
14
Local students receive Society scholarships
MS connection: SUMMER 2013
Kayla Boyd, Magnolia, DE Caesar Rodney High School Business, Lincoln University
Mia Cherrier, Greenville, DE St. Marks High School Communications, James Madison University
Kevin Jones, Wilmington, DE Concord High School Engineering, Cornell University
Erica Lanser, Blackwood, NJ Highland Regional High School English Literature, University of Pittsburgh
Nyesha Smith, New Castle, DE (Renewal scholarship) Psychology, Morgan State University
Chelsea Timmons, Selbyville, DE Sussex Tech Elementary Ed., Delaware Technical Community College
SCHOLARSHIP MANUAL
The National MS Society has awarded scholarships to 14 local students through its annual scholarship program. The program helps students affected by multiple sclerosis pursue a college or technical school education. It is open to high school seniors who live with MS or have a parent who does; or anybody living with MS who has net been to a post-secondary school. Scholarships range from $1,000 to $3,000 and typically cover one year.
15
nationalmssociety.org | 1-800-FIGHT-MS
Gabriella Flamini, Medford, NJ Shawnee High School Communications Technology, Rider University
Mariesa Greenholt, Bear, DE Appoquinimink High School Visual Communications, University of Virginia
Jessica Maahs, Georgetown, DE Sussex Central High School Marine Biology, University of Delaware
Jacqueline McDevitt, Mohrsville, PA Schuylkill Valley High School Communications, Ithaca College
Information about scholarships for 2013-14 can be found on the National MS Society website, nationalMSsociety.org. Congratulations to this year’s outstanding scholarship recipients! n Rebecca Grier, Camden, DE Caesar Rodney High School Animation, University of Rhode Island
Allison Huber, Whitehall, PA Whitehall High School Forensic Chemistry, Cedar Crest College
Zachary Merritt, Wilmington, DE Mt. Pleasant High School Computer Engineering, Drexel University
Amy Phelps, Horsham, PA Hatboro-Horsham High School Liberal Arts, Montgomery County Community College
We all know the financial strain that an MS diagnosis can put on a family. With tuition costs and living expenses rising every year, it’s becoming harder for families to fund their child’s college education. These days, more and more families are turning to financial aid to help make the process a little easier to swallow. But that’s often not enough. That’s why we have created a scholarship manual. The information you’ll find in this 22-page guide will help you identify scholarships, avoid scams and navigate your way through the complex financial aid process. Available online only at nationalMSsociety.org/pae.
16
MS connection: SUMMER 2013
Family fun programs provide an escape from the realities of living with MS MS happens to families, not just to individuals. When a person is diagnosed with MS, there is immediate impact on all who love them. Family fun programs provide an escape from the daily stresses of living with MS. Our recent programs included interacting with sharks and stingrays at the Adventure Aquarium, watching jumpers and side saddle competitions at the Devon Horse Show & Country Fair, taking in a baseball game and fireworks at the Reading Fightin’ Phils stadium, and getting lost among priceless works of art from around the globe at the Philadelphia Museum of Art. For upcoming programs in the Delaware area, please visit nationalMSsociety.org/ded or for upcoming programs in the Greater Delaware Valley area, go to nationalMSsociety.org/pae. n
17
nationalmssociety.org | 1-800-FIGHT-MS
DELAWARE PROGRAMS
ONGOING AND UPCOMING PROGRAMS IN YOUR AREA Free counseling sessions in Delaware We offer up to FOUR free counseling sessions to our members and their families residing in Delaware. Counselors are available in all three counties to help you. For more information, call us at 302-655-5610 or 1-800-FIGHTMS. Or, email Carol Cave at carolyn.cave@nmss.org to schedule an appointment.
What’s coming up? We are working on an adaptive sailing adventure to the Baltimore Inner Harbor tentatively scheduled for early October. Also, we are looking into a day trip to a theme park, again for this autumn. Stay tuned! More information on both activities will be released as details are finalized. Caring Hands will take place again this fall. If you are in need of chore services this autumn, please contact Carol Cave at the chapter to get an application. If you, your family or workgroup want to form a team and volunteer for this rewarding experience, please contact our Volunteer Coordinator, Ainsley Hertrich, ainsley.hertrich@nmss.org. Both Carol and Ainsley can also be reached by phone at 302655-5610 or 1-800-FIGHT MS. Reminder – The Chapter has a presence in Dover the second Monday of each month and in Georgetown the second and fourth Monday of each month. If you have a question, want to discuss an issue, have a suggestion or just want to meet Chapter staff, feel free to come on out! We would really love to hear from you! n
Step it up in 2014! 2012
18
MS READATHON soars to new heights! MS READATHON is an educational and fundraising program created by the National MS Society to encourage reading, promote community involvement, raise disability awareness and aid in the fight against multiple sclerosis. Children are asked to read books at their own reading level for one month and obtain pledges for each book that they read from family and friends. This year, 28 schools participated in the MS READATHON program in the Delaware and Greater Delaware Valley region! The Delaware Chapter’s MS READATHON program raised almost $31,000 with 11 schools participating. The top fundraising school was Mount Pleasant Elementary, whose students read a total of 1,382 books and 125,640 pages, while raising almost $6,000. We are pleased to announce that three MS READATHON students raised over $500 for the Delaware Chapter and were invited to MVP Night at the Phillies game on Saturday, June 22. We are so proud of all the students for their fundraising efforts this year, but a very special thank you to Delaware’s overall top fundraiser, Elli RunnerDraper from Tutor Time!
MS connection: SUMMER 2013
The Greater Delaware Valley chapter will raise $25,000 through MS READATHON this season with 17 schools participating. The chapter’s top fundraising school is Ross Elementary School, located in Margate, N.J. Ross School has been involved with the program for over 10 years when it was formerly known as Union Avenue Elementary. This year, they raised $4,500.00 with 79 students completing the program.
Community Fundraising All Stars
Greater Delaware Valley’s top student is Andrew L. Fernandes, III, who raised over $1,600. He and the other students who raised $500 or more will take part in the MVP Night at the Phillies. Thank you for your hard work and dedication year after year Andrew! Also, we cannot thank the students enough for taking on the challenge of reading and fundraising this year. n
The RiverFront Raiders Ice Hockey Club from Burlington County, N.J. recently held their first annual Score for a Cure/Hockey Keeps MS in Check hockey game to benefit the National
TO LEARN MORE ABOUT THE MS READATHON PROGRAM OR TO GET YOUR SCHOOL SIGNED UP FOR NEXT YEAR, PLEASE CONTACT: IN DE: AINSLEY HERTRICH 302-655-5610, EXT. 86129 AINSLEY.HERTRICH@NMSS.ORG IN NJ/PA: KRISTIN MARNIE 215-271-1500, EXT. 24116 KRISTIN.MARNIE@NMSS.ORG
19
nationalmssociety.org | 1-800-FIGHT-MS
Score for a Cure
Daughters of Penelope The Daughters of Penelope, a civic organization that focuses on philanthropic, educational and cultural activities with local chapters in the United States, Canada, Greece and Cyprus, recently held a fundraising event to support Walk MS’ Team TRF (Total Rehab & Fitness). Team TRF, based in Cherry Hill, N.J., raised $24,300 in support of Walk MS thanks in large part to the Cherry Hill Daughters of Penelope. “The Daughters of Penelope supported our team with a fundraiser this year contributing $11,000,” said John Marmarou of Team TRF. “I am so grateful for their continued support.” “We wanted to show support for our dear friend Christina Aivazoglou and all others affected by dreadful disease,” said Carol Pappas of the Daughters of Penelope. Aivazoglou has been living with MS since 2006 and receives therapy services at Total Rehab & Fitness.
SCORE FOR A CURE
MS Society at the Flyers Skate Zone in Voorhees. The event, which took place on April 7, featured a Chinese auction, 50/50 drawing and offered fans the opportunity to purchase their favorite player custom-made jersey. The event raised $2,250 and plans are already in the works for next year. The Cherry Hill Daughters of Penelope, Nike chapter #230 of the fifth district, was established more than 60 years ago and have over 100 members from the various cities and towns in and surrounding Camden, Burlington and Gloucester counties in New Jersey. The objectives of the Daughters of Penelope are to promote Hellenism, education, philanthropy, civic responsibility, and family and individual excellence. For more information about the Daughters of Penelope visit daughtersofpenelope.org. n
DAUGHTERS OF PENELOPE
20
TIPS TO BEAT THE HEAT A rise in temperature makes it harder for demyelinated nerves to conduct electrical impulses, worsening MS symptoms. Heat generally produces only temporarily worsening of symptoms and does not cause more disease activity or damage to nerves.
HERE ARE SOME TIPS TO BEAT THE HEAT: • In hot weather, your body needs more water. Don’t wait until you are thirsty, because your body needs more fluid than thirst will indicate. By the time you feel thirsty, you may already be dangerously low on water. So drink plenty of fluids and avoid caffeine as this acts as a diuretic • There are a number of cooling products including vests, neck wraps and bandanas available for purchase. Don’t want to spend the money on a cooling product? Try a wet towel stored in the refrigerator or cooler • Wear lightweight, loose-fitting and breathable clothing. Wearing light colors can also help • Make sure to do your outdoor activities during the cooler times of the day, usually early morning or evening
MS connection: SUMMER 2013
• Cool baths or showers (with water temperature around 75° F) provide amazing relief from the heat 25 times faster than cool air • Try pre-cooling. Soak in a tub of cool water for 20-30 minutes before heading outside. • Icy drinks such as smoothies or popsicles can provide temporary relief • Spend as much time as you can in cooler surroundings, such as an air-conditioned shopping mall, community center, public library or movie theater • Wear a hat or use a parasol or umbrella to protect your head and neck when you are outdoors • Watch what you eat and monitor your salt intake. Avoid hot foods and heavy meals as they add heat to your body. Try eating fresh salads and cold sandwiches instead
nationalmssociety.org | 1-800-FIGHT-MS
21
Chapter receives 2013 Inglis Award for Continuing Excellence The Greater Delaware Valley Chapter was honored with the 2013 Inglis Award for Continuing Excellence at a ceremony in May. The $10,000 award honors the outstanding performances of five not-for-profit organizations in the Greater Philadelphia region that enhance the quality of life for people with physical disabilities, and by doing so, supports the Inglis mission of enabling people with disabilities - and those who care for them - to achieve their goals and live life to the fullest. Inglis is the parent corporation of several entities, including the skilled nursing care facility Inglis House. “We greatly appreciate this recognition and the funding that comes with it,” says Karen Mariner, the chapter’s Vice President of Advocacy. “These additional financial resources will allow us to take some innovative approaches to our work and enable us to reach even more people with our muchneeded services.” n
• Alcohol interferes with your body’s fight against heat stress. It can put a strain on your heart. Avoid alcohol and caffeine whenever possible
DID YOU KNOW? The cost of an air conditioner is taxdeductible with a document from your physician. Find out more about how you can keep cool by calling 1-800-FIGHT-MS.
MS Navigator, EVAN MARCUS; Services Manager, MELISSA BRUNO with Inglis Board Member, Sankey Williams
22 RAY, MEDIA EXECUTIVE, DIAGNOSED IN 2003
Disclosure in the workplace: Planning ahead is key Disclosing an MS diagnosis to an employer is one of the most difficult decisions people with MS face. There may be good reasons to disclose and benefits from doing so. However, once information is given, it can never be taken back. So it’s important to make certain that telling does benefit you. If you require
MS connection: SUMMER 2013
an accommodation or need to take medical leave, these are reasons that require some level of disclosure. However, some people choose to disclose just for the sake of disclosing. This may reduce their stress level or make them feel more comfortable asking for accommodations in the future when or if their symptoms change. The decision will differ from one person to another depending on symptoms, accommodations needed, and personal preferences. There are several key issues to consider – who at work needs to know, when does your employer need to know, why would your employer need to know, and what do they need to know? Disclosing your MS to your employer is something that might need to be revisited throughout your time working with MS, whether with the same employer or a new one. Planning ahead is key as knowledge is power and this should help protect you should you decide to disclose. Under the Americans with Disabilities Act (ADA), if you work for a private employer with 15 or more employees, an employee is required to disclose if he or she needs an accommodation. The accommodation can be requested during the interview itself or over the course of your employment. You need to be able to perform the essential functions of your job, with or without accommodations, but in order to get the accommodations needed, you must first disclose. Some of the practical or emotional reasons for disclosure include reducing stress, being able to more freely examine insurance and benefits, and it
23
nationalmssociety.org | 1-800-FIGHT-MS
simply may make you feel more comfortable in case there is a change in your symptoms in the future. It is also important to be proactive and not delay until you have a poor performance evaluation. Once it has gotten to that point, it may be too late. Be sure to consider both the legal and practical sides of disclosure, the advantages and disadvantages of disclosure, and explore the components of a disclosure script. Some general suggestions on how to disclose include:
• Your disclosure should be brief, concise, nearly devoid of technical medical terms, and end with how you manage your symptoms so you are able to get a job done. • Show how the disability is just one aspect of your life • Assume that the employer either knows nothing about your disability or perhaps has misconceptions. A big part of disclosing is educating your employer • Write out your disclosure script and practice in on friends and family. Ask if it is too technical, medical, or scary There are many resources available to help you navigate this important decision. The Job Accommodation Network (JAN) is a free service of the U.S. Department of Labor Office of Disability Employment Policy and can be reached at askJAN.org or by phone at 1-800-526-7234. The National MS Society’s offers a disclosure
tool online at nationalMSsociety.org/ DiscloseWork. The National MS Society also offers several publications that cover disclosure and other employment issues: The Win-Win Approach to Reasonable Accommodations, Disclosure (Basic Facts Series) addresses disclosure issues in both personal and professional relationships, A Place in the Workforce includes an article entitled “Disclosure or Not, ” and ADA and People with MS. These publications can be obtained online at nationalmssociety.org/multimedia-library/ brochures/employment-issues/index.aspx. The National MS Society can provide assistance and support regarding your employment questions. Call 1-800-344-4867 to speak with an MS Navigator. You can discuss disclosure issues and accommodation strategies, as well as obtain referrals to other employment resources. Whatever you decide, don’t do it alone. Remember that no two situations are the same and you want to be the one in control. n
If you’re struggling to keep up at work, but aren’t ready to throw in the towel yet, visit MSWorks.org or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employment resources in the Greater Delaware Valley.
24 ADVOCACY
LOCAL UPDATES Health Insurance Exchanges Set to Open October 1
Health Insurance Exchanges open October 1 across the country. With a single application process, the system is designed to help individuals find appropriate, affordable health care coverage. The new consumer website, where you can find the most up to date information, is www.healthcare.gov. You will also be able to find information about your state’s Marketplace and who to call to enroll. If you have any questions, please call our Information and Resource Center at 1-800-FIGHT-MS and select Option 1.
DELAWARE SENATE BILL 35 PASSED The Delaware Chapter has been hard at work supporting Senator Margaret Rose-Henry on Senate Bill 35, related to specialty tier prescription coverage. The bill was introduced on April 16, 2013; the Chapter’s Government Relations Committee worked hard to have a voice at the Senate hearing. The Chapter contacted many individuals - members, their
MS connection: SUMMER 2013
friends, family and other State committees and councils – and asked them to contact legislators and ask for their support. The bill was subsequently passed by the Senate and went to the House where it was assigned to the Health and Human Development Committee. It was passed unanimously on June 12th and sent to the House for a full vote. The House unanimously passed the bill on June 26th. Governor Jack Markell will sign the bill into law in the next few weeks! We are very pleased with the outcome and thank all of our members, friends, family and colleagues for their diligence, support and energy!
Calling all advocates! The Delaware Chapter’s Government Relations Committee is looking to grow their membership and is particularly interested in recruiting members from Kent and Sussex Counties. If you are interested in becoming a member of this group and want to make a difference in the development and course of legislation at all levels, please contact Debra Veenema, Director of Programs and Services at debra.veenema@nmss.org or by phone at 302-655-5610 or 1-800 FIGHT MS.
nationalmssociety.org | 1-800-FIGHT-MS
NEW JERSEY NJ MS Task Force Continues its Work The NJ MS Task Force is working hard to develop its recommendations for the Governor and NJ legislature. In addition to suggesting potential legislation that could positively impact the lives of people impacted by MS, the Task Force is also exploring many regulatory and policy opportunities. You can find more information about the work of the Task Force at www.nj.gov/health/ fhs/mstaskforce/index.shtml
Support NJ Caregivers The Caregiver’s Assistance Act is in the NJ Assembly and Senate. Sponsored by Assemblywoman Pam Lampitt, the legislation would offer a modest gross income tax credit for qualifying caregivers. While the legislation is currently written to offer the tax credit to caregivers providing care to a senior family member, we are supporting this legislation the hope that conversations can continue to expand these tax credits to those providing care to non-seniors. In testimony before the Assembly’s Women and Children Committee, Karen Mariner offered the support of the National MS Society, and requested that the legislature extend these tax credits to the thousands of caregivers providing care to those under the age of 65. Call your Assemblyperson or Senator and urge
25 them to support the Caregiver’s Assistance Act. For more information, please contact Karen Mariner at Karen.Mariner@nmss.org.
PENNSYLVANIA New MS Caucus Forming in PA State Capital How many times have you thought that more people need to learn about what it is like to live with multiple sclerosis, or care for someone with MS? Have you wished that legislators had an understanding about the challenges of living with MS? We are thrilled to announce that we are doing something about this in our PA state capital. A new MS Caucus is being formed in the General Assembly. The Caucus will be chaired by Representative Marguerite Quinn. The Caucus has numerous goals including:
• Educating legislators and their staff about Multiple Sclerosis, its symptoms and treatments, and the latest in MS research • Providing legislators and staffers information about resources that exist to better serve their constituents impacted by MS • Discuss the challenges faced by people dealing with MS in PA and identifying bi-partisan solutions We need you to contact your State Representative and urge them to join the caucus. A sample letter already written for you to send is available through MSactivePA.org. You can send the letter as is, or you can personalize the letter to share your own MS story.
26
MS connection: SUMMER 2013
Your voice matters! Make sure your representative knows that they need to join the caucus. For more information, please contact karen.mariner@nmss.org or call 1-800-548-4611.
Medicaid Expansion The three PA Chapters of the National MS Society are working in coalition with other health groups to urge the legislature to support the expansion of Medicaid. Medicaid provides important coverage to people with chronic conditions like MS. In addition to medical coverage, it also provides for home and community based services that allow people to remain in their homes. For additional information, please contact Karen Mariner at Karen.Mariner@nmss. org or call 215-271-1500.
join the discussion online
For up to date information about the legislation we are tracking in PA, visit the advocacy blog at www.msactivepa.org. n
PA:
msactivepa.wordpress.com
facebook.com/MSPACAN
@MScanPA
NJ:
msactivenj.wordpress.com
facebook.com/MSNJCAN
@NMSSNJCAN
CALL FOR NOMINATIONS The Delaware and Greater Delaware Valley Chapters of the National MS Society are seeking nominations for new trustees. All members are eligible to nominate candidates for the board of trustees. Nominations must be mailed by September 1 to the addresses below. Please provide the name, address, phone number, e-mail address and a brief background of the nominee, in addition to your own name, address, phone number and e-mail address. For more information about the board nomination process or the chapters’ governance, please call 1-800-344-4867.
For DE: Nominating Committee National MS Society Two Mill Road, Suite 106 Wilmington, DE 19806
For NJ and PA: Nominating Committee National MS Society 30 S. 17th St., Suite 800 Philadelphia, PA 19103
nationalmssociety.org | 1-800-FIGHT-MS
Face of MS: LISA MURRAY Despite living with Relapsing-Remitting MS for 14 years and facing symptoms such as tingling sensations, numbness, balance issues and optic neuritis, Lisa Murray continues to spread hope and empower others. For Lisa, an MS diagnosis has never meant slowing down her enthusiasm and fervor for life. “People hear MS and think their life is ending, but it’s just a new beginning. It’s hard sometimes to accept it. I tell people, ‘I’m the face of MS’.” From participating in National MS Society events to helping others, Lisa is constantly making an impact. Since learning about Walk MS on the Greater Delaware Valley Chapter’s website 14 years ago, her involvement with the Society has continued to grow. She started out as a walker and quickly progressed to a committee member and helping to run the North Penn High School site. She has helped with numerous aspects of the planning process, including setting up the route and acquiring new vendors. “Lisa is a true community leader,” explains Megan Dipanni, vice president of development at the Society. “At her Walk MS site, she took care of everything: logistics, food, entertainment and beyond. She is an
27 unbelievably committed volunteer who made the North Penn Walk MS site one of our most successful.” Her team, Lisa’s Miracle Workers, has achieved outstanding fundraising success over the years. In the early years they set up small fundraising events to raise funds and more recently focused on sending letters to local businesses to request donations. In 2013, they raised more than $7,000, with Lisa herself raising more $1,400. Lisa believes Walk MS is a great experience and has never passed it up. A few years ago, she realized that there were no groups in her area, so she decided to set one up at the local library. The group, The Lansdale MS Optimists, includes around 15 people living with MS or family members. “Some people have MS and hide from it,” she says. Lisa encourages them to do the exact opposite and make connections with other people going through similar experiences. The members of her group support one another, not only by talking but also by helping one another with everyday challenges, such as offering a ride. By reaching out to one another, unbreakable bonds are formed. Speaking about her diagnosis, Lisa says “I had three small kids. I just had to keep going every single day.” Her eighteen year old daughter has told her that she is her inspiration, because she helps other people just like her. Lisa lives every day with the same motto: “Take one day each day. One step at a time. It will get better.” For more information about Walk MS, visit walkMS.org. For more information about support groups, visit nationalmssociety.org. n
Free Matter for the Blind or Handicapped
30 South 17th Street, Suite 800 Philadelphia, PA 19103 ADDRESS SERVICE REQUESTED
1-800-FIGHT-MS n nationalMSsociety.org
City to Shore Ride 2013
BIKE TO THE BAY RIDE /// SEPTEMBER 21 & 22 CITY TO SHORE RIDE /// SEPTEMBER 28 & 29 REGISTER TODAY! /// BIKEMS.ORG