summer 2013 new jersey metro chapter
MS Connection Newsletter
Celebrate the new jersey metro chapter’s programs & services! 3
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INSIDE 04 THIS ISSUE
Connecting with peers
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A Petition of importance!
6 To see a description of each of the photos featured on this cover, turn to page 7.
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new jersey ms task force
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wellness for clients and caregivers
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MS connection: summer 2013
Letter from the president Jim roberts Friends,
Connect with us online: New Jersey Metro Chapter www.nationalMSsociety.org/NJM Email: njminfo@nmss.org Like us: www.facebook.com/pages/ National-MultipleSclerosis-Society New-Jersey-MetroChapter/117041902295 Follow us: @MSNJMetro Watch us: www.youtube.com/user/ NewJerseyMetro Production of this newsletter is generously supported by:
It’s hard to believe that over half of our year is over and that events such as Walk MS and Bike MS: Coast the Coast and other key events like Musical Moments for MS and Women on the Move as well as the MS Spring Golf Classic are behind us. A still-sluggish economy here in New Jersey coupled with the continued aftermath of Superstorm Sandy have certainly created challenges for the New Jersey Metro Chapter, just as they have for many others throughout the state. I’m proud to say that our team has stepped up to minimize these challenges. Our April 14 Walk MS had over 1,000 more participants than last year, welcoming 12,500 walkers to 12 sites throughout New Jersey and creating additional awareness of MS as a result. Bike MS: Coast the Coast participants battled cool, windy and rainy conditions in May as they rode their bicycles from West Long Branch to Cape May in an effort to raise over $1 million dollars. Nearly 200 golfers swung their clubs at Ridgewood Country Club, raising nearly $300,000 in the process. And Musical Moments and Women on the Move held last fall combined to raise over $1 million! Even with all of this success we have heard the struggles that our fundraisers are facing in raising funds for this great cause, which has resulted in some difficult cutbacks for our chapter. With just four months left to our fiscal year, we need your help more than ever! How can you help? We have some wonderful opportunities ahead, including MuckFest MS being held on June 15 at Essex County South Mountain Reservation in West Orange, NJ, Bike MS: Hops to Hops on September 15 and Bike MS: Great Country Ride on September 21-22. For those who prefer less physically challenging events, consider supporting the beautifully regal On the Move luncheon on Thursday, September 19, which will honor our friend Beth Stavola, or the Women on the Move Luncheon on November 8th. Come on out, have some fun, and raise important funds to support programs and services as well as important MS research! For more information on our upcoming events, please visit our website at: www.nationalmssociety.org/chapters/NJM/index.aspx. Hope to see you and be well! Jim Roberts
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nationalmssociety.org | 1-800-344-4867
NATIONAL MULTIPLE SCLEROSIS SOCIETY
MS CENTERS IN NJ
New Jersey Metro Chapter Northern Office:
1 Kalisa Way, Suite 205, Paramus, NJ 07652 201-967-5599
Central Office:
246 Monmouth Road, Oakhurst, NJ 07755 732-660-1005
Board Leadership:
Staff Leadership:
Chair
Chapter President
Michael D. Gibney
Jim Roberts
Treasurer
Executive Vice President of Development
Joe Welter Secretary
Michael Pawelczak
Karen Drzik Vice President of Programs & Services
Nancy Chazen Vice President of Development
Jennifer Hivry Vice President of Finance
Gwen Leach Newsletter Editor:
Alexandra Whelan
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic Society recommends that all questions and information be discussed with a personal physician. Such names appear here solely because they are considered use or contents of any product or service mentioned.
Š 2013 National Multiple Sclerosis Society, New Jersey Metro Chapter
and the MS Centers in NJ have collaborative relationships that enhance the services that are provided to people and their families who live clinical care and medical expertise while the Chapter complements that care by offering a variety of educational and support services. Bergen County at Holy Name Hospital 718 Teaneck Road, Teaneck, NJ 201-837-0727 Essex County MS Comprehensive Care Center at St. Barnabas Ambulatory Care Center 200 South Orange Ave., Livingston, NJ 973-322-7484 at UMDNJ 90 Bergen St., Suite 8100, Newark, NJ 973-972-2550 Middlesex County Robert Wood Johnson Center for MS Clinical Academic Building- 6th Floor 125 Paterson St., New Brunswick, NJ 732-235-7733 Monmouth County at CentraState Hospital Star and Barry Tobias Ambulatory Campus 901 Main St., Freehold, NJ 732-294-2505
4 Connecting with peers
The Chapter has more than 30 self-help groups in its 14 county service area. These groups bring together people who share a common life experience for support, education, and mutual aid. Members of self-help groups share a belief that positive personal change happens through individual efforts with the support of others. Everyone is welcome. A complete list of meeting locations and leader contact information can be found on the Chapter website, www.nationalMSsociety.org/NJM, then click on the link for Self Help Groups/ Peer Support on the left-hand navigation panel. If you cannot view the calendar or need more info, please contact Lisa Torre-Janssen at 732-508-4431 or lisa.torre-janssen@nmss. org. Additional opportunities to meet and greet others are listed below, including online connections, MSFriends, and conference call support groups.
Online Peer Support Connections MS affects everyone differently- that’s why it is important to have someone you can count on to support you in the way that YOU need. Through the Online Peer Connections program you can search for and connect with a peer support volunteer who has “been there” and can provide you with helpful tips, suggestions and emotional support for the challenges one with MS may encounter. Online Peer Connections volunteers have been through a
MS connection: summer 2013 rigorous screening and training process. What are the benefits of an Online Peer Connections relationship? • You can pick your own peer from a list of trained peer support volunteers from many different walks of life. • Connect with your peer right away via your email account. (Telephone support also available if needed.) • Have confidential conversations with the same peer about the topics most relevant to your life. • How to connect? Go to: msconnection.org/.
http://www.
Peer Support Through MS Friends MS knows no timetable – this is why we offer support when you want and need it. The MSFriends program connects you with volunteers living with MS. The common bond of living with MS creates a unique connection. MSFriends volunteers complete a rigorous screening and training program and are focused on the needs of those who call for support. For more information, go to: http:// www.nationalmssociety.org/living-withmultiple-sclerosis/connection-programs/ msfriends-peer-telephone-support/index. aspx.
Conference Call Support Groups You (and your family, friends and caregivers) are invited to participate in Conference Call Support Groups for individuals living with MS. These groups are created to meet the needs of people with similar concerns. The
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nationalmssociety.org | 1-800-344-4867 Conference Call Groups are an hour long, free of charge and require no special equipment. These calls are easily accessible from your home and are a great way to connect and get support from your peers and professionals. All groups provide opportunities to discuss MSrelated concerns, experiences and resources. Groups are conducted by trained therapists. To participate in a group, you must be registered as a member of the National MS Society; membership is free. The specific groups include: • Caregiver/Partners • Children (ages 9-14) Who Have a Parent Living with MS • Cognitive Concerns • Lesbian, Gay, Bisexual or Transgendered • Men’s Concerns • Newly Diagnosed • Pain and Spasticity Management • Parenting (for parents with MS who have children 18 or younger) • Residents of Nursing Homes • Stress Management To learn more about these Conference Call support groups, go to this link (it will take you to the NYC-SNY Chapter website) http:// www.nationalmssociety.org/chapters/nyn/ programsandservices/counseling-servicesand-emotional-support/support-groups/ index.aspx. You can register online or via telephone. If you register via telephone, please indicate that you want to register for a Conference Call Support Group. g
MS Computer Outreach Program Alert! The National MS Society New Jersey Metro Chapter’s Computer Outreach Program (COP) is growing! The program is designed to connect people living with MS who reside in long term care facilities or are unable to leave their homes and are isolated from the outside world. If you are upgrading your computer, I Pad, desktop or tablet we can use your old equipment! You can make a difference in the life of an isolated person living with MS; DONATIONS of computers with Windows 7 or Vista are much appreciated. Contact Lisa at 732-508-4431 or lisa.torrejanssen@nmss.org to donate or if you know someone living with MS who needs to be connected to the outside world. g
program opportunities in the northeast
Join us at programs for people affected by MS at locations that are most convenient for you in the northeast, including these states: CT, MA, ME, NH, NJ, NY and VT. Learn more from the NJM Chapter website: www.NJM.nationalMSsociety. org/NJM, click on Programs, then click Programs in the Northeast on the left column.
6 A Petition of Importance! The National MS Society is pushing out an online petition asking Congress to create more flexible, affordable long-term services and supports (LTSS) options for Americans. Since the Community Living Assistance Services and Supports (CLASS) program was repealed last December, a bipartisan Longterm Care Commission was established but has yet to formally meet. The online petition is a means to show Congress that this issue is still important to the American public. The petition has garnered nearly 7,000 signatures so far and we hope that you will help us gather more! The petition will eventually be delivered to Congress and hopefully launch discussion and action. You can sign the petition through this link: ntl.ms/LTSSpetition2. Chapter member Michael Ogg shares his story on his MS blog and is helping motivate others to sign the petition. You can read more about Michael’s story from this link: blog. nationalmssociety.org/2013/05/planning-forlong-term-taking-action.html. g
In Memoriam The National MS Society, New Jersey Metro Chapter would like to thank Donna Rivello for the contribution she made to the Chapter in memory of Russell Rivello, Sr. g
MS connection: summer 2013
Join us for Take Me Out to the Ball game A fun-filled night with the Somerset Patriots What: Take Me Out to the Ball Game When: Thursday August 8, 2013, 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! RSVP at tinyurl.com/mssomersetpatriots or call 1-800-344-4867, option 1 and ask to register for Take Me Out to the Ball Game. If you have any questions or for more information contact Lisa.Torre-Janssen@nmss.org or 732-508-4431. g
The Regal Luncheon
THIRTEENTH ANNIVERSARY
2013 Honoree Mrs. Beth Stavola September 19, 2013 at the Berkeley Oceanfront Hotel For more information contact: Karen Drzik at 201-977-6054 or email karen.drzik@nmss.org
nationalmssociety.org | 1-800-344-4867
Photographs from chapter programs and services Descriptions listed below correspond with the numbered photographs on the cover of this newsletter. 1. Robert appreciating his new apartment in Allendale 2. Joy, Maria and Diana from the Walk MS team, Joyful Walkers taking a moment to pose for the camera at an educational program. 3. Residents of Plaza Nursing and Rehabilitation enjoying the fun at the Chapter’s nursing home luncheon. 4. Swim-In 37th year Anniversary Celebration Luncheon; photo includes the Board members and the NCJW Council Members 5. Kershaw Commons residents participating in a drumming session designed to improve health and wellness. 6. Program participants having some fun while they Chase Away the Blues in March! 7. Another photograph of participants having a blast at Chase Away the Blues held in March! 8. Dennis and Sue having fun after setting up a computer through the Chapter’s Computer Outreach Program. g
7 Van Guard Medical Group Donates to the New jersey metro Chapter! In honor of their 10th anniversary in practice, the Van Guard Medical Group of Cranford held an open house. For each guest who attended the Open House, a $10 donation was made to a selected charity, up to $5000! The Chapter is one of the charities! Pictured below is Chapter representative Karen Drzik accepting a donation from the staff of the Van Guard Medical Group. g
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MS connection: summer 2013
Wellness Classes for Everyone! Laurie Ryan is a wife of 26 years, a mom of two young adults and was diagnosed with MS on April 1, 2001. Laurie says, “It was no April Fools’ joke, it was real!” Soon after her diagnosis, Laurie became involved with the National MS Society. She found herself volunteering often at the Chapter office and raising funds annually at Walk MS. Then she decided to do something just for her – she joined a tai chi class that the Chapter offered through its program, Wellness for Clients & Caregivers. Laurie says that, “The instructor was well-versed on how to adapt the exercises, teaching them in a seated or standing position. It also helped that I could practice exercises at home.” Laurie describes feeling better after an MS Wellness class, “I feel stronger, even if I’m tired after a class, that’s momentary. In the end it serves to increase my strength, flexibility and improves my balance. Not only do I find an increase in my energy, but I also feel that the class helps me in an emotionally supportive way. I have connected with so many other people who are coping with MS, along with everything else that life throws your way.” Over the years, Laurie has spread the word about the MS Wellness classes and encourages others to join. Currently, Laurie attends 3 different classes supported by the National MS Society, “I start my week with a yoga class, then on Wednesdays I attend Swim-In (aquatic therapy led by a physical therapist) and I end the week with another yoga class. It’s one of the best things I could do for myself!”
pictured above, laurie ryan
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nationalmssociety.org | 1-800-344-4867
“Don’t Text and Drive” Campaign Contest NJ Manufacturers, in honor of their 100th Anniversary, is running a yearlong “don’t text and drive” campaign. If they receive 50,000 signatures, each of the 5 non-profits chosen will receive $10,000. The National Multiple Sclerosis Society New Jersey Metro Chapter is one of them!
New jersey ms task force
For each person that takes the pledge, the NJ Metro Chapter gets $1.00. It really adds up! So ask your family, friends, and colleagues to sign and then help you get additional signatures as well. To obtain a form, please log on to our website www.nationalMSsociety.org/NJM and click on the link in the Don’t Text and Drive article in the yellow box on the right of the front page. If we need to send you forms, just let us know.
The NJ MS Task Force continues to meet, working to identify the unmet needs of those living with MS and their families in the State. The Task Force will present a written report of recommendations to the Governor and NJ Legislature in December 2013. Your input is needed as the Task Force moves forward. To share your story or addresses issues that affected you and your family, please visit the MS Task Force website at http://www.state. nj.us/health/fhs/mstaskforce/index.shtml. Here you can find information on the work of the Task Force, resources for people with MS, and share your comments. Let your voice be heard and work with us as we strive toward a world free of MS.
How can you help? Beginning NOW thru August 15th we are challenging you to help the National MS Society NJ Metro Chapter receive that $10,000! We can’t do this alone so we calling on you! The person who collects the most signatures by August 15th will receive:
For more information on the Task Force or with questions, contact Stephanie Hunsinger at stephanie.hunsinger@nmss.org.
tickets fore charity
• A $25 gift card to your choice of: Kohls, Starbucks, or Dunkin Donuts
The NJ Metro Chapter has partnered with TICKETS Fore CHARITY from now until August 16 with tickets to The Barclays PGA Tour! The Barclays come to Liberty National Golf Course, Jersey City, from Aug. 20-25 for a week on the links. One-day and weekly ground tickets are available. Contact Karen Drzik at 201-977-6054 or karen.drzik@ nmss.org for more information.
• Your photo and story of how you collected the signatures on our Facebook page • Photo and story in the Winter edition of MS Connection
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MS connection: summer 2013
wellness for clients and caregivers
Enjoy this sneak peek of classes that will be offered in the fall of 2013. View the Chapter website often to stay informed about new classes and registration.
bergen county
Yoga: Mondays - 2:30 pm to 3:30 pm Location: Crescent Commons, 303 W. Crescent Avenue, Allendale, NJ Yoga: Fridays - 1:45 pm to 2:45 pm Location: The Heritage at Lyndhurst, 601 Riverside Avenue, Lyndurst, NJ Swim-In: Wednesdays - 1:00 pm to 3:00 pm Location: JCC on the Palisades, 411 E. Clinton Avenue, Tenafly, NJ
essex county
Aquatics: Mondays - 12:00 pm to 1:00 pm Location: Caldwell Community Center, 1 Provost Square, Caldwell, NJ Yoga: Tuesdays - 7:30 pm to 8:30 pm Location: TBA
Morris County
Tai Chi: Wednesdays - 1:30 pm to 2:30 pm Location: Church of the Savior, 155 Morris Avenue, Denville, NJ Yoga: Thursdays - 7:00 pm to 8:00 pm Location: Presbyterian Parish House, 65 South Street, Morristown, NJ
ocean county
Aquatic Therapy: Fridays - 1:00 pm to 2:00 pm Location: Toms River Fitness Center, 213 Route 37 E, Toms River, NJ
Passaic County
Tai Chi: Wednesdays - 3:30 pm to 4:30 pm Location: Packanack Community Church, 120 Lake Drive East, Wayne, NJ
hudson county
sussex county
Yoga: Thursdays - 1:00 pm to 2:00 pm Location: Bayonne JCC, 1050 Kennedy Blvd. Bayonne, NJ
Tai Chi: Mondays - 12:00 pm to 1:00 pm Location: First Presbyterian Church of Sparta, 32 Main Street, Sparta, NJ
Mercer county
union county
Monmouth county
Warren county
Yoga: Tuesdays - 3:30 pm to 4:30 pm Location: RWJ Hamilton Center, 3100 Quakerbridge Road, Mercerville, NJ Yoga: Thursdays - 3:30 pm to 4:30 pm (chair yoga) and 5:00 pm to 6:00 pm (mat yoga) Location: Kershaw Commons, 6000 Applewood Drive, Freehold, NJ Aquatics: SOON TO BE ANNOUNCED! Location: CentraState, 901 West Main Street, Freehold, NJ
Yoga: Wednesdays - 11:00 am to 12:00 pm Location: Clark Municipal Building, 430 Westfield Avenue, Clark, NJ Yoga: Wednesdays - 6:00 pm to 7:00 pm Location: Rutherfurd Hall, 1686 Route 517, Allamuchy, NJ Any questions, contact Patti, 201-977-6053 or patti.pasquino@nmss.org
nationalmssociety.org | 1-800-344-4867
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MS connection: summer 2013
More than 12,000 Participated in Walk MS 2013! We experienced beautiful weather for Walk MS on Sunday, April 14th and are well on our way to reaching our goal to raise $1.9 million! Walkers chose among 12 scenic Walk site locations in Northern and Central New Jersey, but some sites and/or routes had to be changed due to damage done by Hurricane Sandy, especially to our Jersey Shore boardwalks. Despite those challenges, thousands of walkers
enjoyed the beautiful views of the New York Skyline or strolled through picturesque parks or along streets of charming towns. Some had the opportunity to walk on the “warning track” at a baseball stadium and others actually ran
a 5K fun run for the first time this year! But no matter where participants walked, everyone 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. We attribute the success of Walk MS to our inspiring and motivating Team Captains, exceptional and supportive team members, devoted individual and virtual walkers, energetic and enthusiastic volunteers, incredibly generous sponsors and dedicated staff. The board and staff of the New Jersey Metro Chapter cannot thank everyone enough for all that you do for this event and the people we serve who face the challenges of MS every day. Also greatly contributing to the outstanding success of this event are our wonderful sponsors. Our sincere appreciation to our Presenting Sponsor: Novartis. And, our heartfelt thanks to these remarkable community-minded companies: Foodtown and Sam’s Club, Bayer HealthCare Pharmaceuticals, Johnny On The Spot, Walgreens, Acorda Therapeutics, CentraState Healthcare Foundation, EMD Serono, Enterprise Holdings, Fairway, Questcor, Biogen, Genentech, Meridian
nationalmssociety.org | 1-800-344-4867 Neuroscience, Rainer, Dr. Richard Richter, Shore Rehabilitation, Teva Neuroscience, The Luminations Group and Genzyme. We are also truly grateful to our awesome Media Sponsors for their efforts and support of this event: News 12 NJ, WRAT Radio, Magic 100.1 and WDHA 105.5. And, we thank our amazing Rest Stop Sponsors: Coloplast, Financial Resources, New Jersey Manufacturers Insurance Company, RoNetco Shop Rite and Shop Rite of Hunterdon County. Finally, our heartfelt appreciation to Bar Anticipation, Circle Hyundai, Crystal Geyser, FREE Electrolyte Water, Trader Joe’s, Summit Medical Group and Super Duper Deli. We thank you for your invaluable support of our friends who are living with MS! Also contributing to the outstanding success of Walk MS are our dedicated Site Coordinators! These extraordinary individuals work tirelessly each year to ensure their walk sites run smoothly for all participants. Our heartfelt appreciation to Tom and Christine Crowell (Lakewood), Bob and Jean O’Connor (Freehold), Kathy DeFillippo (Roxbury), Terry Simonds (Flemington), Maria and Joe Avena (Hamilton) and Giovanna Branciforte (North Brunswick).
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Words cannot express our gratitude to you for all that you do! 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 (Progression of this Disease), RESTORE (What’s Been Lost) and END MS FOREVER! g
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MS connection: summer 2013
40th ANNUAL MS SPRING GOLF CLASSIC RAISES OVER $280,000 Over 185 golfers enjoyed a beautiful spring day while raising more than $280,000 to benefit the National Multiple Sclerosis Society, New Jersey Metro Chapter. The 40th Annual MS Spring Golf Classic, held on May 6, 2013 at the Ridgewood Country Club in Paramus, was supported by Tournament Sponsor – Prestige,
including Lexus, Toyota, Jaguar, Land Rover and Mercedes-Benz, Lunch Sponsor - Interstate Outdoor Advertising, Dinner Sponsor Colossal Media and Golf Cart Sponsor – CBS Outdoor. Fifty corporate teams from the NYC media and advertising industry, including teams from AOL, Thomson Reuters, Foursquare, ABC Family, Viacom Media Networks, Scripps Networks, Verifone Media and The Wall Street Journal, participated in the 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.
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nationalmssociety.org | 1-800-344-4867
spotswood high school volleyball fundraiser
The event is led by long-time Event CoChairman, Mike Lotito, Managing Director of Procurian and John Miles, Managing Director at Maxus. All proceeds from the MS Spring Golf Classic support the organization in its mission toward a world free of MS. g
Over a decade ago, Frank Yusko, Co-Advisor of the Community Service Club at Spotswood High School, who is living with MS, and Co-Advisor, Marty Dempsey, started their annual Volleyball games to raise money for MS research. Aileen Benitez took over the club when Mr. Yusko retired and to date, over $100,000 has been raised! The wonderful students of Spotswood High School embrace this fundraising event each year, which is an easy and fun activity for high school students to take on, right on their own campus. We thank Mr. Yusko, Mr. Dempsey, Ms. Benitez and the amazing students who participate in this event for helping us to achieve our vision of a World Free of MS!! (If you would like to start a Volleyball Fundraiser at your school, please feel free to contact Frank Yusko at francisyusko@aol.com.)
free matter for the blind or handicapped
New Jersey Metro Chapter 1 Kalisa Way, Suite 205 Paramus, NJ 07652
2 DAYS 50 K CONNECT TO END MS
NEW JERSEY INVASION AT THE 2012 EVENT
ACCEPT THE CHALLENGE! SEPTEMBER 7-8, 2013 CHALLENGE WALK MS: A COMMUNITY OF SPIRIT & STRENGTH REGISTER TODAY:
MSchallengewalkcapecod.org or 201.967.5599 ext. 44316 Karen Drzik, VP of Development National MS Society, NJ Metro Chapter