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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 SSpring 2014 Upstate New York Chapter

Walk MS – Mobilizing an Entire Campus because We are Not Alone

Rachel Klink, a sophomore at the University of Rochester, is rallying her college campus

for Walk MS 2014 in Rochester. Rachel, captain of team Tafel-Strong, is determined to mobilize her friends and peers for this year’s event. Her primary goal is to raise awareness about multiple sclerosis, a disease that suddenly impacted her family in January. “Before my mother was diagnosed, I had never heard about this terrible disease, and many people I know don’t know anything about MS,” said Rachel. “So I am trying to raise awareness while getting more people involved with the Walk MS event.” Rachel, a Syracuse native, stumbled upon the Walk MS event while perusing the national MS Society Upstate new York Chapter’s website. “My entire family is participating in Walk MS in Syracuse in support of my mom, but I did not have the ability to travel to the event,” said Rachel.

“When I found out that there is an event right across the street from me at Genesee Valley Park, I knew the convenient location would give me a chance to support my mom and encourage others here to get involved too.” Rachel receives her motivation from her mother’s positive attitude and strong will. The collective support and encouragement from friends and community members have been essential for Rachel’s mother and immediate family. “I don’t feel like I can do much because my mother is the one with the disease,” said Rachel. “But I am going to try to do whatever I can to help her, and Walk MS is a great start.” Rachel remains optimistic and plans to send a group photo of Team Tafel-Strong to her mother on the day of the event to say, “You are not alone in your fight against MS.” Walk MS is a great place to see, first hand, that we are not alone in the movement to end MS forever. To make a pledge to a Walk MS team or to register now, visit walkMSupstateny.org.

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Honorees recognized during MS Awareness Week - Page 5

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 Office1650 South Avenue, Suite 100Rochester, nY 14620-3901

Syracuse OfficeP.O. Box 2173Syracuse, nY 13220

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 development

Shari Mazzella - director, Programs & Services

2014 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 Buschner Anthony M. CortinaKeith edwards, MdKevin espinosa Robert Fluck nancy 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. Wardwell

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TOLL FREE NUMBER 1 800 344 4867 3

Chapter neWS

The weather is warm-ing up (finally), the days

are getting longer, and the chapter is gearing up for its largest event of the year, this could only mean one thing…it’s time for Walk MS! This is a time for fami-lies, friends, and colleagues to join together and make

a difference for everyone affected by MS. This year, Walk MS will be taking place in 19 locations around the state, making it easy for everyone to have an experience unlike any other — a day to come together, to celebrate the progress we’ve made and to show the power of our connections!

This year our goal is to raise $1,433,550 to help us in our vital work of supporting cutting-edge research and life-changing programs — with the ultimate aim of ending MS forever. I have met so many team captains this year who have been

Letter from the PresidentStephanie Kunes-Mincer, LMSW

committed to growing their teams by using their connections and raising the bar for their fundrais-ing goal. I have also met many supporters who are, for the first time, forming teams and eager to participate in Walk MS and make a statement about their commitment to those living with MS.

With each step during Walk MS, we are mov-ing forward with purpose. We walk with triumph for all the research successes we have seen. We walk with expectation for all the advances we are hoping for in the future. And we walk with resolve for the day we will say goodbye to MS forever!

Thank you for your support of this great event and to all those living with MS. Looking ahead, the Society is committed to fueling research by increasing its annual investment to $50 million in 2014 — because understanding and ending MS can’t come fast enough. Through all of our con-nections and determination, we are sure to end MS forever.

Stephanie Kunes-Mincer

ALBAnY BATAVIA BInGHAMTOn BUFFALO MAY 03, 2014CAnAndAIGUA CORnInG/eLMIRA/BATH GReeCe SOUTHeRn CHAUTAUQUALOCKPORT MOHAWK VALLeY

Walk MS will take place in the following locations on May 4 unless otherwise stated:OneOnTA PLATTSBURGH POUGHKeePSIe ROCHeSTeR SARATOGA SYRACUSe WATeRTOWn WeLLSVILLe nORTHeRn CHAUTAUQUA MAY 18, 2014

walkMSupstateny.org

JOIN THE MOVEMENT: nationalMSsociety.org 4

Team Totally Awesome, pictured here with their signa-ture pose, was recognized as a Group on the Move at the On the Move Luncheon.

Chapter neWS

MS Awareness Week 2014: Every Connection CountsMarch 3 – 9 was an incredible MS Awareness

Week — the foundation of our year-round awareness efforts. Staff and volunteers across the chapter joined together to impact communities across the state to raise awareness about a dis-ease that destroys connections in the brain. We are defying this disease with the very thing it seeks to destroy: COnneCTIOnS. every connec-tion counts, so we have been busy building con-nections. during MS Awareness Week, volunteers and activists met with city and county executives

Buffalo Researcher Awarded $554,000 to Study Myelin-Forming CellsThe national MS Society has awarded a three-

year, $554,973 grant to Fraser Sim, Phd, to study the muscarinic receptor regulation of differentiation among oligodendrocytes, the myelin-forming cells. dr. Sim and his fellow Univer-sity of Buffalo researchers are investigating the ability of an FdA-approved drug to improve

myelin synthesis and repair in mice. dr. Sim is an assistant professor at the Universi-ty of Buffalo. He received his BS in natural sciences and Phd in neuroscience from the University of Cambridge. He underwent postdoctoral training in neuroscience at the University of Cambridge and Cornell University Medical College. dr. Sim was a Wellcome Trust Summer Scholar, a Pem-broke College Foundation Scholar, and a recipient of the Medical Research Council Studentship. dr. Sim’s study is one of 38 new MS research projects the Society recently launched, with multiyear commitments of more than $19.4 mil-lion. This financial commitment is the latest in the Society’s relentless research effort, investing more than $48 million in 2013 to fund 380 new and ongoing studies to move closer to a world free of MS. Contributions to the Society’s nOW (no Opportunity Wasted) Campaign are crucial to fueling these research initiatives. If you would like to donate to the nOW campaign, visit our website, MSupstateny.org, and click on the green box on the lower right side of the page.

Fraser Sim, PhD

Annual Meeting Slated for October

The national MS Society Upstate new York Chapter will hold its annual meeting in October 2014 in Buffalo, nY. The meeting will elect board members for fiscal year 2015 and report results for fiscal year 2014. If you would like to submit a candidate for consideration for service, please send letter of interest and resume to the chapter headquarters: Care of Governance Committee Chair, 1650 South Ave., Suite 100, Rochester, nY 14620.

5TOLL FREE NUMBER 1 800 344 4867

Eboni Hayes presented about MS Awareness Week at the Buffalo Common Council.

MS Ambassador Kerrie Giesen prepares to share her experience with MS on WXXI’s “Connections” with Evan Dawson during MS Awareness Week.

Kirkwood Personius receives the Lifetime Achievement Award for his philanthropy and commitment to supporting programs and services for people with MS.

Young Person on the Move Krystle Van Atta (right) en-joys her afternoon at the On the Move Luncheon with her mother Elaine Van Atta.

Professional on the Move Lisa Capizzi, CPA, poses with her sister and inspira-tion, Lorrie Modica.

to share their stories and ask for support from leadership to advance the cause in their commu-nities. Businesses supported the cause with “wear orange” days and educational displays. In various areas, we also worked with people affected by multiple sclerosis to share their stories with the public and get the word out about this disease that impacts so many people. every connection we made during MS Awareness Week was with the purpose to engage more people in the move-ment to create a world free of MS! Visit MSconnection.org to share why you con-nect and to connect with others who are active in the MS movement. A highlight of MS Awareness Week in the Rochester area was the fourth annual On the Move Luncheon. This event, sponsored by Bio-gen Idec, novartis Pharmaceuticals, and Modica and Associates, was held on March 7 at the Lo-cust Hill Country Club in Pittsford. Channel 13 WHAM/CW anchor norma Holland and Upstate new York Chapter President and CeO Stephanie Kunes-Mincer presented the honorees with their respective awards.

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Christopher & Banks employees in Greece dressed in orange and shared informa-tion with customers to raise awareness.

Inspirational Person On the Move Bob Besigel is pictured at the On the Move Luncheon with Dee Mascari (left), Upstate New York Chapter Programs and Services Manager, and Ashley Greenman (right), Upstate New York Chapter Senior Manager of Community Engagement.

Visit the chapter Facebook page at www.facebook.com/MSupstateNY to see more pictures from MS Awareness

Week and the On the Move Luncheon.


Chapter neWS

The national MS Society Upstate new York Chapter is pleased to announce a new part-

nership with the clinical director of Lattimore of Geneseo Physical Therapy, Johanna Raymor, PT,

dPT. Johanna’s interest in MS care began in 2011 when she participated in a college research proj-ect focusing on the impact of exercise on

physical function and fatigue in people with mul-tiple sclerosis. now, as the clinical director of an outpatient facility, Johanna works directly with people affected by MS to help improve physical activity and function. The Partners in MS Care distinction honors Johanna’s commitment to providing exceptional MS care and a continuing partnership with the Society to address the chal-lenges of people affected by multiple sclerosis.

New Partnership in MS Healthcare

Partners in MS Care is a national MS Society program that recognizes and supports quality MS care. The Society believes that people living with MS receive optimal care and support when strong collaborative relationships exist between healthcare professionals and the Society. To be-come a Partner in MS Care, the provider must have MS experience, demonstrated MS knowl-edge, and involvement in the MS community and in national MS Society activities. If you are a health care professional interested in becoming a Partner in MS Care, please contact Shari Mazzella for more information at [email protected].

Meet a Board Member: Kevin Espinosa

Chapter Welcomes New Campaign ManagerJohanna Raymor has been named

a Partner in MS Care.

Kevin Espinosa at the Champions on the Move Luncheon in Buffalo with Senior Campaign Manager Maria Batt.

Kevin espinosa, Vice President and Counsel at M&T Bank in Buffalo, was elected to the chapter’s board of directors in January. Kevin joined the MS movement four years ago as a task force

member for the annual Champions On the Move Luncheon in Buffalo. Kevin is motivated to make a difference in the lives of people with MS primarily because his mother is living with the disease. Kevin hopes his role with the board will enable him to motivate more people to get involved with the Society and the MS movement.

The Upstate new York Chapter welcomes Holly

Caiello as Campaign Manager in Syracuse. Holly will be responsible for organizing Walk MS events in Syracuse, Mohawk Valley, Watertown, and Binghamton. Holly is a graduate of Syracuse University where she specialized in business communications.


VOLUnTeeRInGVolunteer Spotlight on Advocacy Volunteers:The Brimmer Family

Amy Brimmer (seated, second from left) appeared on HealthLink WMHT/PBS in February to talk about how multiple sclerosis has affected her family. Also pictured: Julie Bink, Dr. Keith Edwards, Benita Zahn, Aaron Ward, and Tammy Skellie-Gilbert.

Raising awareness about multiple sclerosis is a “journey” for the entire Brimmer family of

Gansevoort. Tim Brimmer was diagnosed with relapsing-remitting multiple sclerosis in 2007, just two days before he turned 46. For more than a year and a half, Tim endured countless doctor visits, testing, ambulances and hospital admissions to ultimate-ly hear the words: “you have MS.” In Tim’s case, the disease has now become sec-ondary progressive. To further complicate mat-ters for this young family, Tim suffered a stroke in April of 2007 and was airlifted to Albany Medical Center. The stroke further exacerbated the MS. In november of 2013, Tim contracted a very seri-ous and often fatal infection called C-difficile that combined with the MS, and has prevented him from working to provide for his family. “I knew it was bad when they asked me if I wanted them to call the priest in the middle of the night,” said Tim. He almost didn’t make it and claims (while smiling) that he has nine lives but is not sure which life is currently on the line. Tim and his wife, Amy, have three children ages, 20, 17, and 11. Amy explains, “the entire family has multiple sclerosis and we have all been greatly affected by it, most especially our chil-dren.” The Brimmers have banded together from day one to share their story in the hope that it may help someone else who is on a similar jour-ney. The family participates in Walk MS: Saratoga annually.

Amy recently appeared on “HealthLink with Benita Zahn” on PBS to share about the impact of multiple sclerosis and what people can do to help. “It was an amazing opportunity to reach out to others and share our personal story about multiple sclerosis,” said Amy. “I was honored to be asked to be part of the program from a caregiv-er’s perspective. People need to know that they are not alone and to ask for help. There is help out there but you cannot be afraid to ask because you are going to need it.” As the family raises awareness in their com-munity and beyond by sharing their experience, they hope that more people will act and join the movement to end MS. If you face a similar situ-ation as the Brimmer family or just want to get more involved in MS Advocacy and share your story of living with MS, please contact Advoca-cy and Program Manager Aaron Ward at [email protected] or 518-464-0910.


Webster Triathlete Headed to Ironman Competition to “Finish MS”

Linda D’Antonio at Peasantman Triathlon,

credit Mike Cheliak.

Webster resident Linda d’Antonio, a 49-year-old triath-

lete diagnosed with multiple sclero-sis in 2001, is currently training for the Coeur d’Alene IROnMAn compe-tition in Idaho. The race takes place in June this year, exactly 13 years to the month when she had her first epi-sode with symptoms of MS. Linda was diagnosed with mul-tiple sclerosis just weeks before her wedding, which took place in Hawaii in July 2001. now, she hopes to return to Hawaii this year with another pur-pose: to participate in the Hawaii IROnMAn world championship as a statement of triumph over MS. Though she has always been an endurance ath-lete, she has fought through the challenges of MS during the past decade to get to where she is now. Her quest has been dubbed “Iron for MS,” and she is determined to raise $15,000 for MS re-search through the platform, Race to Finish MS. “I don’t want to do this just for me,” said Lin-da, “Focusing just on me feels a little bit empty,

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but doing this and connecting with others allows me to inspire and help people who are impacted by some-thing that is so personal to me.” Linda’s dream is to put an end to the disease that has strongly im-pacted her life and the lives of many others. While she’s training for the IROnMAn, she is simultaneously par-ticipating in Race to Finish MS. Linda’s Iron for MS team is open to anyone who seeks to train for an endurance event while raising awareness and funds for the MS cause.

“Through Race to Finish MS, I feel like I can reach out to people and inspire them to dream,” said Linda, “MS changes your life, but we have to keep moving forward and use our experiences for good.” After her diagnosis, Linda struggled for sever-al years, but still moved forward with the goal of improving her health and regaining at least some of her former athletic abilities. On June 27, 2011, exactly 10 years to the day of her first episode of multiple sclerosis, she completed a 100-mile bike ride. now, 13 years after her diagnosis and in the year she turns 50, Linda has even bigger goals: two IROnMAn events and $15,000 closer to a cure for MS. To learn more, visit finishMS.org or contact Ashley at [email protected].

Calling all Endurance Sports Enthusiasts!

Here’s your chance to raise awareness and funds for the MS movement while

participating in any third-party endurance event. Swim, run, paddle, snowshoe,

or participate in any distance event to show your commitment to finish MS. Visit finishMS.org for training resources and to

register your distance event today.


RAMS East Social Support Group Honors Area Businesses and Organizations

Moving FORWARD with MSIf you’re newly diagnosed, newly coping, or just want to ask some questions – join us for Moving Forward with MS on Monday, June 16, 2014 from 6 to 7:30 p.m. at the National MS Society, Buffalo office (4245 Union Road, Suite 108, Cheektowaga). Learn more about multiple sclerosis, the National MS Society, and meet others going through the same process. To register for this program, call 1-800-344-4867 or email [email protected] by June 12.

The RAMS (Rochester Area MS) east Social Support Group chooses an MS awareness

project each year. during MS Awareness Week, the group recognized area businesses and or-ganizations that make an extra effort to be accessible to people with disabilities. Group members were asked to offer nominations in Webster, where the group meets, and sur-rounding areas. nominees were presented with a certificate of recognition and a letter explain-ing why they were nominated. Many recipients have been encouraged by this recognition and proudly display their certificates while remain-ing aware of individual needs for physical adap-tations and services to increase accessibility to their community. The RAMS east Social Support Group is one of our chapter’s longest running support op-tions. The group has been meeting for more than 30 years. during this time, the Webster Women’s Club has been faithfully and gener-ously providing lunch for about 20 members

Chapter PROGRAMSChapter-wide Spanish Telephone Self-Help Group

Grupo de Autoayuda en Español por el Teléfono

We are hoping to hold a telephone self-help group for people who have MS and Span-

ish is their first language. We have a facilitator and we are now seeking participants. Please contact dee Mascari at 800-344-4867 or [email protected] with your name and phone number if you are interested.

Tenemos esperanza de tener un grupo de au-toayuda para personas que tienen MS (escle-

rosis multiple) y hablan en español, su lenguaje preferido. Tenemos la persona que puede facilitar el grupo, ahora necesitamos los participantes. Por favor llamen a dee Mascari, 1-800-344-4867 o es-criban a [email protected] con su nombre y número de teléfono si tiene interés en este grupo.

twice a month. Lunch involves a lot of social-izing and is followed by a discussion or activity. If you live in the Rochester area and would like more information on this group or would like to join us, please contact dee Mascari at 800-344-4867 or [email protected].


Chapter PROGRAMSCogniFitness Challenge

Approximately 50 percent of people with MS will experience some kind of cognitive dys-

function. Join us on Wednesday, May 21, 2014, at 6:30 p.m. at Jones Memorial Hospital in Wells-ville for CogniFitness Challenge. Learn strategies to help with memory, recall, reasoning and com-munication, and speak with others about their strategies for cognitive fitness! Call 1-800-344-4867 or email [email protected] by May 16 to register.

Opportunities to Participate in MS ResearchBuffalo The Pediatric MS & demyelinating disorders Center at Women & 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 re-search 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. The Motor Speech disorders Laboratory in the department of Communicative disorders and Sci-ences at the University at Buffalo is currently recruit-

ing participants with multiple sclerosis to help us learn how neurological conditions impact speech and how to optimize clinical therapies for improving speech. Participants will have their speech audio-recorded to a computer during speech tasks (e.g., reading sentences, short paragraphs). Participants will also perform memory and thinking tasks (e.g., remembering words and shapes, sorting cards, and describing this task). A total time commitment of about two hours during a single session is required. Some of the study qualifications include speak-ing standard American english, adequate vision for reading, and passing a hearing screening on the day of the session. Compensation is available. For more information contact Lynda at 716-829-5557 or email [email protected].

ReSeARCH

A comprehensive MS Program will be held at the Albany Marriott on Saturday, May

3, 2014, as an informative day for people with MS and their loved ones. MS specialists from Harvard Medical School and the Albany area will speak on current aspects of MS. A ques-tion-and-answer period will follow the sched-uled program. Those interested in registering for the program should call in advance to the MS Center of northeastern new York at 518-785-1000 or 518-785-5033. Space may be limited, so it will be necessary for all attending to pre-register.

Upcoming Program in Albany


ReSeARCH denT neurologic Institute is conducting the fol-lowing trials, for more information on any of these studies, call 716-250-2038 or 716-819-4117.• If you have relapsing-remitting multiple sclero-sis and are between the ages of 18 and 65, you may qualify to join a study evaluating a new investiga-tional drug that may help reduce relapses. Qualified volunteers will receive study-related medical evalua-tions and the study drug at no cost. Compensation for time and reasonable reimbursement for travel expenses are available. • If you are being treated for a relapsing-remitting form of MS, a voluntary research study is being con-ducted to evaluate different medications that treat RRMS. There are basic eligibility requirements, call for more information. Qualified participants will re-ceive study-related exams and the study medication at no cost.• eXPAnd is a clinical trial that will evaluate an in-vestigational therapy for secondary-progressive MS. Participants in eXPAnd will need to take the investi-gational drug by mouth daily and will be examined every three months by study staff. About one-third (determined randomly) of people who participate in eXPAnd will receive a daily placebo instead of the in-vestigational drug. There are basic eligibility require-ments, call 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 recruiting for a study that will look at whether vitamin d is effective in re-ducing relapses and new MRI lesions in people with MS. Study participants will receive high-dose or low-

dose vitamin d for two years. All participants will be given glatiramer acetate (Copaxone) for free during the study. Participants need to be starting or restart-ing Copaxone. To find out if you are eligible to par-ticipate, call Cynthia Irish, Rn, MSCn, CCRC, at 585-275-6120. novartis is sponsoring a clinical research study at the Rochester MS Center to compare two doses of fingolimod with glatiramer acetate, and to evaluate the effectiveness and safety of fingolimod for peo-ple with relapsing-remitting MS. For more informa-tion, contact eileen Scheid at 585-275-6673.Online Patients’ Perspectives on doctors and Pharma Researchers at the University of Vermont, Oregon Health and Science University, the University of Colorado, and dartmouth College are conducting a research study to understand the perspectives of people living with MS about their relationships be-tween their doctors and the pharmaceutical compa-nies that develop new medications. In this study, re-searchers are interested in hearing from people with MS about their opinions on how physicians disclose financial relationships with a pharmaceutical com-pany, especially as those relationships relate to clini-cal research. This study is an online survey that takes approximately 15 minutes. To complete the survey, please visit www.surveymonkey.com/s/MSCOIsurvey. For any questions about the study, please contact Andrew J. Solomon, Md, at [email protected] or by calling 802-847-4589.


New Research On Wellness and LifestyleOne of the national MS Society’s priorities is

to drive research on wellness and lifestyle, where advancements could make a difference in the quality of life for people living with multiple sclerosis. These studies are also offering clues to risk factors that could help determine who is more likely to develop MS, which could lead to preventive strategies to end MS forever.EXERCISE AND MEMORYAerobic exercise has been shown to increase the volume of an area of the brain associated with memory, called the hippocampus, so Victoria Leavitt, Phd, of the Kessler Foundation Research Center in West Orange, n.J., and her colleagues conducted a small pilot study to determine the effects of aerobic exercise on two people with MS who experienced memory impairment. One person was randomly assigned to an aerobic exercise program involving stationery cycling, and the other was assigned to a non-aerobic exercise program of stretching. each program consisted of three 30-minute sessions per week for 12 weeks. Before and after the program, MRI images were taken to assess the size of the hippocampus; functional MRI images were taken to assess real-time brain activity; and memory assessments were also conducted. The researchers found that aerobic exercise resulted in a 16.5 percent increase in hippocampal volume, a 53.7 percent increase in memory and a significant increase in hippocampal activity. no significant changes occurred in the person doing nonaerobic exercise (neurocase, published online October 4, 2013). These preliminary results need further confirmation, but are in line with

ReSeARCHan emerging body of evidence showcasing the potential of exercise to provide broad benefits for people with MS. The Society is funding several studies exploring the potential benefits of exercise, including a trial of aerobic exercise as a strategy to treat cognitive dysfunction.FATTY FISH AND MS Fatty fish, such as herring, mackerel, tuna, salmon and trout, are a major source of vitamin d, which has been associated with decreased MS risk. Maria Bäärnhielm, Phd, and colleagues from the Karolinska Institutet in Stockholm studied

whether fatty fish intake was associated with whether or not a person develops MS. They looked at a sample of 1,879 people with MS and 4,135 people without the disease; both groups had answered questionnaires as part of the epidemiological Investigation of MS, a study comprising

Swedish-speaking subjects between ages 16 and 70 from certain areas of Sweden. The team analyzed survey answers concerning fatty and/or lean fish intake, sun exposure and other factors, as well as blood samples to analyze vitamin d levels.They found that frequent fatty fish intake was associated with decreased occurrence of MS and that no significant association was found between intake of lean fish and MS. Among 1,178 people with MS and 1,410 without MS for whom blood samples were available, vitamin d levels were higher in those with high fatty fish intake. This work was supported by the Swedish Medical Research


ReSeARCH

AdVOCACY

Council and other agencies (Multiple Sclerosis Journal, published online October 24, 2013). This study adds to the growing body of research suggesting the possible benefits of vitamin d for people with MS and the role of vitamin d in lowering risk of developing MS. A Society-funded clinical trial of vitamin d supplementation is ongoing in people with relapsing-remitting MS. Read more about vitamin d research at www.nationalMSsociety.org/vitamind.LOOKING AT LIFESTYLE The Ausimmune Study, partly funded by the Society with the national Health and Medical Research Council of Australia and others, was launched to investigate whether increased exposure to sunlight and vitamin d may be protective against MS in people who had not yet been diagnosed with MS, but who had

State Action Day: Activists in Action For Those Living with MS

Government Relations Committee Members and MS Advocates and Activists warmed the

hearts and minds of new York State Senators and Assembly members as well as their staff mem-bers on State Action day in February. Advocates representing districts throughout the 50-county Upstate new York Chapter gathered in Albany to encourage lawmakers to oppose the proposal to eliminate spousal refusal, support the Governor’s Article VII bill addressing out-of-network cover-age, support the development of telehealth/tele-medicine services to increase access to medical services, and to join the new York State Legisla-tive Multiple Sclerosis Alliance. State Action day allowed staff, advocates, and activists to connect, share ideas, and use their passion for helping those with MS in meaningful and powerful ways.

For more information about the 2014 new York State Budget-Related Legislative Agenda, please contact Aaron Ward at [email protected] or 518-464-0910.

State Action Day attendees gathered on the steps of the legislative office building, showcasing all three New York State chapters that work together as the New York State Multiple Sclerosis Coalition Action Network: Upstate New York, New York City/Southern Tier, and Long Island.

experienced a first neurologic episode that often leads to MS (called CIS, or clinically isolated syndrome). Anne-Louise Ponsonby, Phd (Murdoch Childrens Research Institute, Melbourne) and her colleagues used information from this unique study to research whether various lifestyle factors were associated with the development of CIS, including current and past tobacco, marijuana and alcohol use, physical activity patterns, blood pressure and body measurements. They found that risk of developing a CIS increased by 79 percent in people who had ever smoked, lending further evidence to the harmful effects of smoking in people with MS. none of the other factors in the study were associated with increases in risk (Multiple Sclerosis Journal 2013;19:1717).


2014 National MS Society Public Policy Conference: Passion on the Potomac

Hundreds of MS Advocates and Activists from around the nation gathered in Washington,

d.C., for the 2014 Public Policy Conference to share their passion for public policy, to gain a bet-ter understanding of the national MS Society’s federal legislative priorities, and to share their experiences related to MS with members of Con-gress. More than 300 advocates and activists sport-ing orange swarmed Capitol Hill to speak with lawmakers and their staff members about the critically-important role the federal government plays in MS research. Activists took the opportu-nity to remind lawmakers and staff members of the equally important role the national MS Soci-ety plays as a partner in MS research.

national MS Society Upstate new York Chap-ter President Stephanie Kunes-Mincer, Albany Government Relations Committee (GRC) Chair Randy Stein, Albany GRC member Frank Ridzi, and Advocacy Manager Aaron Ward attended numerous seminars and workshops designed to inform, engage, and energize them for visits to Capitol Hill. They encouraged members of Con-gress to increase funding for MS research through the national Institutes of Health and the Congres-sionally directed Medical Research Program. In addition, they advocated for legislation designed to increase access to complex rehabilitative tech-nology, including highly-customized power chairs designed specifically for those living with progressive MS. The Upstate new York Chapter is committed to achieving policy changes that address underly-ing, systemic problems faced by people affected by MS. To learn more about how you can share your story of living with MS to make a difference, please contact Aaron Ward at [email protected] or 518-464-0910. We look forward to hearing from you.

AdVOCACY

(Left to Right) National MS Society Upstate New York Chapter Advocacy Manager Aaron Ward, Albany GRC Chair Randy Stein, Upstate New York Chapter President Stephanie Kunes-Mincer, and Albany GRC Member Frank Ridzi gather outside the U.S. Capitol before visiting members of Congress during the 2014 National MS Society Public Policy Conference held March 10 – 12, 2014 in Arlington, Virginia, and Washington, D.C.


deVeLOPMenTI Ride With MS

Connect with us

People who ride in Bike MS may do so to support family members, friends, or

coworkers who have been diagnosed with multiple sclerosis. But, there are also legions of participants who live — and ride — with the disease, despite challenges such as fatigue or weakness. I Ride with MS is a special Society program that celebrates Bike MS cyclists who are also living with multiple sclerosis. Anyone living with MS who is interested in cycling to support the MS movement can join the program, enjoy special day-of-event

benefits and receive a complimentary I Ride with MS jersey. Genzyme, MS One to One, and Primal Wear are proud supporters of the I Ride with MS program. I Ride with MS participants are not only committed to cycling to create a world free of MS, but to increasing awareness. For more information or to register for the program at one of our four Bike MS events in our chapter, contact Alyssa Shoup at 585-271-0805 or [email protected].

This program is made possible through partnership with Genzyme and MS One to One.

Bike MS: Finger Lakes Challenge - July 19-20, 2014 – Keuka Park, nYBike MS: Southtowns Shuffle - August 9, 2014 – elma, nY Bike MS: ROC the Ride - September 7, 2014 – Rochester, nYBike MS: Hudson River Ramble - September 20, 2014 – Schodack, nY

Follow Us on Facebook and Twitter Go to www.facebook.com/MSupstatenYClick on “Like” for updates, news, events, research, and moreOr follow us @MSupstatenY, @BikeMSupstatenY, @WalkMSupstatenY


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The Mighty Mucks are just one team of stellar muckers from the Upstate New York Chapter that participated in MuckFest MS: Boston last year!

The More, the Muckier

MuckFest® MS rallies you and your friends for a mucky romp through mud and

obstacles in support of a world free of multiple sclerosis. The run is pure athletic hilarity on a 5K course full of mud and featuring more than 15 outrageous obstacles that will spin, swing, and fling you up, down, and sideways. The only cramp our muckers get is from laughing too hard. Afterward, there’s beer (or soda), a tasty pick-me-up treat and music in the MuckFestival area. We operate on “the more, the muckier” principle, so invite your friends and family to join you in the hilarious spills and thrills. To get

the most out of your MuckFest MS experience, you should start a team or join a team. When you slosh through the mud or take on one of the outrageous obstacles, you’ll want someone to laugh with and to give you a hand. Later, you and your team can decide who had the most epic spill of the day. We even have a specially-designed mucky play lot for the kids called Lil’ Muckers. Register now for one (or both) of the two MuckFest MS events in the region! Any fundraising dollars raised by participants from the Upstate new York Chapter come straight back to our community to support local programs and services in Upstate new York. To register for the 2014 MuckFest MS events, visit MuckFestMS.com.

MuckFest MS: Boston – April 26 & 27, 2014 MuckFest MS: new Jersey – June 21, 2014

AUTOS-4-MS Help drive MS away -donate your vehicle today!

For answers to all your questions and to start the donation process, please visit www.AUTOS4MS.org

or call our office at 1-877-672-8864.

When you donate your car, truck, motorcycle, boat or trailer to the National MS Society, you can feel good knowing 100% of the proceeds

go directly toward benefitting people with MS. Proceeds fund vital research into the cause, cure and treatment of MS as well as programs

and services for people living with MS.

Your vehicle donation is tax deductible. Refer to your tax professional for specific details.


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The Tonawanda-Kenmore MS Support Group gathers around Inspirational Woman On the Move Pearl Kibler at the 2013 Champions On the Move Luncheon.

Honoring Champions On the Move in Western New York

Please join us for the third annual Champions On the Move Luncheon to honor those

in Western new York who, through their volunteerism, philanthropy, and activism, have been champions for those living with multiple sclerosis. Hosted by WIVB news 4’s anchor Jacquie Walker, the event will feature recognitions of this year’s honorees, raffles, auctions, and a delicious lunch.When: Friday, September 13 Registration begins at 11:30 a.m.Where: Buffalo/niagara Marriott Milersport Highway, Amherst, nYCost: $60 per ticketWe are now accepting nominations in the following categories:• Stephen H. Kelly Award- Professional On the Move Sponsored by Hodgson Russ, LLP• Young Person On the Move

• Anne L. Schuell Award - Inspirational Person On the Move• Group On the Move• Volunteer On the Move If you have someone special that you would like to nominate, visit MSupstateny.org to submit your nomination, or call Maria Batt at 716-634-2573, ext. 70501 for more information.

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 28, 2014.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.


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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 & begin fundRaisingAs soon as you register, you’ll have access to our online fundraising tools, making 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.

cape cod, mass.: september 5-7, 2014

3 days. 50 miles.connect to end multiple sclerosisregister now: MSchallengewalkcapecod.org or 1.800.344.4867

cape cod, mass.: september 5-7, 2014

Second Annual Monster Scramble 5K/10K Coming Soon

Join us this fall for our second annual Monster Scramble 5K/10K at a location near you! dates

and locations will be announced soon. Mark your calendars for October 2014 and start training now! The Monster Scramble 5K/10K is just what you’ve been waiting for — a Halloween themed, chip-timed run that’s sure to make your heart (and feet) race! 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! Make your personal achievement of running a long-distance race even more memorable by help-ing those who live with the unpredictable chal-lenges of multiple sclerosis. Visit monsterscramble.org to get information on the race nearest you and to register today!


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There is still time to be a part of the crowd.

Walk MS will take place in the following locations on May 4 unless otherwise stated:ALBAnY BATAVIA BInGHAMTOn BUFFALO MAY 03, 2014CAnAndAIGUA CORnInG/eLMIRA/BATH GReeCe

SOUTHeRn CHAUTAUQUALOCKPORT MOHAWK VALLeY OneOnTA PLATTSBURGH POUGHKeePSIe ROCHeSTeR

SARATOGA SYRACUSe WATeRTOWn WeLLSVILLe nORTHeRn CHAUTAUQUA MAY 18, 2014

walkMSupstateny.org1-800-344-4867 (press 2)

Register for Walk MS today!

Upstate new York Chapter

national Multiple Sclerosis Society1650 South Avenue, Suite 100Rochester, nY 14620-3901

CHAnGe SeRVICe ReQUeSTed

FRee MATTeR FOR THe

BLInd And HAndICAPPed

Upcoming Chapter Events Location DateEveryday Matters Program Rochester April 21-May 19Walk MS 2014 17 locations across Upstate NY May 4 Buffalo May 3 Northern Chautauqua May 18CogniFitness Challenge Wellsville May 21Moving Forward with MS Cheektowaga June 16MuckFest MS Boston April 26 & 27 New Jersey June 21 Bike MS: Finger Lakes Challenge Keuka Park July 19-20Bike MS: Southtowns Shuffle Elma August 9Bike MS: ROC the Ride Rochester September 7Bike MS: Hudson River Ramble Schodack September 20

®

Register today at walkMSupstateny.org.

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

non-Profit OrgU.S. Postage

PAIdRochester, nYPermit no. 764

Upstate new York Chapter

national Multiple Sclerosis Society1650 South Avenue, Suite 100Rochester, nY 14620-3901

CHAnGe SeRVICe ReQUeSTed

®

Upcoming Chapter Events Location DateEveryday Matters Program Rochester April 21-May 19Walk MS 2014 17 locations across Upstate NY May 4 Buffalo May 3 Northern Chautauqua May 18CogniFitness Challenge Wellsville May 21Moving Forward with MS Cheektowaga June 16MuckFest MS Boston April 26 & 27 New Jersey June 21 Bike MS: Finger Lakes Challenge Keuka Park July 19-20Bike MS: Southtowns Shuffle Elma August 9Bike MS: ROC the Ride Rochester September 7Bike MS: Hudson River Ramble Schodack September 20

Register today at walkMSupstateny.org.

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

connection - national multiple sclerosis society · interest and resume to the chapter...

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