fall 2012 new jersey metro chapter
MS Connection Newsletter
getting down and dirty for multiple sclerosis page 12 INSIDE 05 THIS ISSUE
vote on november 6th!
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wellness programs really make a difference
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board member appointed judge
women on the move luncheon
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MS connection: fall 2012
Letter from
Mike Gibney
Connect with us online: New Jersey Metro Chapter www.nationalMSsociety.org/NJM Email: njminfo@nmss.org Like us: www.facebook.com/pages/ National-MultipleSclerosis-Society New-Jersey-MetroChapter/117041902295
As we leave the dog days of summer and enter the Autumn (my favorite season), I look forward to two Bike MS events: The Hops to Hops ride in Lambertville, and The Great New Jersey Country Bike ride. Hops is a one-day tour of the Amwell Valley in New Jersey. We start and end on the shores of the Delaware River in one of the most beautiful areas of our state. The Country ride is a two-day 100+ mile ride through a natural wildlife reserve, historic towns, and back roads in the Morris County area. Of course, both rides are fun-filled days giving us a chance to meet and greet friends old and new, but we must always remember, we are doing this all for a cause: To mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. So, I encourage all of our readers to donate, participate, volunteer, or just come out and cheer us on. (Oh yeah, and please pray for good weather!)
Follow us: @MSNJMetro
September is also the last month of the Chapter’s fiscal year. While 2012 was not without its challenges, I am happy to report we are ending another successful year thanks to a dedicated staff, an eager group of volunteers, and the financial support of many. I am proud of all of you because, as mentioned, the economy has not been our ally. Despite this obstacle, we continued to address the needs of people with MS while providing funds for important research
Watch us: www.youtube.com/user/ NewJerseyMetro
In closing, please mark your calendars for the Annual Women on the Move Luncheon at the Westmont Country Club in Woodland Park, NJ on November 9.
Production of this newsletter is generously supported by:
Mike Gibney Board Chair and Bike MS Cyclist
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nationalmssociety.org | 1-800-344-4867
NATIONAL MULTIPLE SCLEROSIS SOCIETY
MS CENTERS IN NJ
New Jersey Metro Chapter Northern Office:
1 Kalisa Way, Suite 205, Paramus, NJ 07652 201-967-5599
Central Office:
246 Monmouth Road, Oakhurst, NJ 07755 732-660-1005
Board Leadership:
Staff Leadership:
Chair
Chapter President
Michael D. Gibney
Jim Roberts
Treasurer
Executive Vice President of Development
Joe Welter Secretary
Michael Pawelczak
Karen Drzik Vice President of Programs & Services
Nancy Chazen Vice President of Development
Jennifer Hivry Vice President of Finance
Gwen Leach Vice President of Operations
Marianne Maddocks Newsletter Editor:
Alexandra Whelan 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 Society recommends that all questions and information be discussed with a personal physician. Such names appear here solely because they are considered use or contents of any product or service mentioned.
Š 2012 National Multiple Sclerosis Society, New Jersey Metro Chapter
and the MS Centers in NJ have collaborative relationships that enhance the services that are provided to people and their families who live clinical care and medical expertise while the Chapter complements that care by offering a variety of educational and support services. Bergen County at Holy Name Hospital 718 Teaneck Road, Teaneck, NJ 201-837-0727 Essex County MS Comprehensive Care Center at St. Barnabas Ambulatory Care Center 200 South Orange Ave., Livingston, NJ 973-322-7484 at UMDNJ 90 Bergen St., Suite 8100, Newark, NJ 973-972-2550 Middlesex County Robert Wood Johnson Center for MS Clinical Academic Building- 6th Floor 125 Paterson St., New Brunswick, NJ 732-235-7733 Monmouth County at CentraState Hospital Star and Barry Tobias Ambulatory Campus 901 Main St., Freehold, NJ 732-294-2505
4 MS Specialty Pharmacies
Specialty Pharmacies often provide more intimate care to their customers than most retail pharmacies. The pharmacists and staff may train specifically to learn more about individual conditions as they relate to their customers.
walgreens works with many support programs which provide financial support to ms patients which many elminate or reduce a customer’s copay. Walgreen’s has taken an interest in the care of MS patients; they have added a new component to their retail outlets: MS Center of Excellence Pharmacies, effective September 1, 2012 (this is not related to the National MS Society Centers of Excellence); current locations in NJ include: Bergenfield, Fair Lawn, Maplewood, New Brunswick, Roseland and Wayne. The Walgreens pharmacists specialize in MS medication management expertise and assistance and all of the pharmacy staff is trained to understand the needs of people living with MS. The MS medications will be in stock, with the ability to refill at any Walgreens MS Center of Excellence Pharmacies. Walgreens works with many support programs which provide financial support to MS patients which
MS connection: fall 2012 may eliminate or reduce a customer’s copay. You can read more about specialty pharmacies at this website: www. specialtypharmacycontinuum.com/ ViewArticle.aspx?d=Clinical&d_ id=500&i=August+2012&i_id=878&a_ id=21479 The Chapter thanks Walgreen’s for providing volunteers to help at some Chapter events including Fun Day, MS Summer Golf, the Chapter Muckruckus and the Fall Bike rides! g
Support for Children, Teens and Their Families
Are you a parent of a child or teen with MS? Are you a teen with MS? Life as we know it is hard enough but the challenges of MS adds stress which can add to the feeling of isolation or the worsening of MS symptoms. Talking with others, allowing you to share your story or just listening to others in the same situation may help you to know that you are NOT alone. The NJ Metro Chapter is in the process of creating a group to fulfill the needs of this special group of people. If you are interested, please contact Lisa Torre-Janssen at the chapter at 732-508-4431 or lisa.torre-janssen@nmss. org. g
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vote on november 6th! Are you ready to vote? During the 2008 election, the US Census Reported 6 million people failed to cast a ballot – either because they didn’t know how to register or they missed a local deadline. Trends also indicate people with disabilities register to vote at a rate that is 16 percent lower than other Americans. Since the 2010 U.S. Census, 15 million Americans became eligible to vote. In addition, more than one in 10 eligible voters has a disability – a force to contend with! Join forces with us. Participate in National Voter Registration Day (www. nationalvoterregistrationday.org/about) on September 25 - register yourself (www.usa. gov/Citizen/Topics/Voting/Register.shtml) to vote, or learn how to register others. Learn more about Election 2012, polling place accessibility, and possible changes to your state’s voter ID laws! (www.ncsl.org/legislatureselections/elections/voter-id.aspx). The Help America Vote Act requires every precinct to have at least one voting machine or system accessible to persons with disabilities. For accessibility guidelines, go to the United State Election Assistance Commission at www.eac. gov. Look under the Resources for Voters tab for information on Voter Accessibility. For a detailed reference to voter accessibility, visit the United States ADA website at www.ada.gov/ votingck.htm. Be an MS Activist…Check-back often for
Society updates at www.nationalMSsociety. org! Election 2012 information can be found on the Government Affairs and Advocacy Page. For more information on Chapter Advocacy, contact Stephanie Hunsinger at stephanie. hunsinger@nmss.org or call 1-800-344-4867, option 2. g
With Heartfelt Thanks The New Jersey Metro Chapter recognizes November as National Caregiver Month! Chapter members are invited to recognize and congratulate their very special CARE PARTNERS who provide love, companionship and physical and emotional support each and every day. If you would like to send your care partner a special recognition, provide us with their names and addresses. You may also send us a personal note written to your care partner that we will include with a small gift provided by the Chapter (your note may include a message indicating that s/he is special and important to you). We will honor your praise by sending out a gift, “With Heartfelt Thanks” sent directly to them. This program is active from November through the end of February. Mail the name and address of your care partner and your special note to the National MS Society, 1 Kalisa Way, Suite 205, Paramus, NJ 07652 Attn: Jennifer Fallon or send an e-mail to jennifer.fallon@nmss.org. g
6 Educational Teleconference Series Join us from the comfort of your own phone for informative conference calls on a diverse range of topics for people living with MS. This educational series is free and made available through the collaboration of the following chapters of the National Multiple Sclerosis Society: Connecticut, Greater New England, Long Island, New Jersey Metro, New York City - Southern New York, Rhode Island and Upstate New York. Program brochures will be sent to members’ homes in the early fall. Here is a sneak peak at what to expect:
Wednesday, October 24, 2012, 6:30 - 7:30 p.m. Top 10 List of MS Questions This call will address the most common questions and concerns facing individuals newly diagnosed with MS. Speaker: Angela Applebee, M.D. Director of the MS Center of Northern New England at Fletcher Allen Health Care Registration Deadline: October 17, 2012
Wednesday, November 28, 2012, 6:30 - 7:30 p.m. Invisible Symptoms People who have “invisible” MS symptoms have a unique set of difficulties. This call will address the “invisible” symptoms of MS such as
MS connection: fall 2012 pain, fatigue, and cognitive issues and how to manage these symptoms effectively. Speaker: Pam Mills, RN, BSN, MSCN Registration Deadline: November 21, 2012
Wednesday, December 12, 2012, 6:30 - 7:30 p.m. MS: A Family Affair MS comes with many challenges for both the individual and family living with MS. Changes occur in family roles and everyday functions. Learning about MS and communicating are effective strategies for coping with these challenges and developing a healthier lifestyle. Speaker: Peggy Crawford, Ph.D., PSYD, Clinical Psychologist, Cincinnati Children’s Hospital; contributing author to Multiple Sclerosis: A Guide for Families Speaker: Bonnie Danowski, family member of a person with MS and active volunteer for NMSS Arizona Chapter Registration Deadline: December 5, 2012 For more information or to register please call 1-800-344-4867 or go to the Chapter website at www.nationalMSsociety.org/NJM. View the Chapter website often to learn of program updates. Stay tuned for spring session teleconferences taking place in April, May, and June 2013. Upcoming topics: Bowel & Bladder, Sex, and Progressive MS. g
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client to client resources A donor recently informed the Chapter about his experience in providing a wheelchair donation to an individual who read about its availability in this regular column of MS Connections: “I am overwhelmed by the urgency and necessity by so many people in need of specific medical equipment. I placed one ad in the MS Connections and received more than 10 responses from people who were in dire need of an electric scooter. Although I am happy to help the one person that took the donation, my heart broke that I couldn’t help them all! It is good to know that the NJ Metro Chapter is there to help with so many needs.” To view current resources offered by clients, to clients, view the Chapter’s website often: http://www.nationalmssociety.org/ chapters/njm/programs--services/clientto-client-resources/index.aspx.
Chapter Self Help Groups Offer Exciting Programs The Chapter has more than 30 self-help groups in its service area. The groups offer individuals opportunities to meet others who have similar life experiences; to share ideas; to learn from each other; to learn from invited speakers. Everyone is welcome. To see a monthly calendar of events, view the Chapter website at www.nationalMSsociety.org/NJM click on the link for Programs and Services then click on Self-Help groups. You may also call the Chapter at 1-800-344-4867 and ask about selfhelp groups. g
new listing Free Scooter call Cheryl at 908-561-8447 for more details
Susan, Arlene and Lynley having a great time at Fun Day at Monmouth Park in June!
8 Wellness Programs Really Make A Difference! Exercise is a key component of your overall healthcare strategy, but that doesn’t mean you need to be a super athlete to enjoy the benefits. Studies show that moderate aerobic exercise improves cardiac health, stamina, mood and helps manage symptoms like fatigue, weakness, and bladder and bowel difficulties. Stretching exercises—whether done on your own or with a helper—can relieve stiffness and improve your flexibility and mobility. The New Jersey Metro Chapter offers a variety of Wellness programs throughout New Jersey. In addition to posting its own classes, the Chapter includes a listing of very important programs offered by other community organizations. Learn more about good ways to get yourself moving—and have fun while you’re doing it. The following accounts are from 2 people who are actively engaged in specific wellness classes. Cathy Schempp is an active participant of the Chapter wellness program, specifically in the aquatics class held at the Caldwell Community Center. She provides this account of her experience: The MS aquatics program that my friends and I attend provides us with physical exercise as well as social interaction. The program
MS connection: fall 2012 is run by a qualified instructor. Each one hour session focuses on aerobic exercise, stretching, strengthening, flexibility and balance. The benefit of doing exercises in the pool is that it allows us to work out, increase our heart rates and still remain cool. The participants all have varying degrees of disability, and you don’t even need to be a great swimmer! We are a happy, upbeat group and look forward to each class not just to exercise, but to be with our friends; people we would never have met without this program. But, most important, we all agree that this exercise program has increased our overall strength and quality of life.
Kathleen of Keyport is impressed with the yoga class that she recently attended at Kershaw Commons in Freehold: About 4 months ago I stumbled upon information relating to Wellness Programs in Monmouth County for those with MS. Prior to that the most I really used the MS Society for was to pass along emails to my sister-inlaw who was diagnosed with Primary Progressive MS about 4+ years ago. Well, on the list of wellness activities was a yoga class at the Kershaw Commons facility in Freehold. The 16 week class had the most amazing instructor – Barbara! I took my sister-in-law to every class and can only hope that it will be offered again after the summer.
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nationalmssociety.org | 1-800-344-4867 Suzanne Kelly reported on her experiences at the twelve week wellness program at the Fitness and Wellness Center at CentraState Medical Center in Freehold. As reported in the publication of CentraState Health Care System, Healthy Directions, July/August 2012, Suzanne credits her instructor Diane for the improvement she has recognized in her own abilities and praises the importance of wellness: Four years ago, I attended the 12 week program for MS. This year I’m taking the graduate class for strength and balance and also the stationary bike riding class. When I began the 12 week classes, I was only a few weeks out of my wheelchair. Soon, I was able to walk using a walker. Presently, I use a cane and I don’t always need it… the credit is due to Diane’s classes.
other comments about centrastate wellness center include: g
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Absolutely wonderful! The classes, the schedule, but most of all it’s the people that make the MS 12 Week Program so beneficial! My life is forever changed. Thank you. They say knowledge is power. Maybe that is why I feel so strong and powerful. The lectures and exercise classes are the best! I would recommend this program to anyone who has MS.
Wellness at the Kessler Institute for Rehabilitation in West Orange/Saddle Brook offers two unique programs for people with MS who are interested in wellness and cognition. The programs focus on creating a greater awareness and understanding of the many changes and challenges that individuals with MS may experience and empowering persons
to gain a greater quality of living through education, support and experiential activities.
typical comments from particpants include: g
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It allowed me to understand the wide range of choices [available to me] about how to tackle the disease. My quality of life has changed. I love it! It was a spiritual connection of mind, body, and soul based on facts… I now have tools for understanding my process of healing.” g
wellness programs The Chapter continues to offer its unique wellness programs throughout the service area. A schedule of classes can be found on the Chapter website at www.nationalMSsociety.org/NJM; click on the link to the left for Programs and Services; click on the link to Wellness. You may also call the Chapter at 1-800344-4867 and ask about Wellness classes. There is something for everyone!
10 National Scholarship Program MS shouldn’t stand in the way of an education. This is why the National MS Society’s scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS, achieve their dreams of going to college. The Society established its scholarship program in 2003 and the program continues to grow both in terms of support and scholarships awarded. In its first year of operation the program awarded 36 scholarships for a total of $68,000; in 2011 more than $1 million was awarded to more than 500 scholars. Support for the scholarship program comes from foundations, chapter donors, our own employee giving program and other sources.
2013 Scholarships Scholarship applications for 2013 awards will be available in October 2012; the deadline is mid-January. Starting in October you can find information on how to apply by going to the National MS Society website: w w w. n a t i o n a l M S s o c i e t y. o r g / scholarship. Please note that the Chapter has an
MS connection: fall 2012 additional Scholarship program, addressing the needs of students beyond their first year of college. You can get more information from the Chapter website at www.nationalMSsociety. org/NJM or call the Chapter at 1-800-3444867. g
kiss ms goodbye
The New Jersey Metro Chapter is selling an exclusive lipstick and lip gloss in beautiful tones of MS ORANGE in an effort to raise funds for programs and services that address the challenges of all those affected by MS. Lip Toxyl Rouge Lipstick in Coral Charm merges plumping, advanced agedefying and moisturizing benefits with rich, lush color in a single sweep application. This breakthrough lipstick is fortified with our exclusive Collagen Tripeptide Complex, an anti-aging powerhouse that stimulates collagen production to help reduce the visible signs of aging. It instantly re-hydrates lips for a plumper, smoother, fuller appearance. Liquid Luster Lip Gloss in Tempest is an intense shine lip lacquer that plumps up the volume to create sensuous and seriously sexy lips. It instantly refines and reshapes the contour of your lips. To find out more, please contact Allison Cerco at 732-508-4423 or by email at allison.cerco@nmss.org.
nationalmssociety.org | 1-800-344-4867
Long Time Board Member Appointed Judge by Governor Chris Christie
Nick Ruggiero, long time Board Member of the New Jersey Metro Chapter was recently appointed as a judge to the New Jersey Workers Compensation Court. He is pictured above at his swearing-in ceremony on July 10th with fellow Board Members Kelly Waters and Bill Davidson to his right and Tim Barnes to his left. A partnership among government, industry and labor, the New Jersey Division of Workers’ Compensation seeks to establish an equitable balance between the needs of injured workers and the needs of employers. With a commitment to the highest standards
11 of professionalism, the mission of this court is to ensure that proper benefits are paid to workers who are injured on the job in addition to enforcing the law requiring employers to obtain insurance coverage for their employees. Nick thanks Governor Christie, Senator Bucco, Senator Pennacchio and their respective staffs for nominating and appointing him to a State Judgeship. Nick says, “They looked beyond my disability to recognize my legal accomplishments.” He goes on to say, “Moreover, I thank the National Multiple Sclerosis Society for being in my corner since my diagnosis in 1990. They have supported me in completing law school, in the birth of my two children (Nicole and Luke), in my efforts to argue successfully three times before the New Jersey Supreme Court and now this appointment by the Governor. My message to all with MS: the world is your oyster, just keep trying and keep a positive attitude.” g
Children, volunteers and staff enjoying a group moment at Kids Camp in July. The Chapter is grateful to Doctor T-Shirt for his generous donation of t-shirts for all the campers!
12 Close to 1,000 Get Down and Dirty for Multiple Sclerosis
MS connection: fall 2012
Overcoming MS One Obstacle at a Time at Muck Ruckus MS On Saturday, August 18th, over 1,000 muck seeking participants leaped head first into the filth in pursuit of a world free of multiple sclerosis (MS) at the first MuckRuckus MS Northeast event benefitting the National MS Society.
This regional event, which was held in New Jersey at Essex County South Mountain Reservation in West Orange NJ, was the filthiest, messiest, dirtiest experience one could have playing in the mud. The 5 mile mucky obstacle course challenged the most experienced athlete as well as the fun loving adventure seeker as they slipped and sloshed through the mucky mess to finish the course. MuckRuckus MS is an extraordinary event that is helping to push forward toward a world free of MS.
friends, family, and donors cheered on participants as they overcame obstacle after obstacle for ms.
our very mucky board chair, mike gibney
The Essex County South Mountain Reservation was transformed into muck filled obstacle course for the MuckRuckus MS event.
nationalmssociety.org | 1-800-344-4867
Participants got mucky while crossing creeks, climbing ropes, and swinging over muck pits. They were covered head to toe in muck by the end of the day as they fought dirty against MS. The Muck Ruckus MS event is designed to push the everyday runner to the extreme. Friends, family, and donors cheered on participants as they overcame obstacle after obstacle for MS. Even the little ones, ages 4 to 11, got a chance to get mucky and embrace the spirit of MuckRuckus MS at the kids zone area. This event raised more than $300,000 for programs and services for those affected by MS and to help support critical MS research programs. g
13 this event would not have been possible without the support of our Sponsors:
14 9th Annual Women on the Move Luncheon
The New Jersey Metro Chapter of the National Multiple Sclerosis Society will hold its 9th annual Women on the Move Luncheon on Friday, November 9, 2012 at the Westmount Country Club in Woodland Park, New
chris wragge, anchor on cbs news, event ambassador and emcee for the event
Jersey from 11:30 a.m. to 2:30 p.m. The MS Women on the Move Luncheon is a unique fundraising experience that creates an inspiring, motivational and empowering environment. The event creates a social environment for likeminded people to gather, learn about multiple sclerosis, and raise funds for local programs
MS connection: fall 2012 and services, as well as accelerate the national research effort. Kelly Waters, Esq. a lawyer and partner with Coughlin Duffy LLP, will be this year’s luncheon honoree. She is being recognized for her continued support and advocacy on behalf of the MS community, as well as her hands on involvement with fundraising activities. Chris Wragge, anchor on CBS News, is the event Ambassador and emcee for the event. This year’s special guest speaker will be Ashley Kumlien, founder of MS Run the US, Inc. Guests will be treated to a gourmet lunch and fashion show with fashions provided by the LOFT at the Paramus Park Mall. One of the highlights of the afternoon will be the Designer Handbag Silent Auction and fabulous basket raffle. Event partners who have joined our mission and are committed to the success of the luncheon are Adora Bella Salon, Capri Institute, Elite Rhythms Entertainment & Atlas Floral Decorators Inc. The individual ticket price for the luncheon event is $150. Each attendee will receive an event gift bag valued at over $200. For more information on tickets, ad journal or table sponsorship levels, please contact Brian Hurwitz at (201) 967-5599 x43208 or visit www.nationalMSsociety.org/NJM. Ad journal opportunities are also available. The Society’s mission is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. The Women on the Move Luncheon series in northern New Jersey has been attended by approximately 300-400 women each year. These women are business
nationalmssociety.org | 1-800-344-4867
15 10,000 people with MS serviced by the Chapter are women. A primary goal of the luncheon is to reach out to active business professionals and community leaders to educate and motivate them to make MS one of the charities they support on an on-going basis. The Women on the Move Luncheon event offers a unique and targeted avenue to reach a group of wellconnected professionals and community leaders. It provides a way for individuals and corporations to be involved in a nationally branded, highly visible campaign, while allowing clients and employees an opportunity for social interaction and networking. g
kelly waters, esq, 2012 women on the move luncheon honoree professionals and executives who work for major New Jersey companies, law offices, and self owned businesses, as well as clients with MS or caregivers to those that have MS. These women are community leaders who want to share and give back to the region where they live. While the event was founded by women who wanted to come together in bringing us closer to a world free of MS, we also invite and encourage men to attend and participate. Two thirds of people living with MS are women, and women often are care providers. The MS Women on the Move Luncheon creates an opportunity to empower each other to create a better future for those living with MS. We also recognize the importance of male caregivers and supporters to the women in their lives. In the greater New Jersey area, 75% of the
special guest speaker ashley kumlien, founder of ms run the us, inc.
free matter for the blind or handicapped
New Jersey Metro Chapter 1 Kalisa Way, Suite 205 Paramus, NJ 07652
walk ms save the date, sunday april 14, 2013 We are happy to offer participants twelve unique walk site locations to choose from. Participants can stroll along the boardwalk overlooking the beautiful Atlantic Ocean or the New York City skyline. Walk the streets of a quaint town or around a lovely park. The 2013 Walk MS will be held on Sunday, April 14th. Registration begins at 9:00AM and we walk at 10:00AM. We will walk rain or shine!
Walkers enjoying the 2012 event at our Ridgefield Park location.
We offer accessible route options at all of our Walk MS site locations. All routes include at least 1 rest stop with refreshments and snacks. Registration will be open in November. Log onto walknjm.nationalmssociety.org for site locations and more detailsn
Taking in the sun and surf at the 2012 Walk MS.