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CONNECTION MOVING TOWARD A WORLD FREE OF MS Fall 2010 Upstate New York Chapter

Twenty-five Years, Millions of Miles, One Destination: A World Free of MS

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hat is your challenge? Is it losing weight? Finding a new job? Or adjusting to life with MS? Over 340 cyclists, volunteers and committee members accepted our challenge by supporting Bike MS once again in 2010. Cyclists at the Follow the Foothills ride in Glens Falls took to the roads on a gloomy and rainy morning. They made the best of it and pedaled to the finish under a sunny sky. The 2-day Finger Lakes Challenge ride at Keuka College challenged riders to scale monumental hills, but the reward at the top was a beautiful view and breathtaking scenery. The 25th Anniversary ride also featured a fantastic fireworks display after the event on Saturday night. Between the two events, over $177,000 was raised to fight MS.

This year marked the 25th anniversary of Bike MS for the Upstate New York Chapter; twenty-five years of raising funds to find the cause and a cure for MS. Millions of miles have been ridden by dedicated cyclists; hundreds of hours have been donated by volunteers; after 25 years, we’re still working toward our goal. Now it’s your turn to accept the challenge. We need what you have to offer. Whether you walk, ride, ask boldly for support, or advocate on behalf of those who can’t, every action you take brings us closer to ending MS. Register today for Walk MS or Bike MS by visiting our website at www.msupstateny.org. Together, we can ensure we don’t have to commemorate a 50th anniversary for Bike MS.


2010 Chapter Board Members Upstate New York Chapter www.msupstateny.org www.nationalmssociety.org email: michelle.prue@nmss.org

Chapter Offices

Officers

Steven V. Modica, Esq....................................... Chair Thomas Sanderson...................................Vice Chair Christine Sisto Mertes..............................Vice Chair James J. Smith.............................................Secretary Richard Page................................................ Treasurer

Directors

Albany Office 421 New Karner Road, Suite 6 Albany, NY 12205-3838

Binghamton Office

457 State Street Binghamton, NY 13901-2399

Buffalo Office

4245 Union Road, Suite 108 Buffalo, NY 14225

Rochester Office

1650 South Avenue, Suite 100 Rochester, NY 14620-3901

Syracuse Office

P.O. Box 813 Fayetteville, NY 13066

All offices can be reached by calling 1.800.FIGHT MS (1.800.344.4867) Clinics/Health Centers

Visit our website for a list of National MS Society affiliated clinics

Editor - MS Connection

Robert W. August Susan F. Bartkowski, Esq. Kathy Birk, MD Daniel A. Clifton Patricia Dow Daniel J. Farberman Karen M. Gallina John Johnson Ryan C. Jones Richard G. Kazel Bryan Kenny, CPA Gerald Leonard Richard J. Mengel, CPA James E. Metzler, Esq. Michael F. Miller, P. E. Thomas D. Muller Diane M. Nuccitelli Randy L. Saltzman Richard Satran, MD Michael C. Tylwalk, Jr. Karen L. Waldron Eric C. Webber Eric W. Zaenglein, CPA

Michelle Kraft

Executive Management Team

Stephanie K. Mincer, LMSW, MSSMC – President and CEO Barbara J. Bennett, CPA - Vice President, Finance Valerie King Hoak - Vice President, Chapter Resource Management

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Thanks Once Again to the Johnson Foundation

Upstate New York Chapter’s 2009 Annual Report is available on the Chapter website. If you would like to learn about programs, fundraising events and view financial highlights please log on to www.msupstateny.org and click on the “About This Chapter” section. If you would like a copy sent to you please call 1.800.FIGHT MS.

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o to our website, www.msupstateny.org, and click on the VOTE NOW button. Pepsi Company is giving away grants through the Pepsi Refresh Project and we hope to win $250,000 for MS research and financial assistance for people living with MS. Every month, non-profit organizations submit “ideas” to the Pepsi Refresh Project and 1,000 of these are awarded the chance to win up to $250,000. Check out our website in the month of December, click on the VOTE NOW button and vote for our idea; find a cure for MS. If you don’t see us in December, be sure to look in January. Be sure to vote everyday and tell your friends and family to do the same. You can make a difference in the fight against MS.

Demonstrating Your Support and Generosity

In the fourth quarter of every year, many of our generous supporters review their investment portfolios to determine specific strategies to reduce capital gains, take advantage of valuable deductions and continue to support their most favored charities. If you are considering stretching your giving power by making a gift of stocks, bonds or property to the Upstate New York Chapter, we sincerely thank you. For more information on year end gifts or to make a cash donation, please contact Valerie Hoak, Vice President of Chapter Resource Development at 585-271-0805. Your kindness is deeply appreciated.

THE UPSTATE NEW YORK CHAPTER’S ANNUAL MEETING Congratulations to the 2010 Award Winners

Program Volunteer of the Year Award...................Elaine Vanatta Legion of Courage............................................Kathy Weider, SSJ Norman A. Cohn Hope Award..................................Eva McDaniel Corporate Sponsor of the Year Award...........................Wegmans

TOLL FREE NUMBER 1 800 344 4867

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CHAPTER NEWS

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he Upstate New York Chapter commends the Johnson Foundation for their continued support of Doug Brown of Jamestown and his Walk MS team, Team DJ. The Johnson Foundation donates an annual gift in support of research, education, advocacy and local programs which enhance the quality of life for people with multiple sclerosis. Their generous contribution of $5,000 is deeply appreciated.

Vote For a Cure for MS and help win $250,000 for the Upstate New York Chapter


Going the Extra Mile by Stephanie K. Mincer, LMSW, MSSMC - President & CEO CHAPTER NEWS

Summer is often a time to sit back, relax and rest. But when you are charged with working to create a world free of MS, there is much to do and the National MS Society has been forging ahead, as have many of you. Nearly 500 people participated in our Golf Fore MS event on June 28th or in the Follow the Foothills Bike MS event in the Adirondacks on July 10th or the Finger Lakes Challenge on the shores of Keuka Lake on August 7th and 8th. These events combined raised approximately $250,000 for local programs and national MS research. The National MS Society home office has also been busy. On August 18th the National Delegate Assembly voted to approve the National MS Society’s Strategic Response for 2011–2015. This report represented the hard work of hundreds of staff and volunteers from across the country – and reflected the input from nearly 10,000 individuals from the MS Movement. It captured the major themes that emerged from the outreach process, set the course for the role we will all play within the MS Movement and established what we intend

CORRECTION: This is Marc Hamerski, a Society scholarship winner, who is attending Allegheny College this fall. He was incorrectly identified last issue. We apologize for the error.

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to do about MS over the next five years. Here are the five goal areas we intend to focus on: • We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever. • We develop, deliver and leverage resources to enhance care for people with MS and quality of life for all those affected by the disease. • We are leaders in the worldwide MS movement, mobilizing millions of people to do something about MS now. • We are activists. • We develop and align human, business and financial resources to achieve breakthrough results. The Upstate New York Chapter will now form committees of staff, members and volunteers to develop a strategic plan that will help achieve these goals. As an organization we will be working at the local, regional, and national level to find new therapies to stop disease activity in relapsing and progressive forms of MS, and reduce personal and financial hardship for those most severely impacted by the disease. We will work so there will be access to more affordable quality healthcare. And, we will raise funds for programs that will improve the quality of life for those living with MS. The National MS Society will be recognized as an organization of choice for people with MS and those who want to join the MS Movement! With your help we will achieve these goals. If you are interested in getting involved and joining the movement, please contact us at michelle.prue@nmss.org.

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“BEST OF WNY”

To reserve seating call Stephanie Bradshaw at 518-464-0850 or register online at www.msupstateny.org Tickets: $75 TOLL FREE NUMBER 1 800 344 4867 5

DEVELOPMENT

Magician Mike Dedee presents Barbara Bennett, Vice President of Finance, with a check representing the proceeds from Magic Fest 2010.  This volunteer driven event was held at the German House in Rochester in September.

At this year’s annual “Best of WNY” 2010 Party, hosted by the Buffalo Spree Magazine at Shea’s Performing Art Center, it was announced that the National Multiple Sclerosis Society Upstate New York Chapter would be the recipient of the proceeds of this event. Each year a different Buffalo charity is honored at the annual cocktail party. The donation is restricted to the Buffalo metropolitan area and will be used for a client symposium on urologic and intimacy issues. The Chapter thanks the Buffalo Spree Magazine for their kindness and generosity.


NIK LITE TO HELP “BASH” MS

DEVELOPMENT

The fabulous band, Nik Lite, will be the featured entertainment at this year’s National Multiple Sclerosis Upstate New York Chapter -- MS Gala and Bash on Saturday, November 6th at the Rochester Plaza Hotel. This annual gathering will host supporters and clients at the area’s premier event to raise awareness and funding for multiple sclerosis research and programs. The Gala will not only feature dinner in the Plaza ballroom, but immediately following, the room will be transformed to present a “Bash” with Nik Lite providing music for dancing and enhancing your night of fun. For more information or to purchase tickets, contact Kristy Mazurek at 716-634-2573 ext 18.

Thank you to all the generous sponsors who made Golf Fore MS a success! Pepsi Beverage Company Fibertech Networks The Summit Federal Credit Union KeyBank Boylan, Brown, Code, Vigdor & Wilson Lotze Insulation Design, Inc. QCI Asset Management Inc. Trident Precision Manufacturing, Inc. Lake Beverage

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The Bills, 97 Rock and WIVB-TV team up to “tackle” MS The Buffalo Bills are back on the field and once again, the National Multiple Sclerosis Society Upstate New York Chapter is launching its annual “Team Up 4 MS” campaign, sponsored by WIVB-TV Buffalo News Channel 4, and WGRF-FM 97 Rock. With the help of WIVB-TV News 4 anchor Jacquie Walker, 97 Rock’s Larry Norton and our player partner, wide receiver #83 Lee Evans of the Buffalo Bills, we are working to meet our goal of raising over $25,000 to support MS programs and research. Here’s how it works: Participants can make a pledge for $3,$5,$7, $10 or any amount of their choosing per sack or per touchdown. At the end of the 2010-2011 Buffalo Bills Season, we will tally up the number of quarterback sacks and touchdowns made by any player on the Buffalo Bills. The participant will then fulfill their pledge per sack/touchdown. For example, a total of ten touchdowns and five sacks with a pledge of $3 results in a total pledge of $45. Be part of the Bills action by pledging your support now for the 2010-2011 Team Up 4 MS campaign. To learn more about Team Up 4 MS or to make a pledge, contact Christy Missico at 716.634.2573 ext 19 or e-mail christy.missico@nmss.org.

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It’s Annual MS Symposium Time

Calling all Scrapbookers and Papercrafters!

Beat the winter blues and join us for the 1st Annual Paper Craft and Crop to Stop MS on January 15th in Rochester at the Al Sigl Center (1000 Elmwood Ave. Door #5). This day long crop will feature raffle prizes, a chinese auction, and demonstrations/classes with plenty of table space for you to spread out your supplies and scrapbook all those pictures from 2010 or make cards for the new year! All of the proceeds from this event will benefit the the Upstate New York Chapter. Please register online at www.msupstateny.org!

Program Reminder: 

Please be considerate and register for programs you wish to by following the registration directions in mailings, email blasts and on flyers.  If you are unable to attend a program after registering, please call to cancel if at all possible.  This helps us reduce waste of resources and may allow someone on a waiting list to attend.  Thank you for your help!

Upstate New York Chapter

“Managing Your MS: An Update On Treatment Options”

Guest speaker: Dr. Aamir Rasheed, Neurologist Thursday, November 11, 2010 6:00 p.m. to 8:00 p.m. Holiday Inn Arena, Binghamton, New York

Light Refreshments. For more information and to register, please call 1.800.344.4867 Space is very limited, register today! This program made possible by an educational grant from Teva Neuroscience.

TOLL FREE NUMBER 1 800 344 4867

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PROGRAMS

8th Annual Multiple Sclerosis Symposium - Albany (Hosted by The Center for Disability Services and The National MS Society Upstate New York Chapter) October 18, 2010 • 9:00 a.m. - 3:00 p.m. Albany Marriott Hotel, 189 Wolf Road, Albany, NY  518.458.8444 Registration Fee (Fee includes lunch) $10.00 – Individuals w/MS, Friends and Family Members • $50.00 – Professionals For more information call 518.944.2107  3rd Annual Hudson Valley Multiple Sclerosis Symposium - Fishkill (Hosted by The National MS Society Upstate New York Chapter) November 13, 2010 • 9:00 a.m. - 3:00 p.m. Holiday Inn • 542 Route 9, Fishkill, NY 12524 No Fee • For more information call Lori Rhodes @ 518.464.0924


Family Fun Fall Festival Weekend

The National Multiple Sclerosis Society Scholarship Program The 2010 scholarship application process will begin October 2010 and close on January 15, 2011. Information about the process and the application form is available at www. nationalmssociety.org/scholarship during this time. Those eligible to apply include:

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oin us for our annual, overnight Family Fun Weekend and enjoy the serenity and scenic view overlooking Conesus Lake while participating in the many activities offered.  We will be cooking, crafting, enjoying a variety of wellness programs, playing games including a Euchre tournament, Wii games, a movie on the big screen and socializing.  Come out and reconnect with old friends and make some new ones in this family friendly atmosphere. Singles, couples and families with children are all welcome!  You can join us for the overnight or just come and enjoy the day.  The weekend will be November 20 and 21 at Camp Stella Maris; just south of Rochester.  To register or for further information on this fun getaway, please call 1.800.344.4867, press option #1.

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• High school seniors who have MS and will be attending an accredited post secondary school for the first time. • High school seniors who have a parent with MS who will be attending an accredited post secondary school for the first time. • High School (or GED) graduates of any age who have MS and who will be attending an accredited post secondary school for the first time. • High School (or GED) graduates of any age who have a parent with MS and who will be attending an accredited post secondary school for the first time. Applicants must also either be a United States citizen or legal resident who plans to enroll in an undergraduate course of study at an accredited two-or four-year college, university, or vocational-technical school located in the United States. Applicants must be enrolled in at least six credit hours per semester in course work leading to a degree, license, or certificate. For more information or an application, please call 1.800.344.4867, press option #1.

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What a Difference a Day Makes! MS Service Day 2010 The Chapter’s heartfelt thanks to all of the volunteers who rolled up their sleeves to assist people affected by MS during MS Service Day. More than 75 volunteers participated at 18 homes doing chores, yard work, painting and minor home maintenance projects that persons with MS often can no longer perform or find difficult to manage. These volunteers

helped people improve their homes and quality of life, and, for some, might even allow them to remain in a safe and familiar environment. The work of our volunteers during MS Service Day made a real difference in the lives of those with MS.

Planting a pleasant area off a homeowner’s deck.

Volunteers setting patio blocks.

Thanks for a great job!

The MS Achievement Center at Unity Health is a program of Unity Health System and an affiliated program of the National Multiple Sclerosis Society Upstate New York Chapter. This program serves individuals with mid- to late-stage MS, as well as participants with other neurological diagnosis. The average age of participants is 40 to 50 years old. This program was the second of its kind in the United States. Located in the community of Gates near Rochester, the Center is open Monday through Friday and accepts private pay, Medicaid, and some long term insurance plans. The Center offers a full range of on-site nursing services, daily exercise programs, social work, medication administration, counseling, physical and occupational therapy, and recreational activities. Visit www.unityhealth.org or call (585) 368-6470 for more information or to schedule a tour. TOLL FREE NUMBER 1 800 344 4867

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LIVING WITH MS

LIVING WITH MS

A WHEELcHAIr AT THE AIrpOrT? YOU BET! By SUzaNNE BRaTcHER

moving more and more slowly. No matter how hard I pushed myself, I couldn’t pick up the pace. As I became increasingly frustrated, I realized I wasn’t limping at all: my right leg was dragging. My left leg was doing all the work, and only the bag rolling on my right was keeping me from falling over. I made that flight—just before the gate agent closed the door. As soon as I got home, I went to see my doctor a third time and insisted she find out what was going on with my leg. Two more doctors, a physical therapist and an MRI later, I had my diagnosis: secondary-progressive MS.

Airports (or at least the ones I know) don’t feature on-staff neurologists or MRI machines. But yet, the Phoenix airport was where I discovered I had MS. I had been limping for a couple of years, which my doctor had chalked up to overuse and sciatica. In March 2007, my experience at the airport gave me the push I needed to investigate what, exactly, was wrong with my right leg. That spring my daughter and I were planning her wedding long distance. I was on my way home and sitting at the gate when they announced our terminal had been changed. I’m an experienced hiker with seven trips into the Grand Canyon, so that little walk didn’t sound like much. But when I stood up, I felt like I was midpoint on the Bright Angel Trail, climbing out of the Canyon. As I walked through the airport, I found myself

Three years later, I’m still walking. These days I use two hiking poles to keep my balance and compensate for the right leg that still drags. I don’t own a wheelchair (yet), and I don’t use them in stores. Airports, however, are a different matter. These days air travel depends on physical stamina, excellent balance and the ability to walk quickly. A wheelchair actually allows me to focus less on my MS in an airport. Then there are the perks: getting through security more easily, being seated first on the airplane and meeting the interesting, courageous folks who push those wheelchairs. For my money, it’s the only way to fly! Suzanne Bratcher currently lives in Guam. For more on traveling with MS, visit our “Travel and Recreation” page at nationalMSsociety.org/travel.

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NEWLY DIAGNOSED NEWLY DIAGNOSED

HAVE A QUESTION?

Answers when you need them. Dial 1-800-344-4867. Some 200,000 callers a year dial this number. Regardless of why they call, they tap into a network linking them to the chapter of the National MS Society that is nearest to them (the phone company cleverly does this) and to a vast database of resources managed by our Information Resource Center, or the IRC, in Denver, Colo. One phone number works for the entire country. If you should call after hours, you’ll be asked to leave a message. But if you have an emergency, don’t wait. Call 911 right away — and plan to get in touch with us as soon as the immediate problem has been resolved. No hablan Inglés? Choose Spanish — or other languages as needed. Vamos a encontrar a alguien que le ayude. What happens when you dial 1-800-3444867? You might be calling to find out about one of our educational programs, a trip or an outing, or our Bike MS and Walk MS events. You might want to volunteer. Or you might be calling for assistance

— the co-pay on a wheelchair or ways to fund home modifications. You might need someone to talk to about the changes MS is making in your family life or you might need a referral to an MSsavvy health-care professional. You’ll get help from an MS Navigator™ — a trained human service professional, whether your call is answered here or at the national center. MS Navigators undergo comprehensive training to answer questions on just about anything you might need to know about living with MS. The central database has links to national, state and local resources, which cuts down on paper chases and endless phone calls. More than just the facts “The system is here to help people navigate the challenging waters of MS so they get what they need, when they need it,” said Nancy Law, the Society’s executive vice president of Programs and Services. “Our mission includes emotional support,” added Lisa Custy, MSCIR, associate vice president of the IRC. “We don’t give information in a vacuum.” Information is a two-way street, Custy added. Chapter staff regularly update local and area resources. If you’ve discovered a resource that would be helpful to other people with MS, call us about it. Sooner is usually better “The sooner people call us when there’s a problem, the more likely that it can be resolved,” Law added. “Waiting until things are dire — until an eviction notice is on the door — may make it harder. But whenever you call, please know the Society is here for you.” TOLL FREE NUMBER 1 800 344 4867

TOLL FREE NUMBER 1 800 344 4867

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The Chapter Thanks the Bike MS 2010 Sponsors

Teva Neuroscience, Inc. EMD Serono, Inc. Excellus BlueCross BlueShield Capital Management Services, L.P. West Mountain Ski Resort National Grid Partners and Napier Full Moon Vista Bike & Sport Tops Friendly Markets, LLC Starbucks Coffee Company U-Haul International, Inc. Bert’s Bikes & Fitness Lamar Advertising Plaine and Son

Panera Bread Sam’s Club Heluva Good! Park Ave Bike Shop Crystal Rock Holdings, Inc. Saratoga Amateur Radio Association Downtube Bicycles & Fitness Empire Ambulance Service Clif Bar & Company Road ID, Inc. Monks’ Bread Trailblazers Bike & Sport Wayne County Amateur Radio Association

Bike MS: Finger Lakes Challenge Top Fundraisers Carolyn Argust Fred Corey Michael Asselta Kenneth Hinman Ken Buschner Helen Zamboni James Andolina Beth Graf Richard De Asis Steven Moses

Top Teams

$ 6,980.13 $ 3,810 $ 3,455 $ 3,272 $ 3,036 $ 2,628 $ 2,500 $ 2,265 $ 1,600 $ 1,582

MS Miles For Mariann $ 22,866.13 Keuka MS Team $ 9,571 Vintage Raiders $ 5,645 WWW $ 4,901 Team Sessler $ 4,670 Team Everett $ 4,572 Team Pastel $ 4,380 Jest Cycling $ 4,046 Team Copaxone $ 3,897.50 DeCadence $ 3,822

Volunteer Driven Events Raise Funds for MS Name of Event

County Amount

Buffalo Spree Events and Silent Auction VFW Post #6083 Drive for the Cure Golf Tournament Webster Police 1000 Club PBA Annual Charity Golf Tournament Saratoga County Deputy Sheriff’s PBA 3rd Annual Red & White Golf Tournament/Benefit Success over MS - Rachel Thome Ingram Micro Inc. Philanthropic Committee - Dress Down Day Magic Fest 2010 The Stoney Creek Dressage Schooling Show 2010 T.M. Design of Rochester Corp. Neighborhood Garage Sale- Greenbriar Drive Dept. Assoc. Ladies Auxiliary Patriarch Militant 2009-2010 Project for MS Longboard Event

Erie Chemung Monroe Saratoga Monroe Erie Monroe Ontario Monroe Monroe Monroe Ontario

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$ 8,904 $ 6,884 $ 4,737 $ 3,500 $ 1,111 $ 1,000 $ 846 $ 450 $ 368 $348 $ 300 $ 132


Thank You to Our Walk MS Sponsors Walk MS would not be possible without our fantastic community partners. Please patronize these businesses who support the National MS Society. Presenting Sponsors EMD Serono Crystal Rock Water Panera Bread Mission Possible Sponsors New York Central Mutual Insurance Hudson River Bank and Trust Foundation First Niagara Bank Buffalo Bisons AllPro Parking New York Central Mutual Insurance Teva Neuroscience Wegmans Movement Sponsors Sahlen’s Subway ONE HSBC Plaza Giant Food Mart Ryder New York Institute of Massage Lockport Locks and Erie Canal Cruises

Contributor Sponsors Advantage Federal Credit Union Catalyst Direct Clough Harbor and Associates Paetec SRC Monroe Wheelchair Excellus NYRA CapitalCare Medical Group The Views Enterprise Rent-a-car Met Life Empire Neurology Simmons Rockwell Columbian Financial Pittsford Federal Credit Union Westside Medical Faxton-St. Luke’s Pure Protein Biogen Idec Media Sponsors Kix County 96.5 & 100.3 Lamar Clear Channel Radio

Top Walk MS Individuals Sam Berns Guy Berberich Karen Waldron Joy Toppses Jeffrey Galm Thomas Jewett Dave Giunta Doreen Poole Shalyn Docous Karen Morano

Top Walk MS Teams

$ 20,374 $ 16,655 $ 14, 683 $ 13, 205 $ 9,053 $ 8,087.50 $ 6,294 $ 5,773.80 $ 5,510 $ 5,278

Shooters $ 21,751 Northmarq Capital $ 20,399 Paving The Way To A Cure $ 19,083 NYSP Troop K $ 17,693 Waldron’s Walkers $ 17,113 Gods Team $ 15,050 Team DJ $ 12,002.63 Team Nick and Friends $ 10,342 Kathy’s Crew, Kathy’s Crew 2 & Nazareth College $ 9,784 NEW YORK STATE MULTIPLE SCLEROSIS LICENSE Lopers for Lisa $ 9,632.86PLATE

The first ever multiple sclerosis license plate in the country was unveiled six years New York State. The plate allows consumers to support MS-related research, raise awareness for MS, and show public support for finding a cure for MS. Proceeds fr sale and annual renewal fees for the custom plate are allocated directly to MS rese once DMV production costs are met.

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New York State Multiple Sclerosis License Plate

he first ever multiple sclerosis license plate in the country was unveiled six years ago in New York State. The plate allows consumers to support MS-related research, raise awareness for MS, and show public support for finding a cure for MS. Proceeds from the sale and annual renewal fees for the custom plate are allocated directly to MS research once DMV production costs are met. License plates are available statewide, and can be ordered online at www.nysdmv.com, by calling the Custom Plates Unit at 1.518.402. 4838, or at local Department of Motor Vehicles issuing offices.

License plates are available statewide, and can be ordered online at www.nysdmv. by calling the Custom Plates Unit at 1.518.402.4838, or at local Department of Mo Vehicles issuing offices.

TOLL FREE NUMBER 1 800 344 4867

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RESEARCH

rESEArcH

STUDY MAY LEAD TO INDIVIDUALIzED TrEATMENT

The study was funded in part by the National MS Society. RESEARCH

For unclear reasons, a significant number of people with MS do not benefit from interferon therapy, but it can take months or even years to discover this. Since earlier treatment has been linked to better outcomes, being able to predict whether someone will respond to interferon could avert useless treatment and potentially improve results.

for the possibility that we will be able to tell someone before starting treatment if it will work,” said Dr. Steinman.

LOW-DOSE NALTrExONE MAY IMprOVE QUALITY Of LIfE

Most people with MS experience stress, at least sometimes. A recent pilot clinical trial found that low-dose Naltrexone (LDN) may help. LDN is FDA-approved to treat opioid and alcohol addiction. At significantly lower doses, it has been prescribed as a treatment for certain diseases, including MS.

A study published in Nature Medicine (March 28, 2010) points the way to an answer why some respond to treatment and others don’t. Dr. Lawrence Steinman of Stanford University and Dr. Chander Raman, of the University of Alabama at Birmingham tested in mice their idea Up until now, there has been very little clinical that response to interferon might depend on study of LDN’s usefulness for people with which types of cytokines (immune messengers) MS. Dr. Bruce Cree, Dr. Douglas Goodin, were leading immune attacks. They found that and colleagues at the MS Center, University interferon reduced MS-like symptoms in mice of California at San Francisco, conducted a whose experimental disease had been produced study of 60 people with MS. by T helper 1 cells, but worsened disease when it was “Being able to predict Participants received LDN caused by T helper 17 cells. whether someone will for eight weeks and inactive for eight weeks with The team then checked blood respond to interferon placebos one week free of treatment in samples of 26 people with could avert useless between. MS and found they could treatment and The investigators found that differentiate between those who did and didn’t respond to potentially improve LDN significantly improved some measures of quality interferon, based on patterns results” of life—specifically, mental of cytokines. health, pain and self-reported cognitive function. Larger studies will be needed to confirm the However, they found no impact on symptoms study’s findings before they will be useful in the such as fatigue, bowel and bladder control, clinic. “The data provides a strong foundation sexual satisfaction or visual function.

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rESEArcH RESEARCH

The investigators emphasized that the results did not support the use of LDN instead of proven MS treatments, but they do suggest that it may relieve certain MS symptoms, and that larger studies may be warranted.

who initially tested negative for EBV, but who acquired the virus during the follow up, developed MS. Dr. Ascherio and colleagues concluded that MS risk increases significantly following EBV infection.

“From a practical point of view, preventing EBV WHAT cOMES fIrST— infection is difficult,” Dr. Ascherio said. “Most people are exposed to it in childhood. We do EpSTEIN-BArr Or MS? know that people who have “There’s pretty strong a stronger immune response Virtually all people with EBV are more likely to MS are also infected with evidence that being to get MS. There’s also pretty Epstein-Barr virus (EBV), infected with EBV in the strong evidence that being but like the chicken and teens or later is a risk infected with EBV in the the egg, scientists did not teens or later is a risk factor factor for MS” know which came first. Two for MS.” new studies are adding to an increasing body of evidence that shows a The Harvard results were supported by a possible role for EBV, a herpes virus that can study in Spain, where researchers at the cause several disorders, in the development of Hospital Universitari Vall d’Hebron, Barcelona, MS. reported that an immune response to a protein associated with EBV was increased in people In the first study to look at whether EBV with MS compared with siblings who did not infection preceded the clinical onset of MS, have MS. [Multiple Sclerosis 2010: 16(3):355Dr. Alberto Ascherio, of the Harvard School 358] of Public Health, and colleagues showed that in a sample of 305 people with MS found in The study found that siblings showed signs of U.S. military databases, an EBV-positive blood having been infected with a number of viruses. test came before MS diagnosis. [Annals of The only marked difference was their immune Neurology, January 20, 2010] “The results response to EBNA1, a viral protein associated strongly suggest that EBV infection increases with EBV. These were significantly higher in MS risk,” said Dr. Ascherio. people with MS compared to their unaffected At the start of the study, only 5% of the participants, including the control group, tested negative for EBV. None of the people who tested negative for EBV during the follow up developed MS. In contrast, 10 people

siblings. More research is needed to find the mechanisms underlying the connection between EBV and MS, and a way to put the information to use. TOLLNUMBER FREE NUMBER 1 800 4867 15 | 7 TOLL FREE 1 800 344344 4867


FREE MATTER FOR THE BLIND AND HANDICAPPED

National Multiple Sclerosis Society Upstate New York Chapter

National Multiple Sclerosis Society 1650 South Avenue, Suite 100 Rochester, NY 14620-3901 CHANGE SERVICE REQUESTED

Upcoming Chapter Events

Location

Date

MS Gala and Bash Women Against MS Paper Craft & Crop to Stop MS

Rochester Albany Rochester

November 6, 2010 November 12, 2010 January 15, 2011

Syracuse

February 24, 2011

Call 585-469-2784 for more information

Laugh in the Face of MS: MS Comedy Night Walk MS: 2011 Golf Fore MS Bike MS: Follow the Foothills Bike MS: Finger Lakes Challenge

19 Locations May 1, 2011 (See website for a complete list) Fredonia/Dunkirk site ONLY May 15, 2011 Rochester June 27, 2011 Glens Falls July 16, 2011 Keuka Park July 30-31, 2011

Vote For A Cure www.msupstate.org Click VOTE NOW


Non-Profit Org U.S. Postage PAID Rochester, NY Permit No. 764

National Multiple Sclerosis Society Upstate New York Chapter

National Multiple Sclerosis Society 1650 South Avenue, Suite 100 Rochester, NY 14620-3901 CHANGE SERVICE REQUESTED

Upcoming Chapter Events

Location

Date

MS Gala and Bash Women Against MS Paper Craft & Crop to Stop MS

Rochester Albany Rochester

November 6, 2010 November 12, 2010 January 15, 2011

Syracuse

February 24, 2011

Call 585-469-2784 for more information

Laugh in the Face of MS: MS Comedy Night Walk MS: 2011 Golf Fore MS Bike MS: Follow the Foothills Bike MS: Finger Lakes Challenge

19 Locations May 1, 2011 (See website for a complete list) Fredonia/Dunkirk site ONLY May 15, 2011 Rochester June 27, 2011 Glens Falls July 16, 2011 Keuka Park July 30-31, 2011

Vote For A Cure www.msupstate.org Click VOTE NOW


Fall 2010 MS Connection