Volunteer SpotlightPage 6

On The Move HonoreesPage 15

Bike MS First-Timer Page 14

InSIde This Issue

CONNECTIONM O V I N G T O W A R D A W O R L D F R E E O F M SSpring 2015 Upstate New York Chapter

Kathy’s Crew: Inspired Students Inspire Others

While attending nazareth College 19 years ago, don Young met Sister Kathy Weider. He

saw firsthand how multiple sclerosis affected her daily life and how it caused her to not be able to do the job she loved and was so passionate about. Others also saw how MS affected Sister Kathy, and as a result they created the Walk MS team, Kathy’s Crew, to raise awareness for the cause and show support for people living with MS. After graduating, don became a teacher at the Minerva deLand School in Fairport. He wanted to continue raising awareness and support for Sister Kathy and others living with MS. For the past 14 years, don has been the Team Captain of Kathy’s

Crew II. As Team Captain, he rallies the school to participate in Walk MS. Kathy’s Crew II grows every year because of the students sharing their person-al connections and wanting to help those living with MS. He says, “I am amazed every year how many students know someone that has been af-fected by MS. When students share stories of how MS has affected people they love, they find the motivation they need to help.” Minerva deLand School is for ninth grade stu-dents only, so getting new students involved ev-ery year is an exciting challenge for don. He starts talking about the event early in the year to en-courage students to get involved and learn more

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MS ActivistsPage 12

Continued on page 4

Kathy’s Crew II at Walk MS 2014.

2 JOIN THE MOVEMENT: nationalMSsociety.org

Chapter OfficesAlbany Office421 new Karner Road, Suite 6Albany, nY 12205-3838

Buffalo Office4245 Union Road, Suite 108Buffalo, nY 14225

Rochester Office1000 elmwood Avenue, Suite 900Rochester, nY 14620 -3901

Syracuse OfficeP.O. Box 421Camillus, nY 13031

All offices can be reached by calling 1-800-344-4867 (1-800-FIGHT-MS)

Executive Management TeamStephanie Kunes-Mincer, LMSW

President and CeOBarbara J. Bennett, CPA - Vice President, Finance

Valerie King Hoak - Vice President, Chapter Resource developmentShari Mazzella - Vice President,

Programs & Services

2015 Chapter Board MembersOfficersKaren L. Waldron ..................................................ChairChristine Sisto Mertes ................................Vice ChairPamela W. Salisbury, MSn, nP-C ............Vice ChairMitchell Pawluk, esq. ..................................SecretaryCharles T. Cleary ........................................... Treasurer

Directors Kathy A. Birk, MdMark e. BoucherKenneth BuschnerJennifer Capezzuto, CPAChristina ConnorsKeith edwards, MdRobert Flucknancy T. Holtby

Clinics/Health CentersVisit our website for a list of national MS Society affiliated clinics.

Upstate New York ChapterMSupstateny.orgnationalMSsociety.orgemail: michelle.prue@nmss.org

Bryan Kenny, CPAJennifer McKenzieRichard J. Mengel, CPAThomas d. MullerSusan RadzyminskiJulie Ann ShortTracey L. Wardwelleric Webber

®

The production of this newsletter was supported by Genentech.

TOLL FREE NUMBER 1 800 344 4867 3

Chapter neWS

We are just weeks away from our

largest rallying point of the MS movement: Walk MS! I am so inspired by the teams that are busy recruiting members and raising funds to participate in this important day that is

bringing us closer to a world free of MS. I had the great pleasure recently of visiting with Shirley Brown, a Walk MS participant and mother of doug Brown, the team captain of Team dJ at Walk MS: Southern Chautauqua. I visited Shirley at the Johnson Foundation offices to thank her for facilitating a $50,000 grant for MS research. This tremendous gift will truly make an impact in fueling our progress to the next therapies and treatments for MS. Shirley has been instrumental in championing the MS cause ever since her son doug was diagnosed in 1998. She secured an annual gift of $5,000 from the Johnson

Letter from the President Stephanie Kunes-Mincer, LMSW

Stephanie Kunes-Mincer

Foundation for their walk team to support MS research each year. All in all, the Johnson Foundation has invested $165,000 for MS research. The Brown family – with support from friends, family, and the community –has raised $90,000 through Walk MS. As we visited together, Shirley talked as a mother of a child with MS. She shared about her commitment to help find a cure for this disease and the urgency to find the cure now. As Walk MS approaches, I know that there are many mothers and fathers, sisters and brothers, husbands and wives who will be joining us with the same urgency as Shirley. I hope to see many of you at one of our Walk MS events across Upstate new York. Let’s walk together to find the cure now.

Stephanie Kunes-Mincer receives a check from the Johnson Foundation presented by Shirley and Doug Brown.

Social Security Disability Insurance

do you have questions about SSdI? Check in with someone who is in

the know! Our region is lucky to have an expert volunteer willing to answer your questions. Call 781-693-5155 to schedule a phone consultation.

JOIN THE MOVEMENT: nationalMSsociety.org 4

Chapter neWS

Jessica L. Joanis is join-ing the national MS

Society Upstate new York Chapter as Campaign Manager in Syracuse. She will be responsible for Walk MS in four locations: Watertown, Syracuse, Binghamton, and Utica. Jessica has more than 10 years’ experience in local, non-profit fundraising. She is a na-tive of Illinois, but moved to new York when she was recruited to play division I volleyball for Syracuse University. She holds a Bache-lor’s degree in Marketing from the Whitman School of Management. Jessica still plays volleyball in her spare time, including beach volleyball in the summer. She currently re-sides in Camillus with her husband Christo-pher and her one year old daughter Liberty.

deanna Oliveri is the new Campaign Man-

ager at the national MS Society’s Upstate new York Chapter’s Albany of-fice. She is hard at work helping coordinate Bike MS: Hudson River Ram-ble, in addition to other Bike MS events and the WAMS luncheon. Growing up with a parent living with MS, she has seen firsthand the challenges that those living with the illness face. She is excited to be a part of the national MS Society and to do work that will have a positive impact on people’s lives. deanna holds a Bachelor’s de-gree from SUnY Oneonta where she gained experience planning cycling events. She is an avid mountain biker, equestrian, and fit-ness junkie, and she loves being outdoors.

Upstate New York Chapter Welcomes New Staff

about multiple sclerosis. He encourages everyone to bring a friend to the event. In his classroom he has a Walk MS display with team t-shirts, pictures, and the amount raised. He says the display is “a wonderful conversation piece for the students throughout the year to understand where we have come from and to understand why we want to have a team every year.” Involvement from oth-er teachers has been crucial to his team’s success as they also help to tell more students about Walk MS and raise awareness. don says, “We walk for those who inspire us

with their stories about living with MS. We hope the day will come when we can walk to share new stories of how the days of living with MS symp-toms are in the past.” Walk MS is a day to come together, to cele-brate the progress we’ve made, and to show the power of our connections. Mark your calendar and come celebrate with us! Walk MS dates are included on the back page of this MS Connection. To make a pledge to a Walk MS team or to regis-ter, visit WalkMS.org.

Continued from cover

5TOLL FREE NUMBER 1 800 344 4867

Chapter neWS

Four physical therapists from Susan e. Bennett, PT & Associates recently com-

pleted the process of becoming Partners in MS Care. The national MS Society’s Partners in MS Care program recognizes and sup-ports quality MS care. The program involves healthcare professionals in the areas of: Cen-ters for Comprehensive MS Care, neurologic

Care, Rehabilitation, and Mental Health. Su-san e. Bennett, PT & Associates has been a keystone in MS rehabilitation for many years in Western new York. They have two loca-tions: deGraff Memorial Wellness Center at 415 Tremont Street in north Tonawanda, and a free standing site at 3350 Southwest-ern Boulevard in the Commons Plaza in Or-chard Park. The deGraff Wellness Center lo-cation also houses the MS Wellness Program on Tuesdays and Thursdays from 5:00 p.m. – 7:00 p.m. This program allows people with MS the opportunity to work with physical therapy students for a $1 donation.

New Partner in MS Care

Thank you to Susan E. Bennett, PT, DPT, Ed.D, NCS, MSCS; Donna Delles, PT; Lacey Bromley, PT, DPT, NCS, MSCS; and Jake McPherson, PT, DPT, NCS, MSCS for all of your work on behalf of people affected by MS.

The national MS Society Upstate new York Chapter will hold its annual meeting in Rochester in October 2015. The meeting will elect board members for fiscal year 2016 and

report results for fiscal year 2015. If you would like to submit a candidate for consideration for service, send a letter of interest and résumé to the chapter headquarters: Care of Governance Committee Chair, 1000 elmwood Ave. Suite 900, Rochester, new York, 14620.

Annual Meeting Slated for OctoberNow Seeking Board Nominations

6 JOIN THE MOVEMENT: nationalMSsociety.org

VOLUnTeeRInG

Team Schirmer has volunteered for MS

Service day the past two years, but the team’s commitment does not end there. Team captain Lori

Schirmer states that each member of her team is connected in some way to someone living with MS. Lori, Steve, Michelle, Mike, Brad and Margie make up Team Schirmer. They are a group of friends who began volunteering for the national day of Caring when they were all employed at Kodak. As each of them eventually moved on to other employment, they knew they still wanted to volunteer together so they chose the national MS Society. Lori talks about her team as a great group of people who are hardworking, willing to give their time, like being together, and make it fun. The team enjoys MS Service day, and Lori says, “It’s easy for us. We just show up and get to work,

THANK YOU VOLUNTEERS We rely on volunteers every day. Volunteers are crucial to the MS movement, so we say “thank you” for your part in moving us closer to a world free of MS. Our dedicated volunteers contribute some of their most valuable resources – time and energy – to the movement against MS. For information about volunteering, please contact Community engagement Manager deb Houck at deb.Houck@nmss.org or at 1-800-344-4867 x 70345.

Get the 411 on Volunteering

do you receive the Volunteer e-news? This bi-monthly newsletter just for volunteers

features new and upcoming opportunities to help you get more involved in the mission to create a world free of MS. To get on the e-newsletter mailing list, sign up online at VolunteerMSupstateny.org.

Calling Volunteer Teams for MS Service Day

Our next MS Service day will be June 6, 2015. do you want to join a team of volunteers to

help make a direct impact in the life of someone living with MS? Help with chores, household tasks, gardening, painting, and more! If you are interested in becoming a volunteer or would like to talk to someone regarding sponsorship opportunities, please contact us at nyrMSserviceday.org or at 1-800-344-4867. You may also register at MSupstateny.org.

Volunteer Spotlight: Lori Schirmer and Team

we know what to expect, we appreciate the structure of the program and the instructions provided.” Plus, they see the impact they are making and love meeting the people they are helping. A couple of years ago, Lori and some of her teammates attended the Crop to Stop MS scrapbooking event. They sat at a table talking and ‘scrapping’ with others. Fast forward to their next MS Service day assignment when the team shows up to the home of a person they are helping for the day and ironically it is one of the women with whom they had spent that day scrapbooking. What a surprise! Thank you Lori and Team Schirmer for all your dedication to the MS movement.

7TOLL FREE NUMBER 1 800 344 4867

Chapter PROGRAMSEveryday Matters Program Now in Rochester

The Utica area has graduated its first class from the everyday Matters program facilitated by

Kathaleene Riolo meeting at the Masonic Care Center. Based on Shawn Achor’s book, The Happiness Advantage, this five-week program uses positive psychology to help participants, people who have MS, and support partners to live their best life with MS. We will be offering the everyday Matters program in the Rochester area on Tuesday evenings, May 26 through June 22. This program will be facilitated by Robyn elliott englert, LCSW. For more information or to register for the program, please contact dee Mascari at 1-800-344-4867, press 2.

Newly Diagnosed?

Interested in learning more about MS and the national MS Society? Visit one of our newly

diagnosed programs happening later this spring (details on the back cover of this MS Connection). newly diagnosed programs are a great way to get connected and get involved. We look forward to seeing you there! Visit MSupstateny.org or call 1-800-344-4867 to register.

2015 Many Faces of MS Program

The Many Faces of MS program took place in Albany on March 10 at the William K. Sanford

Library in Loudonville. This program is an annual favorite where a panel of five people living with MS shared their stories, experiences, challenges, and hope for the future. dr. Allen Gerber from Albany Medical Center was available to answer

any medical questions from the audience. A special thanks to Acorda Therapeutics, Mallinckrodt Pharmaceuticals, novartis Pharmaceuticals, and TeVA neuroscience for sponsoring the program.

When I Walk

Throughout the month of March, the national MS Society Upstate new York Chapter

screened the inspiring and award-winning POV documentary When I Walk. Several of the film screenings were during MS Awareness Week to highlight the importance of drawing attention to this disease. The film was a major conversation-starter for those who attended. When I Walk truly impacted its viewers and provoked discussion among people living with MS and those seeking to understand MS more.

At the Oneida screening, the Kallet Theater promotes When I Walk on the marquee.

8 JOIN THE MOVEMENT: nationalMSsociety.org

Chapter PROGRAMSSelf-Help Group Leaders Wanted

The Rochester 20- & 30-Something’s Self-Help Group is currently looking for a volunteer

who is willing to facilitate the group each month. Facilitators are valuable volunteers who perform an integral role in facilitating supportive discussion often resulting in positive change in the lives of group participants. This group meets monthly in a relaxed and casual atmosphere. discussions generally include careers, relationships, family, raising children, maintaining a social life, and various other topics. The leader does not need to be an expert in these topics but rather be able to facilitate a healthy discussion. Training and ongoing support will be provided. If interested, please email shari.mazzella@nmss.org.

Support Groups in Western New York

The Lewiston support group has a new location, date, and time. Please join us on

the second Monday of the month from 6 p.m. to 7:30 p.m. at the Lewiston Public Library on 305 S 8th Street. This group will meet in the spring and fall, March through May and September through november. Are you interested in attending a support group in Batavia? We may be starting a group, so please let us know if you are interested. Contact Megan Vaughan at megan.vaughan@nmss.org or 716-634-2573 x70502 for more information on support groups in Western new York.

New Nutrition and Exercise Program in Buffalo

On Saturday May 30, from 2:00 pm to 3:30 pm at the Julia Boyer Reinstein Library, Cassidy

Gertis and the national MS Society Upstate new York Chapter will be holding an afternoon of nutrition and exercise education. Cassidy holds a bachelor’s degree in Sports and exercise Science and is a Certified Personal Trainer, Group Trainer and Certified Holistic Health Coach. Along with discussion, Cassidy will be demonstrating exercises that the audience can do with just a chair, weights, and exercise bands. For more information about Cassidy, visit http://www.cgfullcirclehealthandfitness.com/. To register for this program, call 1-800-344-4867 or email megan.vaughan@nmss.org by May 27.

Cassidy Gertis

9TOLL FREE NUMBER 1 800 344 4867

Become an MS Research Champion

The national MS Society has declared that this is the time to take action for MS research. We

have reached the point when individual efforts can be made exponentially stronger through support and collaboration – through an MS research revolution.

nOW, we need everyone to be a champion in the MS Research Revolution. We have committed to invest $250 million in MS research, and it will take each and every one of us to make sure we reach our goal. You are an integral part of the MS movement. With your help, we can truly create A World Free of MS. For more information about becoming an MS Research Champion, visit http://www.nationalmssociety.org/Research/

Opportunities to Participate in MS ResearchBuffalo:

The Pediatric MS & demyelinating disorders Center at Women & Children’s Hospital of

Buffalo is currently recruiting healthy, typically developing children, ages 3 to 19 along with children with a diagnosis of multiple sclerosis, ages 3 to 19 to participate in a research study. This study will take approximately two to three hours. Participants will be compensated for their time. Participants/parents/guardians will need to complete a questionnaire, and participants will have one blood sample drawn. Please call 716-859-1792 or 716-878-7367 to determine eligibility or to find out more information. Researchers at the University at Buffalo are looking at ways to improve respiratory function and exercise capacity in people with MS. The study would test the subject’s respiratory muscle function, and then see how the subject responds to a six-week exercise program designed to improve strength and endurance of respiratory muscles and reduce fatigue. The testing will be on five days over nine weeks at UB, and the exercise program will be three times a week for six weeks; two of the sessions at home and one at UB. Compensation is available. For more information, contact dr. nadine Fisher at 716-829-6724, nfisher@buffalo.edu, or visit www.facebook.com/UBRRMT. denT neurologic Institute is recruiting for two clinical trials for relapsing-remitting multiple sclerosis. If you have relapsing-remitting multiple sclerosis (RRMS) and are between the ages of 18 and 65, you may

Research that will STOP MS in its tracks.

Research that will RESTORE what’s been lost.

Research that will END MS forever.

Continued on page 10

ReSeARCH

10 JOIN THE MOVEMENT: nationalMSsociety.org

ReSeARCHContinued from previous page

qualify for a voluntary study evaluating a new investigational drug that may help reduce relapses. Qualified volunteers will receive study-related medical evaluations and the study drug at no cost. Compensation for time and reasonable reimbursement for travel related expenses are available. Also, if you are being treated for a relapsing-remitting form of MS, you may qualify for a voluntary research study that will evaluate different medications that treat RRMS. Qualified participants are between the ages of 18 and 65 and are naïve to treatment or have five years or less of total lifetime exposure to one class of disease Modifying Therapy (dMT). Participants will receive study-related exams and study medication at no cost. For more information on either of these studies, contact the denT neurologic Institute at 716-558-3492 or 716-819-4117. The Speech Production Laboratory at the University at Buffalo is looking for individuals with multiple sclerosis to participate in a treatment. Participants will be asked to attend a two hour visit at the University at Buffalo South Campus. When calling for an appointment, you will be provided with a short

description of the study, and you will be asked questions to determine eligibility. Should you meet all criteria, you will be compensated for your participation. Contact deborah Matheron at 716-829-5547 or respaerostudyinms@gmail.com. A disability in the Workplace study is seeking individuals with a physical disability aged 18 to 50 for interviews about their experience in the workplace. Interviews will take approximately one to two hours and will be completely confidential. Participants will be given a $10 gift certificate for their time. Contact Paul durlak at the University at Buffalo, department of Sociology at 716-949-2173 or pauldurl@buffalo.edu for more information.

Rochester:

The Rochester MS Center is currently recruiting to gather information about the

long-term safety and effectiveness of a new drug, SPARC’s Baclofen eR Capsules, in subjects with spasticity due to MS. For more information, call eileen Scheid, Rn, MSn at 585-275-6673. The Rochester MS Center is currently conducting trials for patients with neuromyelitis Optica. For more information, contact Cindy or eileen at 585-275-6673.

do you have an employment question you would like answered? Are you curious about workplace disclosure or social security benefits? do you think you need a reasonable accommodation? Are you thinking about returning to work?

If you answered ‘yes’ to any of these questions, feel free to pose your questions directly to an employment specialist by emailing: employmentQuestions@nmss.org. You will receive a response within 48 hours.

Got Job Questions?

TOLL FREE NUMBER 1 800 344 4867 11

ReSeARCH

A type of immune cell called microglia, which is widely believed to exacerbate

chronic adult brain diseases such as multiple sclerosis, might actually slow the progression of neurodegenerative diseases, according to new research. The research was led by dr. Bruce Trapp, chair of the department of neurosciences at Cleveland Clinic’s Lerner Research Institute, and was published in nature Communications in July 2014.

“Our findings suggest the immune system protects the brain after injury or during chronic disease, and this role should be further studied,” dr. Trapp says. “We could potentially harness the protective role of microglia to improve prognosis for patients with traumatic brain injury and delay the progression of Alzheimer’s disease, MS and stroke. The methods we developed will help us further understand mechanisms of neuroprotection.”

How Microglia WorkMicroglia are primary responders to the brain after injury or during illness. dr. Trapp’s team used an advanced technique called 3d electron microscopy to visualize this activation of microglia and subsequent events in animal models.

They found that, when chemically activated, microglia migrate to inhibitory synapses, which are the connections between brain

cells that slow the firing of impulses. Microglia then dislodge the synapse, thereby increasing neuronal firing and leading to a cascade of events that enhance survival of brain cells.

dr. Trapp’s past research has included investigating the causes of neurological disability in people with MS, the cellular mechanisms of brain repair in neurodegenerative diseases and the molecular biology of myelination in the central and peripheral nervous systems. In 2009, he received the national MS Society’s 2009 Stephen C. Reingold Award and, in 2013, he was inducted into the Society’s Volunteer Hall of Fame for Scientific Researchers. He also received the John dystel Prize in 2003, awarded jointly by the Society and the American Association of neurologists to recognize outstanding contributions to the field of MS research.

Originally published in the Ohio BuckeyeMS Connection newsletter.

The Role of Microglia

Dr. Bruce Trapp

RESEARCH

THE ROLE OF MICROGLIAA type of immune cell called microglia, which is widely believed to exacerbate chronic adult brain diseases such as multiple sclerosis, might actually slow the progression of neurodegenerative diseases, according to new research. The research was led by Dr. Bruce Trapp, chair of the Department of Neurosciences at Cleveland Clinic’s Lerner Research Institute, and was published in Nature Communications in July 2014.

“Our findings suggest the immune system protects the brain after injury or during chronic disease, and this role should be further studied,” Dr. Trapp says. “We could potentially harness the protective role of microglia to improve prognosis for patients with traumatic brain injury and delay the progression of Alzheimer’s disease, MS and stroke. The methods we developed will help us further understand mechanisms of neuroprotection.”

HOW MICROGLIA WORKMicroglia are primary responders to the brain after injury or during illness. Dr. Trapp’s team used an advanced technique called 3D electron microscopy to visualize this activation of microglia and subsequent events in animal models.

They found that, when chemically activated, microglia migrate to inhibitory synapses, which are the connections between brain cells that slow the firing of impulses. Microglia then dislodge the synapse, thereby increasing neuronal firing and leading to a cascade of events that enhance survival of brain cells. Dr. Trapp’s past research has included investigating the causes of neurological disability in people with MS, the cellular mechanisms of brain repair in neurodegenerative diseases and the molecular biology of myelination in the central and peripheral nervous systems. In 2009, he received the National MS Society’s 2009 Stephen C. Reingold Award and, in 2013, he was inducted into the Society’s Volunteer Hall of Fame for Scientific Researchers. He also received the John Dystel Prize in 2003, awarded jointly by the Society and the American Association of Neurologists to recognize outstanding contributions to the field of MS research. n

Originally published in the Ohio Buckeye MS Connection newsletter.

DR. BRUCE TRAPP

JOIN THE MOVEMENT: nationalMSsociety.org 12

AdVOCACYA Sea of Orange and A Ray of HopeHundreds of MS Activists from across

the country descended on Washington dC in March to discuss the Society’s federal legislative priorities during the 2015 Public Policy Conference. This year we encouraged Congress to pass the Advancing Research for neurological diseases Act / 21st Century Cures Initiative, the ensuring Access to Quality Complex Rehabilitation Technology Act, and to increase funding for MS Research through the Congressionally directed Medical Research Program (CdMRP) and the national Institutes of Health (nIH). To learn more about these initiatives, please visit http://www.nationalmssociety.org/Get-Involved/Advocate-for-Change.

National MS Society Upstate NY Chapter Advocacy and Program Manager Aaron Ward, Rochester Government

Relations Committee Chairman and Congressional District Activist Leader Doug Kaleta, and Director of Volunteer Engagement Michele Groden visited Congressional offices on Wednesday, March 11 during the 2015 Public Policy Conference.

Your Story MattersBecoming a MS Activist is critical to our

success. Your willingness to share your story of what it is like to live with MS and the challenges you face is vitally important to our advocacy efforts. If you would like to get more involved, please contact our chapter’s Advocacy and Program Manager, Aaron Ward, at aaron.ward@nmss.org or 518-464-0910.

Join us at Bike MS!Register before April 30 using the code APRILSHOWeRS15 for $7 off of the registration fee. Visit BikeMS.org to register now for one of our great rides:• Finger Lakes Challenge, Keuka College,

July 18 & 19• Great Lake escape, evangola State Park in

Buffalo, August 8• ROC the Ride, Genesee Valley Park in

Rochester, September 12• Hudson River Ramble, Birch Hill Country

Club, September 19

Refer a friend and we’ll send you a long-sleeved “Hero in Training” shirt! email Bike MS Manager Kerrie Merz at Kerrie.Merz@nmss.org to let her know that you referred a friend!

TOLL FREE NUMBER 1 800 344 4867 13

Start your Walk MS journey today! Registration is now open for 2015!

Walk MS:May 3, 2015

16 Locations across Upstate nY

(Buffalo: May 2)(S. Chautauqua: May 16)(n. Chautauqua: May 17)

To register, learn more, and get a full list of Walk MS locations, visit: www.WalkMS.org or call 1-800-344-4867 (press 2)

deVeLOPMenT

I Ride With MSIf you’ve ever been to a Bike MS event, then

you know that cyclists love to show team pride with colorful and creative jerseys. You may have also noticed cyclists wearing a special orange, blue and white jersey, with the words “I ride with MS” emblazoned on the front and back. These riders are part of a unique group of people living with MS who have chosen to take on the Bike MS challenge. The “I Ride with MS” program gives those living with MS an opportunity to raise awareness, educate others, and raise money for MS research and programming. Most importantly, “I Ride with MS” celebrates Bike MS cyclists who are also living with multiple sclerosis. “I Ride with MS” started as a pilot program in 2013, and in 2014 became a part of all Bike

MS events. Sponsors of the program include Genzyme, MS One to One, and Primal Wear. To learn more about Bike MS, the “I Ride with MS” program, or to register, visit BikeMS.org.

Join me at Walk MS

To find out more:www.walkMSupstateny.org1-800-344-4867 (press 2)

Help Our Friends & Neighbors Living with

Multiple SclerosisUpstate New York Chapter

14 JOIn THe MOVeMenT: nationalMSsociety.org

deVeLOPMenTFirst-timer Shares Her StoryMichelle Bonar was not sure what she was

getting herself into when she let her best friend Kelly Toomey talk her into registering for the 30-mile ride at last summer’s Bike MS: Southtowns Shuffle. “I needed to exercise and Kelly always talked about how fun cycling was, so I thought I would try it. Kelly’s mother was diagnosed with MS shortly after we graduated from high school. She always supports me when I drag her into something, so it was time to return the favor…I put together a whole training regimen, but life got in the way so I honestly only started training maybe three weeks before the ride,” Michelle said. She had not been on a bicycle since she was in eighth grade. Cycling became a new way to connect with her 12-year-old daughter Rylie. “My daughter thought it was great that I had a bike, so she and I would ride around the neighborhood at night after work.” Rylie was so inspired by her mom that she hosted several lemonade stands to raise money for her mom’s ride, and she volunteered at a rest stop along the route. As the day of the ride came around, Michelle says she was petrified. “I will be honest-- I cried a few times on the course. I really didn’t think I would make it. It was a very hilly ride and I walked up a few of them, but then I met a very nice experienced rider who was helping out with the ride. He actually ended up riding with me, encouraging me along the way, and it was nice to have conversation. I honestly don’t know if I would have finished if I didn’t bump into him because I was really ready to give up.” Michelle didn’t give up, and said she felt so

proud to have finished. “I felt so accomplished, and was determined to do it again without crying! I had a great experience. I was very grateful to everyone who supported and believed in me,” says Michelle. “Bike MS opened my eyes to cycling and I fell in love. My daughter and I ride all the time together. I ended up meeting a ton of great people. It made me want to get involved not only so I could help raise money but I could also help others enjoy riding as well. It is very rewarding being a part of the ride. You feel that you are helping to make a difference.” Michelle has joined the Buffalo “Great Lake escape” task force this year and says she hopes to see lots of new cyclists out on the (flat!) route. “I will be riding the 62-mile route this year and will definitely be in far better shape than I was last year because I will be on my bike as soon as the weather breaks!” If you would like to experience how rewarding a cycling event can be, visit BikeMS.org to learn more about the rides near you.

Michelle Bonar & Kelly Toomey

TOLL FREE NUMBER 1 800 344 4867 15

deVeLOPMenTOn the Move LuncheonThe fifth annual On the Move Luncheon hon-

ored Rochester volunteers and philanthro-pists leading the movement toward a world free of MS on Friday, March 6 at Locust Hill Country Club. The fundraising event supports those in-volved in the MS movement and also educates the public about MS. Seven individuals and two groups were acknowledged for their contribu-tions toward bettering the lives of those affect-ed by MS. Honorees included: Professionals on the Move, Thomas d. Muller of Fairport and Ken-neth Buschner of Honeoye Falls; Volunteers on the Move, Bob and Susan Touhsaent of Fairport and Linda d’Antonio of Webster; Inspirational People on the Move, Cyndee Cutri of Canandai-gua and Jean Cullinan of Lyons; and Groups On the Move, Ames Amzalak Memorial Trust and B. Thomas Golisano Foundation.

Cross the MS Finish LineWe know you love a good race – what a

thrill to cross the finish line after you’ve given your everything! How about adding to that the feeling of contributing to a cause you care about as you work toward your goals in the coming months? Sign up to race with a purpose and help us Finish MS. Have you set a goal to challenge yourself in a running, cycling, swimming, or other endurance event in 2015? don’t give up on your goal! If you’re registered (or plan to register) for any race event, you can race on behalf of the national Multiple Sclerosis Society. Visit finishMS.org and register your event now! Finish MS is a unique program which allows athletes like you to create a world free of MS. Your passion to better yourself also helps the lives of those living with MS. So whether you’re climbing a mountain, swimming in a competition, or running a marathon, cross the MS finish line. You will have access to powerful online fundraising tools to turn your participation in any third-party race event into a race for a good cause. Our online platform allows you to reach out to family, friends, and associates to raise funds for MS research. Finish MS also allows you to keep track of your progress throughout the year. Register your event now at finishMS.org, or contact Ashley Greenman for more information at Ashley.greenman@nmss.org. Participants who register and raise their first $50 online will receive a national MS Society running jersey.

Ashley Greenman, Senior Manager of Community Engagement, with On the Move Luncheon emcee Adam Chodak of 13 WHAM.

National MS Society President

and CEO Cyndi Zagieboylo

welcomes the audience and shares about

inspiring progress in MS research.

Connect with usFollow us on Facebook and Twitter

Go to www.facebook.com/MSupstatenY • Click on “Like” for updates, news, events, research, and moreOr follow us @MSupstatenY, @BikeMSupstatenY, @WalkMSupstatenY.

Join the conversation at MSconnection.org

Upcoming Chapter Events Location DateWalk MS Buffalo May 2Walk MS Various Sites Chapterwide May 3Walk MS Southern Chautauqua May 16Walk MS Northern Chautauqua May 17Newly Diagnosed Program Rochester Office May 21World MS Day Worldwide May 27Nutrition and Exercise for MS Cheektowaga May 30MS Service Day Chapterwide June 6Newly Diagnosed Program Cheektowaga June 9Everyday Matters Rochester May 26 – June 23Bike MS: Finger Lakes Challenge Keuka College July 18 & 19Bike MS: Great Lake Escape Buffalo August 8Bike MS: ROC the Ride Rochester September 12Bike MS: Hudson River Ramble Schodack September 19MS Service Day Chapterwide September 26

non-Profit OrgU.S. Postage

PAIdRochester, nYPermit no. 764

Upstate new York Chapter

national Multiple Sclerosis Society1000 elmwood Ave., Suite 900 Rochester, nY 14620-3901

CHAnGe SeRVICe ReQUeSTed

®

Visit our website, MSupstateny.org, for details on events and programs

Upstate new York Chapter

national Multiple Sclerosis Society1000 elmwood Ave., Suite 900 Rochester, nY 14620-3901

CHAnGe SeRVICe ReQUeSTed

FRee MATTeR FOR THe

BLInd And HAndICAPPed®

Connect with usFollow us on Facebook and Twitter

Go to www.facebook.com/MSupstatenY • Click on “Like” for updates, news, events, research, and moreOr follow us @MSupstatenY, @BikeMSupstatenY, @WalkMSupstatenY.

Join the conversation at MSconnection.org

Upcoming Chapter Events Location DateWalk MS Buffalo May 2Walk MS Various Sites Chapterwide May 3Walk MS Southern Chautauqua May 16Walk MS Northern Chautauqua May 17Newly Diagnosed Program Rochester Office May 21World MS Day Worldwide May 27Nutrition and Exercise for MS Cheektowaga May 30MS Service Day Chapterwide June 6Newly Diagnosed Program Cheektowaga June 9Everyday Matters Rochester May 26 – June 23Bike MS: Finger Lakes Challenge Keuka College July 18 & 19Bike MS: Great Lake Escape Buffalo August 8Bike MS: ROC the Ride Rochester September 12Bike MS: Hudson River Ramble Schodack September 19MS Service Day Chapterwide September 26

Visit our website, MSupstateny.org, for details on events and programs