SUMMER 2012 NEW JERSEY METRO CHAPTER
MS CONNECTION NEWSLETTER
STUDENTS HELPING STUDENTS PAGE 16
INSIDE 6 THIS ISSUE:
CONNECTING THE DOTS: VITAMIN D AND MS
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KISS MS GOOD-BYE!
STAYING CONNECTED OVERSEAS
39TH ANNUAL SPRING GOLF CLASSIC
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MS CONNECTION: SUMMER 2012
JIM ROBERTS LETTER Friends, I hope this edition of MS Connection finds you all well and looking forward to the beautiful weather that the summer brings.
CONNECT WITH US ONLINE: New Jersey Metro Chapter www.nationalMSsociety.org/NJM Email: njminfo@nmss.org Like us: www.facebook.com/pages/ National-MultipleSclerosis-SocietyNew-Jersey-MetroChapter/117041902295 Follow us: @MSNJMetro Watch us: www.youtube.com/user/ NewJerseyMetro Production of this newsletter is generously supported by:
Of course, things here at the New Jersey Metro Chapter have already been heating up. The spring marks the beginning of our special events calendar and we welcomed over 11,000 walkers to our 12 Walk MS locations throughout New Jersey, over 200 golfers to the sold-out MS Spring Golf Classic at Ridgewood Country Club, nearly 1,700 cycling enthusiasts to our Bike MS Coast-the-Coast and 150 friends to our MS Forks & Corks event. Combined these events will raise $3.5 million and we thank all of our generous supporters. As of this writing, we have a number of great programs and events to look forward to this summer. Some of our upcoming programs include the always popular Fun Days at Monmouth Racetrack on June 2 and 3. Our educational teleconference calls continue, Boys Night Out at a Somerset Patriots game on June 28 and of course, many activities at our MS Centers throughout the state. The MS Summer Golf Classic at the exclusive Plainfield Country Club on June 25 and MuckRuckus MS Northeast on August 18 at Essex County South Mountain Reservation are two of the highlights on our special events calendar for the summer. You can learn more about these and other programs and events on our website at www.nationalMSsociety.org/NJM. We also have an exciting new program with Flemington Car and Truck Country (FCTC). FCTC will donate $200 to the National MS Society for each car leased or sold. Simply go to our home page for more information and to obtain a special coupon. I hope to see you at an upcoming event or program and please enjoy this summer season! Thanks for your continued support! Jim Roberts Chapter President
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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
The National MS Society, NJ 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 with a diagnosis of 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.
Board Leadership:
Staff Leadership:
The five MS Centers are listed below:
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 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.
Š 2012 National Multiple Sclerosis Society, New Jersey Metro Chapter
Bergen County The MS Comprehensive Care Center 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 The MS Diagnostic and Treatment Center 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 The Linda E. Cardinale MS Center at CentraState Hospital Star and Barry Tobias Ambulatory Campus 901 Main St., Freehold, NJ 732-294-2505
4 NURSING HOME ALLIANCE In the interest of providing optimal care for residents who have MS at long term care facilities, the National MS Society supports continuing education for facility staff. Each year the Society sponsors an educational program for administrators of selected long term care residences, nationwide. The program held in early June this year was hosted in the New Jersey Metro service area at the Preakness Health Care Center in Wayne. Only facilities that have developed partnerships with the local NMSS chapters and have dedicated programs for their residents with MS are chosen as hosts for this conference. We are proud to be partners with such a fine institution. n
MS CONNECTION: SUMMER 2012
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 a similar life experience to share ideas, learn from each other and 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. n
RESIDENTS OF PREAKNESS HEALTH CARE CENTER ENJOY A FESTIVE DAY OUT AT THE CHAPTER’S ANNUAL NURSING HOME LUNCHEON.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
CLIENT-TO-CLIENT RESOURCES FREEDOM IS A WONDROUS THING! Free Hoyer Lift. Used to transport patient from bed to wheelchair. Excellent condition. You pick up; Morristown area. Call Patti for more information - 973-539-2096, leave message. Willing to donate electric scooter: “Rascal” AutoGo scooter, rechargeable, available since I have 2 scooters and no room in apt. Collapses for transport with large car trunk or SUV. Only serious callers please @ (973) 571-9605. MINT Ex N’ Flex EF-300 Arm & Leg Wheelchair Exercise Machine. Call or email Christina for more details at 973-634-3953, chris1dem@msn.com. MINT Cando Magneciser Pedal Exerciser. Call or email Christina for more details at 973-634-3953, chris1dem@msn.com. Scooter/power chair lift for the trunk of a car available. The maker is Braun. Call Tony or Charlene for more information at 732-722-8055. Used 2005 Wheelchair Lift (platform) by Access Industries, Model PL-RA36, is available. Currently installed in private residence, receiving party responsible for removing and transporting the equipment to the new location. Installation and operating instructions are available. Equipment is being donated ‘as is’ and no warranty exists. Contact Ray for more details, 732-458-6663
One member’s response to the assistance provided to her (by the Chapter) in securing a wheelchair: Freedom is a Wondrous Thing! “Pamela” has reminded us that we all take freedom for granted. She realized this upon acquiring her fantastic new wheels. She writes, “…I want to tell you how very grateful I am for all your efforts you went through to acquire my fantastic new wheels. After more than a year, I can not only go more than ten foot in my room, but I can now again enjoy the greater outdoors for more than my trips to CentraState. Freedom is a wondrous thing we all take for granted. Thank you again.” n
6 RESEARCH
CONNECTING THE DOTS: VITAMIN D AND MS BY DR. LINDA BUCHWALD
Exciting new research is beginning to identify both genetic and environmental factors involving vitamin D that could increase one’s risk for developing MS and could influence disease progression. Research is also targeting vitamin D as a potential therapy, with clinical trials being planned or already underway to determine whether it can prevent or treat MS.
MS CONNECTION: SUMMER 2012
THE LATITUDE EFFECT There’s a long-standing observation that population rates of MS increase the farther away one is from the equator and from the sun, exposure to which is our major source of vitamin D. Could the two be connected? Researchers have been exploring that very question. Studies of who gets MS have confirmed that higher levels of sun exposure and higher blood levels of vitamin D were both associated with decreased risk of a first demyelinating event – often the first indicator of developing MS. In addition, there is evidence that high levels of vitamin D in utero and during adolescence and adulthood also have a positive effect on reducing the risk of developing MS. Other research suggests that vitamin D may have an effect on the inflammatory processes that occur during MS flares. In a small safety study at St. Michael’s hospital in Toronto, researchers found that immune T cells involved in MS attacks were suppressed in people who had higher blood levels of vitamin D.
GENES, VITAMIN D AND MS Studies done in families where multiple individuals have MS have resulted in new information that potentially links genetic factors related to vitamin D activation. In December, Canadian and British researchers published the results of a study that set out to look for rare genetic changes that could explain
JOHN, DIAGNOSED IN 2001
NATIONALMSSOCIETY.ORG | 1-800-344-4867 strong clusters of MS in some families. They studied DNA in 43 individuals selected from families with four or more members with MS. The team compared the DNA changes they found against existing databases, and identified a change in the gene CYP27B1 as being of interest. The CYP27B1 gene plays an important role in converting Vitamin D to a biologically active form. The researchers then looked for the same rare gene variant in over 3,000 families of unaffected parents with a child with MS. They found 35 parents who carried one copy of this variant along with one normal copy. In every one of these 35 cases, the child with MS had inherited the mutated version of the gene.
THE ROAD FORWARD Further research now underway will determine if vitamin D may have preventative as well as disease-modifying effects. In EAE, the animal model of MS, vitamin D supplementation prevents and slows the progression of the disease, while vitamin D deficiency worsens the disease. We also know that high vitamin D levels in people with MS have been associated with decreased risk of exacerbations and less severe disability. To what extent vitamin D can influence the course of MS once someone’s been diagnosed is still unclear; however, research is being planned to clearly define the role of vitamin D in the prevention, progression and treatment of MS. For instance, researchers at Johns Hopkins University are leading a multicenter controlled clinical trial funded by the Society to determine whether
7 high-dose vitamin D added to standard therapy with Copaxone further reduces disease activity in people with MS. (To learn more about this trial, which is still recruiting participants, visit www.clinicaltrials.gov/ct2/show/NCT01490502.) What is clear is that vitamin D deficiency is extremely common in many parts of the country. The optimal approaches for vitamin D supplementation in the general population and in those with MS have not been established, yet it is important that everyone take a minimum daily amount of vitamin D supplement. I recommend at least 2,000 IU and no more than 4,000 IU per day for my own patients with MS; however, official recommendations are lower (see www.ods.od.nih. gov/factsheets/VitaminD-QuickFacts), so ask your healthcare providers what they recommend for you. Due to the inherited risk of MS and the possible preventative effect of vitamin D supplementation, also discuss the possible implications of vitamin D deficiency and supplementation for your children. n Dr. Linda Buchwald is chief of Neurology at Mount Auburn Hospital in Cambridge, Mass., and the medical director of the Mount Auburn Hospital Multiple Sclerosis Care Center. She is a trustee of the Society’s Greater New England Chapter and Clinical Advisory Committee member. This article originally appeared in the Greater New England Chapter’s Spring 2012 MS Connection.
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MS CONNECTION: SUMMER 2012 Basically, SGA is the maximum amount someone can earn before being denied benefits. According to SGA rules, in 2012 you can make no more than $1,010 (or $1,690 for the legally blind) per month while applying for SSDI. If you are making more money than that, your application will automatically be denied.
MONEY MATTERS
WORKING AND SSDI BY KRIS ERICKSON
Many people with MS who have or who are considering applying for SSDI (Social Security Disability Insurance) worry that they will lose their benefits if they return to work, even parttime. The possibility of losing benefits is a scary prospect, especially if it took a long time to get approved for SSDI. However, with some knowledge and preparation, people with MS should be able to work and maintain their benefits.
WORKING WHILE APPLYING If you’re working and considering applying for SSDI, it’s essential to understand what Substantial Gainful Activity (SGA) is first.
Another important thing to know is that symptoms you list in your SSDI application as impediments to work should not be the same symptoms you’ve learned to accommodate successfully in your current job. For example, if someone submits an application listing gait and walking issues compounded by bladder incontinence, but uses a scooter to get around and self-catherization to handle incontinence on the job, then that will conflict with his or her SSDI application.
CALL YOUR LOCAL WIPA If you are already receiving SSDI benefits and are considering returning to work, contact a Work Incentive Planning and Assistance program (WIPA) first. WIPAs are nonprofit organizations with staff trained in SSDI and work issues. They can help educate people who are receiving SSDI on how to return to the work force while maintaining benefits. Visit www.ssa.gov/work/WIPA.html and click the “Service Provider Directory” for a listing of WIPA programs by state. Or contact an MS Navigator® at 1-800-344-4867, who will refer you to our closest WIPA program.
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TICKET TO WORK Most recipients of SSDI also receive in the mail a “ticket” from the Ticket to Work program. The program, intended to remove the barriers between work and benefits, is completely voluntary and consists of employment networks made up of public and private organizations. These include the Department of Vocational Rehabilitation, private employers, and individuals working together to help prepare beneficiaries to re-enter the workforce. After receiving the ticket, the next step is to take it to an Employment Network, usually a vocational rehab and/or career services agency or organization. A directory of networks can be found at www.ssa.gov/work. The network will work with you on your specific employment goals. For more information on the Ticket to Work program, visit www.yourtickettowork.com or call 1-866-968-7842.
TRIAL WORK PERIOD Once a person awarded SSDI returns to work, a Trial Work Period (TWP) begins automatically. TWPs allow people to test their ability to work and still be considered disabled by the Social Security Administration (SSA). Any month in which a person’s work income comes out to more than $720 counts as a TWP month. TWPs last for nine months (which are not necessarily consecutive) in a rolling 60-month period of work. Visit www.ssa.gov/OACT/COLA/twp.html for more information about the TWP. If you have been earning at or above the SGA amount set by the SSA, benefits will stop after the
TWP ends. However, they can restart within 36 months if your income falls below the SGA or if you lose your job and continue to meet the criteria of disability. However, do not navigate these requirements alone – call an MS Navigator or contact our local WIPA if you suspect you are earning more than the SGA, or have other questions.
THINK ABOUT WHAT YOU WANT TO GET OUT OF YOUR WORK EXPERIENCE BEFORE STARTING A JOB. THIS WILL HELP YOU BETTER PREPARE FOR SUCCESSFULLY COMBINING WORK AND SSDI BENEFITS. WHY WORK Finally, think about what you want to get out of your work experience before starting a job. Are you trying to go back to work full time and get off SSDI entirely? Or do you want to work part time to help supplement your income on a long-term basis? The answers to these questions will help you decide what your employment future can look like, and better prepare you for successfully combining work and SSDI benefits. n Kris Erickson is the health insurance manager for the Society. See page 12 to learn about the Chapter’s September program, “It’s All About Work.”
10 RAY, DIAGNOSED IN 2003
MS CONNECTION: SUMMER 2012 few real-world examples of accommodations that have worked for people with MS at www.askjan.org/soar/MS/MSex.html.) I then pointed out two things to remember about accommodations:
01 You must be able to perform the essential
functions of your job. The ADA (Americans with Disabilities Act) does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
MONEY MATTERS
WHAT ARE JOB ACCOMMODATIONS AND HOW DO I GET ONE? BY KRIS GRAHAM
At the Society’s Information Resource Center, where people with multiple sclerosis and their families can call an MS Navigator® at 1-800-344-4867 for help on a range of topics, we recently received a question about how to obtain accommodations when multiple sclerosis starts to get in the way of doing your job. So here’s what I told our caller. First, I explained what accommodations are. They can be things like new equipment or changes to existing equipment. Another type of accommodation may be a change to your work routine, such as hours worked. (Read a
02 Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available — so be ready to discuss alternatives.
Next, we discussed whether or not the ADA applied to the caller’s situation. People can request reasonable accommodations under the ADA if: n
They work for an ADA-covered employer;
n
They are “qualified” to do the job; AND
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They are a person with a disability as defined by the ADA.
ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions. If you’re not sure whether your employer is covered by the ADA, contact your regional ADA Center (look up your region at www.adata.org) or visit JAN (the Job Accommodation Network) at www.askjan.org. Both organizations are free and confidential resources. If your employer
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.
n
What accommodations or changes to your work will be effective?
n
When should you speak with your employer (or potential employer)?
“Qualified” to do the job means that someone has the “skills, experience, education, or other requirements” of the position, and “can perform the essential functions of the position with or without reasonable accommodation.” (For more information, download the Disability Law Handbook — Employment and the ADA for free at www.swdbtac.org/html/publications/ dlh/employment.html.)
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Who should you involve in the conversation?
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How should you follow up on your request?
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What are your rights if things go wrong?
The ADA’s definition of a “person with a disability” now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations. Although people with MS do not necessarily have to disclose their diagnosis, they must provide enough information for the employer to understand that they are a person with a disability. For more about workplace disclosure and a helpful worksheet, visit www.nationalMSsociety.org/disclosure. My next advice to the caller was to be prepared! Before you request accommodations, make sure you can answer all of the following questions: n
How is MS affecting your job, potential job, or application process?
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Why are you requesting accommodations?
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What information will you need to provide to your employer (or potential employer) to clarify the impairment affecting your work and the accommodation that will remedy the situation?
Finally, I told the caller that if she had additional questions, an MS Navigator would be standing ready for her call. n Kris Graham is the employment manager for the National MS Society.
THESE RESOURCES CAN PROVIDE MORE HELP AND INFORMATION The Win-Win Approach to Reasonable Accommodations, available at www.national MSsociety.org/accommodations. ADA — Your Employment Rights as an Individual With a Disability, available at the U.S. Equal Employment Opportunity Commission’s website at www.eeoc.gov/ facts/ada18.html. Employees’ Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act, available at www.askjan.org/EeGuide. JAN’s Searchable Online Accommodation Resource (SOAR) at www.askjan.org/soar/ index.htm.
12 PARTNERS IN MS CARE
MS CONNECTION: SUMMER 2012
IT’S ALL ABOUT WORK What: It’s All About Work – This full day conference will address the unique employment concerns of individuals with disabilities and will help define some of the steps involved in finding appropriate employment. When: Wednesday, 9/19/12 from 9:00am - 2:45pm Where: East Brunswick Hilton, 3 Tower Center Boulevard, East Brunswick
PICTURED FROM LEFT TO RIGHT: DEB THURSTON, RN, DR. MACHTELD HILLEN, DR. STUART COOK (CENTER DIRECTOR), JIM ROBERTS (NJM CHAPTER PRESIDENT), JIM QUINLESS, RN, PAULA CASPER AND DR. STEVE KAMIN. New Jersey is home to five MS Centers that are dedicated to the care of people with MS; the names and locations are listed on Page 3 of this publication. Most recently, The MS Diagnostic and Treatment Center at UMDNJ (Newark) received a plaque from the National MS Society, recognizing their commitment to providing comprehensive and coordinated care to their MS patients - Congratulations to UMDNJ! The Chapter looks forward to presenting plaques to the other MS Centers in the coming months. n
Presented by: The National MS Society, NJ Metro Chapter in collaboration with New Jersey Association of Centers for Independent Living, New Jersey Association of County Disability Services and New Jersey Division of Vocational Rehabilitation Services RSVP and More Information: Call Pat at 201-967-5599, Press Option #2, x43205 or e-mail pat.evertz@nmss.org. Please note there is a $10 refundable deposit fee. This conference is made possible through a grant from the Kessler Foundation. n
NATIONALMSSOCIETY.ORG | 1-800-344-4867
NJ TRANSIT’S THREE LIGHT RAIL SYSTEMS New Jersey is the home to three very different light rail systems, a transit mode that reminds some people of the historic trolley cars of years ago. These vehicles run on their own rail alignment or they can use tracks right in the street alongside automobiles – either way, they have many features which appeal to seniors on the go. You have level boarding and ADA accessible stations. New Jersey’s light rail is operated on a proof of payment system where you buy your ticket(s) from a machine in the station and you use another machine to timestamp your ticket before boarding the comfortable new light rail cars. Then you just sit back and enjoy the ride. The Newark Light Rail system is the oldest of New Jersey’s light rail lines. It has served the City of Newark and its suburbs since 1935, as the “Newark City Subway”. Today the system spans 6.5 miles between Grove Street, Bloomfield, Newark Penn Station and Broad Street Station. More than 20,000 passenger trips are made in a day, from 17 different light rail stations (11 are accessible as of 2012) and 21 light rail cars are in service each day. A one-way fare on the line costs $1.50 and seniors can ride for $0.70.
13 After years of planning, the Hudson Bergen Light Rail Line was opened in April 2000 between Jersey City and Bayonne. Since opening, the line has been extended into southern Bayonne and north through Hoboken, Weehawken, Union City and North Bergen. Ridership has grown dramatically, and the line has spurred the development of new office and residential space. There are 24 accessible stations on the HBLR, and 52 light rail vehicles serve up to 45,000 passenger trips a day. A one-way trip on the HBLR costs $2.10, with a senior citizen rate of $1.05. In South Jersey, a 34 mile long diesel light rail system between Trenton and Camden was opened to the public in March 2004. The River LINE has quickly grown in ridership and today as many as 10,000 weekday passenger trips are made. There are 20 accessible stations, located in communities all along the Delaware River between Trenton and Camden. With 20 light rail cars, the River LINE provides key connections to other transit in the region including the PATCO trains to Philadelphia or the commuter rail trains on the Northeast Corridor. The one-way ticket on the River LINE costs $1.50, but senior citizens travel for $0.70. You can read more about the services of NJ Transit from their website: www.njtransit.com. Specific information about accessibility can be viewed by clicking on the tab for Accessibility. n
14 SHOP FOR MS During MS Awareness Week in March, Fairway of Paramus hosted a Shop for MS night. A percentage of all proceeds on the evening of March 14th went directly to our Chapter. We appreciate Fairway’s partnership and community involvement! n
MS CONNECTION: SUMMER 2012
WALGREENS HAS JOINED THE MOVEMENT Walgreens Pharmacy has Joined the Movement (www.Walgreens.com)! Walgreens is interested in helping the Chapter spread the word about the National MS Society. For a limited time, Walgreen Pharmacies in the Chapter service area will add information slips to the prescriptions they fill for people who purchase MS drugs. The information slips will describe the Chapter and point people in the direction of our phone number and website. The Chapter thanks Walgreens for taking an interest in our programs and special events by providing: • Sponsorship for Walk MS at the Belmar site in the amount of $1,000, along with a Walk team at Belmar
SAVE THE DATE FOR THE BALL GAME! What: Take Me Out to the Ball Game. A fun-filled night with the Somerset Patriots. When: Thursday August 30, 2012, gates open 6:00pm; game time 7:05pm. Where: TD Bank Ballpark, Bridgewater, NJ. www.somersetpatriots.com. Fireworks will follow at the end of the game! For more information contact lisa.torre-janssen@ nmss.org or 732-508-4431 n
• A photographer at our Annual Fun Day at Monmouth Park on June 2 and 3 • A photographer at the Chapter Summer Golf Classic on June 25
• Volunteers for MuckRuckus on August 18
• Volunteers for the Chapter fall bike rides on September 16 and September 22 and 23
• Table space for NMSS information
NATIONALMSSOCIETY.ORG | 1-800-344-4867
PAYING IT FORWARD The next few paragraphs were written by Cathy Chester, a volunteer with the Chapter. She shares some inspiring words while acknowledging how far she has come with the help and support of loved ones, health care professionals and the National MS Society (NMSS)! I was diagnosed with MS in 1987 when I was 25 years old and my life was just beginning… hearing this definitive diagnosis was one of those life-altering moments of my life that I will never forget. Fortunately I was blessed with a family that rallied around me with their understanding and concern. Despite that, it was a confusing, scary and surreal time. I immediately needed to find as much information about MS as I could. At the time there was no internet, so I spent a good deal of time at my local library or on the phone calling organizations and physicians looking for articles and books about MS. There were two great answers I found to help in my isolation and quest to find answers to my questions. One was meeting the wonderful staff at a new MS Center. I became part of a second family – one of doctors, nurses, therapists, receptionists, and other MS patients. They were extraordinary people who were truly gifted in their field, and we all became a close-knit family. I am forever indebted to each of them. The second of my “great answers” was finding the NMSS. They were “there” for me from
15 the beginning, sending information to me about being newly diagnosed. I received many packages of booklets from them about what MS was, lists of support groups and programs available to me in my area, and general information about MS. My life went forward as I learned to live with my MS – I got married, had a beautiful baby, became involved with my son’s school activities, worked sporadically and did fundraising for my MS Center and the NMSS. I decided I always had a passion to help others, to “pay it forward” for the kindnesses I had received when I was first diagnosed. So I earned a certificate in Patient Advocacy from a university, while at the same time I became a writer for the website HealthCentral.com, addressing a variety of MS related issues from a peer’s point of view. Additionally I was trained as a Peer Resource volunteer for a pharmaceutical company to be available to other MS patients who are using the same disease-modifying medication as I am. Lastly I began a blog called An Empowered Spirit (www.anempoweredspirit.com) that focuses on people aged 50 and over who want to live vibrant and healthy lives – to journey together and share stories and comments on various issues. It’s both interesting and rewarding. ‘Paying it forward’ is now the theme of my life. I have a good life, despite having to deal with MS. I love helping others and I love writing about it. Living your passion while helping others – it doesn’t get any better than that, eh? As we, with MS, say – I have MS but MS does not have me! n
16 COVER STORY
STUDENTS HELPING STUDENTS Today’s generation of young people are active participants in society, making significant contributions to help make the world a better place. They hold the promise of a better future for themselves, their families and their community. The following story confirms today’s youth are tomorrow’s leaders! Five years ago teacher Amy Strafford and her fellow faculty members at Corpus Christi Grade
MS CONNECTION: SUMMER 2012 School in Hasbrouck Heights, NJ, were challenged by their principal to come up with a service project that would teach students how to make a difference in their community. Amy recommended holding a school walk to raise funds for the NJ Metro Chapter’s Scholarship Fund. Last year Amy was also given the opportunity to hold a walk at Immaculate Conception High School in Lodi. The walks were so successful they have become annual events in both schools. In five years the schools have raised an amazing $50,000. What makes these walks so unique is that they take place during the school day. Michelle Murillo, Principal of Corpus Christi School and Joseph Azzolino, President and Principal of Immaculate Conception High School feel that walking during class time drives home the message to their students that this is a life lesson. There are over 13,000 people living in New Jersey who are diagnosed with MS, while thousands more (family, friends, co-workers and caregivers) are impacted by the effects of the disease - many of them are students. One hundred percent of the funds collected by the schools go directly to students. Last year the school walks were
NATIONALMSSOCIETY.ORG | 1-800-344-4867 named Students Helping Students to reflect their accomplishments. Meryl Ravitz created the NJ Metro Chapter Scholarship Fund in 1994 in memory of her father. Growing up with a parent with MS, Meryl experienced firsthand all of the struggles associated with the disease and the impact it has on a child’s education. Joe Revello, of Team Bradco, has joined forces with Meryl, together they have become advocates for college students whose lives have been impacted by MS and have actively sponsored multiple events to raise funds for scholarship recipients. The students being helped are selfless and courageous, many of them being top students who would otherwise struggle to attend college.
17 A goal of Students Helping Students is to get as many schools as possible to sponsor school walks. Students are our future and when empowered they can accomplish amazing things, just like the students of Corpus Christi and Immaculate Conception. n
18 EVENTS
KISS MS GOOD-BYE! This year’s MS Awareness Week was a huge success with the kick-off of a new campaign called Kiss MS Good-Bye. The New Jersey Metro Chapter and its collaborating partner, Make Over Your MS, Inc., debuted exclusive Lip Toxyl Rouge Lipstick in Coral Charm and Liquid Luster Lip Gloss in Tempest at the Kiss MS Good-Bye Fashion Show & Health Event on March 15th (both the lipstick and lip gloss are in the beautiful tones of MS ORANGE, the Society’s energizing signature color). The event was generously hosted by Boscov’s in the Monmouth Mall in Eatontown, NJ. The event guests were provided with a fun packed evening of women’s health information and a
MS CONNECTION: SUMMER 2012 fashion show highlighting the spring’s latest colors, styles and trends in the fashion industry. All the models were wearing different color combinations of 2012’s Color of the Year-Tangerine Tango and the Coral Charm Lipstick or the Tempest Lip Gloss. These colors represent the energy boost needed to recharge, recover and move forward from the past which was a common theme throughout the night and for the campaign. All the fashions were sponsored by Boscov’s and the models were provided by Barbizon Modeling/Acting Center of Red Bank. Also modeling for us were Barbara Moses-Haratz, Nicole Pica, Carolyn Rizza and Laura Rizza who donated their time and effort to represent the healthy woman living with MS. Lisa Zwerdling, RN from the Visiting Nurse Association (VNA) presented “Women’s Health Issues.” Verena Fryberg, President/Founder of Makeover Your MS, Inc. and Susan McBride, Lancôme Makeup Artist presented “Makeup & MS” providing tips on makeup techniques. A good time was had by all.
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 In addition to the supporters of the program noted earlier, the Chapter and Makeover Your MS, Inc. would like to thank the following people for their continued support and dedication to the Kiss MS Good-Bye Campaign and Fashion Show: the entire team at Boscov’s (Albert Boscov, Teresa Forbes, Linda Ganley, Mari Jean Raulerson) and Lisa Anderson of the Breeze radio station. Proceeds from the event and sale of these products will help the Chapter move closer to a world free of MS while funding critical Chapter programs and services. The Kiss MS Good-Bye campaign will run all year to help keep MS awareness alive! For more information about the campaign please contact Allison Cerco at 732-508-4423 or by email at allison.cerco@ nmss.org. n
The 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.
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LipToxyl 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 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.
20 STAYING CONNECTED OVERSEAS BY KRISTA COLLOPY
Many college students study abroad. This valuable experience allows them to meet new people and learn about a different culture. During my recent study abroad I had an additional mission: to learn about how multiple sclerosis affected people outside of the United States. My study abroad in London, England would allow me to explore that aspect of this challenging disease. This issue is very
MS CONNECTION: SUMMER 2012 significant and personal to me because my mother was diagnosed with MS when I was only six months old. Growing up I became very familiar with the National MS Society’s (NMSS) programs and services. I have been active in NMSS for over ten years and as I planned my trip, I was eager to learn more about the structure and services provided by the MS Society in the United Kingdom. I had expected to find many of the same support services abroad, but learned that the MS Society in the United Kingdom, does indeed differ from NMSS United States. Upon my arrival in London, I reached out to the local MS Society Branch in Kensington only to learn it was not active. I was shocked, disappointed and worried. I wondered, what if I were a person with MS living in that area? What would I do if I were unable to travel to another Branch? How could I get the services I
ATTENDING MS LIFE, THE UK’S LARGEST MS CONFERENCE WAS THE HIGH POINT OF MY STUDY ABROAD.
ME AT THE MS SOCIETY NATIONAL CENTRE
NATIONALMSSOCIETY.ORG | 1-800-344-4867 might need? I did not let the dead end I found in Kensington stop me. I reached out to the Hammersmith and Fulham, and Camden Branches. I was relieved to learn that they were two active branches that provided many helpful and necessary services including monthly socials and annual luncheons. The Camden Branch provided free transportation services to the monthly social allowing many members to attend and learn new information about how to live with MS. The main topic of discussion this month was the issue of strength and balance because many people were scared of falling. The annual luncheon at the Hammersmith and Fulham Branch offered a chance for people to learn more about their disease from their peers. Both services were valuable. The monthly social health related solutions were presented by healthcare professionals; while the luncheon allowed people with MS to relate to one another on a more personal level.
ME WITH PETER GILLESPIE, CHIEF EXECUTIVE OF THE MS SOCIETY
Attending MS Life, the UK’s largest MS conference was the high point of my study abroad. The conference opened my eyes to the many different support programs in the UK. I was able to meet Simon Gillespie, the Chief Executive of the MS Society, where we discussed the different fundraising tactics between societies, Mr. Gillespie said, “The MS Society is currently working with NMSS to have cyclists in the UK travel and participate in
21 Bike MS events.” Peer Baneke, the CEO of the MS International Federation (MSIF), explained the importance of having MS organizations working together. MSIF’s top priority is bringing together all the MS societies in the world to collaborate and share ideas. It was exciting to speak with such influential people who are committed to the cause and providing a m o re c o h e s i v e connection between the good works done ME WITH PEER BANEKE, CEO for those who suffer OF THE MS INTERNATIONAL from MS throughout FEDERATION the world. MS has many different faces and affects people worldwide, but one aspect is the same everywhere and that is the person’s outlook. I met hundreds of good men and women during my visit to the United Kingdom, many living courageously, others just beginning to fit together the pieces of this challenging puzzle. One young woman whose symptoms began showing at age ten and was diagnosed at age 19, shared her view of MS. She said, “I treat everything like a joke, otherwise you get too frustrated, get too down, and I can’t afford that, it’s not in me.” This message is valuable to all of us! Growing up with my mom bravely battling MS everyday, she always told me, “You can’t control your body, but you can control your outlook on life.” n
22 MS BIKE
THE 10TH ANNUAL BIKE MS HOPS TO HOPS RIDE
MS CONNECTION: SUMMER 2012 Join the 10th Annual Bike MS Hops to Hops Ride and experience Lambertville and the rolling hills of the Amwell Valley! The 2012 Hops to Hops Ride will start and finish at The Inn at Lambertville Station, situated in historic Lambertville, alongside the Delaware River. Pedal a challenging 40 or 62 mile ride through scenic hills of New Jersey farmlands and finish back at the Inn at Lambertville Station with old and new friends. Finishing a Bike MS is terrific, but knowing that you are making a difference in the lives of people living with MS makes it incredible! At the finish line, enjoy a celebratory lunch and tastings of the River Horse Brewing Company’s Ales. Volunteers can choose to assist at registration, the start/finish
KNOWING THAT YOU ARE MAKING A DIFFERENCE IN THE LIVES OF PEOPLE LIVING WITH MS MAKES IT INCREDIBLE!
TEAM TIA AT THE 2011 BIKE MS HOPS TO HOPS RIDE
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 line or at a rest stop. Join us for a beautiful day, either way we need you to make this event a success! For cyclists, we offer complete ride support with fully stocked rest stops every 10-12 miles, medical and mechanical support, SAG vehicles, police and motorcycle assistance. In addition, invite your family and friends to cheer as you cross the finish line and enjoy a celebratory lunch and tastings of River Horse Brewing Company’s Ales in scenic Lambertville. Cyclists must collect a pledge minimum in order to participate. To register as a cyclist or to volunteer, visit our website at bikenjm.nationalMSsociety.org. n
HAPPY HOPS TO HOPS VOLUNTEERS
WHY I RIDE
People from all walks of life often share the reasons behind their Bike or Walk participation. Some people do it to honor a loved one who may have MS while others do it because it makes them feel good to contribute to a worthy cause, and still others do it because they just enjoy the event (the activity, the social networking, the fun)! Andrea, a Coast bike rider (who has MS) recently shared her thoughts: “…a big reason I ride is for the others with MS I’ve met along the way… I rode last year mostly just to say I did it. Then when the nagging pain in my hips, knees and shoulder wouldn’t abate I made the choice to invest in myself and participate in the MS Wellness class at CentraState and am still taking strength and fitness classes there. What a Godsend! My employer was supportive of letting me take one day a week for 12 weeks for the program. It was invaluable in helping me. Everyone now tells me I’m walking taller and straighter. But it was the people I met that are more advanced with their symptoms that got to me.” Andrea goes on to explain the struggles that people with more advanced MS face every day. She witnessed their strength and desire to move forward, to not let MS get the best of them. She said that it spoke volumes to her and “It’s important to do what we can to maintain function, maintain strength and maintain our dignity.” n
24 EVENT
39TH ANNUAL MS SPRING GOLF CLASSIC RAISES OVER $300,000 THE EVENT HAS RAISED MORE THAN $5 MILLION OVER THE YEARS, AND IS THE LONGEST-RUNNING CHARITY GOLF OUTING IN NATIONAL MS SOCIETY HISTORY.
MS CONNECTION: SUMMER 2012
NATIONALMSSOCIETY.ORG | 1-800-344-4867 Over 200 golfers enjoyed a beautiful spring day while raising more than $300,000 to benefit the National Multiple Sclerosis Society, New Jersey Metro Chapter. The 39th Annual MS Spring Golf Classic, held May 7, 2012 at the Ridgewood Country Club in Paramus, was supported by Tournament Sponsor – Prestige Lexus of Ramsey, Lunch Sponsor – Interstate Outdoor Advertising, Dinner Sponsor – Colossal Media, Golf Cart Sponsor – CBS Outdoor, On-Course Refreshments Sponsor – Adobe, and Networking Reception Sponsor – Autoweek Media Group. Fifty corporate teams from the NYC media and advertising industry, including teams from AOL, Thomson Reuters, ABC Family, Viacom Media Networks, Scripps Networks, Verifone Media and The Wall Street Journal, participated in the
25 popular networking event which has raised more than $5 million dollars over the years and is the longest-running charity golf outing in National MS Society history. Participants enjoyed a festive day that included networking, great giveaways, contests and dinner reception. The event is led by long-time Event Co-Chairman, Mike Lotito, CEO at Media IQ in New York City and Event Co-Chairman, John Miles, Managing Partner at Maxus. All proceeds from the MS Spring Golf Classic support the organization in its mission toward a world free of MS. This event also has designated $35,000 of its fundraising revenue to specifically support the Chapter’s Scholarship and Children’s Programs. n
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MS CONNECTION: SUMMER 2012
MS WALK
IT WAS A BEAUTIFUL DAY FOR WALK MS 2012! RIDGEFIELD PARK
On Sunday, April 15th, nearly 12,000 walkers and volunteers participated in Walk MS 2012 on a lovely spring day. Participants walked in one of 12 distinctive locations throughout Northern and Central New Jersey. Many walkers had gorgeous views of the New York skyline, some walked on boardwalks while watching the blue waves of the Atlantic Ocean and some strolled through a picturesque park, or along streets of a charming town. All came together to show their support for their loved ones and friends who are living with MS and all knew they were part of something very, very special. RIBBON CUTTING Over $2 million will be raised from the event and we attribute the success of Walk MS to our remarkable and inspiring Team Captains, exceptional
NEILS SEMPER FI TEAM
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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NICOLE PICA, MOST INSPIRATIONAL WALKER AT BELMAR AND HER TEAM and supportive team members, devoted individual and virtual walkers, energetic and enthusiastic volunteers, generous sponsors and dedicated staff. We cannot thank everyone enough for all that you do for this event and the New Jersey Metro Chapter.
TEAM MY SISTERS AT THE ROXBURY WALK MS
TEAM RAY’S RAIDERS AT THE FREEHOLD WALK MS
We would like to take this opportunity to thank our extremely generous Presenting Sponsors: Novartis, EMD Serono, Foodtown and Sam’s Club. And, our very special thanks for their invaluable support to Bayer HealthCare Pharmaceuticals, Johnny On The Spot, Acorda Therapeutics, Biogen, CentraState Healthcare Foundation, Enterprise Holdings, Meridian Neuroscience, Teva Neuroscience, Dr. Richard Richter and The Luminations Group. We are also truly grateful to our wonderful Media Sponsors for their efforts and support of this event: News 12 NJ, WRAT Radio, Magic 100.1, WDHA 105.5, Classic Oldies WMTR and New Jersey 101.5. And, our huge thanks to our amazing Rest Stop Sponsors: Financial Resources, Shop Rite of Hunterdon County, RoNetco
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MS CONNECTION: SUMMER 2012 Shop Rite, Shore Rehabilitation and Target. Finally, our sincere appreciation to Bar Anticipation, Fairway Markets, PODS, FREE Electrolyte Water, New Jersey American Water, Team My Sisters and Super Duper Deli.
TEAM GREENGRASS
Also contributing to the remarkable success of Walk MS are our dedicated Site Coordinators! These determined individuals work extremely hard at their walk sites each year to ensure they run smoothly for all participants. We would like to express our heartfelt appreciation to Tom and Christine Crowell (Seaside), Bob and Jean O’Connor (Freehold), Kathy DeFillippo (Roxbury), Terry Simonds and Claudia Marchese (Flemington), Maria and Joe Avena (Hamilton) and Giovanna Branciforte (North Brunswick). Funds raised by Walk MS go toward supporting hundreds of educational and social programs and services for the 10,000 plus individuals and their families in our chapter’s region who live with MS every day. The National Multiple Sclerosis Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Congratulations and thank you again to everyone involved in this event, for helping us to achieve our mission to create a World Free of MS and for making a difference in the lives of our loved ones and friends living with MS. Together, we will STOP, RESTORE and END MS FOREVER! n
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
EVENT
FORKS & CORKS The New Jersey Metro Chapter of the National Multiple Sclerosis Society held a food & wine tasting event, Forks & Corks: A Culinary Experience, on Monday, May 14, 2012. Over 250 people enjoyed gourmet food and excellent wine from some of North Jersey’s best restaurants at Maritime Parc in Jersey City. To top off the evening, attendees were treated to wonderful desserts and lattes. It truly was a great culinary experience for all who attended! Proceeds from the event support valuable programs and services for the over 10,000 individuals and their families living with MS in our geographical region. The mission of the National Multiple Sclerosis Society is to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. n
VALENTE BAKERY AT FORKS & CORKS
THE LADIES OF DRUNKEN CHERRY COOKIE COMPANY AT THE 2012 FORKS & CORKS
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MS CONNECTION: SUMMER 2012
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NATIONALMSSOCIETY.ORG | 1-800-344-4867
IN REMEMBRANCE In Honor and Loving Memory Sgt. Joseph D’Augustine Sgt. Shauna Brocklebank Adams Medal of Honor Recipient – U.S. Airforce Captain Ed Freeman Cpl. Derek A. Kerns Lance Cpl. Osbrany Montes De Oca Buddy Adler Ann Armocida Fred Bonfiglio Roseanne Bregman Anita Brody Charles Burke Carmela Cardinale Ian Colvin Sharon Coogan Dolores Cowen Michael DiCairano Anna Doloughty Marie Fox Dunn Marcus Louis Feder Rose Fox Marissa Marie Fredericks Vincent Gambino Richard Goette Ruth Gordon Emma Hayes Lawrence Huth Jr. Jill Elizabeth Knowles Connie Korecky Rosalie Lamendola George Lasica Catherine Litrenti Helen Marshall Mary McGovern
Emily Moore Sonny Needle Mary Oliviadotti Maria Peterson Maryann Pfancook Marie Price Sidney Rackenberg William Rango Lillian Rivera Shirley Rodes Ruth Rogers Lee Ann Schimkowitz Ivy Schirra Beverly Jean Schmidt Emil William Schmidt Diane Shrank Charles Shuhala Jr. Ella Smith Maria Irene Soler Yoel Soler Helen Solomon Jezrael Sotomayor John Stark Miriam P. Stern Robert Walbroel Donald Watkins Beth Ann Weickert Charles George Weiner
FREE MATTER FOR THE BLIND OR HANDICAPPED
New Jersey Metro Chapter 246 Monmouth Road Oakhurst, New Jersey 07755
LIVING WITH MS
EMERGENCY PREPAREDNESS We all need to be aware of disaster preparedness and emergency response; people with disabilities often require more individual preparation. Register Ready, New Jersey’s Special Needs Registry for Disasters is a free, voluntary and confidential program designed to assist people with special needs who may find it difficult to get to safety in the event of an emergency. People with special needs (or caregivers on their behalf) are encouraged to register through www.registerready.nj.gov. Alternatively, they can call New Jersey’s toll-free 2-1-1 telephone service. This service will register people, offer free translation and provide TTY services for the hearing-impaired. n
NEW JERSEY’S SPECIAL NEEDS REGISTRY FOR DISASTERS IS A FREE, VOLUNTARY AND CONFIDENTIAL PROGRAM DESIGNED TO ASSIST PEOPLE WITH SPECIAL NEEDS WHO MAY FIND IT DIFFICULT TO GET TO SAFETY IN THE EVENT OF AN EMERGENCY