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SPRING 2016 NEW JERSEY METRO CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

04MS AND EMPLOYMENT

06WELLNESSCLASSES

08ADVOCACY UPDATE

12BIKE MS

WALK MSWEEKEND:APRIL 16-17SEE PAGE 10

2 MS CONNECTION: SPRING 2016 3NATIONALMSSOCIETY.ORG | 1-800-344-4867

LETTER FROM THE CHAPTER PRESIDENTLISA GALLIPOLII am so proud to have joined the National MS Society this January. The passion of the volunteers and staff is contagious and I am excited about my role to partner with these enthusiastic individuals committed to our collective vision – a world free of MS.

What kinds of impacts are we making? Worldwide we are the largest private funder of MS research having invested $896 million to date, providing early career support and funding to more than 942 new MS researchers, including every recognized MS expert. Locally - every day we provide critically needed information to people living with MS – connecting them to program, services and resources.

Engage with Us! We can’t do it alone – it takes all of us working together! This spring we have opportunities to get involved with programs and fundraising events. If you haven’t been involved before we ask you to put Walk MS on your calendar this year! It is truly a day to bring the MS Community together. Join us!

Living with MS program at Walk MS! This year we are bringing something NEW to Walk MS! The Living with MS program honors and celebrates those with multiple sclerosis who participate in Walk MS. Anyone who registers for Walk MS and identifies themselves as living with MS can pick up their free “Living with MS” T-shirt at the Walk and enjoy other special recognition.

I look forward to working together – and hopefully seeing you at Walk MS this April!

With Gratitude,

Lisa GallipoliPresident, New Jersey Metro Chapteremail: [email protected]: 732-660-1005 ext. 44322

New Jersey Metro Chapter Aspen Corporate Park I 1480 US Highway 9 North, Suite 301 Woodbridge, NJ 07095

CONNECT WITH US ONLINE :New Jersey Metro Chapter nationalMSsociety.org/[email protected]

Like us: facebook.com/NMSSnjm

Follow us: @ NMSSnjm

Watch us: youtube.com/NewJerseyMetro

Production of this newsletter is generously supported by:

Board Leadership:

Chair Bonnie Higgins

Immediate Past Chair Michael D. Gibney

First Vice Chair/ Chair Elect Jeffrey S. Hurwitz, Esq.

Vice Chair Meryl Ravitz

Treasurer Joe Welter

Secretary Mike Pawelczak

Staff Leadership:

Chapter President Lisa Gallipoli

Executive Vice President of Development Karen Drzik

Vice President of Programs & Services Nancy Chazen

Director of Finance Debbra Elko

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.

The New Jersey Chapter and the MS Centers in NJ have collaborative relationships that enhance the services provided to those living with and affected by MS. The MS Centers provide clinical care and medical expertise while the chapter complements that care by offering a variety of educational and support services. The five MS Centers in NJ are listed below:

Bergen County The MS Comprehensive Care Center at Holy Name Hospital 718 Teaneck Rd., Teaneck, NJ 201-837-0727 http://www.holyname.org/MSCenter

Essex County MS Comprehensive Care Center at Barnabas Ambulatory Care Center 200 South Orange Ave., Livingston, NJ 973-322-7484 http://bit.ly/1A1KKxK

Rutgers-NJMS Multiple Sclerosis Center 90 Bergen St., Suite 8100, Newark, NJ 973-972-2550 http://bit.ly/12zldGd

Middlesex County Rutgers-Robert Wood Johnson Center for MS 125 Paterson St., New Brunswick, NJ 732-235-7733 http://bit.ly/1GpUEk3

Monmouth County The Linda E Cardinale MS Center at CentraState Hospital Star and Barry Tobias Ambulatory Campus 901 Main St., Freehold, NJ 732-294-2505 http://bit.ly/1wDYruM

©2016 National MS Society, New Jersey Metro Chapter

NATIONAL MULTIPLE SCLEROSIS SOCIETY MS CENTERS IN NEW JERSEY


MS CAN SOMETIMES CHANGE EMPLOYMENT STATUSSTEPS TO TAKE I F YOU ARE AFRAI D OF LOS ING YOUR JOBAre you afraid you’ll lose your job because you have MS? Maybe you are concerned that your job is in jeopardy because your performance has declined or that you have a difficult boss. There are things you can do to help you hold onto your job and to secure your future if you do become unemployed. Here are some steps you can take:

1. Be visible. Be the first one in and last to leave, even if it’s just by a few minutes. It’s important to be viewed as competent and hard working. Don’t be shy about your accomplishments. Sell yourself: make sure that those on top know how valuable you are to the company and to the company’s bottom line.

2. Be easy to talk to and work with. Difficult employees are usually the first to go. Maintain a positive attitude and take changes in stride.

3. Be useful. Have a strong work ethic. When times are tough, employers need employees who will pitch in to do whatever is needed. If possible, find ways to expand your skills. Learn about other departments; it’s harder

for an employer to fire someone who is valuable to several areas of a business.

4. Have a plan B. Just remember, no one is indispensable, so always be prepared for the possibility of a layoff.

5. If possible, save. The more you have in the bank, the less worried you have to be about being laid off.

6. Have your resume updated and ready.

7. Know what jobs are out there. Use your professional network and talk to people in your industry. Find out which companies are doing well and make contact with staff there.

8. Consider other kinds of jobs in which you could apply the skills you have acquired.

If you have a question about workplace disclosure, social security benefits, reasonable accommodations, or other employment issues, or if you are thinking about returning to work and are not sure where to start, we can help. Send your questions directly to [email protected] An employment specialist will respond within 48 hours. You can also call 1-800-344-4867 for more assistance or visit www.nationalmssociety.org/Resources-Support/Employment

Adapted from Steven Viscusi’s book “How to Bullet Proof Your Job.” n

VOLUNTEER SPOTLIGHT:

VICTORIA ARMASNational MS Society supporter Victoria Armas, an assistant manager at a bank and an avid runner, traveler and “foodie,” has a long-standing connection with MS. Her mother was diagnosed with the disease when Victoria was just 10 years old. She has been volunteering with the Society since 2014, and, since her mother’s death last year, has vowed to increase her participation. Victoria walked in Walk MS on the day of her mother’s viewing, April 19, 2015. She says she felt that her mother was there walking with her that day, but without the pain associated with her disease.

Victoria has participated in other MS events since the walk. “My family and I did the MuckFest MS [event], which we are doing again this year because we had a lot of laughs and reminisced about my mom,” she said. “I’ve also volunteered for [Bike MS: Barrels and Brews] and Bike MS: Country Challenge 2015. Those two volunteer events helped me grow as an individual and connect with other faces of MS.”

Victoria says the National MS Society is an organization people can turn to in time of need or uncertainty, “a family of loving and caring individuals who are there to help, whether it’s an ear to listen, a helping hand or a hug when you really need it.”

She enjoys connecting with other people who are affected by MS, and she encourages people to get involved in the volunteering and fundraising efforts of the society.

“Start early, involve everyone you know, network as much as possible and share your story.”

-Abigail Lyon, Community Engagement Intern

For more information about events hosted by the chapter visit: www.nationalmssociety.org/NJM or call 732-660-1005, option 2. n

VICTORIA ARMAS AND HER HUSBAND, ALEX, WITH VICTORIA’S MOTHER


EVERYDAY MATTERSEveryone has their own idea of their “best life.” For people living with MS, the idea of that best life can change due to the challenges of having a chronic, unpredictable and lifelong disease.

Everyday Matters, (everdayMSmatters.org) is an interactive national program that tells the stories of real people facing the everyday challenges of MS. It explains the principles of positive psychology, the study of “what makes people thrive, [recognizing]…a strong correlation between an individual’s mindset, support and well-being.” The program describes how these principles can be applied in a strategy for living your best life with MS, and it identifies community resources for support. You can participate in an exciting 6 Week Tele-Conference Program on Wednesdays, 6:30 – 8:00 PM, May 11, 18 and 25: and June 1, 8 and 15.

The facilitator, LuAnn Pierce, is a licensed clinical social worker who has worked in the field of human services and mental health for three decades and with the National MS Society in different capacities since 2007. She is an instructor for several monthly classes for volunteers and for individuals, couples and family members living with MS. LuAnn also offers counseling, care management, training and groups for the CO-WY chapter.

Registration is required; contact Lisa Torre-Janssen at 732-508-4431 or at [email protected]. You may be put on a wait list. n

CHAPTER SPONSORED WELLNESS CLASSESThe New Jersey Metro Chapter offers Wellness classes for people with MS.

Yoga, tai chi and aquatics classes are modified so that individuals may perform the movements in either a seated or standing position; the aquatics class has a chair lift. The classes are held in a variety of locations throughout northern and central New Jersey. Caregivers are welcome to participate with the person who has MS.

Registration is required. You may contact the Society’s Information & Referral Center at 1-800-344-4867 or email [email protected]. There are no fees for these classes.

The Chapter maintains a list of community wellness programs that offer a variety of adaptive exercise classes. You can learn more about those classes from our Chapter website. For more details about the community programs, you must contact the facility directly. Please note: The list of programs is provided as a courtesy. These programs are neither facilitated nor developed by our Chapter or the National MS Society.

The Chapter is proud to recognize its Partners in Adaptive Exercise:

Hamilton YMCA’s - One Step for MS Toms River Fitness Center – Aquatic Therapy with Carol Buckwalter n

2016 WEBINAR & TELELEARNING SERIESJoin us from the convenience of your home or office at no charge for an in-depth discussion of topics that include exercise, nutrition, communication, symptom management and total health. Ask our team of Can Do MS consultants questions and learn how you can live your best life by adopting healthy lifestyle behaviors and actively co-managing your MS. Programs are held on the 2nd Tuesday of each month from 8:00 PM to 9:15 PM EST; we sometimes add others.

The March and April webinars are: Your Whole Health, Your Whole Team: Managing Your Complex MS Symptoms (March 8); The Complete Guide to Social Security Disability (March 15) and Home-Based Employment: What Employers Want (March 29); Myelin, Movement, and the Mind: Hot Topics in MS Research (April 12). Registration for each webinar is required. For more information call 1-800-344-4867 or visit: www.nationalmssociety.org/telelearning.

If you are not able to view Can Do MS webinars live, then visit Can Do MS’s webinar archives: http://www.mscando.org/webinararchive. n

ONE STEP PROGRAM AT THE YMCAS OF HAMILTON AND MADISONThe New Jersey Metro Chapter and the YMCAs of Hamilton and Madison are proud to collaborate in offering a customized wellness program for adults with MS. The One Step program is a 12-week, 24-session wellness course.

One Step aims to provide attendees with a comfortable and accessible environment to encourage empowerment via facilitated conversations, and, through therapeutic exercises, address the issues of fatigue, mobility, weakness and depression.

FOR MORE INFORMATION AND TO REGISTER:

Hamilton: contact Joe Fuhrman at 609-581-9622 x132 or [email protected]

Madison: contact Joe Gonsalves at 973-822-9622 x2242 or [email protected]

Find out if there’s a local YMCA in your area, and if they offer any adaptive exercise classes. Visit: http://www.njymca.org/locations/ n


OPPORTUNITIES TO PARTICIPATE IN RESEARCH STUDIESYou may be able to help advance knowledge in MS by getting involved in research studies. On the NJ Metro Chapter website you will find a list of studies that, depending on eligibility requirements, may welcome your participation. Some come with stipends; some provide transportation (for example, a study at the Kessler Institute in West Orange). In some studies you can participate online in the comfort of your home. Columbia University, Holy Name Medical Center in Teaneck, Oregon State University, Rutgers University, SUNY Buffalo, SUNY Albany and the University of California, San Francisco are some of the medical schools and hospitals recruiting subjects for their research.To review the list, go to the Chapter webpage at http://www.nationalmssociety.org/Chapters/NJM/Services-and-Support/Resources/Local-Research-Studies. n

ADVOCACY UPDATEThe New Jersey state legislative session began in mid-January. Our staff and activists are already hard at work advocating for policies that benefit people with MS and their families. This year we are focusing our efforts on increasing transparency in the healthcare system with respect to the accessibility and cost of treatment, so that consumers have the information they need to make informed decisions about their medical care. Because many people with MS need to make changes

in their homes to improve accessibility, safety and convenience, we are also urging lawmakers to introduce legislation providing home modification tax credits.

To learn more about our advocacy effort or to become involved, please contact Mara Brough at (267) 765-5104. n

GOT MS? ALL THE WAYS YOU CAN CONNECTNational MS Society connection programs bring together people who share the challenging life experiences of MS for support, education and mutual aid. They learn new information from one another, including strategies for managing MS; they find emotional support; they gain confidence in facing the challenges of their disease; and they have the opportunity to help others with similar problems. The New Jersey Metro Chapter sponsors more than 30 self-groups in 14 counties. For more information about SHGs, contact Lisa at [email protected] or 732-508-4431.

You can connect with trained volunteers who understand your experiences by joining in-person or online groups or one-on-one by telephone and email. To learn more about the ways you can connect, visit www.nationalmssociety.org/Resources-Support/Find-Support. n

WHY WE WALK: THE GREENGRASS FAMILY-By Carla GreengrassWalk MS is an opportunity to come together for one common goal: a world free of MS. Our passionate participants help raise awareness and funds to change the lives of those affect by MS. Congrats to the entire Greengrass family who have proven to be amazing leaders in this fight. “In 2007, our world changed. Joel received a diagnosis of Relapse Remitting Multiple Sclerosis. We chose to share the news with just close family and friends and kept a low and private profile – never really knowing how Joel would feel after his weekly treatments. The year was marked with sadness, isolation and uncertainty. A year later, in early 2008, I spotted some information about a MS walk happening at a local park. I knew that our family and friends would welcome the chance to support us, and share in a common goal. We would walk to find a cure…and in the process, we would find ourselves again. With Joel’s buy-in, I registered Team Greengrass and made our oldest daughter Aly the captain. Walk MS quickly became a positive focal point we could all rally around. There were logos to design, parties to plan, posters to make, words to craft. Through fundraising letters and emails, and

a story in the local paper, we were able to share with our extended community what we had been holding in for so many months. In that first year alone, we raised $34,000. In our wildest dreams, we never anticipated such a tremendous response.Year by year, Team Greengrass and our presence at Walk MS have grown by leaps and bounds. In 2015, we walked with our family, friends, neighbors, teammates and colleagues. Our team T-shirts and swag have become somewhat legendary and coveted, too. It’s a source of fun and pride when we see those shirts around town!

Since 2008, Team Greengrass has raised an excess of $213,000 thru Walk MS, Bike MS and MuckFest, helping to support and further the incredible work being done by the Society. We’ve found other ways as well to advocate and raise awareness in the media. In 2012, Joel was featured in an article in New York City’s lifestyle magazine ‘Downtown’, and in 2015, Aly wrote the first-ever long form

editorial piece on behalf of the National MS Society, for BuzzFeed.com, an international news and entertainment website. Starting Team Greengrass helped us to make sense of this unexpected curve ball and gives us a voice and a purpose. Participating as a family and as a community has turned one of the darkest moments in our lives into an empowering and inspiring experience, and we are so incredibly honored to be this year’s Walk MS Ambassadors.” n


WALK MS: LIVING WITH MSWe are excited to announce a new Walk MS program this year: Living with MS! The Living with MS program is a way to honor and recognize those participants who have been diagnosed with MS. Participants who identify that they are living with MS will receive a free Living with MS T-shirt and other special recognition during Walk MS. Connect with others. Inspire others. And let those who are newly diagnosed know that they aren’t alone. Register now! www.walkMS.org.

FRONT BACK

WALK MS WEEKEND: APRIL 16-17, 2016JOIN US AS WE WALK TO CREATE A WORLD FREE OF MS.

Join thousands of people affected by MS and help raise awareness and change millions of lives. There is no registration fee to join and we offer fully accessible routes; Walk MS is truly an event for everyone!

SATURDAY, APRIL 16, 2016Seaside Park: Seaside Park Boardwalk

Jersey City: Liberty State Park

Clark: Oak Ridge Park

Readington: Solberg Airport

SUNDAY, APRIL 17, 2016Ridgefield Park: Overpeck County Park

Roxbury: Horseshoe Lake Recreation Complex

West Orange: Clipper Pavilion at Orange Reservoir

North Brunswick: Parsons Elementary School

Hamilton: Veterans Park

Manalapan: Battlefield State Park

Lake Como: Bar Anticipation

REGISTER TODAY!www.WalkMS.org

WALK MS: HEROES IN HEALTHCAREWalk MS: Heroes in Healthcare is an opportunity for physicians and patients to team up at Walk MS and take steps together toward not only a world free of MS, but a healthier lifestyle! Patients can enjoy a refreshing approach and be taken out of the traditional doctor office setting. Physicians also have the opportunity to connect with their patients on a new exciting level. We know walking can improve many things like lowering cholesterol and reducing blood pressure; this program can help physicians educate and empower their patients to a healthier lifestyle all while moving us toward a world free of MS. Contact Julianne Falgiano, Manager of Walk MS at [email protected] to choose your walk site and to register your team.


DON’T JUST RIDE, BIKE MS!Bike MS is more than a ride. It’s an experience grounded in camaraderie and marked by passion, inspiration, determination and pure enjoyment. Support for the ride is comprehensive. We provide food and drink to fuel everyone’s journey and mechanical and medical help as needed. With volunteers cheering for your team along the way, the atmosphere couldn’t be more electric. The experience, shared with new friends and old, will be one you’ll never forget. And remember: with each pedal stroke you’ll be helping us to reach our goal--a world free of MS.

BIKE MS: COAST THE COASTCelebrating our 25th AnniversaryMay 21 & 22, 2016 25, 50, 85, 100 and 170 mile route optionsWest Long Branch – Little Egg Harbor – Cape Maywww.BikeMSCoasttheCoast.orgJoin us on one of five routes along the New Jersey Shore as we celebrate the 25th year of this cycling event. Enjoy coastal views from seaside towns as you ride on flat terrain with 1500 cyclists of all ages and abilities.

BIKE MS: COUNTRY CHALLENGESeptember 17 & 18, 2016

25, 50, 62 and 100 mile route optionsMorristown, NJwww.BikeMSCountryChallenge.org

This ride offers a one- or two-day cycling adventure through historic towns, along pretty back roads and around the Great Swamp. Whether you aim to test your limits or just enjoy a pleasant ride with friends, Bike MS: Country Challenge is for you! n

MEET OUR 2016 BIKE MS AMBASSADOR: ANNE MATTHEWS

Anne started partici-pating in Bike MS: Coast the Coast in 1995. “My friend en-couraged me to ride because it was a well-organized ride through beautiful beach towns. We rode because it’s a fun day for people who enjoy bike riding.

I didn’t even know what MS was at the time.” Since then, Anne has continued to participate in the Bike MS: Coast the Coast rides.In 2006 Anne woke up with numbness and tingling in her legs and tightness in her knees. Having lost her mother to ALS, she was worried that she had this disease and immediately visited her doctor. An MRI showed lesions of the brain, but it wasn’t until February 2009, after a second episode of neurologic symptoms had occurred, that MS was diagnosed. In 2009, Anne’s friends changed their team name to Annie’s Peeps. In the fall of 2013, Anne could no longer balance on a two-wheeler because of weakness in her left leg. In order to keep riding, Anne bought a recumbent tricycle for the ride in 2014. “It’s a much slower ride, but I am independent on the trike.”

On the day of the ride, Anne always wears her t-shirt from the 2006 Bike MS: Coast the Coast ride under her Annie’s Peeps jersey. “It reminds me of how you never know what is around the corner for you. You never know what is going to happen.” n

FINISH MSFinish MS offers runners, cyclists, swimmers and endurance athletes of all types the chance to create a world free of MS while pushing their own personal limits. Finish MS is a unique program that unites individuals with the common goal of creating a world free of MS and completing an athletic endurance event.We are excited to announce that the New Jersey Metro Chapter is an official Charity Partner of the 2016 New Jersey Marathon! The 2016 New Jersey Marathon consists of four different races held on April 30 & May 1, 2016. You will have the option to run in the 5k, Relay, Half Marathon, or Marathon races. For more information about Finish MS and to participate in one of our charity partner races, email Steffanie Bicskei or call 732-508-4429. n


LAUGHSMuckFest® MS New Jersey is the FUn mud & obstacle 5K. No special training required! We’re also on a mission to end multiple sclerosis. Have a blast and make a difference!

Saturday, June 25 | Sunday, June 26, 2016Essex County South Mountain ReservationNorthfield Ave. & Cherry Ln., West Orange, NJ 07052

REGISTER AT MUCKFESTMS.COM© 2016 Event 360, Inc.

BUILTLAUGHS

FOR

#GetDIRTYNj

NEW JERSEY

Presented Locally By

MEET THE MUCKFEST AMBASSADOR: MICHAEL RENTNER

Raising thousands of dollars for MS takes work and commitment, and in the case of Muckfest MS it takes getting dirty. Slogging through a muddy obstacle course may not sound like a good time or a way to raise money for the National MS Society, but in Muckfest it’s both. Just ask Michael Rentner captain of the Dirt Merchants, the team he assembled for this messy marathon 3 years ago.

Shortly after he was diagnosed with MS at age 40, Mike, his wife Kim and their friends first became involved in fund-raising for the society by participating in Walk MS. Looking for a different challenge, Mike and his team of hearty souls romped through the mire for the first time in June 2013.

Mike’s approach to fund-raising is basic: he solicits donations from family, friends, neighbors and co-workers, and he shares his story on his fund-raising page to raise awareness. The National MS Society website was where he first went to learn about living with MS. Mike is grateful to the society for helping him cope with the new challenge and welcomes the opportunity to support the work it does. “I had no clue what multiple sclerosis was, so the very first thing I did was log on to the MS Society website to gather information. My family and I subscribed to the ‘Knowledge is Power’ educational series offered through the MS Society. I also attended a few webinars and began to meet with an MS support group.

“Being diagnosed with MS opened my eyes to the world of chronic disease and all that comes with it. It can be overwhelming without the right support system,” he said. “While MS has changed my life, it has not changed my lifestyle, and I want to keep it that way as long as I can. What better way to do that than by supporting the group fighting the hardest for all things MS.”

In this year’s Muckfest, which takes place on June 25 and 26, Mike hopes to expand his team. He expects to raise even more money this year, and once again, Muck it! n

PICTURED ABOVE: KIM, MICHAEL AND COLIN RENTNER

FREE MATTER FOR THE

BLIND ORHANDICAPPED

New Jersey Metro Chapter 1480 U.S. Highway 9 NSuite 301 Woodbridge, NJ 07095

HOLD THE DATE JUNE 16, 2016New Jersey Performing Arts Center

Musical Moments for MS

ARETHAFRANKLINQ U E E N O F S O U L

P R E S E N T S

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