ms connection - · pdf fileband and a magician, raffles, a wine pull, ... rich products...

Read about Christina Roach’s

Determined JourneyPage 4

SUMMER 2016

MS Connection

Upstate New York Chapter

HIGHLIGHTS:Bike MS, Page 7

Volunteer Spotlight, 0

Monster Scramble, Page 11

Finish MS, Page 12

MS Service Day, Page 15

Scholarships, Page 18

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

With gratitude and joy,

Stephanie Kunes, LMSW President and CEO

I had the wonderful opportunity to host a fundraising event on my farm in June to raise awareness and funds for MS. The event, called “Spellbound on the Farm,” was a spectacular evening with perfect weather, good food, live entertainment from a band and a magician, raffles, a wine pull, and an auction of some fabulous prizes donated by friends and community businesses. The evening ended with a magical fireworks display to top off a really wonderful event. As you can imagine, hosting an event like this can be quite an undertaking, but I had a great committee of volunteers comprised of some personal friends, colleagues, and local business owners who all jumped in to help. Whenever there was a task to be completed or an obstacle to overcome, the committee members were there to offer support and solutions. I realized as we all came together to make this event a success that we truly are stronger together.

When the event ended, I felt a great sense of accomplishment at what we had done and that everyone I spoke to was committed to helping support

the National MS Society. I thought about the “Do it Yourself” fundraisers around the country who do exactly what I did:

plan an event to help support the mission of ending MS. I thought about how communities of people all over come together to support us in so many different ways. I

thought about the businesses, big and small, who helped me and who help others with donations of raffle prizes, food, services, entertainment, and so much more to

turn these events into successful fundraisers for the Society to drive our mission forward.

I am humbled by the great support I received from

my community and I thank all of you who are coming together to make a difference for people living with MS. Together We Are Stronger!


Diagnosed and Determined: A Walk MS Team Captain’s JourneyTwo weeks after giving birth to her third child last November, Christina Roach’s hands and feet began feeling numb and tingling. After countless doctors’ appointments, MRIs, and a spinal tap, she was officially diagnosed with MS in February of 2016.

Since March, Christina has been receiving infusions at Jacob’s Neurological Institute under the care of Dr. David Hojnacki. During the initial dose of medication, her husband brought her to the hospital for three days and sat next to her for four to five hours while she was treated. While she was at the hospital, she learned of Walk MS in Buffalo. “This year, the walk happened to be on my 35th birthday. We saw this as a sign and knew it was the perfect way to celebrate,” Christina said.

Christina and her husband used social media and word of mouth to let family, friends, and others know they would raise funds by participating in Walk MS. Christina’s twin sister came up with the team name and designed the team’s shirts while her father-in-law, David Roach of Blair and Roach LLP, sponsored the team and bought the shirts for the event.

“From the moment I was diagnosed, I knew I wanted to get involved and raise awareness,” Christina said. “Walk MS is so positive, inspiring, and well-organized. The music is upbeat and the event organizers and volunteers were extremely

friendly and helpful. I loved seeing each team in their shirts enjoying Canalside. It’s inspiring to see so many people supporting a great cause.”

Christina and her husband both teach at Newfane Middle School, so when it came time to recruit members to her team and raise funds, she sought the support of faculty, staff, and students. The school put together a fundraiser on her behalf, in which students and teachers could purchase Walk MS footprints to hang in the school. Christina’s former students also joined her family and friends on her Walk MS team.

Walk MS was “truly a magical day,” Christina said. When it comes to giving advice to others thinking of becoming Walk MS team captains or joining a team, Christina replied: “Get involved, raise awareness, and help make a change. I need it and so do thousands of others affected by MS every day.”


Walk MS: Weather Can’t Dampen Our SpiritThanks to all those who — despite the cold and rainy weather experienced at several Walk MS locations this year — walked, volunteered, and fundraised to end MS forever! Walk MS is our chapter’s number one fundraiser. With a budget of $1.3 million, this event is what funds most of our local community programs and services, not to mention the $1.2 million that the chapter has earmarked for MS research. It is a huge undertaking, with more than 1,000 volunteers at 18 Walk MS locations welcoming more than 10,000 participants. 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 ($1.1 million as of press time), we are still short of the funds needed to support our mission. If you haven’t already, 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

Happy to have crossed the finish line at

Walk MS: Buffalo!

Walk MS: Canandaigua team members of Brown’s Brigade have some fun.

The rain didn’t dampen this

walker’s spirit at Walk MS:

Mohawk Valley.

Lookin’ good and staying dry at Walk MS: Poughkeepsie.

Despite the rain, this Just Keep S’myelin team member did just that at Walk

MS: Albany.


The volunteer cheer squad at Walk MS: Binghamton.

Young members of Team Cindy Sue pose at the Walk MS: Northern Chautauqua

photo booth.

Lockport volunteers

hang paper chains. Who do YOU walk for?

Members of Team AdaMS at Walk MS: Watertown.

Generous Donors Make Walk MS a Success

Walk MS is a giant operation with 18 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! If you are interested in getting involved with Walk MS: 2017 as a corporate partner, please contact Ashley Greenman at 585-271-0805, ext. 70322 or at [email protected].

Thanks to our Premier National Sponsor Novartis

Thanks to our National Sponsor Genentech

Thanks to our Local SponsorsWalgreens

Noble Health ServicesRich Products

WIVB-TV News 4 BuffaloOtis Eastern Services Inc.


Bike MS: Your New Favorite Summer Pastime Bike MS has become a favorite summer pastime for so many here in Upstate New York. With four rides from July to September, there is something for everyone. From the casual rider to the century cyclist, all are sure to have a fabulous time at Bike MS. It’s an unforgettable journey for individuals as well as teams who meet a challenge and help raise critical funds for MS research and local programs.

There is still time to make Bike MS the highlight of your summer. You can register online at BikeMS.org to create a team, ride individually, or volunteer. If you can’t make our dates, consider becoming a virtual cyclist and make your

own ride to raise funds for MS research and programs.

July 16-17 — Bike MS: Finger Lakes Challenge, Keuka College

August 6 — Bike MS: Great Lake Escape, Evangola State Park

August 27 — Bike MS: ROC the Ride, Genesee Valley Park, Rochester

September 17 — Bike MS: Hudson River Ramble,

Birch Hill Catering in Schodack

For more information about riding, volunteering, or corporate sponsorship opportunities available, please contact Christine Kiebzak, Bike Manager, at [email protected] or call 585-271-0805. We are also looking for volunteers with skills in marketing, sales, logistics, bike repair, and food service to join our task force planning committees for our 2017 events. Contact [email protected] for more information.

Bike MS makes you feel strong, just ask the

Fit Stop Riders.

Welcoming Jennifer Hess as Special Events Manager“Finding clever solutions to complex problems in a variety of realms is where I find my bliss,” says Jennifer Hess who will encounter plenty of opportunities to create clever solutions in her new role as the Special Events Manager in the

Rochester office. Jennifer comes from a creative background with a degree in graphic design and a master’s in fine arts. She describes her greatest strength as the ability to visualize something unique and bring it to fruition. For the last three years, she owned her own company, Finger Lakes Yogascapes—a yoga/wellness event and retreat company for women. “Running a business has allowed me to fully immerse myself in all aspects of event creating, planning, and coordinating,” says Jennifer. She is ready to bring these skills to her role at the National MS Society.


Opportunities to Participate in MS ResearchBuffalo:The Pediatric MS & Demyelinating Disorders Center at Women & Children’s Hospital of Buffalo is currently recruiting healthy, typically developing children, ages 3 to 19 along with children with a diagnosis of multiple sclerosis, ages 3 to 19 to participate in a research study. This study will take approximately two to three hours. Participants will be compensated for their time. Participants/parents/guardians will need to complete a questionnaire, and participants will have one blood sample drawn. Please call 716-859-1792 or 716-878-7367 to determine eligibility or to find out more information.

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 on (Singulair) 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 new to Gilenya. Qualified volunteers will receive study-related medical evaluations, including MRIs 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.

Cognitive Function in Healthy Older Adults and Older Adults with Multiple Sclerosis Investigators at the University at Buffalo are interested in studying cognitive functioning in healthy older adults and in older adults with multiple sclerosis. The study involves a 2–3 hour visit at the Buffalo General Hospital, at a date and time of your convenience. Participation involves completing a series of standard cognitive tests and surveys assessing different areas of your thinking such as memory, attention, language, etc. These tests include paper-and-pencil questionnaires and brief motor tasks assessing walking speed and arm function. You may also be provided a series of questionnaires to be completed by a close friend or family member, to be mailed in. Please contact the research team at 716-799-9064 or [email protected] to find out more.

PASSAGE: Safety Study in Patients with Multiple Sclerosis Treated Fingolimod or Other Approved Disease-modifying Therapies

For this study, relapsing-remitting multiple sclerosis participants must be

starting either Gilenya at time of study entry, starting another approved disease modifying therapy (DMT), or have started a DMT within the past 6 months: Betaseron, Extavia, Avonex, Rebif, Copaxone, Aubagio, and Tecfidera.

For more information, please contact Caroline Kumm at 716-558-3492.

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.

Social Security Disability InsuranceDo 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.


WAMS Presents J.R. Martinez for 2016 LuncheonThe Women Against MS (WAMS) volunteer task force is known for bringing in fabulous guest speakers to its luncheon every year, and 2016 will be no exception. Actor, author, motivational speaker, advocate, U.S. Army veteran, and “Dancing with the Stars” season 13 champion J.R. Martinez will be the featured guest speaker at the

2016 WAMS Luncheon on November 4 at the Hilton Garden Inn in Troy. After experiencing a life changing injury in Iraq, Martinez went on to a three-year role on “All My Children” and then went on to inspire a nation on ABC’s “Dancing with the Stars.” J.R. will bring his story of resilience to what will surely be a sell-out crowd. Tickets and table sponsorships are now available and can be reserved online at MSupstateny.org, choose fundraising events and select WAMS or contact [email protected] or 1-800-344-4867 option 2.

Volunteer Spotlight: Tammy ApkarianTammy Apkarian has been involved with the MS Society since early 2013. “I was diagnosed in October 2012, and I was a little skeptical that I had it,” Tammy said. “I did my first walk in 2013 as a participant, and once we did the walk, we got more involved.”

Tammy is incredibly dedicated, dependable, and has a heartfelt, positive attitude. Tammy is involved in the planning team for Walk MS as well as the Women Against MS (WAMS) luncheon in the Albany area. Tammy also volunteers

at Monster Scramble and recently added MS Service Day to her involvement. Tammy said, “MS Service Day was about helping those that need the help. As long as I am able, I’d like to pass it along and pay it forward to others.”

Her husband does his part in sharing awareness by wearing orange socks. “It’s his way of spreading awareness,” said Tammy. “People often ask him about his socks, and it’s a great opportunity to explain his connection.”

Thank YOU, Tammy, for everything you do!

Connect with us - Follow us on Facebook and TwitterGo 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


Get Ready for Monster ScrambleCombine your love for Halloween and running with helping raise money for a great cause. Join us for our Fourth Annual Monster Scramble 5K/10K coming to a city near you in October! Bring the kids and participate in the trick-or-treat walk. There is something for everyone at the Monster Scramble.

Be sure to visit monsterscramble.org to get information on the event nearest you and to get registered. So grab your family, friends, and most importantly your costume, for

this spook-tacular event you will not want to miss!

Sunday, October 9 Buffalo

Hudson Valley (Fishkill) Syracuse

Sunday, October 23 Mohawk Valley

Rochester

Saturday, October 29 Capital District (Troy)

Questions? Contact us! [email protected]

or 1-800-344-4867 (press 2)

Run or walk to stop MS at this Halloween-themed, chip-timed, fundraising event full of chills and thrills, costumes, and sweet treats. Runners can choose between a 5K or 10K course, while walkers can enjoy a 1-mile trick-or-treat stroll along the family-fun route. We encourage participants to come dressed in a Halloween costume. Prizes will be awarded to top fundraisers, overall top 5K and 10K finishers in each age group, and, of course, for best costume!

Register as an individual or start a team with friends, family, or coworkers. Pre-registrants pay just $25 to run and $5 to walk. Runners will receive a Monster Scramble t-shirt and finisher’s medal. This is an unforgettable event to help those in our community living with multiple sclerosis.


On a Mission to Finish MSFinish MS gives athletes of all different abilities the chance to push their personal limits while working to create a world free of MS. It is an exciting and rewarding way to help improve the lives of those affected by MS.

This year, we’ve partnered with three new events to promote the Finish MS campaign. Volunteer Sharon Radak led a team at the Canandaigua Classic Half-Marathon. Runners enjoyed beautiful lake scenery and raised more than $2,300 to support those affected by MS. Just a few short days later, a Finish MS team of 12 members took to the streets of Buffalo in the midst of thousands of runners. Team Captain Nikki Hanagan discovered Finish MS when she turned to the National MS Society for information and resources in the spring of 2015. She ran as part of the Adirondack Distance Festival’s Finish MS team. When asked about her interest

in participating again this year, she was eager to build a team in Buffalo, and so the Finish MS partnership with the Buffalo Marathon began. Joe Cena led a group called the “Sticky Bandits” at the Buffalo Marathon, and together the two groups raised more than $6,400 to support the MS movement.

Buffalo Marathon team member Michelle Maroney runs for her mother. Paulette was diagnosed with MS over three years ago, but that has not stopped her from continuing with her passions and ambitions. She has been an inspiration to her daughter, Michelle. In hopes of raising money for a cure, Michelle ran her first ever marathon, the Buffalo Marathon. “I ran for those that can’t,” Michelle said, and she urges others to do the same—to get out there and get involved because every little bit helps.

At the most recent Finish MS event, Race the Lake, runners planned to trek a challenging course around Otsego Lake. Emily Putman, team captain, has experienced the impact MS can have first hand after her mother was diagnosed in 2007. Emily joined Finish MS at the

Sharon Radak, Janice Green, and Jennifer Bauman raised funds for crucial MS research and services

while training for the Canandaigua Classic half-marathon.


Adirondack Distance Festival in 2015, and plans to participate again this year. Even her injury this spring couldn’t stop her from trying to make a difference in the lives of so many people affected by MS. She believes it is important to “take advantage of the health and wellness while we still have it, and use it for those that don’t.” Although the Race the Lake event was cancelled moments before start time due to extreme weather, the Finish MS team raised $1,440 dollars through their fundraising efforts.

Finish MS allows individuals to participate in any athletic event to benefit the National MS Society. Climb a mountain, backpack across the country, or participate in any physically challenging experience and register with FinishMS.org to be a part of the movement. Or, take advantage of a Society-organized Finish MS event! We will again have a Finish MS team at the Adirondack Distance Festival, September 24 and 25. Visit finishMS.org to learn more or contact Ashley Greenman at [email protected].

Finish MS Sticky Bandits: Joe Cena and the Sticky

Bandits team along with their supporters at

the Buffalo Marathon.

Amy Bidwell keeps a steady pace at the Buffalo

Marathon event.

FaceTime With Kristie Salerno Kent Join us for a book discussion with MS Ambassador Kristie Salerno Kent on the evening of September 15 at the Al Sigl Sports Committee Conference Room in Rochester. Kristie was diagnosed with MS in 1999. She spent years in denial, using her theatre training to cover symptoms and pretend her health was not an issue. She took an office job and stopped

pursuing a career as a performer. It wasn’t until she rediscovered her passion for music that Kristie found the courage to face MS. The first 40 people to register will receive a copy of her book Dreams well in advance of the program. Utilizing Facetime, Kristie will discuss her book with the audience. To register, please call 1-800-344-4867.


Advocacy UpdateWe’ve had a great few months in regards to advocacy with the Society. With the New York State Legislature ending its legislative session for the year, we have a lot to report. Our Government Relations Committee determined three bills (two of which are a part of the Society’s Unified State Policy Agenda) to focus on this legislative session. We’re happy to report two out of the three of those have passed both the Assembly and the Senate! This means it will go to the governor’s office for either his signature or a veto. We will work closely with his office to educate him on the necessity of these pieces of legislation.

The first bill is amending the State’s Step Therapy (or “Fail First”) Policy. This measure would ensure that health plans’ treatment decisions for New Yorkers are based on high-quality research and medical expertise. Currently, the law states you must fail on a less expensive drug as opposed to what the doctor prescribes for you. It would improve the process allowing providers to request an exception to the step therapy process for patients if it could be ineffectual or damaging for them. We strongly believe that doctors should have the final say when treating their patients. This bill has passed both houses and is waiting to be sent to the governor.

The second bill is the Home Modification Tax Credit. This bill would allow New York residents to recoup some of the costs of modifying their homes, by receiving financial relief in the form of credits when they file their taxes. For example,

if someone needed a ramp into his or her home or a grab-bar in the bathroom, he or she could utilize this credit. The credits would provide up to $2,750 and can be carried over from year to year if the applicant does not meet the tax burden in the first year and may be deducted from the taxpayer’s tax for such year or years. We strongly believe that individuals should be able to stay in their homes as long as possible—this bill will help empower people to take back their independence. This bill has passed both houses and is waiting to be sent to the governor.

The third bill is Access to Medication. This bill would give additional allowances for patients to choose the option of a local pharmacy in addition to mail order for medication. While we recognize the value of mail-order pharmacies and believe all patients should have access to a mail-order option, not all patients have the same needs. Many patients still need access to a local option. Patients with complex/chronic medical conditions such as MS are on specific medication treatment regimens and use medication that requires special handling. If a patient’s medication were stolen, those with chronic medication cannot wait for a refill from a mail-order pharmacy. Unfortunately, this bill was stalled in the Insurance Committee in both houses.

As always, should you have any questions please do not hesitate to contact [email protected] or 518-499-4322.


MS Service Day Starts June with Success For those living with MS, a little help can go a long way. On MS Service Day, volunteers go to the homes of those with MS and complete different chores and activities that the person may find difficult due to the effects of MS. These activities include painting, gardening, cleaning, and everything in between. With the weather on their side, volunteers from Albany, Buffalo, Syracuse, and Rochester set out at 9 a.m. on Saturday, June 4, to participate in MS Summer Service Day 2016. In total, there were 16 houses with an outstanding group of just under 100 volunteers.

“The best part of MS Service Day was making new relationships with other people in the community, and feeling proud about how my home and yard look,” said Suellen Kirch, a recipient of MS Service Day. Since her diagnosis, Suellen uses a wheelchair and has limited mobility. Like many others, MS has made it difficult for her to do daily tasks such as getting in and out of bed and going to work, let alone tend to yard work. For people like Suellen, MS Service Day can be an incredibly powerful and important event.

Before her diagnosis with MS, Suellen was a longtime volunteer with the National MS Society and has continued to advocate throughout the last 21 years. On MS Service Day, volunteers helped her by creating and planting a beautiful new garden that was designed by a volunteer who was a retired landscape architect.

Many of the volunteers were grateful for the experience themselves. “Participating in MS Service Day keeps me humble,” said Cynthia Witherspoon, a longtime National MS Society volunteer.

MS Service Day was once again a huge success thanks to the efforts of so many involved and our sponsors: Modica Law Firm (presenting sponsor), Genzyme a Sanofi Company, Genentech, Home Depot, Adams’s Nursery, Valu Home Centers, and Greece Walmart. Our next Service Day is October 1, 2016. The deadline for submitting your house is August 20. For more information, call 800-344-4867, press 2 and ask for Dee Mascari for house submissions, Melanie Greenstein to volunteer, and Ashley Greenman to discuss sponsorships.

The women of Modica Law Firm

make a difference in and out of the office.

Bob Besigel tends to intricate

yard work.


Support GroupsThe Wellsville Support Group meets quarterly at the Jones Memorial Hospital, in the Walchli Room, at 191 N. Main Street in Wellsville from 5:30 to 7 p.m. Connect with other people with MS and learn more about programs and services offered through the National MS Society. The next two meetings will take place on August 18 and November 17. We hope to see you there!

Interested in peer support in Batavia? Join the National MS Society and the Independent Living Center of the Genesee Region on the second Tuesday of the month, from 4 to 5 p.m. Meetings will take place at the Batavia Independent Living Center on 113 Main Street.

For more information about these groups, call 1-800-344-4867.

Programs Offered

Everyday MattersOn September 17, we will be offering the one-day Everyday Matters program at the Geneseo United Methodist Church from 9 a.m. to 4:30 p.m. The session includes a continental breakfast and light lunch. Everyday Matters, based on “The Happiness Advantage” by Shawn Achor, offers videos, presentations, and discussions designed to help you increase your knowledge of the principles of positive psychology and gain an understanding of how the principles can be used as a strategy for living with MS. The program is open to people living with MS and their support partners. There is a $10 registration fee charged to the person with MS only. To register for the program, please call Dee Mascari or Megan Vaughan at 1-800-344-4867, press 2. Space is limited so register now!

Free From Falls The Free From Falls Program will be offered at Nazareth College in Pittsford this September. The Nazareth physical therapy students have been offering this fall prevention program, under the guidance of instructor Mary Ellen Vore since its pilot stage. Free From Falls is an eight-week interactive program designed specifically for people with MS who are able to walk, but may be at risk for falling. Students will help you develop a personal plan so that you can maximize your safety and well-being while engaging you in exercise to help improve your strength and balance. For further information on Free From Falls and how to register, please contact Dee Mascari at 800-344-4867, press 2 or at [email protected].


The Value of an MS Care Team: Physical Therapy

“Although MS is considered a chronic disease, maintaining or improving functional abilities is important. Participating in physical therapy from a physical therapist knowledgeable in MS can improve an individual’s quality of life,” said physical therapist Mary Ellen Vore of Nazareth College. There are factors specific to MS that can cause unique challenges, making it extremely important to work with a professional who is knowledgeable about your disease. Factors such as an elevated core body temperature, extreme fatigue, spasticity, pain, deconditioning, disrupted sleep, depression, stress, cognition, bowel and bladder problems may be issues that you and your physical therapist need to navigate. If your physical therapist is not familiar with MS, please encourage them to contact the National MS Society so that we might connect them to education and resources to assist them in working with people living with MS.

Your physical therapist can also be helpful when finding the right equipment best suited for you. Rather than purchasing a generic walker or other assistive equipment from your local drug store or online, having a physical therapy assessment and follow up ensures that you are selecting the appropriate assistive device that is correctly adjusted to your needs and that you are using it safely. They can also provide appropriate detail to your physician, assuring that he/she writes an appropriate prescription or letter of necessity for your health insurance coverage.

The National MS Society has created an eight-week fall-prevention program designed specifically for people living with MS. This program is currently being offered in Utica and Pittsford. “Participating in the Free From Falls program allows individuals to participate in balance exercises in a safe environment. The program focuses on various exercises that train the brain and body to better maintain balance” Vore, the instructor of the program, said. Free From Falls is offered by physical therapy students under the supervision of a licensed physical therapist. This creates a dual benefit for the participant’s access to physical therapy and the students becoming more familiar with the specific needs of people living with MS.

For further information on an upcoming Free From Falls program or a referral to a physical therapist, please call 1-800-344-3867.


Scholarships AwardedMS shouldn’t stand in the way of an education. That is why the National MS Society’s scholarship program exists — to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. This year, the Upstate New York Chapter is awarding 11 scholarships, including three nationally ranked top scholar awards, for a total of $19,000.

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].

2016 Scholars

Erica Bitterman University of New England

Freshman, Neuroscience

Therese Boccini Fordham University

at Rose Hill Freshman, Undecided

Jenna Campisi St. John Fisher College

Sophomore, Psychology Major/Biology Minor

Sydney Christ D’Youville College

Junior, Nursing

National Top Scholars

Taylor Bozydaj Massachusetts College

of Pharmacy and Health Sciences

Second Year, PharmD Program

Jahnee Huber Plattsburgh State

University Junior, Psychology

Megan Lafferty Hobart and

William Smith College


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: challengewalkMScapecod.org or 800.344.4867

Natalia Rice Syracuse University Freshman, Pre-Law Program, English

Rebecca Sawler SUNY Oswego

Freshman, Graphic Design and Public

Relations

Matthew Topolski University at Buffalo

Sophomore, Biochemistry and

Psychology

Kathryn Wilson St. Lawrence University

Junior, History and Government

Scholarships Awarded2016 Scholars

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

FOX News Meteorologist Janice Dean to Share Her Story with Western New York’s MS ChampionsThe Upstate New York Chapter is pleased to announce that Janice Dean, a well-known senior meteorologist for Fox News Network, will be the special guest speaker at the Champions on the Move Luncheon. The event, which honors Western New Yorkers who are champions in the MS movement will be held in Buffalo on Friday, September 9, at the Adams Mark Hotel.

Janice has been predicting the weather since 2004 and living with multiple sclerosis since 2005. Janice found hope through her journey and has become passionate about sharing her story to encourage others who are diagnosed with MS. She will share her story through a Q&A format with emcee and WIVB TV 4

anchor Jacquie Walker, another wonderful ambassador for the MS Society.

The Champions who will be honored at the luncheon include:

• Anne L. Schuell Inspirational Man on the Move: Tony Ferro of Change MS

• Anne L. Schuell Inspirational Woman on the Move: Michelle Clark

• Stephen H. Kelly Professional On the Move: Lacey Bromley, PT of Bennett Rehabilitation Institute

• Volunteer on the Move: Jeff Wabick

• Group on the Move: Raymour & Flanigan

For tickets, please visit MSupstateny.org, select events, and then Champions on the Move, or contact [email protected] or 1-800-344-4867, option 2.

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