ms connection newsletternew jersey metro chapter...the effectiveness of a 4-week yoga program. the...
TRANSCRIPT
SPRING 2014 NEW JERSEY METRO CHAPTER
MS CONNECTION NEWSLETTER
INSIDE THIS ISSUE
04CHAPTER SELF-HELP GROUPS
06YOGA AND RESEARCH
08IN MEMORY OF ROSE MESSINA
14ARE YOU READY FOR A CHALLENGE?
ROBERT MENENDEZ OF NEW JERSEY NAMED AS THE NATIONAL MS SOCIETY’S U.S. SENATOR OF THE YEARREAD MORE ON PAGE 7
2 MS CONNECTION: SPRING 2014
LETTER FROM
BONNIE HIGGINSI am delighted to serve as your Chair of the NJ Metro Board. First, I would like to extend my thanks to Mike Gibney for his outstanding service to the Society these past three years as our previous chair. I also want to thank Jim Roberts and the entire NJ Metro team for their great efforts, every day, towards achieving our mission to mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. My personal connection to multiple sclerosis began in 1994, when I was first diagnosed with the disease. The NJ Chapter was there for me during that very difficult time and I am humbled to give back in this new expanded role. Since 1994, I’ve had the good fortune to serve the Society in Canada, Indiana and back here in New Jersey where I was born and raised. Our Walk Team, S’Myelin Spirit, has walked in New Jersey, Toronto, Indiana and in Salt Lake City with my nephew, MS Ambassador, Tom Wallisch (he ‘walked’ in his ski boots, me in my Nikes)!I’d like to thank all of our volunteers for everything you do to raise funds for our cause. Fundraising is the grease in the gears of the entire MS Society; this spring, mark your calendars to attend one or all of our exciting events, including our classics Walk MS on April 27th and Bike MS Coast to Coast on May 17th and ever memorable Muckfest MS on June 21st. I hope to see you there!The final thing I would like to share are the many great programs we have in NJ. Whether it is the teleconference series, our self-help groups or educational programs with pharmaceutical companies, there is something for everyone touched by this disease. Being connected is the best way to stay informed!In closing, I want to thank my fellow board trustees; it’s truly a pleasure and an honor to serve with you. And finally, I want to thank and applaud all the people who give their talents and resources to our great cause. Working together, we can achieve our vision of a world free of multiple sclerosis.
Bonnie Higgins Board Chair
CONNECT WITH US ONLINE:New Jersey Metro Chapter www.nationalMSsociety.org/NJM Email: [email protected]
Like us: www.facebook.com/pages/National-Multiple-Sclerosis-SocietyNew-Jersey-Metro-Chapter/117041902295
Follow us: @MSNJMetro
Watch us: www.youtube.com/user/NewJerseyMetro
Production of this newsletter is generously supported by:
4 MS CONNECTION: SPRING 2014
CHAPTER SELF HELP GROUPS MEET AND GREET AND SO MUCH MORE!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. For more information, feel free to contact Lisa T-J at the Chapter at 732-508-4431 or [email protected]. Additional opportunities to meet and greet others are listed below, including online connections, MSFriends, and conference call support groups.
ONLINE PEER SUPPORT CONNECTIONSMS 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 that MS throws at you. Online Peer Connections volunteers have been through a 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 the Online Peer Connections page and search for a peer by clicking http://www.msconnection.org/.
PEER SUPPORT THROUGH MS FRIENDSMS 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, click on this link: http://www.nationalmssociety.org/living-wi th -mul t ip l e - s c l e ro s i s / connec t ion-programs/msfriends-peer-telephone-support/index.aspx. n
5NATIONALMSSOCIETY.ORG | 1-800-344-4867
NEW MS STRENGTH AND BALANCE PROGRAMSCentraState Healthcare Foundation, along with the support of The Northfield Bank Foundation is offering two new MS Strength and Balance programs.The first program is being held at RWJ Hamilton Center for Health and Wellness, 3100 Quakerbridge Road, Mercerville, NJ. The classes are held on Tuesdays and Thursdays from 3:30– 4:00pm. Anyone interested should contact Sharon LaForge @ (609) 584-7600 for more information.
The second program is being held at Princeton Fitness and Wellness Center, 1225 State Road, Princeton, NJ 08540. The classes are held on Mondays from 4:00– 5:00pm and Saturdays from 11:30am– 12:30pm. Anyone interested should contact Sharon Casper @ (609) 683-7888. n
CLIENT TO CLIENT RESOURCESClient-to-Client Resources identifies specific equipment that may be for sale or otherwise available for free through persons who are interested in parting with the equipment. The Chapter is not involved in any negotiations. You can access this information from this link: http://www.nationalmssociety.org/Chapters/N J M / Fi n d - R e s o u rc e s - a n d - Su p p o r t /Resources/Client-to-Client-Resources. n
LIVING WELL WITH MS SPRING 2014 TELECONFERENCE SERIES(Supported in part with funds from Questcor®)
Join us from the comfort of your own phone for informative conference calls on diverse topics of interest to people living with MS. This educational series is free and made available through the collaboration of the following chapters of the National Multiple Sclerosis Society: Connecticut, Greater New England, Long Island, New Jersey Metro, New York City-Southern New York, Rhode Island and Upstate NY. The series is supported in part with funds from Questcor®. Spring session teleconferences will take place April- June 2014, see the schedule below: 4/30/14, 7-8pm - Achieving Optimal Wellness: Exercise and Nutrition5/21/14, 7-8pm - CogniFitness: Memory, Attention and Executive Skills6/11/14, 7-8pm - The Disease Modifying Therapies: Your Treatment OptionsThere is still one teleconference regarding employment related issues:
4/3/14 – 7-8pm – Employment Teleconference Series: Social Security Disability Application Secrets: http://main.nationalmssociety.org/site/Calendar/1916277136?view=Detail&id=324477
To register for any of the above teleconferences, you can register online by clicking on the links above or call 1-880-344-4867. n
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YOGA & RESEARCHIn collaboration with the Kessler Foundation, the MS Society is pleased to announce a new Essex County location:
Yoga for MS – Spring Session Tuesdays, 11:00 am - 12:15pm
April 22, 29 May 6, 13
at
Kessler Foundation 300 Executive Drive, Suite 70 (lower level)
West Orange, NJ 07052
This is not the Kessler Institute.
Please register by contacting Patti at the MS Society office, [email protected], 201-977-6053. There is a suggested $30 contribution fee for participation, but this is not mandatory for registration.
This series is instructed by Diane Speer, an experienced Yoga for MS teacher. Yoga classes are modified so that individuals may perform the movements in a seated or standing position.
In addition to participating in the Yoga class, the Kessler Foundation is seeking volunteers to participate in a Yoga Research Study. The purpose of the research study is to investigate the effectiveness of a 4-week yoga program. The study is designed to research how the practice of yoga can help people improve memory and ability to function better in everyday life. There are 2 visits for written tests - one prior to start
of Yoga, and the second at the completion of the yoga sessions. Whether you are a person with MS or a caregiver, if interested, contact, Angela Smith 973-324-8448, [email protected]
Our thanks to The Peter Jay Sharp Foundation, for providing funding for the Chapter’s Wellness programs. n
EMPLOYMENT & MSDo you have an employment question you would like answered? Are you curious about workplace disclosure, social security benefits, need a reasonable accommodation or are you thinking about returning to work?
If so, the National MS Society has a dedicated employment specialist to answer your questions. Feel free to pose your questions directly to this email address: [email protected]. You can expect to receive a response within 48 hours. n
NEW WEBSITE!The National MS Society has recently made changes to its website (ht tp : / /www.nat iona lms soc i e t y.or g /Chapters/NJM). We are in the process of updating all information in NJ. If you need assistance in finding specific information, please feel free to reach out to the Chapter at 732-660-1005, option 2 or email [email protected]. n
7NATIONALMSSOCIETY.ORG | 1-800-344-4867
RELATIONSHIP MATTERSA WORKSHOP FOR COUPLES LIVING WITH MSWhat: An eight hour workshop offers a lifetime of relationship satisfaction by presenting a proactive approach to MS and your relationship. Activities include group exercises, workbook activities, video-clips and group discussion.When: Sunday, April 6, 2014, 8:30am-5pmWhere: Kershaw Commons, Freehold, NJSpeaker: Debbie Mandelbaum, LCSW. Fee: $30 per coupleMore information: contact Lisa T at the chapter office at 732-508-4431or at [email protected]. n
SENATOR ROBERT MENENDEZ (CENTER) PICTURED WITH MEMBERS OF THE NJ METRO STAFF AND OTHER REPRESENTATIVES OF THE MS SOCIETY AT THE PUBLIC POLICY CONFERENCE
ADVOCACY SPOTLIGHT
2014 PUBLIC POLICY CONFERENCE
The 23rd annual National MS Society Public Policy Conference (PPC) was held in early March; more than 320 MS Activists attended the conference, then went to the Hill to advocate for medical research funding and creation of a separate benefit category for Complex Rehab Technology. There was a visually notable presence with Activists wearing their new orange ties, pashminas and ‘MS Activist’ lapel pins! Approximately 360 Hill meetings were scheduled! Society activists were joined by members of the MS Coalition to advocate with one voice on issues important to people living with MS!
ELECTED OFFICIALS OF THE YEARThe National MS Society awarded its elected officials of the year at the PPC to Bob Menendez of New Jersey as U.S. Senator of the Year, David McKinley of West Virginia as U.S. Representative of the Year, and John Kasich of Ohio as Governor of the year. Menendez’s pick
was in part because of his steadfast leadership to ratify the U.N. Convention on the Rights of Persons with Disabilities. To date, MS Activists have sent 20,000 messages to the U.S. Senate calling for ratification. Rep. McKinley’s award reflected his commitment to medical research through his leadership of the NIH ‘Dear Colleague’ letter, asking colleagues to support higher funding for NIH. He also is the author of the Patient Access to Treatments Act (PATA) to address cost sharing for specialty tiers. MS Activists recently sent over 1300 messages to Congress urging co-sponsorship and passage of PATA in response to an action alert we sent (you didn’t get it? Then click here to sign up!). Finally, Gov. Kasich’s award was based in part on his willingness to fight for Medicaid expansion in Ohio along with a variety of other factors. Menendez and McKinley were able to address PPC attendees at the conference, and Gov. Kasich sent a video message. n
T
8 MS CONNECTION: SPRING 2014
NJM INSURANCE GROUP AWARDS NEW JERSEY METRO CHAPTER WITH $10,000 FOR EFFORTS IN “DNT TXT N DRV” CAMPAIGNNJM is extremely pleased to announce it has achieved its goal of obtaining 50,000 pledges for the Company’s DNT TXT N DRV (Don’t Text and Drive) campaign, an initiative begun in January 2013 in commemoration of the Company’s 100th anniversary.
As promised, NJM donated $1 per pledge ($50,000 total), which was shared among the following New Jersey non-profit organizations: Autism New Jersey; the Community Food Bank of New Jersey; Make-A-Wish of New Jersey; National Multiple Sclerosis Society, New Jersey Metro Chapter; and Special Olympics New Jersey.NJM started operation in 1913 as safety-oriented, regional carrier for workers’ compensation insurance. As the Company grew to offer coverage for homes and personal and business vehicles, an emphasis on safety has been a consistent guiding premise.Forty-one states, including New Jersey, prohibit text messaging while driving. n
IN MEMORY OF ROSE MESSINAThe first floor community room at Kershaw Commons, a supportive housing development in Freehold, was the site of a dedication to the memory of Rose Messina. Rose lived with MS for all of her adult life and passed away in October 2012.
Rose was the inspiration to her son Dan as he chose to have a career in the world of health care. As the COO of CentraState Healthcare System, Dan Messina has played an important role in providing services to people with MS. Dan realizes how his mother influenced him in his career choice, “Through my mother, I learned a lot about the needs of people who live with chronic illness; working to address those needs became second nature to me when I began my career. My mom taught us all to appreciate the important things in life – family and friendships, as they are the foundation of true happiness. Along with my family, I am honored to have this community room dedicated to the memory of my best friend and mother.”
The dedication of the Rose Messina Community Room was made possible with funds granted from The Peter Jay Sharp Foundation, in collaboration with Regan Development and the NJ Metro Chapter. n
KAREN DRZIK (CENTER) AND JIM ROBERTS (2ND FROM RIGHT) ACCEPT DONATION FROM NJM.
MEMBERS OF THE MESSINA FAMILY WITH ROSE FEATURED IN THE PAINTING ABOVE THE GROUP.
9NATIONALMSSOCIETY.ORG | 1-800-344-4867
LIVING WITH MS
CONNECT AT: WWW.NATIONALMSSOCIETY.ORGThe National Multiple Sclerosis Society’s website at www.nationalMSsociety.org connects people like yourself who are living with MS with the information, people and resources that can help you and your loved ones live your best lives. To that end, many exciting changes to the site have taken place to improve your ability to connect to:
INFORMATION
Updated navigation, new content and improved searching help you find what you’re looking for faster.
EACH OTHER
Our growing online community is even easier to access, making it easier for you to share your experience with others living with MS, healthcare providers and MS researchers.
THE MS MOVEMENT
Several new features make joining the MS movement even more possible. These features include: a “My Profile” section where you can
access your profile information, set preferences and track your involvement; a mobile-friendly design that lets you view the site from your smartphone, tablet or other mobile device; and easier-to-read content and accessibility for anyone using assistive devices like screen readers.
YOU TALKED, WE LISTENEDMany of you – people living with MS, friends and family members, event participants, volunteers, donors and professionals – contributed ideas and input toward the new site. You shared what information matters most to you, tested the site as it was developed and made suggestions – you even helped get rid of a few “bugs.” Now, the next generation of www.nationalMSsociety.org is designed to help you:
n Find relevant information, programs, services, and resources;
n Connect with others, share information and get support;
n Participate in events, advocate for change, raise awareness, champion research, and discover more ways to engage.
Take some time today to tour the new site at www.nationalMSsociety.org, and let us know what you think. If you happen to find a bug that snuck through the cracks, let us know that too. n
MS CONNECTION: SPRING 201410
SAVE THE DATESAVE THE DATE FOR A SEMINAR IN NEW BRUNSWICKWhat: What’s New in MS? An Educational Seminar to review diagnosis, treatment and symptoms of MS.When: Monday May 5, 6-8pm; light refreshments will be served.Where: Rutgers- Clinical Academic Building, 125 Paterson Street, New Brunswick, Room 1302.Registration: online at: http://m a i n . n a t i o n a l m s s o c i e t y . o r g / s i t e /Calendar?view=Detail&id=330694 or call 1-800-344-4867. n
WELLNESS FOR CLIENTSThe New Jersey Metro Chapter offers fall and spring sessions of Wellness classes. Yoga, tai chi and aquatics classes are modified so that individuals may perform the movements in a seated or standing position; the aquatics class does have a chair lift. The classes are held in a variety of locations throughout northern and central New Jersey; caregivers are welcome to participate with the person who has MS. Spring classes are in full bloom and you can still register! New classes have been added! For more information about the Wellness classes, contact the Society’s Information & Referral Center at 1-800-344-4867. Although not mandatory, there is a suggested donation of $30.This program is supported in part with funds through the Peter J. Sharp Foundation. n
CHAPTER PRESIDENT JIM ROBERTS POSING WITH LITTLE SIDNEY, ONE OF OUR YOUNGEST WALK MS FUNDRAISERS
FAMILY MEMBERS BRYANT, JAMIYAH AND DIAMOND AND ENJOYING THE FUN OF CHASE AWAY THE BLUES ON SUNDAY, MARCH 9. n
CHASE AWAY THE BLUESA wonderful time was had by all who attended the chapter’s Chase Away the Blues event on March 9, 2014. Below are two photos from this always-popular social program!
NATIONALMSSOCIETY.ORG | 1-800-344-4867 11COMPUTER OUTREACHThe New Jersey Metro Chapter has a computer outreach program designed for people with MS who are isolated from family, friends and neighbors. This could be a person with MS that resides in a nursing home or a person with MS with limited financial resources who is also alone and looking to connect with others. For these qualified people, the Chapter has laptops, tablets and some desktops.
Are you interested in donating equipment? We are looking for computers, laptops, tablets and other computer related equipment to be donated to our cause.
Do you have IT experience and are good with fixing computers and loading programs? Do you want to volunteer for our “Geek Squad?”
For more information contact Lisa at [email protected] or at 732-508-4431. n
KEEP SMYELIN’Keep S’myelin is a colorful, engaging, informative, and reassuring newsletter to help children and their parents talk and learn about MS together. Each issue is filled with stories, interviews, games, and activities that highlight a specific topic related to MS, as well as a special section just for parents. To receive this newsletter, contact Lisa at the Chapter at [email protected] or at 732-508-4431. n
NJ METRO CHAPTER CALENDAR OF EVENTS
Walk MS April 27, 2014
walknjm.nationalmssociety.org
Spring Golf May 5, 2014
www.nationalMSsociety.org/NJM
Bike MS: Coast the Coast May 17 & 18 2014
bikenjm.nationalmssociety.org
MuckFest MS June 21, 2014
www.nationalMSsociety.org/NJM
Summer Golf July 21, 2014
www.nationalMSsociety.org/NJM
Challenge Walk September 5-7, 2014
www.nationalMSsociety.org/NJM
Bike MS: Hops to Hops September 14, 2014
bikenjm.nationalMSsociety.org
Musical Moments September 17, 2014
www.nationalMSsociety.org/NJM
Bike MS: Country Challenge September 20 & 21, 2014
bikenjm.nationalmssociety.org
Forks & Corks: A White House Dinner September 27, 2014
www.nationalMSsociety.org/NJM
Women on the Move Luncheon November 14, 2014
www.nationalMSsociety.org/NJM
MS CONNECTION: SPRING 2014
WE WANT YOU!!! WE NEED YOU TO RIDE, VOLUNTEER OR INSPIRE OTHERS TO JOIN US!
Come be a Part of the Jersey Shore’s Premier Cycling Event!
The Bike MS Coast the Coast rides from Monmouth University on Saturday, May 17th. With ride lengths of 25 & 50 mile for the beginner and casual cyclists and longer routes of 85, 100 and 170 miles to Cape May for the more experienced cyclists, we offer a route length for everyone! Virtual participation is an option too, so that all chapter members can participate, inspire and encourage others to ride for them or with them. Whatever ride length you choose, this event is fully supported with rest stops every 10-12 miles, snacks, SAG vehicles, medical assistance, mechanical support
and return transportation. We finish our rides with barbecue lunches and hot dinners for celebration with family and friends. All you need is the desire to “Coast the Coast” for a great destination: A world free of MS! Volunteers are a key to the success of this event. There are volunteer positions at event check-in, rest stops, entertainment, photographers and finish lines. We need you to help us keep our signature Bike MS exciting and fun! Another important element is corporate sponsorship. Our cyclists and volunteers are the perfect audience if you would like to market to health and wellness-minded people. We welcome the opportunity to discuss the available opportunities! Please help us make this event a success! Register on-line as a participant or a volunteer at: bikenjm.nationalmssociety.org or call us at 732-660-1005. n
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CYCLISTS AT THE 2013 BIKE MS: COAST THE COAST
OUR ROCKSTAR VOLUNTEERS!
NATIONALMSSOCIETY.ORG | 1-800-344-4867 13
MuckFestTM MS New Jersey, a mucky rompof pure athletic hilarity, full of outrageousobstacles & mud.
Saturday, June 21, 2014NEW JERSEY
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WALK MSSunday, April 27th
Walk MS is the rallying point of the MS Movement, a community coming together to raise funds and celebrate hope for the future.
We have 12 accessible and unique walk sites suitable for all ages and abilities. If you are unable to make the event, please consider becoming a Virtual Walker.
Visit walknjm.nationalmssociety.org to register or for more information.
There are plenty of great volunteer opportunities at all sites! Please call Emily at 732-660-1005 ext. 44322 or email at [email protected] to learn more.
NJ METRO WALK MS SITESBergen County - Ridgefield Park - 5K Fun Run! The New Overpeck County Park
Essex County - Roseland Mack Cali
Hudson County - Jersey City Liberty State Park
Hunterdon County - Flemington Liberty Village Premium Outlets
Mercer County - Hamilton Steinert High School
Middlesex County - North Brunswick Babbage Park at Parsons School
Monmouth County - Belmar/Lake Como Bar Anticipation
Monmouth County - Lincroft - 5K Fun Run! Thompson Park
Morris County - Roxbury Horseshoe Lake Park
Ocean County - Seaside 1601 North Ocean Ave
Union County - Clark Oak Ridge County Park
For more information call: 732-660-1005
Walk MS Manager, Julianne Falgiano at [email protected]
Director of Teams & Corporate Development: Alexis Stone at [email protected]
ARE YOU UP FOR A CHALLENGE?
15NATIONALMSSOCIETY.ORG | 1-800-344-4867
Our NEW 5K Fun Run location will be at the Lincroft Walk MS site at Thompson Park. This will be a timed run with a shotgun start.
This year, the 5K in Ridgefield Park will be a USATF Certified Grand Prix Run!
All participants are able to register for either of the 5Ks as part of a Walk MS team and stay for the duration of the Walk MS event to follow.
WALK MS: 25K FOR 25 YEARS | A MILESTONE CELEBRATION EVENT! Sunday, May 3rd
We are happy to announce the 25th Anniversary of Walk MS for the New Jersey Metro Chapter!
In celebration of this milestone, we are featuring a special Walk this year on Saturday, May 3rd at Allaire State Park. We are rallying up our friends, families and supporters to join us as we look back over the years and the progress we’ve made, and to show the power of our connections.
Join us as we walk hand in hand through this 15.5 mile site. We are up for the challenge and hope you are too! Whether you recently started participating or have been for years, every effort, every year, matters. It is because of you, that day by day, we are moving closer to a world free of MS.
The National MS Society mobilizes people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Email Julie at [email protected] for more information.
CHALLENGE WALK MS: CAPE COD SEPTEMBER 5-7 2014
3 days. 50 miles.connect to end multiple sclerosisregister now: challengewalkMS.org or 1.800.344.4867