Spring 2012 MS Connection
The New Jersey Metro Chapter's free quarterly newsletter, the MS Connection, includes information about current research, coping strategies, symptom management, local educational and fundraising events, and community resources.
MOVING TOWARD A WORLD FREE OF MS Spring 2012 New Jersey Metro Chapter Join in the FUNdraising! Fundraising tips on page 17 INSIDE THIS ISSUE: Production of this newsletter is generously supported by: Society Workshops Page 4 The Dirt on Gardening Page 6 Walk MS Page 18 Summer Golf Classic Page 20 Publication of the National MS Society 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 Treasurer Executive Vice President of Development Michael D. Gibney Joe Welter Secretary Michael Pawelczak Jim Roberts Karen Drzik Vice President of Programs & Services Nancy Chazen Vice President of Development Jennifer Hivry Vice President of Finance Production of this newsletter is generously supported by: Gwen Leach Vice President of Operations Marianne Maddocks Newsletter Editor: Christine Burri The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. 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 National Multiple Sclerosis Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn’t. © 2012 National Multiple Sclerosis Society, New Jersey Metro Chapter 2 | JOIN THE MOVEMENT: nationalMSsociety.org LETTER FROM THE CHAIR Dear Friends, A s we enter into the Chapter’s second half of our fiscal year and the weather turns conducive to outside activities, we have a full calendar of events to look forward to! On April 15th, we hold the biggest event of the year in terms of number of participants, Walk MS. At 12 different sites throughout the Garden State, walkers will be blanketing the streets raising both awareness and money for Multiple Sclerosis. On May 19th and 20th, we hold the first of three MS Bike Tours, the two-day Coast the Coast Ride, which covers roads from Long Branch to Cape May. If a rider participates in the two-day event, they will ride almost 175 miles! Also in May, on Monday the 14th, we are excited about Forks & Corks: A Culinary Experience. This exciting event, with Host Chef Chris Siversen, will include some of New Jersey’s most popular restaurants preparing delicious food alongside unique wine and cocktail pairings. It is held at Maritime Parc in Liberty State Park in Jersey City, overlooking the downtown New York City skyline, which includes the stunning new Freedom Tower. If you would like to learn more about the events, details can be found at the Chapter’s web site, www.nationalMSsociety.org/NJM. We hope to see many of you at one, or all, of these events either as a participant or just cheering on the walkers, cyclists, or eaters! Mike Gibney Board Chair and Bike MS Cyclist CHAPTER SELF HELP GROUPS OFFER EXCITING PROGRAMS MS CENTERS IN NJ The National MS Society, NJ Metro Chapter and the MS Centers in NJ have collaborative relationships that enhance the services that are The Chapter has more than 30 self-help groups in provided to people and their families who live its service area. The groups offer individuals with a diagnosis of MS. The MS Centers provide opportunities to meet others who have similar life clinical care and medical expertise while the experiences; to share ideas; to learn from each other; Chapter complements that care by offering a to learn from invited speakers. Everyone is welcome. variety of educational and support services. To see a monthly calendar of events, view the Chap- The five MS Centers are listed below: ter website at www.nationalMSsociety.org/NJM Bergen County click on the link for Programs and Services then click The MS Comprehensive Care Center on Self-Help groups. You may also call the Chapter at Holy Name Hospital at 1-800-344-4867 and ask about self-help groups. 718 Teaneck Road, Teaneck, NJ 201-837-0727 Essex County MS Comprehensive Care Center at You can still register for Spring-Summer Classes! St. Barnabas Ambulatory Care Center 200 South Orange Ave., Livingston, NJ The Chapter continues to offer its unique 973-322-7484 wellness program throughout the service area. The MS Diagnostic and Treatment Center A Chapter booklet is now available describing at UMDNJ 90 Bergen St., Suite 8100, Newark, NJ the classes. Additional community programs are 973-972-2550 also described in the booklet, including the MS-specific programs at Kessler Rehabilitation Middlesex County in West Orange and the Linda E. Cardinale Robert Wood Johnson Center for MS Clinical Academic Building- 6th Floor MS Center (CentraState) in Freehold. You can 125 Paterson St., New Brunswick, NJ view the booklet at the Chapter website at 732-235-7733 www.nationalMSsociety.org/NJM; click on the link to the left for Programs and Services; click on Monmouth County the link to Wellness. You may also call the Chapter The Linda E. Cardinale MS Center at CentraState Hospital at 1-800-344-4867 and ask about Wellness Star and Barry Tobias Ambulatory Campus classes. There is something for everyone! 901 Main St., Freehold, NJ 732-294-2505 Para obtener información en español sobre la esclerosis múltiple, visite el siguiente sitio web: http://www.nationalmssociety.org/ informacion-en-espanol/index.aspx WELLNESS PROGRAMS TOLL FREE NUMBER 1 800 344 4867 | 3 NEWLY DIAGNOSED SOCIETY WORKSHOPS A POINT OF CONNECTION BY HELEN RUSSON Nadja (middle), diagnosed in 2008 From the moment the doctor told me, “You have MS,” everything changed. I felt a wide range of emotions: relief (because I didn’t have a brain tumor), anger (although I wasn’t sure who to be angry at) and fear of the future. What was this disease, and how would it impact me and the people who were important to me? I had no idea what my new life would be like, or how to get started on it. Like many people, I first turned to research. This was in 1997, before the Internet was in full swing (at least at my house). So I went to the library, trying to learn about MS. I had heard about the National MS Society, but for days I was hesitant to call the number. Finally, I made the call, which led to my second-most important discovery of the year: my chapter was about to begin a series of inperson workshops for people who had just been diagnosed with MS. Each workshop featured a different guest speaker. On the first evening, a neurologist spoke in practical terms about the disease. 4 | JOIN THE MOVEMENT: nationalMSsociety.org Her presentation included a slideshow illustrating how white blood cells inexplicably start attacking the protective coating of the nerves (myelin sheaths). She had actually brought a ruptured electrical cord, exposing the frayed wires underneath. That simple prop was probably the most effective tool of my MS education. It helped me realize that if I’m having a hard time lifting my leg, it’s not because I’m lazy or weak-willed. It’s because of those well-meaning (but very misguided) white blood cells. Afterward, the neurologist answered our questions about the day-to-day realities of living with MS. She also talked about some ongoing clinical trial studies and invited us to learn more about them. (I ended up participating in several such studies, all of which were very rewarding.) Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge. JOIN THE MOVEMENT® Each workshop was similarly organized. A speaker would give a presentation and then answer questions. We An in-person workshop at the were introduced Central North Carolina Chapter to experts in medicine, mental health, yoga and nutrition. At some point each evening, we broke into small groups to discuss what we had learned. I remember that one of the most fun and empowering activities was learning how to get a good workout while sitting down. (Who knew?) Throughout these programs, chapter staff told us about their services and resources, which included numerous opportunities to volunteer. I soon started volunteering and I haven’t stopped yet! New frontiers Of course, things have changed since 1997. While many chapters continue to offer in-person workshops similar to what I experienced, they have also begun exploring additional ways to help people newly diagnosed with MS connect to the Society— and to each other. “Almost every home now has access to the Internet and that seems to be a primary source for information, especially for tech-savvy people,” noted Mary Roberts, associate vice president of the South Central Region. “So we are doing our research to find new and creative ways to reach people.” Teleconferencing, videoconferencing and webcasts are a few options. “We plan to have a program in one site and broadcast that program to other sites across our region,” said Roberts. Some chapters are also trying out new formats for workshops, such as offering quarterly workshops with a nurse, or teaming up with an area MS center or university to provide workshops led by doctors. Peer support programs are another way to connect. Anyone newly diagnosed can call 1-866-673-7436 to have a confidential telephone conversation with a peer with MS through the Society’s MSFriends program. Or they can visit www.nationalMSsociety.org/ onlinepeerconnections to search through online profiles of trained peer support volunteers. Once matched, participants can connect confidentially and one-on-one via telephone or email. To discover the full spectrum of resources that the Society offers, call us or 1-800-344-4867 to be connected to an MS Navigator®. MS is not a virtual disease, and the computer isn’t a substitute for personal connection, but we are working to combine the best of both worlds, looking for ways to embrace the information age and to continue to provide the healing power of human contact. Helen Russon is a volunteer at the Oregon chapter. TOLL FREE NUMBER 1 800 344 4867 | 5 LIVING WITH MS THE DIRT ON ADAPTIVE GARDENING Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out. A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says. Staci, diagnosed in 1985 Gardening is one of the most popular hobbies in the United States, one that can benefit people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension office of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window ledge or tabletop you can roll up to.” 6 | JOIN THE MOVEMENT: nationalMSsociety.org Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.” It also features an A-frame trellis called a “cattle panel” that vines, squash and cucumbers grow on. “Someone in a wheelchair can roll under it and reach right up and pick fruits and vegetables,” says Leonard, who was diagnosed with MS in 1997. Leonard’s been gardening for seven or eight years, starting with flowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.” Get prepared Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle filled with cool water. (Call 1-800344-4867 for information about cooling resources or visit www.msassociation.org/programs/ cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www.abledata.com and search for “garden tools” to get an idea of what’s available. Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits— literally—of your labors! You can learn more about gardening from your county’s Cooperative Extension Office; they are found in all 21 New Jersey counties and are the result of a partnership between Rutgers Cooperative Extension, County Boards of Chosen Freeholders, and the U.S. Department of Agriculture. These offices in NJ are your first stop for all kinds of information and assistance regarding 4-H, agriculture, family and community health sciences, marine science, and natural resources and the environment. Please visit or contact your county office with any questions you may have; learn more at this website: http://njaes.rutgers.edu/county/ LOOKING TO GET INVOLVED? Become a volunteer for the New Jersey Metro Chapter. Volunteer opportunities include: Event Volunteers: Assist in all aspects of our Walk MS, Bike MS, and MuckRuckus MS events. This may include check-in, rest stop, finish line, lunch, route marking and sign removal. You could also volunteer services which include the following: face painters, DJs, clowns, caricaturists, comedians, photographers, massage therapists, etc. Office Volunteers: We are in need of volunteers to assist with various tasks including administrative work and mass mailings in our Paramus and Oakhurst offices. Health Fair Committee: Becoming a part of the Health Fair Committee is a wonderful opportunity to educate the public about MS and to spread the word about all that the Chapter has to offer. Interns: The Paramus and Oakhurst offices are continuously seeking Interns to assist with events, as well as our programs and services for our friends living with MS and their families. Positions are available for the all semesters. For more information, please contact Lauren Pisaniello, Volunteer Manager, at 732-660-1005, x44323 or firstname.lastname@example.org TOLL FREE NUMBER 1 800 344 4867 | 7 NEWS ONLINE PEER SUPPORT Do you currently volunteer with us in a peer support program, or would you like to learn how to do so? Are you interested in participating in a new nationwide peer support program? If yes, read on … The Society’s Online Peer Connections program is currently seeking people with MS or family members of people with MS who are interested in becoming peer support volunteers. As a volunteer, your profile would be included in an online database, searchable by demographics such as age or mobility status. Once a person with MS selects you as their peer support person, you would then arrange to speak one-on-one either via email or telephone on an agreed-upon topic. All conversations are confidential. BLOG OPENS DOORS FOR MS COMMUNITY Join in the conversation at blog.nationalMSsociety.org. GRANT FUNDING SOUGHT: Society blogger Nicole Lemelle Fatigue, isolation, doctor’s visits—and yes, sex with MS—are just a few of the topics covered in the Society’s new blog at blog. nationalMSsociety.org. Not much is off-limits to Society bloggers and commenters. Instead, people with MS and MS specialists dig The program begins this March. into very personal issues—and Visit www.nationalMSsociety. universal ones. “In these cyber org/onlinepeerconnections, or pages, we intend to open up contact Monica Aden, Online the doors which have long Peer Connections program been closed (by society, by our coordinator, at 1-303-6986100, x15169, Monica.Aden@ families and—quite frankly— by many of us living with MS) nmss.org to learn more. to discussion,” wrote blogger Trevis Gleason on January 4. “To that end, I’d like to take this opportunity to ask you—the 8 | readers of The Unspeakable Bits —what topics you think are under discussed if not just plain ignored by the MS ‘authorities’ out there?” JOIN THE MOVEMENT: nationalMSsociety.org Do you know of a private corporation or foundation that donates to organizations like the National MS Society? If so, please contact Linda Rossi at 732-660-1005, x44315 or linda. email@example.com. Café con Leche Invitamos a las personas hispanas/latinas con esclerosis múltiple a participar una vez al mes en un grupo telefónico gratis totalmente en español. Para más información o para inscribirse llame al 1-800-344-4867, opción 3. (Hispanic /Latino people with MS can participate by phone in a free monthly Spanish-language support group. For more information, call 1-800-344-4867 and press 3.) ADVOCACY KEEPING UP WITH HEALTH REFORM BY KIMBERLY CALDER With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that specifically affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www.MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy. MS ACTIVISTS HELP ADD MS TO COMPASSIONATE ALLOWANCES LIST Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly. TOLL FREE NUMBER 1 800 344 4867 | 9 RESEARCH SURVEY SAYS WALKING ISSUES IMPORTANT TO ADDRESS Susan Cohn-Child, diagnosed in 1995, walks with son Zach Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking. Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury. While 65% of those surveyed reported walking difficulties or trouble with balance, 40% “rarely or never” discussed the issues with their doctor. “Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for Health Care Delivery and Policy Research at the Society. 10 | JOIN THE MOVEMENT: nationalMSsociety.org RESULTS IN FOR POTENTIAL MS THERAPIES • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review. • A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of participants in each group who experienced events defined as treatment failure. Teriflunomide is thought to prevent damage to the nervous system by immune cells. A previous phase III trial was more successful and three others are ongoing. The FDA is reviewing an application for marketing approval of teriflunomide. To stay current on MS therapies in the pipeline for FDA approval, sign up for MS eNEWS at www.nationalMSsociety.org/signup. NEWS WELLNESS AT KESSLER Kessler Institute for Rehabilitation’s MS Wellness Program in West Orange is now entering its 5th year! The MS Wellness Program is a 10 week program that encompasses the Living with MS Support Group Series and Wellness Seminars. Recent data from the program shows that participants have reported a decrease in depressive and anxiety symptoms and overall improved well being. The program focuses on creating a greater awareness and understanding of the many changes that individuals with MS might experience and empowering persons to effectively increase quality of living through education, support and experiential activities. If you are interested in participating in this program, please contact the Neuropsychology Department at Kessler Institute for Rehabilitation at 973-324-3624. NEW JERSEY’S LARGEST HEALTH SYSTEM ADOPTS NEW NAME Saint Barnabas Health Care System is Now “Barnabas Health” Saint Barnabas Health Care System, New Jersey’s largest health care provider, announces it has changed its name to “Barnabas Health.” On June 20, 2011, the Saint Barnabas Health Care Board of Trustees unanimously voted to change the organization’s name. The MS Center on that campus is now referred to as MS Comprehensive Care Center at the Barnabas Health Ambulatory Care Center. MS WELLNESS AT CENTRASTATE The MS Wellness Program at the Linda E. Cardinale MS Center at CentraState Medical Center is designed to optimize the quality of life for those living with the challenges of MS. The next series of classes begins May 17. There are also a variety of ‘graduate’ classes (for anyone that has completed the 12 week wellness class): • • • • • Stretching and Balance Class – Wednesdays from 12:30 - 1:30pm Tai-Chi - Thursdays from 1 pm- 2pm Stretching and Balance Class (advanced) 2 pm - 3pm Aquatic classes begin on March 6th. The class will run for six consecutive Tuesdays. Registration is required. The fee for the six classes is $20.00 Adult Scuba classes will soon be announced. To learn more about these programs and future classes, contact Ruth Memoli CSW, MS Wellness Coordinator at 732 637-6334 or firstname.lastname@example.org. TOLL FREE NUMBER 1 800 344 4867 | 11 NEWS NEW JERSEY GOVERNOR SIGNS MS TASK FORCE BILL A bill sponsored by Senator Fred Madden (D-Washington Township) that would establish the New Jersey Multiple Sclerosis Task Force within the Department of Health and Senior Services (DHSS) was signed into law in January 2012. This legislation will establish a 14-member committee, made up health officials, representatives of the Society, and people living with MS, to develop strategies and provide recommendations that will improve the lives of people living with MS in New Jersey. This is a great victory for the New Jersey Metro and the Greater Delaware Valley chapters of the National Multiple Sclerosis Society. These chapters have worked diligently with MS activists to push forward this legislation to address the unmet needs of people with MS in New Jersey. Go to http://www.politickernj.com/53674/ madden-bill-creating-nj-multiple-sclerosistask-force-signed-law to read the full story. 12 | JOIN THE MOVEMENT: nationalMSsociety.org JOB READINESS TRAINING PROGRAM T he Chapter will host a job readiness program for clients who are looking for employment and who qualify under the grant. The program will consist of 9 sessions during the months of April and May and will include workshops on: Interest Testing, Development of Transferable Skills, Knowing Your Rights, Developing a Job Search Plan, Resume Clinics, Interview Clinics, and a Mock Interview Day. Workshops will be led by professionals in the world of employment. The sessions will all be held at CentraState Medical Center, Star & Barry Tobias Ambulatory Care Center Conference Center. Thanks to the Peter Jay Sharp Foundation for awarding the Chapter the funds to be able to offer this most comprehensive look at the employment scene. For more information, contact Pat Evertz, Director of Services, at 201-967-5599, x43205 or email@example.com. DOES YOUR BANK DONATE TO CHARITY? S ome banks have an affinity program where you can link your checking/savings account to a charity. For example, TD Bank provides an annual contribution based on the average balance in all membersâ€™ accounts. Checking, Savings, Money Market, CD and IRA accounts are all included in the program. You can learn more about the TD Bank program from their website: http://www.tdbank. com/affinity/. Speak with a representative from your bank to learn how they may contribute to the NJ Metro Chapter! PROGRAMS TWO RESIDENTIAL COMMUNITIES TAKE ADVANTAGE OF CURRENT TECHNOLOGY! W hat is the shared experience of the residents of Kershaw Commons in Freehold, NJ and Kingsley Commons in Minneapolis, Minnesota? These two residential communities for people with disabilities that require MS related services held their firstever Skype session in January! Skype, for the uninitiated, is an exciting multi-media technology which essentially combines a phone call and live video, allowing participants to see and hear their interactions, not just conversations. Kershaw Commons resident, Barbara O’Reilly, shares this account of the exciting experience that is leading to many new relationships: On the NJ side, the session was coordinated by Chapter staff and Dennis Huntley, a volunteer and Information Technology (IT) expert. In Minnesota, the call was coordinated by the local Chapter staff in collaboration with the President of the Kingsley Commons Resident Association, David Chaikin. Participants in the Skype session included residents from both residential developments. The developer of Kershaw Commons, Ken Regan joined the call. Ken visited Kingsley before building Kershaw; he said he viewed Kingsley as a prototype for Kershaw. He learned what the Kingsley residents wanted in an accessible building, among other things, they unanimously said automatic doors. The Kershaw Commons residents thanked the Kingsley folk for that wonderful suggestion! “We’re very grateful they made that recommendation,” said Scott Schroeder of Kershaw. “When I first moved in, I thought that was the best part.” The participants of the call noted some differences and similarities in their buildings. They appreciated the Skype call that gave them this wonderful opportunity to share ideas, struggles and successes. Some of the call participants commented; “It was very interesting,” said Lynn Ackerman of Kershaw. “I liked hearing about their building and how the residents really enjoy living there.” Mr. Chaikin, who said their residents also enjoyed the Skype interaction, proposed the two communities do more “Skype –ing” on an occasional basis, maybe every quarter. Everyone in both states agreed and looks forward to continued communication. Barbara O’Reilly is a writer who lives at Kershaw Commons, Freehold, NJ. Her first book, Grace Under Pressure, about women and the church, will be out shortly. TOLL FREE NUMBER 1 800 344 4867 | 13 PROGRAMS SWIM IN – REGISTRATION TAKING PLACE NOW! W ater activity is beneficial for people who have MS. Since 1976 Swim-In has provided a free, once-a-week recreational swimming program where people with MS have an opportunity for therapeutic exercise. The emotional and psychological benefits of Swim-In are equally valuable. This program is supervised by licensed physical therapists, who, as well as all of the other members of the group, are volunteers. Volunteers help the swimmers dress and undress; they push the wheel-chairs and are “buddies” in the pool. The program takes place at the Jewish Community Center on the Palisades in Tenafly. This community-based project is co-sponsored and funded by the National Multiple Sclerosis Society, NJ Metro Chapter in collaboration with the Bergen County Section of National Council of Jewish Women. To learn more about becoming a swimmer or a volunteer, please contact Lisa Gordon at the Chapter at 201-967-5599, x43218 or firstname.lastname@example.org. You can also read more about Swim-In from this link on the Chapter website: http://www.nationalmssociety.org/ chapters/njm/programs--services/wellness/ swim-in/index.aspx. FUN DAYS AT MONMOUTH PARK RACETRACK! June 2 and 3 Fun Days is one of the Chapter’s most popular programs – music, prizes, face painting, pony rides, and lots and lots of fun! People come back year after year looking to meet up with old friends and to make new friends. Save the date! When: Saturday, June 2 and Sunday, June 3 11:30 am-3:30 pm Where: Monmouth Park Racetrack, Oceanport, NJ Registration is required and is first come first served. Watch your mail for the brochure. For more information or questions, please contact Allison Cerco at the Chapter at 1-800-344-4867 or Allison.email@example.com. MS YOUTH MOVEMENT M embers consist of teens who have MS or who are affected by MS through means of a family member or friend. Other youth looking to make a difference in their community are also welcome. This is an opportunity to connect with other youth in the movement to create a world free of MS. Become a member! Find us on Facebook and follow us on Twitter @MSYouthMovement or email us at firstname.lastname@example.org Check out our blog: msyouthmovement.blogspot.com 14 | JOIN THE MOVEMENT: nationalMSsociety.org RESEARCH KIDS CAMP WEEKEND! P arents get ready, children get ready! It’s that time of year again! Our 17th Annual Kids Camp Weekend will be held July 27 – July 29, 2012 at Refreshing Mountain Camp in Stevens, PA. Kids Camp is specifically designed for children who have a parent living with MS. The National MS Society is pleased to extend an invitation to children between the ages of 7-15 who may be interested in attending. It’s a wonderful opportunity for children to make new friends from other chapters. The cost is $25 per child for the weekend. This funfilled weekend will include swimming, zip lines, nature activities, sports and much more! So don’t be shy, come and join us…you don’t want to miss it!!! If you have any questions about this weekend or how to receive an application, please call Lauren Pisaniello at the Chapter Office at 732-660-1005, x44323 or Lauren.email@example.com. Completed applications are due back by June 18, 2012. SAVE THE DATE! FORKS & CORKS: A CULINARY EXPERIENCE Monday, May 14, 2012 - Maritime Parc 84 Audrey Zapp Drive, Liberty State Park, Jersey City, NJ 07305 This exciting new culinary event with Host Chef Chris Siversen, will include some of New Jersey’s most popular restaurants preparing delicious bites alongside unique wine and cocktail pairings. Please visit the Chapter website for more information www.nationalMSsociety.org/NJM or contact Christine Burri, Logistics Manager, at 201-967-5599, x43212 or firstname.lastname@example.org. TOLL FREE NUMBER 1 800 344 4867 | 15 FUNDRAISING DO-IT-YOURSELF FUNDRAISING GETS BOOST A designer in East Rutherford hosts a Fashion Show on behalf of the National MS Society. A dance instructor in Dover sponsors an annual Dance-A-Thon to raise awareness and stay in shape. A restaurant owner living with MS in Belmar hosts a Dine-In night to raise money for a cause that hits close to home. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition. Diverse as they are, these events are all Do-ItYourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society. These resources include a toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, Teaneck Fairleigh Dickenson University Walk-A-Thon 16 | JOIN THE MOVEMENT: nationalMSsociety.org finding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. The toolkit also includes flyers, badges and email signature images to download. These tools allow organizers to easily and quickly reach out to friends, family members and co-workers. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.” “This is a great tool for anyone who doesn’t participate in our core Walk MS, Bike MS, and MuckRuckus MS Events” says Lisa DiBenedetto, Manager of Teams and DIY Liaison at the New Jersey Metro Chapter. “If you have a great passion in your life and an even greater passion to do more for the cause, this Strong Man Competition tool is the perfect option for you.” For more information about Do-It-Yourself Fundraising, visit the online tool at www.doityourselfms.org PUT THE FUN IN YOUR FUNDRAISING! L et the Teams Department help you put the FUN in your FUNdraising! Here are some ideas on how to make some additional money for your team: KISS MS GOODBYE! T he New Jersey Metro Chapter is selling an exclusive lipstick and lip gloss in beautiful tones of the energizing signature shade of MS ORANGE in an effort to raise funds for programs and services that address the challenges of all those affected by MS. LipToxyl® Rouge Lipstick in Coral Charm merges • Contact a restaurant in your area (TGIFridays, plumping, advanced age-defying and moisturizing Applebees, Cheeseburger In Paradise, Atlanta benefits with rich, lush color Bread Company, to name a few) and see if you in a single sweep application. could host a “Dine-In” where a percentage of each This breakthrough lipstick is check gets donated to your team. fortified with our exclusive • Go to your favorite local establishment and ask if Collagen Tripeptide Complex, they would sell Walk MS and Bike MS pin-ups. The an anti-aging powerhouse that money raised from the sales will go to your teams stimulates collagen production total. Pin-ups are available at your local chapter to help reduce visible signs of aging. It instantly office. re-hydrates lips for a plumper, smoother, fuller • Ask your employer about hosting a “Dress Down appearance. Day.” Interested employees can pledge $10 or $20 Liquid Luster Lip Gloss in for the privilege of dressing down. Dress down can Tempest is an intense shine lip include jeans day, orange day, etc. lacquer that plumps up the Where does the income go? Services & Programs – 44% Fundraising – 15% Research – 14% National Programs – 11% Benefit to Donor – 11% Administration– 5% volume to create sensuous and seriously sexy lips. It instantly refines and reshapes the contour of your lips. You can help our cause and make the world free of MS by purchasing either or both of the following: LipToxyl Rouge Lipstick in Coral Charm for $21 or Liquid Luster Lip Gloss in Tempest for $20 (S&H cost is $2 each) For each lipstick or lip gloss sold, 75% of the proceeds will go to the New Jersey Metro Chapter. To make a purchase you can contact Linda A. Rossi, by phone at 732-660-1005, x44315 or by email at email@example.com TOLL FREE NUMBER 1 800 344 4867 | 17 WALKMS 24TH ANNUAL WALK MS WALK TOWARDS A WORLD FREE OF MS! SUNDAY, APRIL 15TH Save the date! The New Jersey Metro Chapter will be hosting its 24th annual Walk MS on Sunday, April 15th and we invite you, your family, friends, neighbors and co-workers to join the movement. You can choose to walk in one of 12 unique and very special locations in Northern or Central New Jersey. Sites include a lovely and tranquil park setting, an outstanding view of the New York skyline, or an ocean view along the boardwalk on the Jersey Shore. Each distinctive walk site has something for everyone, including rest stops that are fully-stocked with water and snacks and lunch at the end! Cano Family & Friends Team 18 | JOIN THE MOVEMENT: nationalMSsociety.org Throughout the country, over 600 walks will be taking place in 2012. The New Jersey Metro Chapter walk locations are as follows: North Jersey • Bergen County - The New Overpeck County Park • Cranford - Nomahegan Park • Jersey City - Liberty State Park • Roseland - Mack Cali • Roxbury - Horseshoe Lake Park For more information or questions on these walk locations, or for sponsorship opportunities, contact Jennifer Hivry, Vice President of Development, at firstname.lastname@example.org. For information on forming a team or if you are currently a team captain, contact: Alexis Stone, Director of Teams and Corporate Development at email@example.com or Lisa DiBenedetto, Manager of Teams, at firstname.lastname@example.org. Or call our Paramus Office at 201-967-5599. Central Jersey • Belmar/Spring Lake - Bar Anticipation • Flemington - Liberty Village Premium Outlets • Freehold - CentraState Medical Center/Health & Fitness Center • Hamilton - Steinert High School • North Brunswick - Parsons School at Babbage Park • Sandy Hook - Gateway National Park-Area E • Seaside Heights/Seaside Park -Tri Boro First Aid Squad to walk the entire route; you can walk whatever length you wish. Each individual walker who raises $125 or more will receive an event t-shirt the day of the walk. Raise $250 or more and you will be eligible for some wonderful prizes. To learn more and to register yourself or your team, visit walknjm.nationalMSsociety.org. Once registered, you will have access to an online personal fundraising page where friends and family can visit and donate. You will also find information about forming a team, fundraising tips and ideas, directions to each walk location, a listing of the prize incentives, as well as forms you can download. And, be sure to visit our Facebook page and become a fan! Join the movement! Get involved in a Walk MS event near you and help us to achieve our vision of creating a world free of MS! Register today! For more information or questions about these locations, or for sponsorship opportunities, contact Patricia Tupycia, Director, Walk MS & Corporate Relations at email@example.com. For information on forming a team or if you are currently a team captain, contact: Alexis Stone, Director of Teams and Corporate Development at alexis. firstname.lastname@example.org or Allison Story, Coordinator of Teams, at allison.Story@nmss.org. Or call our Oakhurst Office at 732-660-1005. Walk routes range from 4 miles to 6 miles, depending on the walk site that you choose and all include at least one rest stop with water, a snack and restroom facilities. You do not have Kelly Takasch, the Most Inspirational Walker in North Brunswick TOLL FREE NUMBER 1 800 344 4867 | 19 EVENTS PROGRAMS MS SUMMER GOLF CLASSIC MONDAY, JUNE 25TH G ather your friends, family and business col- Join with corporate teams from around the state for leagues for an exciting day of golf at one of a first-class day of golf, high-level networking, food, the top private country clubs in New Jersey! cocktails, raffles and more. Availability is limited. To ensure your participation today, please visit The New Jersey Metro Chapter will be hosting the our Chapter website for registration at MS Summer Golf Classic on June 25, 2012 at the Plainfield Country Club in Edison, NJ. Home to The www.nationalMSsociety.org/njm. Barclays 2011â€”Plainfield remains consistently top-ranked nationally in the U.S. by Golf Digest and Golfweek magazines. Challenging the gameâ€™s best players, the exquisite course was brought to life by famed architect Donald Ross and is widely regarded as one of his masterpieces. For nearly 100 years, Club members and guests have been enjoying this exclusive golf course and we invite you to share in that heritage and unique experience. 20 | JOIN THE MOVEMENT: nationalMSsociety.org All proceeds will benefit the New Jersey Metro Chapter helping drive critical research, programs and services moving us closer to a world free of MS. For more information, please contact Karen Drzik, Executive Vice President of Development, at 201-967-5599, x44316 or email@example.com. The National MS Society - New Jersey Metro Chapter Thanks New Jerseyâ€™s Business Leaders For attending the 2012 Address to the Business Community Sponsored By: TOLL FREE NUMBER 1 800 344 4867 | 21 2012 CALENDAR OF EVENTS WALK MS April 15, 2012 walknjm.nationalMSsociety.org SPRING GOLF May 7, 2012 www.nationalMSsociety.org/NJM FORKS & CORKS: A CULINARY EXPERIENCE May 14, 2012 www.nationalMSsociety.org/NJM COAST THE COAST May 19 & 20, 2012 bikenjm.nationalMSsociety.org SUMMER GOLF June 25, 2012 www.nationalMSsociety.org/NJM CHALLENGE WALK September 7-9, 2012 www.nationalMSsociety.org/NJM HOPS TO HOPS September 16, 2012 bikenjm.nationalMSsociety.org WOMEN ON THE MOVE LUNCHEON - CENTRAL NJ September 20, 2012 www.nationalMSsociety.org/NJM GREAT NEW JERSEY COUNTRY BIKE RIDE (25th Anniversary Ride) September 22 & 23, 2012 bikenjm.nationalMSsociety.org WOMEN ON THE MOVE LUNCHEON - NORTHERN NJ November 9, 2012 www.nationalMSsociety.org/NJM 22 | JOIN THE MOVEMENT: nationalMSsociety.org In Remembrance In Honor and Loving Memory Marine Cpl. Kevin James Reinhard Army Spc. Ronald H Wildrick, Jr. Army Sgt. John Lyons Army National Guard Staff Sgt. Jorge M. Oliveria Ida Barbera Joseph B. Grosch, Sr. Susan Corsie Bauer Catharine Rigby Helck Robert Baugh Marilyn Ann Henry Carol Becker Arnold “Arnie” Hivry Emory Berman Calvin Jacobson Stewart Budd Josephine Johnson Charles Burke Elizabeth R. Johnson Ann Carriero Elaine Kaplan Chris Cerruto Lynne Kohler Paul D. Dellaportas David Scott Lugo Theodore “Ted” Dembowski Lillian P. Manischewitz Marie Fox Dunn Mary McGovern Clara Figura Helen Nazzaretta Santa Fioravanti Giesla Nowak Herbert Freedman Jane Phillips Angela Gaetano Kevin M. Russell Stephen Gilbarg Lillian Segal Ruth Gordon Vinnie Sisto Marcella “Marcy” Gray Andrea Taddeo “There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief... and unspeakable love.” - Washington Irving If you have lost a loved one and would like their memory honored, please contact Marianne at firstname.lastname@example.org or call 732-660-1005 ext. 44313 TOLL FREE NUMBER 1 800 344 4867 | 23 FREE MATTER FOR THE BLIND OR HANDICAPPED New Jersey Metro Chapter 246 Monmouth Road Oakhurst, New Jersey 07755 Take a survey about the MS Connection, and let us know what you think about the publication. We need your input to help shape the newsletter for future issues! You can take the survey online at http://www.surveymonkey.com/s/R5MZCKZ. Thank you in advance for your help! National Multiple Sclerosis Society, New Jersey Metro Chapter We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Clip this convenient form and mail it with your check today! WE NEED YOUR HELP! One Year Membership New Jersey Metro Chapter 246 Monmouth Road Oakhurst, NJ 07755 o $1,000 (and over) BENEFACTOR o $500 SUBSCRIBING o $100 PATRON o COMPLIMENTARY (Person with MS unable to pay.) o $25 SUSTAINING o $20 GENERAL o OTHER Please Check: o Person with MS o Relative o Other Name _________________________________________________________________ Address ________________________________________________________________ City ____________________________________ State _________ Zip _____________