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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 SSummer 2015 Upstate New York Chapter

What’s Better than a Muddy Obstacle Course?

®

ScholarsPage 5

Continued on page 4

Mucking through five kilometers of that mud-dy obstacle course to raise awareness and

funds for the MS cause! Upstate new Yorkers got down and dirty at the northeast Region’s Muck-Fest MS 2015 in May and June. The events in Bos-ton and new Jersey attracted 10 teams and 35 participants from our chapter to have fun in the mud—all for a great cause. MuckFest MS Boston and new Jersey raised more than $1 million to support crucial programs and research. Kaera Sawler mucks for MS, and she lives with MS. “MuckFest MS was awesome! I had a great team backing me with support and understand-ing throughout the course,” Kaera said. “Crossing the finish line with my team by my side, holding hands, was the best feeling in the world.” Kaera’s friends and family spent the day with her completing the chaos-of-mud obstacle course. She loved challenging herself to see what she can do. “My biggest challenges were the numbing of my legs and feet at the top of a taxing hill, and Beverley Chapman of Central

New York ziplines into the mud.

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: [email protected]

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

®

TOLL FREE NUMBER 1 800 344 4867 3

Gina Riccota is a Campaign Manager in the Buffalo

office. She graduated from SUnY Cortland with a Bachelor’s degree in Sport Management. She then obtained a Master’s degree

in Sport Administration from Canisius College. Gina has interned with the Cleveland Cavaliers, Cleveland Indians, and the Buffalo Bills in their Community Relations departments. She will oversee Walk MS and Monster Scramble 5K/10K in Western new York.

Kevin Connors, who prefers to be called KC, is a Campaign Manager in Albany. He will be responsible for organizing Walk MS and Monster Scramble 5K/10K in the Capital Region. KC was the

ticketing intern for the detuschebank Championship and the RBC Heritage Classic, both PGA Tour events. He was also the Social Media Coordinator for the Utica Brewers. KC graduated from SUnY Cortland with a degree in Sport Management.

At the chapter, it seems as if summer starts with

Walk MS. This year, Mother nature agreed. Beautiful sunny skies greeted the 11,000 participants at our 19 sites in May. Thank you to all who kicked off this important season with their fundraising efforts. And

thanks to those who are still fundraising to help us raise what’s needed for our local programs and important MS research. Summer is now in full swing with Bike MS. As I attend our four events and meet the passionate and committed people who ride for our cause, I am struck by the contagiousness of their energy and enthusiasm. Whether peddling 10 or 100 miles, these athletes have demonstrated their desire to do something about MS now and they are doing it from the seat of their bicycle. every year, more and more people discover the fun of

Bike MS and learn more about MS. I see many more people getting engaged in other chapter activities such as MS Service day or Monster Scramble 5K/10K. each ride offers something new and different. Finger Lakes Challenge is like a family reunion with many returning year after year and bringing new friends along to see beautiful Keuka Lake. Buffalo’s Great Lake escape is the newest ride that features stunning vistas and a fabulous post-ride party on the beach. ROC the Ride offers a short foodie tour of some of Rochester’s unique restaurants or longer rides to take in both the city’s urban landscape and the suburban and rural roads along the lakeshore. For me, summer will officially come to a close after the scenic Hudson River Ramble on September 19. I hope to see many of you at Bike MS this year, and if you have never experienced this truly spectacular event, I would encourage you to check out BikeMS.org to be inspired by what we can accomplish from our bicycles.

Chapter neWS

Stephanie Kunes-Mincer

Letter from the President Stephanie Kunes-Mincer, LMSW

Upstate New York Chapter Welcomes New Staff

JOIN THE MOVEMENT: nationalMSsociety.org 4

Chapter neWS

The national MS Society Upstate new York Chapter will hold its annual

meeting in Rochester on October 15, 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.

Save the Date for the Annual Meeting

Continued from coverthere was freezing water at another point of the course,” she said. even with these setbacks, Kaera finished the course on her feet! 2015 MuckFest MS still has many cities to go! Join the fun and visit http://www.na-tionalmssociety.org/Get-Involved to find a national MS Society event near you!

Team Dory completed MuckFest MS 2015 hand-in-hand.

New Partner in MS Care

dr. Peter Kinkel re-cently completed

the process of becom-ing a Partner 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: centers for comprehensive MS care, neurologic care, rehabilitation, and men-tal health. With a combined 40 years of service in neurology, multiple sclerosis, neuro-imaging, and movement disorders, dr. Kinkel pursues a vision of providing timely, quality patient care. Kinkel neurologic can be found at 5 Limestone drive in Williamsville. For appointments or in-formation about the practice, please call 716-632-9399. Thank you, dr. Kinkel, for all of your work on the behalf of people affected by MS.

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

Got Job Questions?

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: [email protected]. You will receive a response within 48 hours.

www.nationalmssociety.org/Get-Involved

5TOLL FREE NUMBER 1 800 344 4867

Chapter neWSCongratulations to Scholarship Recipients

MS shouldn’t stand in the way of an education. This is why the national MS

Society's scholarship program exists — to help highly qualified students who are living with MS or who have a parent with MS to achieve their dreams of going to college. This year, the Upstate new York Chapter is awarding eight scholarships, including two nationally ranked top scholar awards.

We’d like to thank our generous Scholarship Program sponsor: Genzyme. If you are interested in sponsoring the 2016 national MS Society Scholarship Program, please contact [email protected]. For more information about applying for scholarships, contact [email protected].

Taylor BozydajMassachusetts

College of Pharmacy and Health Sciences: doctor of Pharmacy

Program.

Sidney Christd’Youville College:

nursing.

Hannah PorterKenyon College:

Theater.

Matthew TopolskiUniversity at Buffalo:

Biochemistry.

Nicholas SkallaS.I. newhouse School of Public Communications at Syracuse University: Broadcast and digital

Journalism.

Jahnee HuberPlattsburgh State

University: Medical Technology.

John Rockwelleastman School of

Music: Music Performance,

Trumpet.

Mary BrimmerSkidmore College:

english.

National Top Scholars:


Bryan Kenny is an Audit

director at deloitte, a global accounting firm. Bryan served on the Upstate new York Chapter’s board of directors as treasurer from 2006 to 2010, and he currently serves as audit committee chairman.

Bryan decided to get involved with the chapter because he has some close friends and relatives who are living with MS. Bryan is an active member of the “Boardwalkers” Walk MS team. He volunteers his time and resources to assist the chapter’s accounting department in recording proceeds from the annual Walk MS event. Bryan was honored as a Professional On the Move in 2014, and both he and his wife are participants in the Monster Scramble 5K/10K. Outside of the national MS Society, Bryan is very involved in the Upstate new York community. In 2006, Bryan was recognized by the Rochester Business Journal as one of Rochester’s young business leaders at the annual “40 under 40” luncheon. As a graduate of Syracuse University, Bryan is an avid Syracuse sports fan, and he loves cheering on the Orange. In his free time, Bryan enjoys golfing and running.

VOLUnTeeRInGVolunteer Spotlight: Heritage Christian Services Volunteers

Meet a Board Member:Bryan Kenny

Walk MS takes place on one day, but so much happens leading up to the event.

One of the many things is the behind-the-scenes help from volunteers like a group from Heritage Christian Services. The group started volunteering on various projects last fall. They were such a hard-working crew that we invited them to be our regular weekly volunteers to come in and help with the hundreds of Walk MS packets that needed to be mailed. Starting in January, they organized, sorted, counted, bundled, folded, stuffed, and labeled for every packet, every week leading up to each of our Walk MS events in May. What an enormous task! The group is part of the Transition to Work program which teaches job skills to people so they can eventually be employed in the community, which is both empowering and enriching to each individual. A big thank you to these fantastic volunteers!

Left to right: Melinda Deatherage, Matt Hontar, Luba Shkavritko, Sue Dennie, Alicia Lenahan,

Nick Vatalaro, Dan Grella. Not Pictured: Erin Scott.


Chapter PROGRAMS

VOLUnTeeRInGCollege Students Gain Critical Skills for a Successful Career

Hillary Upton joined the Upstate new York Chapter team in the summer of 2013

as the Special events and Communications intern. during her internship experience, she was able to work on press releases and email blasts, managed social media accounts for major events, and got hands on experience planning and helping at Bike MS. She honed her written and verbal communication skills and learned how to organize and manage a major fundraising event—all while getting college credit. during her senior year at Allegheny College, she found a job opening at the Upstate new York Chapter and immediately applied. As a result of the skills she learned and the connections she made at the internship, she was offered a position as a Campaign Manager and currently works at the Society planning Walk MS events as well as Monster Scramble 5K/10K. Hillary believes that because of her internship,

she was able to develop the skills that have helped her start her professional career at the national MS Society. If you are looking to gain valuable work experience, build your resume, and help out with the MS movement in a unique way, look no further than the national MS Society, Upstate new York Chapter internship program. There are various internship opportunities at the Society in different fields such as finance, marketing, social work, and much more. To learn about the internship opportunities the Society has to offer, contact Ashley Greenman at [email protected] or call 585-271-0805 ext. 70322.

during the months of March and April, the chapter held our annual Research nights.

More than 250 people attended to learn about current global and local research, latest developments, and local studies. In addition to our knowledgeable speakers, vendors were available to highlight current treatments, and research recruiters were available to answer more specific questions about local studies. The national MS Society currently funds 8 researchers for $4,014,627 in the Upstate new York Chapter and 38 researchers for $14,642,030

MS Research: The Progress, The Promise

Continued on page 8


Chapter PROGRAMS

in new York State. The Society is the best investment in driving solutions and changing the world for people with MS. We would like to thank our supporters and sponsors for making this series possible; Allergan, Genentech, Genzyme, Mallinckrodt Pharmaceuticals, novartis, Teva neuroscience.

Continued from page 7

The national MS Society Upstate new York Chapter will hold its second Annual Health and Wellness Fair on Thursday, October 8, 2015 from 3 p.m. to 7 p.m. at the Holiday Inn express and Suites, 400 Old Loudon Rd, Latham, nY 12110. In addition to presentations on MS research and symptom management, speakers will discuss bowel and bladder issues as well as physical therapy. Vendors ranging from pharmaceutical companies to providers of other healthcare programs, services, and products are expected to attend. Last year more than 100 attendees and 50 vendors appeared at our Health and Wellness Fair which featured four different presentations. Please plan to join us in October for this educational, exciting, and fun event!

Annual Health and Wellness Fair Scheduled

Wellsville MS Meet and Greet

Join Partner in MS Care Susan e. Bennett, PT & Associates for the MS Wellness Program on

Tuesdays and Thursdays from 5:00 p.m. – 7:00 p.m. at the deGraff Wellness Center, 415 Tremont Street in north Tonawanda. This program allows people with MS the opportunity to work with physical therapy students for a $1 donation. For more information about the program, please call 716-690-2051.

MS Wellness Program

Are you in Allegany County and interested in meeting with other people affected by

MS? Please join us on Thursday, September 10 at 6:00 p.m. in the Walchli Room at Jones Memorial Hospital. We’ll be discussing national MS Society programs and services, a possible local support group, and giving a research update. To register, contact 1-800-344-4867 or [email protected].


did you know that november is national Family Caregivers’ Month? This year,

we’d like to celebrate by highlighting your experiences as a care-partner for someone with multiple sclerosis. Your story could be featured in the fall issue of the MS Connection, reaching thousands of individuals across Upstate new York. A partnership in care is no easy task. There are good days and bad, happy times and sad, days of laughter or even tears. Maybe you even overcame hurdles for your loved one. We’d like to share your stories so that other care-partners can utilize your wisdom, learn from your mistakes, and discover new resources. We may face different obstacles, but we’re all in this together! If you’d like to submit your story, please email [email protected] or send your story to national MS Society, C/O Megan Vaughan, 4245 Union Road, Suite 108, Buffalo, nY 14225.

Care-Partner Stories Wanted Everyday Matters in Buffalo

The everyday Matters pilot programs were so successful that we have scheduled another

session this year. Please join us in Cheektowaga on September 15, 29, October 13, 27 and november 10 from 6:00 p.m. to 7:30 p.m. each of us envisions a way we want our life to go, but for those with multiple sclerosis, that idea can change due to the challenges of living with a chronic, unpredictable and lifelong disease. This program is for people with MS and care-partners. everyday Matters: Living Your Best Life with MS teaches people how to incorporate principles of positive psychology into their lives. Participants will receive program materials, including Shawn Achor’s book, The Happiness Advantage. Space is limited, and there is an application process. To learn more, contact Megan Vaughan, at 1-800-344-4867 (press 2).

People newly diagnosed with multiple sclerosis had ample time to learn more about

MS and ask questions of dr. Keith edwards, director of the MS Center of northeastern nY when the Albany office of the national MS Society Upstate nY Chapter held a special educational dinner program on June 4, 2015. dr. edwards explained MS symptoms, treatments, and emerging therapies. To learn more about MS or to find out about programs like this in the future, please visit MSupstateny.org.

Multiple Sclerosis: Newly Diagnosed Program

Chapter PROGRAMS

msupstateny.org


ReSeARCHNew Directions In Diet and MS

To think that you might be able to change the course of multiple sclerosis, or at least

relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. That’s why it’s been exciting to see how many researchers were trying to do just that at the American Academy of neurology’s annual meeting, which took place in Washington d.C., this April. diet and MS was the subject of numerous platform talks and poster sessions, showing that clinicians and researchers are asking the same questions we hear so often from people who live with MS.

DIET AND MS SYMPTOMS In a small study, dr. Rocco Totaro and a team from the University of L’Aquila in Italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting MS. In their study, the participants’ percentage of body fat decreased, and their fatigue as measured by a clinical scale lessened significantly as well. We need more and larger studies like this, to show how diet may impact symptoms that affect the lives of people with MS. What does it mean for you now? A healthy diet certainly can’t hurt, and it may even help both MS and general health. (Abstract P2.211)

MORE ON SALT We’re hearing more and more about the possibility that salt may increase the immune

By Nicholas Larocca, PHDactivity in the brain and spinal cord in MS. A team from the network of Pediatric MS Centers showed that this may not be the case in children. Looking at salt intake prior to diagnosis among 174 children or adolescents with MS, compared with 337 people without the disease, they saw no increased risk of developing MS with excess sodium intake. It will be interesting to see if this finding is confirmed, and whether it helps us to understand if, when and how salt becomes a factor in MS. (Abstract S38.003)

COFFEE AND MS Previous studies have suggested that caffeine may protect against Alzheimer’s and Parkinson’s disease, but there haven’t been any definitive studies in MS thus far. So I was intrigued by a study by an international team led by Johns Hopkins University researcher dr. ellen Mowry, which looked at coffee consumption in two large data sets—in a group of 1,629 Swedish people with MS and 2,807 people without MS, as well as a group of 584 people with MS and 581 controls enrolled in the Kaiser Permanente health plan of northern California. In the Swedish study, drinking six cups of coffee a day was associated with a reduced risk of developing MS, and four cups a day did the same in the American study. Studies like this may help us figure out how to prevent MS in the future. What this study doesn’t tell us is whether or how drinking coffee may impact MS in people who already have the disease, so it’s probably not a good idea to increase coffee consumption until we know more. (S45.004)Continued on next page


ReSeARCHContinued from previous pageLOOKING IN THE GUT Gut bacteria is another area where research is increasing, and it presents the exciting possibility that probiotic strategies may ultimately be developed to treat MS. I’m pleased that a small pilot grant from the national MS Society helped launch the MS Microbiome Consortium, a collaboration of researchers in California, Colorado and new York who presented some early findings from their analysis of blood and stool samples from people with MS treated with glatiramer acetate, untreated individuals and healthy controls. They found differences in gut bacteria between the treated and untreated individuals and also between those with MS and healthy controls. The team recently won a Collaborative MS Research Center Award from the Society to

pursue this promising research. I’m eager to see more from this group, and to see how their findings can be translated into a way of stopping immune attacks in MS. (Abstract P2.205)

A NEW ERA not so long ago, searching the medical literature for “diet and MS” yielded little. I’m thrilled to see that we are entering an era where diet and lifestyle are truly considered to be factors that can help lead to innovative treatments and ultimately free the world of MS. Visit www.nationalMSsociety.org/signup to sign up for MS eNews and stay up to date on MS research. Nicholas LaRocca is the vice president of Health Care Delivery and Policy Research at the National MS Society. Originally published on MSconnection.org/blog.

Opportunities to Participate in MS ResearchALBANY:

The MS Center of northeastern new York is one of six centers participating in a new

research study sponsored by the new York State MS Consortium (nYSMSC). This new study, titled “Predictors of MS disease Activity Pre-Pregnancy, during, and Post-Partum,” focuses on the lives of women with MS and how their disease might impact family planning. The goal of the study is to gain more insight into preventing disease activity during the reproductive years, and in helping health care providers better inform their patients on family planning issues. The MS Center of nenY, in collaboration with Biogen and Mt. Sinai Medical Center

in nYC, is currently conducting a study titled “Investigating Indirect Mechanisms of neuroprotection of Tecfidera (dimethyl Fumarate) in Relapsing Remitting and Progressive Patients.” The objective of the study is to determine the effect of 24-month Tecfidera treatment on the neurotoxicity of cerebral spinal fluid, plasma, and imaging biomarkers of axonal damage, as well as define the composition of the “microbiome” of the gut, as it is well-established that gut-brain communication exists in humans. This aim of the study will address changes in the gut microbiome consequent to Tecfidera treatment. Biogen Protocol “ Multicenter, Randomized, Continued on page 12

MSconnection.org/blog


ReSeARCHContinued from page 11double-Blind, Placebo-Controlled Study of the efficacy and Safety of BG00012 (Tecfidera) in delaying disability Progression in Subjects with Secondary Progressive MS” is also enrolling participants. For more information about the above studies in Albany, contact Judy Button at 518-785-1000.

BUFFALO:

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, [email protected], or call 716-829-6724.

If you have relapsing-remitting multiple sclerosis (RRMS) and are between the ages of 18 and 65, consider participating in this study evaluating a new investigational drug that may help reduce relapses. Participation is voluntary. Qualified volunteers with receive study-related medical evaluations and study drug at no cost. If you qualify and agree to join the study, you will be involved for 12 months. If you are enrolled and decide you no longer want to participate in this voluntary study, you can end your participation at any time. Compensation for time and reasonable reimbursement for travel related expenses are available. For more information, contact: Michelle Rainka, Pharm.d at: 716-250-2038 or Amanda Jamison at 716-819-4117. A study will be used to evaluate the long-term safety of a specific MS treatment (Gilenya) or another disease modifying therapy (dMT) in patients with MS newly started with the study medication or treated with another dMT. To join the study, you must have a relapsing form of MS. This study is for patients who are considering starting Gilenya or are starting another dMT or started within six months of study entry. If you qualify and agree to join the study, you will be involved for 60 months. There are four mandatory visits required for this study. If you are enrolled and decide you no longer want to participate in this voluntary study, you can end your participation at any time. Compensation for time and travel related expenses are available. For more information, contact Caroline Kumm at 716-558-3492.

Continued on next page


ReSeARCHContinued from previous pageROCHESTER:

The Rochester MS Center is currently recruiting for the following studies:

• 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.

• A study in patients with neuromyelitis Optica. For more information, contact Cindy or eileen at 585-275-6673.

• A trial of Fingolimod or Copaxone in patients with relapsing MS.

For more information, call eileen Scheid, Rn, MSn at 585-275-6673.

AdVOCACYHaving a Say

After my diagnosis with multiple sclerosis in 1997, I knew that I would be faced

with obstacles, but didn’t know when they would occur or what they would be. I was a schoolteacher and coach, a former college athlete and father of two daughters. In my mind, I was still invincible.

YOUR BEST LIFE — DESPITE MS In 1999, my son was born and, like most fathers, I dreamed of the day I would get to run alongside him while teaching him how to ride his bike. That day came four years later. I placed my hand on his back and together we took off down the street ready for his first ride, or so I thought. My legs simply would not move. My son fell over on his bike and I could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment that I had looked forward to for years. My son is now 15 and all he’s ever known is a dad who has MS. He and his sisters, along with my wife, have grown into MS advocates who have attended State Action day in Kansas as well as Walk MS events for almost two decades.

By Brent Kirkhart

Having the support of your family at home is important, but so is physically having a home that can support your family — a home that can help you live your best life despite MS.

A HOME FOR USFor years, we lived in a California style splitlevel ranch house that had four flights of stairs. We loved our home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor. We bid adieu to our family home last year and prepared to make memories in a new space. Upon arriving, I found out that my family Continued on page 14

ADVOCACY

HAVING A SAY BY BRENT KIRKHART

After my diagnosis with multiple sclerosis in 1997, I knew that I would be faced with obstacles, but didn’t know when they would occur or what they would be. I was a schoolteacher and coach, a former college athlete and father of two daughters. In my mind, I was still invincible.

YOUR BEST LIFE — DESPITE MSIn 1999, my son was born and, like most fathers, I dreamed of the day I would get to run alongside him while teaching him how to ride his bike. That day came four years later. I placed my hand on his back and together we took off down the street ready for his first ride, or so I thought. My legs simply would not move. My son fell over on his bike and I could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment that I had looked forward to for years.

My son is now 15 and all he’s ever known is a dad who has MS. He and his sisters, along with my wife, have grown into MS advocates who have attended State Action Day in Kansas as well as Walk MS events for almost two decades. Having the support of your family at home is important, but so is

physically having a home that can support your family — a home that can help you live your best life despite MS.

A HOME FOR USFor years, we lived in a California style split-level ranch house that had four flights of stairs. We loved our home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor.

We bid adieu to our family home last year and prepared to make memories in a new space. Upon arriving, I found out that my family and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed handrails on the shower, replaced the tub with a walk-in shower, installed a larger stool and widened the door to the master bathroom so that my

BRENT KIRKHART ADVOCATES FOR POSITIVE CHANGE.Brent Kirkhart advocates for positive change.

14 JOIn THe MOVeMenT: nationalMSsociety.org

Legislation on step therapy, mail order pharmacies, and telehealth/telemedicine

topped the list of issues the new York MS Coalition Action network discussed with lawmakers on World MS day, Wednesday, May 27. We continue to look for additional MS advocates willing to share their stories with lawmakers. Sharing your story of living with MS or caring for someone who has MS helps educate lawmakers about why sound healthcare policies are essential to helping those living with MS overcome daily challenges. To learn how you can get more involved in MS Advocacy, please contact Advocacy and Program Manager Aaron Ward at [email protected] or 518-464-0910.

MS Activism in Action on World MS Day

AdVOCACYContinued from page 13 and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed handrails on the shower, replaced the tub with a walkin shower, installed a larger stool and widened the door to the master bathroom so that my chair could fit through the door. I didn’t think we would fall in love with a house like we loved our last home, but we did! For the first time in several years, I could finally move around to every corner of our home without relying on assistance.

A WAY TO TAKE ACTION Knowing my story, the national MS Society reached out to me about moving forward with a home modification tax credit bill known as the Kansas disabled Access Tax Credit. Last year, I was asked to speak and tell my story at Kansas MS Action day. not only did I get to speak in front of fellow MS activists, but I was invited to speak in front of the Senate State Tax Committee. As I spoke, I looked around the room and was overwhelmed by the concern and “want to help” expressions on the faces of committee members. The president of the committee took the floor and said, “We don’t usually do this, but I want to move this bill forward and vote right now to move this out of committee.” The group voted unanimously to do so.

STAYING THE COURSE Sadly, the bill did not move to the House before the session ended that year. during the interim time, I made it my mission to get to know

the state representative of my previous home’s district. As the new legislative session began, he and his colleagues made sure to get the bill moving and made it retroactive so that people who made modifications in 2013 could benefit as well. It was passed in 2014 through both houses and signed into law by the governor. It was exhilarating! It’s common knowledge that home modifications serve people living with disabilities — but home modifications also serve their families. Being able to make these modifications has given my family the comfort of knowing that I am safe. They know that together we can live in this house longer — as a family. Brent Kirkhart was diagnosed with MS in 1997 and is a member of the Society’s Government Relations Committee for the Mid America Chapter. Originally published on MSconnection.org/blog.


Tenth Anniversary WAMS to feature Breaking Bad Star

This year marks the tenth anniversary of the Women

Against MS Luncheon, better known as WAMS. WAMS is one of the premier networking luncheons in the Capital district,

and gives attendees the opportunity to network with area business women, hear an engaging guest speaker, win a fabulous purse and show their support for the national MS Society. For this special anniversary event, we are excited to welcome guest speaker RJ Mitte of AMC’s emmy and Golden Globe Award-winning dramatic thriller Breaking Bad. Fans of the show will recognize him as playing the role of Walter White Jr., the son of the show’s main character, who is living with Cerebral Palsy (CP). What fans of the show may or may not know is that off-screen Mitte is living with CP. The Louisiana native, who was diagnosed with CP at the age of three, has become an inspiration to his peers around the world by championing over his

CP in hopes of removing the stigma associated with disabilities. Since starring on Breaking Bad, Mitte has become a Hollywood success story, and is starring in two movies which are currently in production. Mitte has engaged in public speaking in order to bring awareness to his own encounters with bullying and prejudice and serves as the official Ambassador for United Cerebral Palsy and Shriners Hospitals for Children. Mitte does not let his disability define him. His perseverance and focus on his abilities is an inspiration to all people of all abilities. Join us at WAMS for his interesting and inspirational message. Reservations can be made online at MSupstateny.org (select “join an event” and find WAMS). Sponsorships and table packages are still available but expected to sell out. The WAMS Luncheon will take place on november 13 at the Hilton Garden Inn in Troy, nY. For more information about the event, email deanna Oliveri, Campaign Manager, at [email protected].

AdVOCACY

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NYS Legislative MS Alliance Grows Again

The Upstate new York Chapter has added four new members to the new York State Legislative MS

Alliance this year so far, bringing the total number of members to 19. We thank Senators Catharine Young and david Valesky as well as Assemblymen Peter Lawrence and Joe Morelle for joining. We continue to look for legislators interested in joining the Alliance, so if your Senator or Assembly Member has yet to join, please ask him or her to do so. We ask Alliance members to raise awareness and promote education about MS in our efforts to create a world free of MS.

We thank the new York State Senators and Assembly Members and local officials who spoke at Walk MS in May. Kickoff speakers included: Congressman Paul Tonko, new York State Senators Timothy Kennedy, Kathleen Marchione, Sue Serino, and Catharine Young, and new York State Assembly Members Janet duprey, Andy Goodell, Steve Hawley, Michael Kearns, Peter Lawrence, John Mcdonald, Phil Steck, and Carrie Woerner, Corning deputy Mayor Bill Boland, Fredonia Mayor Stephen Keefe, and Plattsburgh City Councilor Joshua Kretser.


deVeLOPMenTSunny Skies, Happy Smiles – Walk MS

Walk MS is our chapter’s number one

fundraiser. With a budget of $1.6 million dollars, this event is what funds most of our local programs and services, not to mention the $1.2 million that the Chapter has earmarked for national MS research. It is a huge undertaking with more than 400 volunteers at 19 Walk MS sites welcoming close to 11,000 participants. The money raised from these events went toward researching a cure for MS and funding programs and services to support people living with MS. Thank you to all those who walked, volunteered and fundraised

to end MS forever! enjoy these snapshots from Walk MS across the state. To view additional photos from the event, visit www.flickr.com/photos/upstatenychapter/sets/.

While Walk MS raised an incredible amount of money ($1.3 million as of press time), we are still short of the funds needed to support our mission. If you haven’t Continued on next page

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deVeLOPMenTContinued from previous pagealready, we encourage you to consider making a donation today at our website MSUpstateny.org! Participants with outstanding donations can send them to Walk MS, national MS Society, 1000 elmwood Ave, Suite 900, Rochester, nY 14620.

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Generous Donors Make Walk MS a SuccessWalk MS is a giant operation with 19 sites welcoming more than

10,000 participants. We rely heavily on the support of our corporate partners to make sure that our participants and volunteers have food, beverages, and an enjoyable experience. Sponsorship is key to making Walk MS a success, and we are truly grateful for our corporate partners! We would like to take a moment to thank these very special companies and organizations for their support in 2015. If you are interested in getting involved with Walk MS: 2016 as a corporate partner, please contact Christy Missico at 716.634.2573, ext. 70503 or via email at [email protected].

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1. Our President, Stephanie Mincer, and Bike MS Manager, Kerrie Merz, show off their Walk MS sunglasses with a few of our awesome volunteers. 2. Team Slow but Sure make the turn on the Onondaga Lake Parkway at Walk MS: Syracuse. 3. Girl Scouts at Walk MS: Canandaigua pose for a photo booth picture. 4. Team MS spirit at Walk MS: Plattsburgh. 5. Participants pose for the Instaphoto booth at Walk MS: Northern Chautauqua. 6. Volunteers at Walk MS: Rochester cheer on participants crossing the finish line. 7. Members of team Gomez at Walk MS: Buffalo. 8. Target volunteers at Walk MS: Lockport know what it is all about. 9. Mission in action at Walk MS: Saratoga. 10. A Batavia Walk MS participant signing the End MS Forever Mural.


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THANKS TO OUR NATIONAL SPONSOR novartis CHAMPIONS PARTNERSWIVB-TV news 4 BuffaloABC10/Fox AlbanyGenzymeOtis eastern Service

MISSION PARTNERSnYCMBiogenMallinckrodt PharmaceuticalsCrystal Rock

MOVEMENT PARTNERSAcorda PharmaceuticalsSahlen’sMasonic Care Communitynew York Institute of MassageWegmansSeton ImagingLattimore Physical TherapyentergyProfessional Photographers Society of CnY

CONTRIBUTING PARTNERSernst & Youngbängs SalonCapello SalonGuthrie HealthcareTrans Tech SystemsexcellusRich ProductsCdPHPCatalyst Fitness

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Give today at MSupstateny.org


Summer time means Bike MS time!

Summer is here at the national MS Society, and that means that Bike season is upon

us! Bike MS gives two-wheeled enthusiasts a chance to take a ride, meet a challenge or simply enjoy some exercise—all while helping raise critical funds for MS research and local programs. Are you or somebody you know interested in participating in Bike MS? Register online today at bikeMS.ORG using the code SUMMeR15 for $5 off your registration fee. If you’d like to get involved

and are unable to participate in a ride, consider registering as a Virtual Cyclist. For more information about becoming a participant, volunteer, or think you know of a business that would be interested in corporate sponsorship, please contact Bike Manager, Kerrie Merz at [email protected], or Campaign Manager, deanna Oliveri, at [email protected], or call 585-271-0805.

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Register TODAY with code HERO15 to save $5. bikeMS.org

ROC THE RIDE URBAN WATERWAY TOUR

ROCHESTER » SEPTEMBER 12

FINGER LAKES CHALLENGE 2-DAY WINE COUNTRY TOUR KEUKA LAKE » JULY 18 & 19

GREAT LAKE ESCAPE PARTY ON THE BEACH

LAKE ERIE » AUGUST 8

HUDSON RIVER RAMBLECOUNTRYSIDE RIDE

SCHODACK » SEPTEMBER 19

Register TOdAY. bikeMS.org


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Join us this fall for our third annual Monster Scramble

5K/10K in Buffalo (10/18/15), Rochester (10/18/15), Albany (10/31/15), Hudson Valley (10/18/15), Syracuse (10/18/15), and Utica (TBd). Mark your calendars for October 2015 and start training now! The Monster Scramble 5K/10K is just what you’ve been waiting for — a Halloween themed, chip-timed, fundraising run that’s sure to make your heart (and feet) race! Choose to run a 5K or 10K course. If running isn’t your speed, choose to walk along our one mile family-fun stroll route, collecting Halloween goodies along the way. We encourage participants to dress up and have fun! Prizes will be awarded

to top fundraisers, overall top finishers, best in each age group, and for the best costumes! Register as an individual or start a team and make your personal achievement of running a long-distance race even more memorable by helping those who live with the unpredictable challenges of multiple sclerosis. Be sure to visit monsterscramble.org beginning in July to get information on the race nearest you and to get registered!

Monster Scramble 5K/10K, a Spook-tacular event for the Whole Family!

Help us celebrate and honor those in Western new York who, through their volunteerism, philanthropy, and activism, have been champions for those living with multiple sclerosis.

The third annual Champions On the Move Luncheon, hosted by WIVB news 4’s anchor Jacquie Walker, will be September 11 at the Buffalo Marriott niagara in Amherst. Check out our website, MSupstateny.org (select “join an event” and then Champions On the Move) to see who we are honoring this year. Please join us as we come together to shine the spotlight on those in the MS Movement who are making a difference in Western new York while raising funds for local programs and MS Research. Call Valerie Hoak at 716-634-2573, ext. 70373 for reservations or more information. Table packages, corporate sponsorships and advertisements in the program are available.

Western New York’s Champions On the Move

Champions On the Move LuncheonSeptember 11, 2015

11:30 a.m.Buffalo Marriott Niagara


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Once in a while, a challenge calls that you simply must answer. Challenge Walk MS is the perfect way to embrace a personal challenge of spirit and strength, while making an important difference in the lives of people living with MS.REGISTER TODAY & GET A HEAD START ON FUNDRAISINGAs soon as you register, you’ll have access to our online fundraising tools that make fundraising easier and more convenient than ever! A minimum fundraising goal of $1,500 is required, but we’ll be with you every step of the way.

3 DAYS. 50 MILES.CONNECT TO END MULTIPLE SCLEROSISREGISTER NOW: MSchallengewalkcapecod.org or 800.344.4867

Are you Looking to Run a Marathon (or Half-) with Purpose?The national MS Society Upstate new York Chapter is the charity partner of the Adirondack

Marathon. So, if you’re looking for a marathon — here’s your chance to run with a purpose! Join the team in Schroon Lake on Sunday, September 27, 2015.Participants will receive:· Free registration for half or full marathon*· Free ticket to pre-event pasta dinner· Professional training resources through Training Peaks software· Access to online tools to help with fundraising efforts*Fundraising minimums to apply: $750 for half marathon; $1,000 for full marathonRegister now to start your training and fundraising!For more information or to register, contact Ashley Greenman at [email protected] or 585-271-0805 ext. 70322.

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

®

Upcoming Chapter Events Location DateBike MS: Great Lake Escape Buffalo August 8MS Meet and Greet Wellsville September 10Champions on the Move Buffalo September 11Bike MS: ROC the Ride Rochester September 12Everyday Matters Program (first session) Cheektowaga September 15Bike MS: Hudson River Ramble Schodack September 19MS Service Day Chapterwide September 26Charity Day at Raymour & Flanigan Multiple Showrooms September 26Monster Scramble Multiple Sites OctoberHealth and Wellness Fair Latham October 8Annual Meeting Rochester October 15WAMS Albany November 13

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

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

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®

Upcoming Chapter Events Location DateBike MS: Great Lake Escape Buffalo August 8MS Meet and Greet Wellsville September 10Champions on the Move Buffalo September 11Bike MS: ROC the Ride Rochester September 12Everyday Matters Program (first session) Cheektowaga September 15Bike MS: Hudson River Ramble Schodack September 19MS Service Day Chapterwide September 26Charity Day at Raymour & Flanigan Multiple Showrooms September 26Monster Scramble Multiple Sites OctoberHealth and Wellness Fair Latham October 8Annual Meeting Rochester October 15WAMS Albany November 13

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

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

connection - national multiple sclerosis society · connection moving toward a world free of ms...

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