upstate new york chapter ms connection · jennifer capezzuto, cpa bartholomew chacchia, esq. marc...

“Featuring Team ‘Orange is the New Black’”

SPRING 2016

MS Connection

HIGHlIGHtS:Bike MS, Page 5Volunteer Spotlight, 0Value of a Care Team, Page 12Research Night, Page 13

Upstate New York Chapter

2 | MS Connection JOIN THE MOVEMENT: nationalMSsociety.org

Upstate New York Chapter MSupstateny.org nationalMSsociety.org email: [email protected]

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

Buffalo Office 4245 Union Road, Suite 108 Buffalo, NY 14225

Rochester Office 1000 Elmwood Avenue, Suite 900 Rochester, NY 14620 -3901

Syracuse Office P.O. Box 421 Camillus, NY 13031All offices can be reached by calling 1-800-344-4867 (1-800-FIGHT-MS)

Executive Management Team

Stephanie Kunes, LMSW President and CEO

Valerie King Hoak - Vice President, Chapter Resource Development

Shari Mazzella - Vice President, Programs & Services

2016 Chapter Board Members

OfficersKaren Waldron .....................................ChairMitchell Pawluk, Esq. ......................Vice ChairKenneth Buschner ........................... SecretaryBryan Kenny, CPA ............................Treasurer

DirectorsKathy A. Birk, MDMark E. BoucherJennifer Capezzuto, CPABartholomew Chacchia, Esq.Marc C. ChampignyKeith Edwards, MDKevin J. Espinosa, Esq.Richard J. Mengel, CPAChristine Sisto MertesThomas D. MullerSusan RadzyminskiRon RominesTracey L. WardwellEric Webber

Clinics/ Health CentersVisit our website

for a list of National MS Society

affiliated clinics.

TOLL FREE NUMBER 1-800-344-4867 MS Connection | 3

Letter from the President, Stephanie L. Kunes LMSW

Our “day on the Hill” is a compelling example of how we’re stronger together. On March 16, MS Activists from around the country gathered on Capitol Hill with a powerful voice telling personal stories to raise awareness about MS and the needs of people living with MS. We advocated for increased funding from the National Institutes of Health and the MS Congressionally Directed Medical Research Program. This funding has helped make significant progress in understanding MS and providing the basic research to develop MS therapies. More funding will keep our momentum going!We asked our representatives to co-sponsor and pass the Advancing Research for Neurological Diseases Act. This bill would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) that will track and collect data on the epidemiology of neurological diseases, including MS. Finally, we asked our representatives to hold a hearing focused on the patient perspective on access to MS medications. Between 2004 and 2015, the average price of MS disease modifying therapies has increased 300 percent. In 1993, the first medication cost $11,500 per year, today it is more than $70,000. It’s time that we listen to the perspective of people living with MS.Walk MS will soon take place in Upstate New York and many other cities around the country. It’s a time when friends, loved ones, and co-workers team up as a powerful force to create a world free of MS. With every step we take and every dollar we raise, we’re stronger together. I hope to see many of you and your teams at one of our 18 Walk MS sites around the state—sharing in this wonderful experience.

With gratitude and joy,

Stephanie Kunes, LMSW President and CEO

Upstate New York Chapter


Walk MS: The Rallying Point of the MS MovementMother of two leads Orange is the New Black teamSarah Platek first noticed that she would consistently trip while walking up the stairs when her youngest daughter was just one year old. At first, Sarah brushed it off as a pinched nerve or exhaustion from taking care of her two young girls. Suddenly one day, she could not grasp a piece of paper in her left hand. The heavy, clumsy feeling in her left leg and arm could not be ignored any longer. In the summer of 2014, an MRI revealed that Sarah had multiple sclerosis.Sarah’s husband, children, parents, family, friends, and colleagues came to her side and became her support team. They were there for Sarah and ready to act. Sarah and her support team wanted to learn everything they could about MS. They dove head-first into the MS Movement. Sarah and her Walk MS team, Orange is the New Black, hit the ground running for Walk MS 2015 and quickly became a top fundraising team. They engage in a variety of fundraising activities to reach their goals. Sarah’s mother creates and sells greeting cards from her artwork. Sarah’s friends play the guitar and donate all of the tips they

make back to the team. Her colleagues wear orange to work and collect money to donate to the National MS Society. Sarah and her team members on Orange is the New Black are excited for Walk MS 2016 and are already off to a great start fundraising. Sarah has a dream that one day her

daughters will live in a world where MS was a terrible disease. With the momentum that Sarah and Orange is the New Black are creating, that dream is sure to become a reality.

Sarah Platek with her

daughters, Isla and Malin


Meet our Bike MS Manager and join us for the Ride of your Life

Christine Santoro Kiebzak was born and raised in Buffalo, and she has always been in love with the city of good neighbors. She enjoys people, event planning, and being outdoors—making her a great fit for Bike MS! She comes to the National MS Society with a background working with several nonprofits including the American Red Cross, Make-A-Wish Foundation, and Hospice Buffalo. Christine serves on the board for the Young Nonprofit

Professionals Network of Greater Buffalo. She earned a BA in Public Communication with a focus in nonprofit managing. Christine loves traveling, and she can usually be found volunteering her spare time to create change. She is excited about being a part of the four great Bike MS events in Upstate New York and working with the many volunteers and cyclists who are driven to end MS forever. Please reach out to Christine at [email protected] if you want to learn more about riding in Bike MS or volunteering on our planning task forces in Buffalo, Rochester, and Albany. While based in Buffalo, Christine is in Rochester weekly and Albany monthly to make sure Bike MS is an extraordinary experience for all of our cyclists and volunteers.

Four extraordinary rides

to choose from!Finger Lakes Challenge,

Keuka College, July 16 & 17

Great Lake Escape,

Evangola State Park, Saturday, August 6

ROC the Ride,

Genesee Valley Park, Saturday, August 27

Hudson River Ramble,

Birch Hill, Saturday, September 17

Learn more at bikeMS.org


Luncheon Recognizes Outstanding Individuals and GroupsOn the Move to End MSThe sixth annual On the Move Luncheon honored Rochester volunteers and philanthropists leading the movement toward a world free of MS on Friday, March 11 at Locust Hill Country Club. The fundraising event supports those involved in the MS movement and also educates the public about MS. Individuals and groups were acknowledged for their activism and contributions toward a world free of MS. Honorees included: Professionals on the Move, (1) Wade Radtke, Dr. Megan Hyland, and Dr. Jessica Robb (not pictured); Volunteers on the Move, (2) Liz DeSantis and Sue Powers (not pictured); Inspirational People on the Move, (3) Peggy Carley and (4) Marianne Conlon; Young People on the Move, (5) Amanda Camilo and (6) Gabby Costa; and Groups On the Move, (7) the Marshall Family Foundation and (8) Al Sigl Sports Committee.

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Volunteer for MS Service Day and See What a Difference a Day MakesMS Service Day is right around the corner! The date is set for Saturday, June 4, 2016.

There has been tremendous work accomplished in the past on MS Service Day by the dedicated individuals and groups of volunteers who come out to help those living with MS. This day cannot be a success without the volunteers! We need you.

Volunteers will help with tasks such as yard work, painting, light housekeeping, and organizing. This day is a wonderful way to see the immediate impact and positive change for those affected by MS. Individuals or groups are welcome.

To volunteer please contact Melanie Greenstein, Senior Community Engagement Specialist, at: [email protected] or at 1-800-344-4867, press 2.

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Interested in attending a Self Help Group?

A new group may be starting for care-partners and individuals living with MS in Ogdensburg.

Please contact Shari Mazzella at [email protected] if you are interested.We are also looking to begin a group in the

Penfield/Fairport area. Please contact Dee Mascari at [email protected] if you are interested.


Boston: Saturday, May 14 | Sunday, May 15, 2016

Philadelphia: Saturday, June 4 | Sunday, June 5, 2016

New Jersey: Saturday, June 25 | Sunday, June 26, 2016

REGISTER AT MUCKFESTMS.COM

© 2016 Event 360, Inc.

BUILTLAUGHS

FOR

New Jersey Presented Locally By

Boston Presented Locally By

MuckFest® MS is the FUn mud & obstacle 5K.No special training required! We’re also on a mission to end multiple sclerosis. Have a blast and make a difference!

Social Security Disability Insurance

Do you have questions about SSDI?

Check in with someone who is in the know! Our

region is lucky to have an expert volunteer willing to

answer your questions.

Call 781-693-5155 to schedule a phone

consultation.

MS Center of NENY to Launch Monthly Programs

Starting in May, the MS Center of NENY will be offering informational programs the first and second Tuesdays of every month. First Tuesdays will be information for those

who are newly diagnosed, while second Tuesdays will focus on women’s issues in MS.

Since MS is a complex and unpredictable disease, patients often have more questions than can be

answered during doctor visits. The educational sessions, presented by Keith Edwards, M.D.

and Lore Garten, M.D., Ph.D, of the MS Center of NENY, are free and will be held after office hours.

For more details, visit msneny.empireneuro.org


APRIL 30, 2016BUFFALO

2016 LOCATIONS

We’Re STRONgeR

TOgeTHeR.WALK MS.

GinA (center), diAGnOsed in 2010

LAtiAh (r), diAGnOsed in 2014

BiLL, diAGnOsed in 2010

LAUrA (center), diAGnOsed in 2012

MISSY, DIAgNOSeD IN 2014

RegISTeR TODAY! walkms.org | 1-800-344-4867 (press 2)

Thank you To our loCal sponsors

THANK YOu TO OuR PReMIeR NATIONAL SPONSOR

MAY 1, 2016ALBAnYBAtAViABinGhAMtOncAnAndAiGUAcOrninGLOcKPOrtMOhAWK VALLeYOneOntAPOUGhKeePsierOchestersArAtOGAWAtertOWnWeLLsViLLe

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New at Walk MS in 2016 for People Living with MSHave you been diagnosed with MS? Join us at Walk MS and be a part of our rallying point as we come together to do something about MS. The Living with MS program is new at Walk MS in 2016 and honors those who are diagnosed with MS and participate in Walk MS. Receive a Living with MS shirt and other special recognition during Walk MS as we celebrate you! Connect with others, inspire others, and let those who are newly diagnosed know that they are not alone. Simply designate on your registration form that you have MS. We’re Stronger Together!

APRIL 30, 2016BUFFALO

2016 LOCATIONS

We’Re STRONgeR

TOgeTHeR.WALK MS.

GinA (center), diAGnOsed in 2010

LAtiAh (r), diAGnOsed in 2014

BiLL, diAGnOsed in 2010

LAUrA (center), diAGnOsed in 2012

MISSY, DIAgNOSeD IN 2014

RegISTeR TODAY! walkms.org | 1-800-344-4867 (press 2)

Thank you To our loCal sponsors

THANK YOu TO OuR PReMIeR NATIONAL SPONSOR

MAY 1, 2016ALBAnYBAtAViABinGhAMtOncAnAndAiGUAcOrninGLOcKPOrtMOhAWK VALLeYOneOntAPOUGhKeePsierOchestersArAtOGAWAtertOWnWeLLsViLLe

MAY 15, 2016GreecenOrthern chAUtAUQUAPLAttsBUrGhsYrAcUse

THANK YOU TO OUR PREMIER

NATIONAL SPONSOR

VOLUNTEERS NEEDED TOO!Contact Melanie Greenstein at

[email protected]


Volunteer Spotlight:David BenjaminDavid Benjamin is new to his volunteer role at the National MS Society, but that sure hasn’t stopped him from

being nothing short of amazing at the work he has signed on to perform. He started volunteering in September when his father’s MS symptoms intensified. Although his father has been living with MS for over 20 years, David mentioned that he noticed more symptoms lately and wanted to find a way to give back. He felt that helping people with similar symptoms allow him to benefit and learn ways to possibly help his father. David has jumped in to help at two MS Service days, tabled at the Walk MS Kick-Off event at Raymour and Flanigan, helped to set up a Zumbathon fundraiser, was a society representative at the D’Youville College’s Caring Casino fundraiser, and is looking to also join a society task force group in his area. David says his favorite volunteer experience has been MS Service Day because of the direct impact of helping another person who is living with MS. He states, “The little things wouldn’t get done. MS Service Day helps improve the quality of life a little bit for many people.” Thank you David for all that you have done for the National MS Society!

Spotlight on Statewide Advocacy Jennifer Muthig joins the Society Jennifer Muthig has been named the Statewide Advocacy Director. Jennifer began her advocacy career as a Legislative Assistant with District 37, New York City’s largest labor union. After graduating from SUNY Albany with a degree in political science, she joined The Vidal Group, a top 35 lobbying firm where she worked on securing budget funding, HIV/AIDS legislation, and labor issues. She served as the Regional Director for Mohawk Valley during the administration of Governor David Paterson. Jennifer has created her own grass-roots organizing firm where she concentrated on educating and empowering volunteers for communicating with their elected officials. Prior to joining the Society in January, Jennifer was a lobbyist at the firm Malkin & Ross where she worked on issues in the healthcare. Her clients included the Alzheimer’s Association and the School Nutrition Association. She brings her background of over ten years of government relations experience and enthusiasm to the Society. Her primary goals will include training advocacy volunteers and uniting the state as it pertains to advocacy.


Emotional Support is Important for People Living with MS In the face of MS, people may focus on their physical health and neglect their emotional health. MS can have a significant impact on a person’s emotions. The National MS Society offers more than 37 emotional support programs that bring together people who share common life experiences. Self-help groups are places where they can learn new strategies for managing MS, find support from others, and develop confidence in facing the challenges of living with MS. We offer a variety of in-person, professionally-led, peer-led, and social support groups throughout the Upstate New York area. In addition to general groups, below are some unique and newly-formed groups:

Support Partner Groups: Family and friends meet in Rochester on the first Wednesday of each month. People diagnosed with MS and their support partners meet together and then split into separate groups for individual meetings. Care-partner Group meeting the fourth Monday of every month in the Buffalo Office addresses the needs of those who support people diagnosed with MS.

Gender Groups: Men’s groups meet in both Rochester and Albany. Both offer the opportunity for men to discuss issues particular to them.

Age Specific Groups: 20- and 30-Somethings is a group in Rochester that offers support and social opportunities for younger people living with MS.

Social Groups: Mohawk Valley Self-Help Group meets for breakfast in Utica and Rome every other month on the fourth Saturday. There are monthly support lunch gatherings in Livingston, Ontario, and Wayne counties.

Other Specialty Groups: But You Look So Good is designed for people living with MS that may not have visible symptoms but are certainly affected in many ways. This group meets on the second Tuesday in Rochester. Multiple telephone groups are available for general and special populations through our New York City-Southern New York Chapter.

New Groups: A group at Monroe Community Hospital meets on the second and fourth Monday of each month from 1:30-2:30 p.m. This group offers discussion on a variety of topics related to MS. It is open to people living with MS who reside at MCH and the community. In conjunction with Independent Living of the Genesee Region at their location in Batavia, a new group is meeting the second Tuesday of every month from 4-5 p.m. The Wellsville group is meeting quarterly in the Walchli Room at Jones Memorial Hospital from 5:30-7 p.m. Meeting dates are May 26, August 18, and November 17.For further information on these groups or others, please call 1-800-344-4867, press 1.


The Value of an MS Care Team

by Dr. Megan Hyland and Dr. Jessica Robb

When caring for people with MS, the expression “two heads are better than one” is appropriate, and perhaps even more accurate is “the more the merrier.” A team based approach to MS care is ideal because MS can cause such a variety of symptoms. Even the most experienced MS neurologist is better able to care for patients with help from other specialists with expertise in treating specific symptoms.Who should be part of your MS team? The head of an MS care team is typically a neurologist but may be a primary care provider or other practitioner. When practical, it’s helpful to see a neurologist whose practice is focused on MS care. Other team members will vary based on an individuals’ needs, but there are many suggested team members to consider.Physical therapists are a great resource and may provide tailored exercise programs to people living with MS who have difficulty walking due to weakness, fatigue, or balance problems. As part of an MS team, they may contact a patient’s

neurologist to recommend an appropriate assistive device or note when medication changes may be beneficial. Similarly, urologists can do more thorough assessments than neurologists and are more familiar with newer medications or procedures to help MS patients with bladder or sexual dysfunction. Dealing with MS day to day can lead to increased stress for patients and families, both emotionally and financially. As a result, mental health providers and social workers are frequently invaluable team members. These are just a few examples. MS care teams may also be composed of occupational therapists, speech therapists, physiatrists (doctors who specialize in rehabilitation), ophthalmologists, etc. People with MS often have needs that come and go over time, so an MS care team is likely to evolve and change. It’s important to remember to work with your neurologist to make sure you get the support that you need at any given time. When possible, it’s ideal to have team members who have experience seeing other people with MS.

Carlos, diagnosed in 2001.


2016 Research Night a Success

Dr. Keith Edwards presents at the Latham Research Night.

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

If you answered “yes” to any of these questions, feel free to pose your questions directly to an Employment Specialist by emailing [email protected]. You will receive a response within 48 hours.

Benedict, PhD, FAPA, Keith Edwards, MD, Andrew Goodman, MD, Aahmir Rasheed, MD, and Brandon Yehl, PA. Thank you to research night supporters: Acorda Therapeutics, CVS Caremark, EMD Serono, Genentech, Genzyme, A Sanofi Company, Mallinckrodt Versaic, Novartis Pharmaceuticals, and Teva Pharmaceutical Industries Ltd.

MS Research: The Progress, The Promise was offered in Buffalo, Latham, Victor and Binghamton this year during the month of March with more than 250 people attending. It was exciting to hear updates on fascinating research take place globally and right here in Upstate New York. Thank you to research night presenters: Matthew Bellizzi, MD, PhD, Ralph H.B.


Opportunities to Participate in MS ResearchGeneral:A new research study is testing the effectiveness of three educational programs around fatigue delivered entirely over the phone. Participating in the study will involve filling out questionnaires and engaging in several group and one-to-one phone calls over the course of 24 weeks. You will be given a $25 gift card or a telephone and headset. Dr. Matthew Plow from Case Western Reserve University is leading the study, with funding from the National MS Society. For more information, or to see if you are eligible, please call 216-368-0643. 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.

Research on Computerized Testing: Researchers from the University at Buffalo are looking for volunteers between the ages of 18 and 60 with or without a diagnosis of multiple sclerosis to participate in a study on computer-

based cognitive measures and the influence a technician may have on task performance. Volunteers must be willing to complete a series of pen-and-paper and computer-based tasks and surveys related to memory and attention. Participants will be compensated for their time. Interested individuals are asked to please call (716) 698-3555 or email [email protected] to determine their eligibility.Research on Workplace Functioning: Researchers from the University at Buffalo are looking for employed volunteers between the ages of 18 and 60 with or without a diagnosis of multiple sclerosis to participate in a study on factors related to experiences in the workplace and job accommodations. Volunteers must be willing to complete a series of pen-and-paper and computer-based tasks and surveys related to memory, attention and work activities. Participants will be compensated for their time. Interested individuals are asked to please call (716) 698-3555 or email [email protected] to determine their eligibility.Biogen MITIGATE: Study of Montelukast (Singular) on Gastrointestinal Tolerability in Patients With Relapsing Forms of Multiple Sclerosis Receiving Tecfidera. For this 12 week study, you must have a prescription from your doctor for Tecfidera, and begin taking it at your enrollment for this trial. Montelukast (Singular) will be provided to you at no cost. Compensation for time and reasonable reimbursement for travel related expenses are available. For more information, contact Amanda Jamison at 716-819-4117. Novartis ASSESS: MS Study Evaluating Safety and Efficacy of Two Doses of Fingolimod (Gilenya) vs. Copaxone. For


this one year study, you must have one documented relapse in the past year or two documented relapses in the last two years. Participants must be treatment naïve to Gilenya. Qualified volunteers will receive study-related medical evaluations, including MRI’s and study drug at no cost. Compensation for time and reasonable reimbursement for travel related expenses are available. For more information, please contact Amanda Jamison at 716-819-4117.

Rochester: 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.

• A trial of Fingolimod or Copaxone in patients with relapsing MS, or a new experimental medication for those who are experiencing a new relapse.

For more information, call Eileen Scheid, RN, MSN at 585-275-6673 or Cindy Irish 585-275-6120.Albany:The MS Center of NENY will be enrolling patients living with MS for a Genentech Protocol. Individuals interested in participating in this study need to be patients who have not been on more than two DMTs which were discontinued due to lack of efficacy. Details are available on clinicaltrials.gov. For more information, contact Judy O’Connor at 518-785-1000 ext. 106.The MS Center of NENY, in collaboration with Biogen and Mt. Sinai Medical Center in NYC, is currently conducting a study

to determine the effect of 24-month Tecfidera treatment on the neurotoxicity of cerebral spinal fluid, plasma, and imaging biomarkers of axonal damage. The study will also seek to define the composition of the “microbiome” of the gut, as it is well-established that gut-brain communication exists in humans. For more information contact Judy O’Connor or Judy Button at 518-785-1000.

Everyday Matters Programs OfferedEach 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. “Everyday Matters: Living Your Best Life with MS” teaches people how to incorporate principles of positive psychology into their lives. This program is for people with MS and care-partners. There is a NEW option for people interested in the Everyday Matters program. We are now able to offer one day seminars on positive thinking. Please join us in Geneseo on May 7 and Buffalo on September 17 from 9 a.m. to 4 p.m. 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 Dee Mascari (Geneseo) or Megan Vaughan (Buffalo), at 1-800-344-4867 (press 2).

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PAIDROCHESTER, NYPERMIT NO. 764

A Publication of the National Multiple Sclerosis Society - Upstate New York Chapter

National Multiple Sclerosis Society1000 Elmwood Ave., Suite 900Rochester, NY 14620-3901

CHANGE SERVICE REQUESTED

Upcoming Chapter Events Location DateWalk MS Details Page 9 April 30, May 1, May 15

Finish MS Race: Canandaigua Classic Canandaigua May 22

Finish MS Race: Buffalo Marathon Buffalo May 29

MS Service Day Chapterwide June 4

Spellbound on the Farm Canandaigua June 10

Finish MS Race: Race the Lake Cooperstown June 11

Bike MS: Finger Lakes Challenge Keuka College July 16 & 17

Bike MS: Great Lake Escape Evangola State Park August 6

Bike MS: ROC the Ride Genesee Valley Park August 27

Bike MS: Hudson River Ramble Birch Hill September 17

Connect with usFollow us on Facebook and Twitter

Go to www.facebook.com/MSupstateNY • Click on “Like” for updates, news, events, research, and more

Or follow us @MSupstateNY, @BikeMSupstateNY, @WalkMSupstateNY.Join the conversation at MSconnection.org

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

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upstate new york chapter ms connection · jennifer capezzuto, cpa bartholomew chacchia, esq. marc...

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