mS COnneC tiOn

Autumn 2013 OhiO VAlley ChApter

mS COnneCtiOn newSletter

inSiDe thiS iSSue

02letter frOm interim mAnAger

08Bike mS: Venture the VAlley

04Dinner Of ChAmpiOnS

10Be yOur Own mS ADVOCAte

eVentS

nmSS nightAt gABp Thank you for coming out to Great American Ball Park in support of the Cincinnati Reds and the National MS Society Night. Not only did your support raise funds to help those living with MS in the Ohio Valley Chapter service area, but you also helped raise awareness of the movement in front of a crowd of 28,887!

This year Bike MS participant, Paul Bissmeyer, was honored with the opportunity to throw out the ceremonial first pitch on National MS Society Night. Catching for Paul was donor Neal Gellenbeck.

CinCinnAti reDS BrOADCASter AnD BASeBAll hAll Of fAmer mArty BrennAmAn ViSiteD the gOlDen CirCle eVent BefOre the gAme

02 MS connection: AutuMn 2013

upDAte

letter frOm interim mAnAgerHi, I’m Eddie Rauen; Interim Chapter Manager of the Ohio Valley Chapter of the National MS Society. If I haven’t been fortunate enough to meet you, please allow me to tell you a little bit about myself.

Although I grew up in the Cincinnati suburb of Deer Park, and graduated from the University of Cincinnati, my family now resides in Symmes Township. My boys, Trey and Sam, will someday attend Loveland Schools.

The National MS Society became part of my life seven years ago. I was hired after leaving a similar position at St. Jude Children’s Research Hospital in Boston. That’s where I met my wife, Jessica. She was transferred to Cincinnati when Procter and Gamble purchased her employer, Gillette. I was happy to return to my hometown.

You may have heard that our former Chapter President, Kim Deaton, is now the Managing Director of The Children’s Theater of Cincinnati. She built a fantastic team during her tenure at the National MS Society, and we hope to build on the incredible infrastructure she left. Kim deserves many thanks and much praise for the work she did with the Society. We know she’ll be great in her new position, and wish her the very best.

I’m excited to take the temporary reins during this amazing time in MS research. In 2013 alone, we saw:

n the approval of a second oral therapy for relapsing forms of MS and other emerging treatments progressing through the development pipeline.

n the launch of the International Progressive MS Collaborative, the largest effort to date to speed research to stop progressive forms of MS – and the first of its kind to fight progressive forms of MS.

n the discovery of what could be a target of the immune attack in people with MS, which may lead to new understanding of the disease and new treatment strategies.

n completion of the first human trial of an experimental therapy targeting myelin repair. Myelin is a coating of nerve fibers in the central nervous system. When myelin is damaged in MS, it can result in impaired bodily functions or altered sensations.

n progress in restoring functions using innovative rehabilitation techniques, including memory enhancement using a technique involving stories and imagery to solidify learning, and improving balance and mobility with specific exercises.

n advances in uncovering MS triggering factors, bringing us closer to finding ways to prevent the disease; and many other advances pushing us closer to a world free of MS.

The National MS Society continues to propel research forward with a comprehensive strategy aimed at stopping MS, restoring function and

03nationalmssociety.org | 1-800-344-4867

ending MS forever.

Last year, we invested $44 million in over 350 new and ongoing projects; Projects include everything from discovery research to the Society’s drug development efforts. To date, the Society has invested more than $771 million, and has been involved with research resulting in every disease modifying drug therapy on the market.

But that was then. What about now?

Today, our researchers are developing and testing novel experimental treatments and tissue repair strategies that may soon be in use for MS.

Today, there are more potential therapies in the pipeline for MS than at any other time in history.

Today, we are launching a new training program offering five-year awards to mentors and institutions to provide training for board-certified or board eligible neurologists and physiatrists in MS comprehensive care

Thanks to our Walk MS, Bike MS, and MuckFest MS participants. Thanks to our generous donors. Thanks to our tireless volunteers, and to our business partners and sponsors. Thanks to all who advocate for change, and spread awareness. Thank you for reading this newsletter.

Today is made possible because of YOU.

Thank YOU for everything you do to help create a world free of multiple sclerosis. n

Eddie Rauen has been with the National MS Society for over 7 years.

thAnk yOu

Bike mS SpOnSOrSThank you to all the sponsors who are making Bike MS possible!

George Fern Company


eVentS

Dinner Of ChAmpiOnS

The Dinner of Champions is the premier gala event of the National MS Society. It honors many of America’s most prestigious corporate leaders and companies. Founded in 1972, this fundraiser is now one of the country’s most celebrated and popular testimonial events in over 70 of the nation’s largest communities.

The honorees for this year were Michael J. Graham, S.J. and Bridget Hoffman. Father Graham is the recipient of the Silver Hope Award and Mrs. Hoffman received the Joel Kahn MS Award of Courage. Both were recognized as outstanding leaders in our movement toward a world free of MS. They exemplify the dedication and generosity of character of those most committed to cultivating positive change in their communities.

miCheAl J. grAhAm AnD kim DeAtOn

BriAn yOCOnO wAS the mASter Of CeremOnieS

kim DeAtOn AnD BriDget hOffmAn

(left) kim DeAtOn AnD hAley tituS-mitChell(right) AnDy wAlter ADDreSSeS AuDienCe


liVing with mS

SOCiety SChOlAr leArnS frOm mSBY LAUREN MEINTSMA

Multiple sclerosis shouldn’t stand in the way of an education, which is why the National MS Society’s scholarship program exists — to help highly qualified students with MS or who have a parent with MS achieve their dreams of going to college. Since its creation, the program has continued to grow, and in 2013, nearly $1.2 million was awarded to 679 scholars. Thirty-one of those students are Hispanic.

An exceptional student selected from the Pacific South Coast area is Alexander Salazar, from La Mesa, Calif. His Hispanic roots come from his Colombian father. At the age of six, he moved to the United States with his mother. Then, in 2009, Alexander’s mother was diagnosed with MS. Alexander shared that while his mother’s MS is not severe, it is an obstacle in her life. As

an English teacher, she has had difficulty with the speech issues that can come with MS.

Even though MS has meant changes at home for Alexander, he said having a family member with MS has helped him grow. In his scholarship application, he emphasized the compassion he has for his mother and for others living with MS, the patience he must show on a daily basis and his responsibility to believe in himself and his family.

Alexander has also gotten involved in Society fundraising events alongside his mother. This past April, he was a fundraiser for his mother’s Walk MS team in Carlsbad, Calif. “This disease is affecting lives, and I just hope that through our collective effort, we can find a cure,” he says.

Alexander’s using his Society scholarship to attend Chapman University in Orange, California. He wants to become a broadcaster, scriptwriter or actor. He says he is motivated by his mother. “She sacrificed a great deal of her life in order to give me opportunities she never received. It’s the reason I have so much ambition to be successful.”

Scholarship applications are available as of Oct. 1, with a deadline of Jan. 15, 2014. For information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarships. n

Lauren Meintsma is a marketing and public relations intern with the Upper Midwest Chapter and is studying communications and French at Luther College in Decorah, Iowa.


heAlthy liVing

iS thiS nOrmAl?BY LAURIE CLEMENTS LAMBETH

At a recent appointment, I listed my cognitive lapses over the past year.

I have mild c o g n i t i v e impairment; I was tested after 25 years with MS and

suspicions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more difficult. But three recent events had felt different: sudden, strange, like the seizure I had nearly 20 years ago—misfires, blips, spikes on some tiny chart kept by little scientists in my brain wearing white lab coats and horn-rimmed glasses. The charts ribbon out of their little machines, and when a blip occurs, the scientists rip them from the machines and conceal them in their lab coat pockets.

So I asked the physician’s assistant the question we all ask at some point: “Is this normal?”

SupermArket BlipMy husband was somewhere behind me, getting milk while I ducked the supermarket scooter into a quiet aisle. He approached and said,

“Chobani’s on offer.”

“Chobani?” I said.

“You know, Chobani.”

“What . . . is . . . Chobani?” I asked slowly. His face went from quizzical to startled. I play little practical jokes sometimes, and he thought at first this was one of them. But then he realized I was far from joking. I was confused.

“You really don’t remember what Chobani is?” he asked.

“No.” I panicked. “Is it bread?” I thought of another word that begins with a ch- sound, but couldn’t place it. Ciabatta.

Two years before, I had come home from a trip to a writer’s retreat telling him all about the Chobani Greek yogurt I had for breakfast while I was there. So you can imagine his surprise that I did not recognize the name. I wanted to shrink into myself. How strange it felt, as though a shell of silence had formed around me and nobody could come in or let me out.

the “Oh . . .” BlipI forgot. Please hold. I need to find my list in my purse to jog my memory. Listen to some Muzak while you wait, or talk amongst yourselves. La la la . . .

Found it: my list says, “time concept.”

I was scheduled for a haircut and color at 1:00 p.m. It takes me half an hour to 35 minutes to drive to the salon. At 11:45 I was answering email and feeling as though I had plenty of time.


I took a shower. Then it was 12:20. I dressed, did my makeup. I took my time. Then I glanced at the clock. How did it become 1:09?

There was no way I could make it. I was beyond late. At 12:15 I should have been thinking of leaving. At 11:45 I should have realized I was running late. I couldn’t tie it together.

Imagine two strands of yarn. One is the hours ticking by, time itself, and at 1:00 I had my ap-pointment. The other strand of yarn represents the amount of time needed to prepare and drive. The problem is, in my head the two strands of yarn were very far apart, and parallel. I could not connect them. They were loose and felt tiny in my mind, like when my hand is weak or shaky and I can’t grasp a small object.

pArking BlipAt the vet’s office there’s a steep little hill you need to accelerate to climb. At the top I eased the brake. The car sped up. Why aren’t we stop-ping, I thought. Something’s wrong with the car. I pressed harder. We headed faster toward the building. Just as I reached for the emergency brake I saw my foot firmly pressing the gas ped-al, not the brake. I lifted my foot and slammed on the brake just in time.

It took me two days to tell anyone. No harm, but I was shaken, ashamed, confused.

When I asked if having cognitive blips is “nor-mal,” the physician’s assistant paused a moment.

“It’s—common,” she said, her voice measured and lifting.

And I was grateful: more common than normal, strange but shared. n

Laurie Clements Lambeth’s first book Veil and Burn was selected for the 2006 National Poetry Series. To learn more about her work, visit

www.laurieclementslambeth.com.

whAt the SymptOmS meAnUnusual symptoms should be reported to your doctor. They may signify MS-relat-ed disease activity that your doctor may wish to treat, or they may be unrelated to your MS. For example, changes in cog-nition may be caused by many different factors, including MS, depression, stress, medications (for example, some bladder medications), or aging. Your doctor may refer you to a cognitive specialist/neuro-psychologist to help you determine the cause of whatever changes you may be experiencing.

- Rosalind Kalb, PhD, vice president of Clinical Care at the National MS Society


eVentS

Bike mS: Venture the VAlley Thank you to those who participated, volunteered, and fundraised for Bike MS: Venture the Valley 2013. More than 800 riders helped raise nearly $550,000 so far to benefit people in this area living with MS.

Excited about next year?! Sign up now at BikeMSVentureTheValley.org and save on registration! Get a jump on fundraising and support the Mission!


heAlthy liVing

hiring An in-hOme heAlthCAre COmpAny CAn Be SCAry!!!BY AARON STAPLETON, GUEST COLUMNIST

How to ensure you pick the correct company to fit your needs and receive the best quality care.

The In-Home Health Care field is one of the fastest growing fields in the United States. Personal Care Assistants along with Home Health Aides are projected to be the two fastest growing jobs of the decade. During the past 3 years, 300 new home care companies have become Medicare Certified in Ohio alone.

With this growing trend, it is becoming increasingly important to pick a home health agency that is the right fit for you and your family. The best way to start this process is by asking the right people for advice or suggestions. Most people will ask friends, family, co-workers, neighbors and physicians. Here is an additional list of contacts that are also great resources:n Non-Profit Organizations (like the National

MS Society)n Attorneysn Local Council on Aging Groupsn National Association for Home Caren The Eldercare Locatorn Financial Planners

n Better Business Bureau

After generating a list of potential agencies, the next step is asking these agencies the correct questions. This is imperative. The care you or your loved ones receive can be a direct reflection of the quality of the agency. Here are some questions which can help guarantee you choose the correct company.n How long has the agency been serving the

community?n Are they Locally Owned and Operated?n Are they fully bonded and insured?n Do they create an individualized Plan of Care

for each client?n How closely do the supervisors oversee the

client’s care?n Are the Agency Staff Members and Nurse

Supervisors available 24 hours a day?n Are the caregivers hired and trained within

the company or are they subcontractors?n What employee screening and background

checks are completed on all employees?n Are they willing to offer me a list of references?n What sets them apart from other agencies?

By knowing who to seek for advice and remembering the questions to ask, you and your loved ones can receive the quality care that is deserved. n

Aaron Stapleton, Business Operations / Owner of Queen City Homecare 513-281-8000


ADVOCACy

Be yOur Own BeSt ADVOCAteBY JENNIFER LARUE HUGET

Your whole life changes when you learn you have multiple sclerosis; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions.

Like many others with MS, the process of learning to live with my condition opened my eyes to the necessity for me to become an advocate — for myself and, by extension, for others with MS.

I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best healthcare, education opportunities and play dates possible.

But those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. But self-advocacy doesn’t necessarily come naturally. I, for one, have always been a bit reticent to ask others to do things for me.

The National MS Society, recognizing that many people are in the same boat, offers helpful advice at www.nationalMSsociety.org/selfadvocacy for learning to take on the role of self-advocate in the key realms of our lives, from our workplaces and schools to our families and communities.

A recent legal settlement highlights the importance of self-advocacy for people with MS who are navigating the healthcare system. In the case of Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits, regardless of whether their condition improves as a result of the treatment provided.

Self-ADVOCACy DOeSn’t AlwAyS COme nAturAlly.

A bit of background: For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who needed rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients


whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered.

The new settlement reinforces the original intent of the law — that it’s not legal for Medicare to deny coverage on that basis. The law requires the Centers for Medicare & Medicaid Services (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings.

Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy.

To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials at www.medicare advocacy.org/take-action/self-help-packets-for-medicare-appeals to help people understand coverage rules and learn how to contest Medicare denials for outpatient, home health or skilled nursing facility care.

Of course, it’s important to bear in mind that the settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required

patients to show improvement in their condition, not just maintenance, is a big step in the right direction — and one that we should all be aware of as we navigate the healthcare system.

The term “self-advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C., to lobby for funds for MS research. I have since learned that, yes, lobbying is at one end of the self-advocacy spectrum. But at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy.

At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ’em. n

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children’s book author, she lives in Connecticut with her husband, two teenage kids and two brown dogs.

Visit her website at www.jenniferlaruehuget.com.

Originally published at blog.nationalMSsociety.org.


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GILENYA may cause serious side effects such as:•Slowheartrate,especiallyafteryourfirstdose.AnECG

willbeperformedbeforeand6hoursafteryourfirstdose.Yourpulseandbloodpressureshouldbecheckedeveryhourwhileyoustayinamedicalfacilityduringthistime. Ifyourheartrateslowsdowntoomuch,youmightfeeldizzyortired,orfeellikeyourheartisbeatingslowlyorskippingbeats.Symptomscanhappenupto24hoursafteryourfirstdose.After6hours,ifyourECGshows anyheartproblemsorifyourheartrateisstilltooloworcontinuestodecrease,youwillcontinuetobewatchedbyahealthcareprofessional.Ifyouhaveanyserioussideeffectsafteryourfirstdose,especiallythosethatrequiretreatmentwithothermedicines,youwillstayinamedicalfacilitytobewatchedovernightandforatleast6hoursafteryourseconddoseofGILENYAthenextday.Ifyouhavecertaintypesofheartproblems,orifyouaretakingcertaintypesofmedicinesthatcanaffectyourheart, youwillbewatchedovernightafteryoutakeyourfirstdose.Ifyouexperienceslowheartrate,itwillusuallyreturntonormalwithin1month.Callyourdoctororgo tothenearestemergencyroomrightawayifyouhave anysymptomsofaslowheartrate.IfyoustoptakingGILENYAformorethan14daysafteryourfirstmonth oftreatment,youwillneedtorepeatthisobservation.

•Increasedriskofseriousinfections.GILENYAlowers thenumberofwhitebloodcells(lymphocytes)inyourblood.Thiswillusuallygobacktonormalwithin2monthsofstoppingGILENYA.YourdoctormaydoabloodtestbeforeyoustartGILENYA.Increasedriskofinfectionwasseenwithdoseshigherthantheapproveddose(0.5mg).Twopatientsdiedwhotookhigher-doseGILENYA(1.25mg)combinedwithhigh-dosesteroids.Callyourdoctorrightawayifyouhavefever,tiredness,bodyaches,chills,nausea,orvomiting.

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(CONTINUEDFROMPREVIOUSPAGE)

Important Safety Information


ADVERTISEMENTMEDICATION GUIDEGILENYA™ (je-LEN-yah) (fingolimod) capsules Read this Medication Guide before you start using GILENYA andeach time you get a refill. There may be new information. This information does not take the place of talking with your doctorabout your medical condition or your treatment.What is the most important information I should know aboutGILENYA?GILENYA may cause serious side effects, including: 1. Slow heart rate (bradycardia or bradyarrhythmia) when you

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You should stay in a medical facility for at least 6 hours afteryou take your first dose of GILENYA.

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usually happen during the first 6 hours after your first doseof GILENYA. Symptoms can happen up to 24 hours after youtake your first GILENYA dose.

• 6 hours after you take your first dose of GILENYA you willhave another ECG. If your ECG shows any heart problems orif your heart rate is still too low or continues to decrease, youwill continue to be watched.

• If you have any serious side effects after your first dose ofGILENYA, especially those that require treatment with othermedicines, you will stay in the medical facility to be watchedovernight. You will also be watched for any serious side effects for at least 6 hours after you take your second dose of GILENYA the next day.

• If you have certain types of heart problems, or if you are tak-ing certain types of medicines that can affect your heart, youwill be watched overnight after you take your first dose ofGILENYA.

Your slow heart rate will usually return to normal within 1 monthafter you start taking GILENYA.

Call your doctor or go to the nearest emergency room rightaway if you have any symptoms of slow heart rate.

2. Infections. GILENYA can increase your risk of serious infec-tions. GILENYA lowers the number of white blood cells (lym-phocytes) in your blood. This will usually go back to normalwithin 2 months of stopping treatment. Your doctor may do ablood test before you start taking GILENYA. Call your doctorright away if you have any of these symptoms of an infection:

• fever • tiredness • body aches • chills • nausea • vomiting3. A problem with your vision called macular edema. Macular

edema can cause some of the same vision symptoms as anMS attack (optic neuritis). You may not notice any symptomswith macular edema. Macular edema usually starts in the first

3 to 4 months after you start taking GILENYA. Your doctorshould test your vision before you start taking GILENYA and 3 to 4 months after you start taking GILENYA, or any time you notice vision changes during treatment with GILENYA. Your riskof macular edema may be higher if you have diabetes or havehad an inflammation of your eye called uveitis.

Call your doctor right away if you have any of the following: • blurriness or shadows in the center of your vision • a blind spot in the center of your vision • sensitivity to light • unusually colored (tinted) vision What is GILENYA?GILENYA is a prescription medicine used to treat relapsing formsof multiple sclerosis (MS) in adults. GILENYA can decrease thenumber of MS flare-ups (relapses). GILENYA does not cure MS,but it can help slow down the physical problems that MS causes.It is not known if GILENYA is safe and effective in children under age 18.Who should not take GILENYA? Do not take GILENYA if you: • have had a heart attack, unstable angina, stroke or warning

stroke or certain types of heart failure in the last 6 months • have certain types of irregular or abnormal heartbeat

(arrhythmia), including patients in whom a heart findingcalled prolonged QT is seen on ECG before starting GILENYA

• are taking certain medicines that change your heart rhythmIf any of the above situations apply to you, tell your doctor.What should I tell my doctor before taking GILENYA?Before you take GILENYA, tell your doctor about all your medicalconditions, including if you had or now have: • an irregular or abnormal heartbeat (arrhythmia) • a history of stroke or warning stroke • heart problems, including heart attack or angina • a history of repeated fainting (syncope) • a fever or infection, or you are unable to fight infections. Tell

your doctor if you have had chicken pox or have received the vaccine for chicken pox. Your doctor may do a blood test for chicken pox virus. You may need to get the vaccinefor chicken pox and then wait 1 month before you start tak-ing GILENYA.

• eye problems, especially an inflammation of the eye calleduveitis.

• diabetes • breathing problems, including during your sleep • liver problems • high blood pressure • Are pregnant or plan to become pregnant. GILENYA may

harm your unborn baby. Talk to your doctor if you are preg-nant or are planning to become pregnant.

• Tell your doctor right away if you become pregnant whiletaking GILENYA or if you become pregnant within 2 monthsafter you stop taking GILENYA.

• If you are a female who can become pregnant, you shoulduse effective birth control during your treatment withGILENYA and for at least 2 months after you stop takingGILENYA.

Pregnancy Registry: There is a registry for women who becomepregnant during treatment with GILENYA. If you become preg-nant while taking GILENYA, talk to your doctor about register-ing with the GILENYA Pregnancy Registry. The purpose of thisregistry is to collect information about your health and yourbaby’s health.


ADVERTISEMENT For more information, you can call the GILENYA Pregnancy

Registry at 1-877-598-7237 or visit www.gilenyapregnancyregistry.com.

• Are breastfeeding or plan to breastfeed. It is not known ifGILENYA passes into your breast milk. You and your doctorshould decide if you will take GILENYA or breastfeed. Youshould not do both.

Tell your doctor about all the medicines you take, including pre-scription and non-prescription medicines, vitamins, and herbalsupplements. Know the medicines you take. Keep a list of your medicines withyou to show your doctor and pharmacist when you get a newmedicine. Using GILENYA and other medicines together may affect eachother causing serious side effects. Especially tell your doctor ifyou take: • Medicines for: • heart problems or • high blood pressure or • other medicines that may lower your heart rate or change

your heart rhythm • Vaccines. Tell your doctor if you have been vaccinated within

1 month before you start taking GILENYA. You should not getcertain vaccines while you take GILENYA and for at least 2 months after you stop taking GILENYA. If you take certainvaccines, you may get the infection the vaccine should haveprevented. Vaccines may not work as well when given duringGILENYA treatment.

• Medicines that could raise your chance of getting infections,such as medicines to treat cancer or to control your immunesystem.

• ketoconazole (an antifungal drug) by mouthAsk your doctor or pharmacist for a list of these medicines if you arenot sure.How should I take GILENYA? • Your first dose of GILENYA will be given in a medical facility

where you will be watched for at least 6 hours after your firstdose of GILENYA. See “What is the most important informa-tion I should know about GILENYA?”

• Take GILENYA exactly as your doctor tells you to take it. • Take GILENYA 1 time each day. • Take GILENYA with or without food. • Do not stop taking GILENYA without talking with your doctor

first. • If you start GILENYA again after stopping for 2 weeks or

more, you will start taking GILENYA again in your doctor’s office or clinic.

What are possible side effects of GILENYA?GILENYA can cause serious side effects. See “What is the most important information I should knowabout GILENYA?”Serious side effects include: • Breathing Problems. Some people who take GILENYA have

shortness of breath. Call your doctor right away if you havetrouble breathing.

• Liver problems. GILENYA may cause liver problems. Yourdoctor should do blood tests to check your liver before youstart taking GILENYA. Call your doctor right away if you haveany of the following symptoms of liver problems:

• nausea • vomiting • stomach pain • loss of appetite

• tiredness • your skin or the whites of your eyes turn yellow • dark urineThe most common side effects of GILENYA include: • headache • flu • diarrhea • back pain • abnormal liver tests • cough Tell your doctor if you have any side effect that bothers you orthat does not go away. These are not all of the possible side effects of GILENYA. Formore information, ask your doctor or pharmacist. Call your doctorfor medical advice about side effects. You may report side effectsto FDA at 1-800-FDA-1088.How do I store GILENYA? • Store GILENYA in the original blister pack in a dry place. • Store GILENYA at room temperature between 59°F to 86°F (15°C

to 30°C). • Keep GILENYA and all medicines out of the reach of children.General information about GILENYAMedicines are sometimes prescribed for purposes other thanthose listed in a Medication Guide. Do not use GILENYA for a con-dition for which it was not prescribed. Do not give GILENYA toother people, even if they have the same symptoms you have. Itmay harm them.This Medication Guide summarizes the most important informa-tion about GILENYA. If you would like more information, talk withyour doctor. You can ask your doctor or pharmacist for informa-tion about GILENYA that is written for healthcare professionals. For more information, go to www.pharma.US.Novartis.com or call 1-888-669-6682.What are the ingredients in GILENYA?Active ingredient: fingolimod Inactive ingredients: gelatin, magnesium stearate, mannitol, tita-nium dioxide, yellow iron oxide.This Medication Guide has been approved by the U.S. Food andDrug Administration.GILENYA is a trademark of Novartis AG.Manufactured by:Novartis Pharma Stein AGStein, SwitzerlandDistributed by:Novartis Pharmaceuticals CorporationEast Hanover, New Jersey 07936© NovartisT2012-109May 2012


newly DiAgnOSeD

iS it hArDer tO wOrk with mS?JULIE STACHOWIAK, PhD

Many people with multiple sclerosis find it difficult to continue working, even in the early years of the disease. Tasks that seemed challenging before MS can become seemingly insurmountable afterward. The fluctuation of daily symptoms and unknown levels of future disability make mapping out a strategic career path a challenge, to say the least. We simply do not know what the future holds around our ability to perform a job.

“i Am ABle tO wOrk mOre when i feel gOOD, leSS when i feel BAD, AnD tAke A quiCk nAp if neeDeD.”

I am lucky enough to be able to work from home. I am able to work more when I feel good, less when I feel bad, and take a quick nap if needed. There are days when I can work a full day, but there are many days when I do not feel productive at all — when even looking at the computer screen feels like torture.

I know that as each year has gone on, the problems that I have had in trying to work efficiently seem to get worse. However, recent research indicates that some people who are newly diagnosed or have had an episode of a clinically isolated syndrome may already need to adjust their time at work.

Researchers in the Netherlands wanted to look at how MS-related cognitive dysfunction affected work in people who are recently diagnosed with MS. In the Cognition and Socio-Economics (COGNISEC) study, the researchers studied 45 people who had been diagnosed with MS or had a clinically isolated syndrome within the past two years and have been on disease-modifying therapy for less than six months or not at all.

whAt they fOunD: n People with higher levels of fatigue and

disability all decreased their working hours within 12 months following diagnosis.

memOry iSSueS mAy impACt emplOyment


n Lower long-term memory scores correlated with a lower number of hours and days spent working during the week.

n People who scored lower on “focused attention” and “speed of memory” were more likely to say they “wished to work less.”

n Scores on tests assessing depression (Beck Depression Inventory) did not correlate at all with quantity of working hours.

While its findings need to be replicated in larger studies, so far this research shows that cognitive dysfunction can negatively impact the capacity to work, even in the very early stages of MS.

wOrking A BAlAnCeWhat does this mean? Let’s face it, even jobs that we love can lose some of their luster when we have to negotiate symptoms that add to our physical disability. While it is tempting to keep pushing ourselves to do more and overcome some of these challenges, it is important to remind ourselves that we may have very real cognitive symptoms related to our MS that are impacting our abilities to work the same way we did in the past.

“... SO fAr thiS reSeArCh ShOwS thAt COgnitiVe DySfunCtiOn CAn negAtiVely impACt the CApACity tO wOrk, eVen in the Very eArly StAgeS Of mS.”

On the other hand, many people with MS continue working long after their diagnosis. Disease-modifying therapies, new technologies, better symptom management, legal employment protections and community resources can help you remain in the workforce — and education and preparation can be your most powerful tools for success.

Diagnosed with MS in 2003, Julie Stachowiak, PhD, is the author of The Multiple Sclerosis Mani-festo and www.ms.about.com. Originally posted at blog.nationalMSsociety.org

tOOlS tO wOrkIf you’re struggling to keep up at work, but aren’t ready to throw in the towel just yet, visit www.nationalMSsociety.org/ employment or call an MS Navigator at 1-800-344-4867 to learn more about your options and get connected with employ-ment resources in your area.

The Job Accommodation Network at www.askjan.org also offers information on a range of subjects for working people with disabilities.

Ohio Valley Chapter4440 Lake Forest DriveCincinnati, OH 45242

eVentS

AmBASSADOrS BreAkfAStAmbassadors have the power to inspire, excite and encourage others with their story.

On September 12, 2013, we held our inaugural Ambassadors Breakfast in honor of the 2013 Walk Ambassadors. Many shared their unique stories about how they’ve been touched by MS.

Jim AnD JOAnn BODenmiller ShAreD their inSpiring StOry

Dr. muBin SyeD Of DAytOn interVentiOnAl rADiOlOgy ADDreSSeS the AuDienCe

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