CONNECTION MOVING TOWARD A WORLD FREE OF MS Spring 2011 Upstate New York Chapter
First Niagara: A Corporate Partner Moving Forward In The Fight Against MS
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hen the National MS Society thinks about its many generous partners in the community, a few shining stars automatically stand out. One of these stand-out corporate partners is First Niagara Bank. First Niagara Bank is moving the MS mission of creating a world free of MS forward in many ways. First Niagara’s commitment to fighting MS started more than 15 years ago and has grown and deepened over time. Walk MS is cornerstone of First Niagara Bank’s support. They have been a sponsor of Walk MS for more than seven years and have contributed $40,000 to the Upstate New York Chapter. First Niagara’s branches have formed Walk MS teams that have raised thousands of dollars over the years. Lockport, Albany, Saratoga, and Lake Taghkanic Walk MS sites have the most active First Niagara teams. First Niagara also celebrates the progress toward a world free of MS at the Annual Dinner INSIDE THIS ISSUE:
Public Policy Conference 2011 Page 4
Bike MS 2011 Page 8
of Champions in Buffalo by generously lending corporate sponsorship support. Encouraging volunteerism, First Niagara Bank has provided two long-time past board members; Mike Tylwalk, and Carol Goold whom we are glad to call friends of the MS Movement. We thank all of our corporate partners, especially those like First Niagara Bank who give so much to fighting MS. We also encourage others to lend a hand and follow the example set by a company that is truly making a difference in the fight against MS.
The crowd is ready to go at the Albany Walk MS location. See page 10 for more Walk MS info.
Walk MS Page 10
Golf fore MS Page 12
2011 Chapter Board Members Upstate New York Chapter www.msupstateny.org www.nationalmssociety.org email: michelle.prue@nmss.org
Chapter Offices 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
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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Officers
Steven V. Modica, Esq. ..................................... Chair Thomas Sanderson..................................Vice Chair Christine Sisto Mertes .............................Vice Chair James J. Smith ............................................Secretary Richard Page ............................................... Treasurer
Directors
Robert W. August Susan F. Bartkowski, Esq. Kathy Birk, MD Daniel A. Clifton Luz M. Cruz, EdD Patricia Dow Keith Edwards, MD Daniel J. Farberman Karen M. Gallina
Richard G. Kazel Bryan Kenny, CPA Richard J. Mengel, CPA James E. Metzler, Esq. Thomas D. Muller Randy L. Saltzman Richard Satran, MD Karen L. Waldron
Chapter Mourns Loss of a Friend
The Chapter mourns the loss of a long time friend, Eric W. Zaenglein in Rochester, NY on February 16, 2011. Eric was a board member, finance committee member and past board chair of the Upstate NY Chapter. His connections to MS made him and his family passionate towards our mission. Eric was an integral part of the finance department, whose strong financial experience assisted the chapter in ensuring strong controls and procedures. He is survived by his three children, 7 grand children and 2 siblings. A memorial celebration will be held on June 4, 2011 at the Rotary Sunshine Camp from 1-4pm. The family has requested that, in lieu of flowers, memorials made to the Upstate NY Chapter of the National MS Society, 1650 South Avenue, Suite 100, Rochester, NY 14620.
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Message from the President Stephanie Kunes Mincer, LMSW, MSSMC
developing programs and enhancing our services throughout the state, but I always had my hands in the development and administration departments because we work so close as a team at the Chapter. As President, we continue to work as a team but now I have the privilege of leading the team, and now I see first hand just how dedicated they all are! This past year I have also had the opportunity to meet so many new people across the state who told me their story about how MS has affected their lives or who listened to me tell the story of others and ask them to join our movement to create a world free of MS. Whether it was those living with MS, family members, donors, volunteers, or participants; I have met some truly remarkable individuals and I look forward to meeting many more in the days and years ahead. Thanks to all who have made this first year as President and my past thirty years with the Chapter so rewarding for me.
CHAPTER NEWS
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o, now I know why the past thirty years at the chapter seem to have flown by…I can’t believe one year has gone by since I became President of the Chapter. It truly is amazing to me how fast time goes by and I guess it Stephanie K. Mincer feels that way because I’m doing work that I truly enjoy - raising awareness of MS in the community, as well as raising funds to support our many programs, services, and of course, to advance MS research so that one day there will be a cure for this disease and no one will know what it means to be diagnosed with MS. Many times this past year I was asked how I like my new position and my answer was always “It’s great!” Certainly when I was the Senior Vice President of Programs and Services I couldn’t imagine doing anything else. I truly enjoyed
MS Center of Northeastern NY Recognized as an NMSS Affiliated Clinic
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he Upstate New York Chapter is pleased to announce that the Multiple Sclerosis Center of Northeastern New York in Latham, NY has been recognized as a member of the “National MS Society Affiliated Centers of Comprehensive Care.” The National MS Society has new, very stringent guidelines for clinics to be affiliated with the National MS Society and the MS Center of Northeastern New York is the first clinic in Upstate New York to affiliate with the NMSS under these new guidelines. To be affiliated with the NMSS, a clinic must demonstrate that they provide expert and quality care, as well as advanced research options, in a comprehensive and coordinated
manner for patients with multiple sclerosis. The MS Center of Northeastern New York has an on-site infusion facility solely for the treatment of MS patients allowing unique social and psychological support with ongoing education for patients while receiving treatment. The center’s highly skilled staff includes Dr. Keith Edwards, who has been involved with MS treatment and research for 30 years and Esther Boorse, RN and MS specialist, as well as many other dedicated and talented staff, nurses, and research personnel who provide patients with symptom management support, advocacy, health, education and guidance through the many challenges of MS. TOLL FREE NUMBER 1 800 344 4867
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Public Policy Conference 2011, Washington D.C. PROGRAMS
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he Upstate New York Chapter joined other chapters from across the country at the 2011 Public Policy Conference, hosted by the National Chapter of the MS Society, in Washington, D.C. This annual conference allows Chapter staff and volunteers to discuss the impact of federal issues and have face to face contact with members of Congress, leaving a lasting impression with stories of personal triumph and passion. Visit www.msupstateny.org for more information.
This year’s Federal Issues were: Medicare Neurologist Incentive: The Affordable Care Act provides a bonus to Medicare physicians who have allowed charges for evaluation and management services that account for at least 60 percent of their total allowed charges. Neurology is the only group of physicians left out of the incentive.
Marla Eglowstein, Sophie Rich, Congressman Tom Reed, Dr. Keith Edwards, Emilie Higgins, Linda and Jean McKissick and Stephanie Mincer at the Public Policy Conference in Washington D.C.
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Adult Day Achievement Center Enhancement Act: MS activists urge support of this legislation that would sustain and grow programs that are specifically designed Adult Day programs targeting a younger population of people, such as those living with MS. MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS activists have successfully advocated for a new federal funding avenue that has yielded approximately $13 million for MS research. The Upstate New York Chapter was honored that Linda and Jean McKissick could represent our chapter and speak on a panel to present information about the MS Achievement Center in Rochester.
Chapter President Stephanie Mincer with Chapter volunteers Linda and Jean McKissick proudly wearing MS orange at the Capitol.
JOIN THE MOVEMENT: nationalMSsociety.org
Linda McKissick Lamonte stands behind her sister Jean McKissick as she reads her courageous story of MS and the positive impact the MS Achievement Center in Rochester has made in her life.
What Does MS Equal to You? Chapter during MS Awareness Week. Wellness fairs were held in Rochester and Buffalo to showcase wellness options for Chapter members. Orange roses were sold at local malls to raise awareness about MS, the programs and services that the Chapter offers and the fundraising events that provide funds for research and member support. Thanks to everyone who shared what MS means to them, purchased roses or raised awareness during MS Awareness Week!
PROGRAMS
March 14 – 20 was MS Awareness Week and the National MS Society Upstate New York Chapter encouraged people to come together to share, educate and build awareness about what MS means to them. The week kicked off with the Women on the Move Luncheon, an annual fundraiser honoring women from the Rochester community who are doing something about MS now. The luncheon raised awareness and funds for local programs and services and critical research. The Chapter had a full schedule of educational programs and public awareness activities throughout Upstate New York
Orange roses were sold during MS Awareness Week to raise funds for local programs and services and research to find a cure for MS Chapter staff members, Elizabeth Morrison and Shari Mazzella share information at Eastview Mall during MS Awareness Week
Text WALK to 20222 to make a $10 donation to the National MS Society, Upstate New York Chapter. See page 11 for details.
Becky from Rochester showed off her tattoo at the Wellness Fair in Rochester TOLL FREE NUMBER 1 800 344 4867
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Interested in Being a Part of MS Research?
Opportunities in Buffalo & Rochester
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RESEARCH
he dawn of discovery in MS management begins with you. Consider participating in a clinical research study on an oral investigational medication for Primary Progressive MS (PPMS). The study will evaluate whether the investigational medication is safe and effective in slowing disease progression associated with PPMS. Participants must be 25-65 years old with PPMS that has progressed for at least 1 year and have at least two of the following: positive brain MRI, positive spinal MRI, positive CSF. If eligible, you will participate in the study in Rochester for up to 5 years and attend 18 scheduled study visits. All study medication and study doctor’s visits will be provided at no cost to you. For more information, contact: Cynthia J. Irish, RN, MSCN Clinicial Research Coordinator Rochester Multiple Sclerosis Center (585)-275-6120 Researchers at Jacobs Neurological Institute in Buffalo are recruiting patients for research studying memory and thinking problems in multiple sclerosis. Research will help determine reasons why some patients have memory and thinking problems, and if medication is effective in the treatment of these problems. Volunteers will be paid for participation. Candidates for research must be age 18 to 65 years of age and not have other medical problems that may cause thinking or memory problems. If you are interested in hearing more about this research please contact Dr. Ralph Benedict at (716) 698-3555.
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National MS Society Leads the Way in Cutting Edge Research to Stop MS, Restore Function and End MS Forever
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xciting advances were made recently in virtually every field of MS research. Progress toward finding new therapies for MS is illustrated by the availability of the first oral diseasemodifying therapy for MS. Progress was also made toward finding ways to restore function and improving quality of life and specific MS symptoms through exercise, meditation, rehabilitation and medications, including the first therapy specifically approved to treat a symptom of MS (Ampyra). Our understanding of factors that influence whether a person develops MS deepened this year, bringing us closer to finding ways to prevent the disease. The National MS Society continues to propel research forward with a comprehensive research strategy and program. This year we provided $36 million to support some 325 new and ongoing projects, including everything from discovery research to the Society’s commercial drug development efforts through Fast Forward. This year the Society launched new projects focusing on discovering risk factors that lead to progressive disability, projects aimed at speeding diagnosis, research on protective mechanisms of vitamin D and estrogen, tests determining whether a new device can improve walking ability, and many more.
You can ensure we continue this important research by contributing to the Upstate New York Chapter’s 60th Anniversary Campaign. Visit www.msupstateny.org to donate and help create a world free of MS. JOIN THE MOVEMENT: nationalMSsociety.org
Chapter Thanks Volunteers Who Plan Fundraisers for MS!
Fundraiser Name
Amount Raised
County
$12,500
Rensselaer
2010 18 Fore MS Golf Tournament
$4,655
Ulster
2010 Walgreens of Dunkirk Dream Cruise & Dice Run
$2,917
Chautauqua
Brother’s Olympics Event by John and Shannon Baldridge
$1,000
Chautauqua
Health Care Navigator Philanthropic Fridays “Dress Down Day”
$920
Erie
2010 Society of American Magicians, Rochester Assembly 47 Magic Fest “Making MS Disappear”
$847
Monroe
6th Annual Cornell Univ. Dodgeball Tournament by Women’s Lacrosse
$690
Tompkins
Holiday Dinner & Basket Raffle, Western District NYPTA
$661
Erie
Niagara National, Inc - Monthly Dress Down Day
$500
Erie
2010 Hamberger & Weiss Dress Down Days
$356
Erie
Health Care Navigator Philanthropic Fridays “Dress Down Day”
$320
Westchester
Health Care Navigator Philanthropic Fridays “Dress Down Day”
$320
Monroe
2010 Humboldt Lodge No: 138 Raffle
$250
Monroe
JC Penney Corporation Dress Down for MS Day August 28 2009
$220
Salt Lake
Urban Essentialz Holiday Sales
$215
Monroe
2010 Strike Out MS in Waverly NY
$202
Tioga
2010 Fall Community Day - Bon Ton Stores
$153
York
Scavenger Hunt & Team Building Exercise- ESL Federal Credit Union
$100
Monroe
Beck Family Christmas Eve Auction
$84
Niagara
Canvas People Event Participant Offer
$63
Nassau
2010 Hamburg Central School District Dress Down Days
$62
Erie
2010 Art From Within Ornaments
$48
Dutchess
Casual Fridays for NYSUL Elmira Regional Office Staff
$45
Chemung
Sept. Bottle Slips- Wynantskill’s Hannaford
$42
Rensselaer
2010 Mohawk Valley Bridge Association Bridge game collection
$36
Oneida
TM Design Corporation Online Sales
$35
Monroe
2010 HMA Contracting & Hamel Real Estate Golf Outing
TOLL FREE NUMBER 1 800 344 4867
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DEVELOPMENT
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any volunteers recently organized fundraisers to celebrate MS Awareness Week. Dress down days raised over $3,000 recently! Call 1.800.344.4867 if you would like to plan your own fundraiser or learn more about how you can do a dress down day at your workplace.
DEVELOPMENT
Get on your Bike and Join us at Bike MS 2011 Follow the Foothills July 16th Glens Falls, NY www.followthefoothills.org
Finger Lakes Challenge July 30 – 31st Keuka Park, NY www.fingerlakeschallenge.org
Accept the challenge…these three riders did and now they want to tell their stories:
Frank Ridzi Why do I ride? In 1986 when I was 37, I rode in my first MS Bike Tour with my oldest son. We decided to ride because people we met who had MS approached life with such amazing optimism—the proverbial ‘glass half full, rather than half empty’ philosophy of life. Twice in a ten year span, I had episodes where I could not use my left arm or hand and had no strength or control of my left leg lasting about a week. I couldn’t walk, drive, work at my computer, let alone ride a bike. There was no warning and there were no obvious reasons. An MRI confirmed I have MS. For the past 15 years I have not taken my body for granted. I have been running or riding my bike every day. The first summer after I was diagnosed I still participated in Bike MS, just not all 150 miles. I had a new outlook on this fundraiser I had been supporting for 15 years. I continue to accept the challenge to fight against MS. This is why I ride.
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Jeff Small, Eric Karpie, Sandra Small and Dan Norton Why do we ride? Because we do not want to see anyone suffer from MS. I do it because it is one small way that I can do something concrete to fight the disease. In July of 2003, my wife, Kay, was diagnosed with MS after a severe case of optic neuritis causing temporary blindness. Last year, I pedaled 108 miles to raise funds to help those with MS, including Kay. Even though I was the very last rider to cross the finish line, I was glad that I accepted the challenge to fight against MS. When I first started riding too, I nervously approached family, friends and co-workers asking for their donations. I was awestruck by the number of people who readily contributed and who genuinely wanted to help. Their donations support programs and services for families living with MS and research to find a cure. That is why I ride.
JOIN THE MOVEMENT: nationalMSsociety.org
Tim Doyle Why do I ride? MS has touched my life from the very beginning. Growing up as a child of a parent with MS I watched as my mother struggled with the disease. Growing up there were no medications and a diagnosis of MS was devastating. My family and I did what we could for her but at the end of the day there was nothing we could do to stop or slow the progression of the disease. Twenty years later I rode my first Bike MS event. I rode in memory of my mother and for my wife who was recently diagnosed with MS. When I crossed the finish line I felt a sense of accomplishment because I felt that I was helping the cause by raising money and awareness. I ride in Bike MS as a way of being able to punch MS right in the face, to strike back at a disease that takes no prisoners. I ride to help raise the funds and awareness to put this disease to rest once and for all. I ride so that Julie can have more good days in the future. This is why I ride.
MS Gala in Albany DEVELOPMENT
Attendees of the MS Gala hosted by MS Resource of the Tri-State Area and the Upstate New York Chapter pose with Neurologist Dr. Keith Edwards (center).
Lori Rhodes, Emilie Higgins and Stephanie Bradshaw from the Chapter’s Albany office.
Women On The Move
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he Women on the Move Luncheon on March 11 was a huge success raising more than $30,000 to support local programs offered by the National Multiple Sclerosis Society Upstate New York Chapter and critical MS research. We appreciate everyone who supported this event and helped us kick off MS Awareness Week with a bang! We hope you will join us again next year at this inspirational, motivational and empowering networking opportunity for women in the Rochester Area.
Award winners included (from left) Women’s Club of Webster, Maria Basil, Luz Cruz, Stephanie Mincer, Leslie Virgilio, Anne Collins, Michelle Marcello and the Rochester MS Center Nurses at URMC. Not pictured; Leslie Church and Patricia Vazzana.
Award recipient, Michelle Marcello, enjoys the luncheon with friends and family
Jennifer Mason, featured in the We Keep Moving video series, talked about her experience sharing her story of living with MS and announced the award winners. TOLL FREE NUMBER 1 800 344 4867
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Walk MS 2011 - A Beautiful Day to Step Out For MS!
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n a beautiful and sunny May Day, more than 10,000 people from across Upstate New York took part in Walk MS and took steps to create a world free of MS. Many miles were walked and many memories were made as we all rallied together to do something about MS now. Expressions of support were seen far and wide. The images of the day of teams proudly carrying signs and wearing matching t-shirts, looking out on a sea of orange from people wearing their new Walk MS t-shirts, and hearing people share their stories of why they walked were heartwarming and motivating for all. All of these moments add up to a very special day of support for people living with MS. While we don’t have a total yet for what was raised on May 1, we can tell you that we are on target to have good news to share! We are working hard to enter all the deposit totals for each and every person who came to Walk MS over the weekend. We are working as fast as possible to ensure that all totals are updated soon. As soon as our totals become available we will alert all of our walkers and update our webpage at www.msupstateny.org.
PLEDGE NEWS Do you have pledges still coming in? Please send any pledges you receive to: National MS Society 1650 South Ave., Suite 100 Rochester, NY 14620 Include a note stating who the pledges are for (walker’s name) and we will credit them to the correct walker. Don’t forget any pledge or matching gift form turned in by the prize deadline of June 24, 2011 will count toward your prize total. (This includes all donations made online or dropped off at our offices as well).
Walkers in Syracuse head off under the balloon arch to lead the way to a world free of MS
Team Clarix ready for another great Walk MS in Rochester!
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Team Gummy member and Batavia Muckdogs mascot Join the Movement!
JOIN THE MOVEMENT: nationalMSsociety.org
It’s Not Too Late to be a Part of Walk MS alk MS is the rallying point of the MS Text WALK to 20222 Movement; a community coming together
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to raise funds and celebrate hope for the future! This month Walk MS was held in 20 sites across the state and is on target to hit it’s goal of raising $1.5 million for local programs and critical MS research – research that will one day unlock the mystery of MS and find the cure for this devastating disease. More than 10,000 New Yorkers (and a few visitors from other places too) stepped out to make their mark against MS. It was a tremendous statement and a day filled with fun, friends and fantastic spirit. Seeing so many people decked out in orange attire united with one goal in mind – a world free of MS, was inspiring and motivating. You can still be a part of Walk MS and keep the momentum going! For the month of May, the Chapter is having a special texting campaign. You can text a donation today to support our local programs in Upstate New York and MS research!
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ach text message donates $10 to the National MS Society, Upstate New York Chapter. You may donate up to 3 times. Select YES to confirm your donation to Al Sigl. The NMSS can participate in this program because of our partnership with Al Sigl Community of Agencies. A one-time donation of $10 will be added to your mobile phone bill or deducted from your prepaid balance. Messaging and Data Rates May Apply. All charges are billed by and payable to your mobile service provider. Service is available on most carriers. Donations are collected for the benefit of the NMSSUNY by HPM, Inc. and the Mobile Giving Foundation and subject to terms found at www.hmgf.org/t. You can unsubscribe at any time by replying STOP to short code 20222; Reply HELP to 20222 for help. (Privacy Policy http://www.greatergiving.com/privacypolicy.aspx) This opportunity ends May 31, 2011 so text your gift now!
TOLL FREE NUMBER 1 800 344 4867
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DEVELOPMENT
Two Opportunities to NMSS Selected as Golf Fore MS this Summer Embrace the Difference lease join the Upstate New York Chapter Beneficiary and take a swing against MS at one of
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our Golf Tournaments in the Rochester Area. Details and register online at www. msupstateny.org. Contact Valerie Hoak at 585-271-0805, ext. 5373.
Jon Ludwig MS Golf Classic This is our classic Monday Tournament founded by Jon Ludwig. Join us July 18th at Shadow Pines Golf Club. $150 per golfer, $600 per foursome and $250 hole sponsorships still available. Golf Fore MS A casual Saturday Tournament on August 20 at Eagle Vale Golf Club. Just $99 per golfer, $396 per foursome and $150 hole sponsorships still available.
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he National MS Society, Upstate New York Chapter has been selected to be one of the charities benefitting from a philanthropic program of Reeds/Jenss Jewelers. Robyn Zimmer, wife of Reed’s owner Jeffrey Zimmer, has designed a line of jewelry to benefit charities for people with differences. The program is called Embrace the Difference™. The Embrace the Difference™ design includes interconnecting circles connected by a square to show that we are all linked together no matter what the difference we may have. When people purchase the jewelry online or at a Reeds Jewelers location, a $30 dollar donation per piece, is made to the charity the buyer chooses from the selection of participating organizations. Check it out at www.embracethedifference. org. The Chapter is currently the last charity on the list.
Sam’s Club Raises Almost $1.2 Million to Benefit National MS Society Through grass roots fundraising such as donation jars, popcorn, caramel apple and hot chocolate sales, MS bracelet and sneaker sales to employees and customers in their parking lots, break room activities like bake sales, chili cook-offs, etc., Sam’s Club’s across the country raised a whopping $1.2 million to benefit the programs and services of the NMSS. Sams Club stores in Upstate New York raised nearly $11,000 to support the Chapter’s community programs and fund research to find a cure for MS.
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Thank you to everyone who supported Team Up 4 MS
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DEVELOPMENT
he National MS Society Upstate New York Chapter is proud to have partnered with the Buffalo Bills for the 2010-2011 season in the fight against MS through the Team Up 4 MS campaign. Every touchdown the Bills scored and every quarterback they sacked made a difference for people living with MS. This year the Team Up 4 MS campaign raised more than $8,000 for the National MS Society Upstate New York Chapter. Thank you to all who pledged to support this important campaign! Special thanks to Lee Evans and Gretchen Geitter of the Buffalo Bills for their involvement in this year’s campaign. We would also like to recognize Michael Hummel and the Southern California Buffalo Boosters, this year’s top donor! GO BILLS! If you are interested in getting involved for the 2011-12 season, contact Christy Missico atnow (716) 634.2573 x 19. directly by the Society. being administered “Thisbeing allowsadministered us to expanddirectly the ways now bypeople the Society. living with MS can connect,” said Kimberly “This allows us to expand the ways people Koch, MPA,MS associate vice president, Family Connect with an MS friend living with can connect,” said Kimberly and Support Programs for the Society. “It’s Koch, MPA, associate vice president, Family No matter how nationwide, people can get Society. involved“It’s even and Supportso Programs for the wonderful No matter friends how and if their chapter doesn’tcan haveget a peer support nationwide, so people involved even family can be, thereand are wonderful friends program.” if their chapter doesn’t have a peer support times people familywhen can be, therewant are to talkwhen to someone times peoplewho want program.” There are currently about 40 volunteers. Koch understands exactlywho to talk to someone hopes to expand thisabout to about 100. All have what they areexactly going There are currently 40 volunteers. Koch understands MS themselves, but in the future, other family through—someone hopes to expand this to about 100. All have what they are going members or carebut partners may beother recruited. who has MS, too. MS themselves, in the future, family through—someone The main difference between the Society’s MS members or care partners may be recruited. who has MS, too. ® programbetween and MSFriends is thatMS the Navigator The main difference the Society’s That’s where Navigators’ primary job to get people referred andisMSFriends is that the Navigator® program MSFriends come in. Volunteers with MS That’s where and connected to resources, while the Friends’ Navigators’ primary job is to get people referred connect withcome callers share howwith theyMS live MSFriends in.to Volunteers job to listen and provide emotional andisconnected to resources, while thesupport. Friends’ with MSwith and to helpto with problem-solving connect callers share how they live or If you’d like to and be an MSFriend, call ussupport. about job is to listen provide emotional challenges people with MS face in relationships. with MS and to help with problem-solving or If you’d like to be an MSFriend, call us about They may also helpwith withMS symptom management. training. challenges people face in relationships. training. People canalso callhelp to speak an MSFriend at 866They may withto symptom management. MSFriends averages 9,000 calls a year, and they 673-7436, 7 a.m. until to midnight, Eastern People can call to speak an MSFriend at Time. 866are completely confidential. “MSFriends allows Or they can leave message and get a call back MSFriends averages 9,000 calls a year, and they 673-7436, 7 a.m.auntil midnight, Eastern Time. people to connect when they feel like it, unlike the next day. are completely confidential. “MSFriends allows Or they can leave a message and get a call back self-help a specific time,” people togroups, connectwhich whenmeet they at feel like it, unlike the next day. said Koch.groups, “If yourwhich question up at an odd self-help meetcomes at a specific time,” The program got its start in 2005 under the hour, there’s placequestion to reachcomes out forup support.” said Koch. “Ifayour at an odd umbrella of the Foundation, The program gotVisionWorks its start in 2005 under thebut is now beingofadministered directly by the Society. hour, there’s a place to reach out for support.” umbrella the VisionWorks Foundation, but is “This allows us to expand the ways people TOLL FREE NUMBER 1 800 344 4867 13 living with MS can connect,” said Kimberly Koch, MPA, associate vice president, Family
RESEARCH
rESEArCh
rESEArCh NExt StEPS
• Researching what leads to disease progression, • Finding ways to repair damage to the nervous system,
Better identification faster
RESEARCH
• Accelerating the development of new therapies.
Finding ways to more quickly identify progressive MS based on biology rather than on symptoms would mean therapies could be tested earlier in the course of the disease and possibly protect the nervous system from injury.
The turn of the year saw MS researchers assessing their progress in a number of areas. A think tank on progressive MS brought together MS investigators, research funding agencies and industry representatives. And, in January, Dr. Timothy Coetzee, chief research officer of the Society (see News), moderated a panel of MS researchers in a live webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” how does MS progress? At the think tank, which was hosted by the Society and its commercial drug development entity Fast Forward last December in Boston, Society President and CEO Joyce Nelson pointed out that progressive MS is the centerpiece of the Society’s Strategic Response for the next five years, with a focus on:
Some evidence indicates that nerve degeneration occurs independently of inflammatory events, but there is other evidence that degeneration stops when inflammation subsides. Therefore, more research is needed to understand the cause of underlying nerve damage in progressive MS and to identify new targets for therapies. Participants also discussed the need for biomarkers—“footprints” that could help identify or predict MS progression. Think tank participants reported that steady progress is being made in finding noninvasive ways of detecting nervous system damage and whether protection or repair are taking place. Additional issues The participants discussed other important issues, as well. Many clinical trials do not run long enough to make clear whether there is an effect against slow progression. The traditional measurement of disability progression, the EDSS scale, is not sensitive to subtle change, which poses a problem in monitoring progressive MS.
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RESEARCH rESEArCh diseases, they are good candidates for future And, some previous trials used a mixed clinical trials. population of people with primary progressive MS and secondary progressive New drugs emerging MS. Since it’s not clear that all types of progressive MS would respond the same way, The researchers also talked about repairing mixing participants may be the nervous system by one reason that some past Part of the stimulating the body’s own trials were not successful. conversation included repair cells to be more active or trying several types of stem For a complete wrap-up of how newer approved by cells to repair myelin. Part of the meeting and a webcast treatments may help the conversation included how featuring a panel of several in the battle to protect newer approved treatments participants, visit www. the nervous system in may help in the battle to nationalMSsociety.org/ protect the nervous system in thinktank. people with MS. people with MS. repairing the nervous “For the first time we’re really starting to see system the emergence of very, very effective drugs for treating inflammation,” Dr. Giovannoni said, On January 11, Dr. Coetzee, chief research noting that these therapies might also help to officer of the National MS Society, was stave off nervous system damage and allow joined by Drs. Peter Calabresi, Ian D. natural repair processes to work, although Duncan, Charles ffrench-Constant and Gavin this has not yet been proven. “We’ve seen Giovannoni for the webcast, “Repairing the people who have highly active disease going Nervous System in MS: Progress and Next on these drugs and improving,” he said. Steps.” The four researchers recently served as leaders of four international teams in the For a full report or to read a transcript of the National MS Society’s Nervous System Repair webcast, visit www.nationalMSsociety.org/ and Protection Initiative, funded through the webcasts. Promise: 2010 campaign. The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other
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