SUMMER 2013 GREATER ILLINOIS CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

810 NEW COLLEGE SCHOLARSHIPS AWARDED

10PROGRESS ON MS THERAPIES

14ILLINOIS MS TASK FORCE IN THE MAKING

15IT’S ALL ABOUT THE CONNECTIONS

JUSTINE TALKS ABOUT MARKETING, MS, CHICAGO & HER EXTENSIVE EYEGLASS COLLECTION

See story on page 2

2013 WOMEN ON THE MOVE HONOREE

Justine Fedak

GETTING to KNOW

2 MS CONNECTION: SUMMER 2013

NATIONAL MULTIPLE SCLEROSIS SOCIETYGreater Illinois Chapter 525 West Monroe St. • Suite 900 Chicago IL 60661 1-800-344-4867

Chairman: Sean Gallagher Chapter President: John Blazek Editor: Jeremy Barewin Design: Chris Collins

© 2013 National Multiple Sclerosis Society, Greater Illinois Chapter

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

FEATURE STORY

GETTING TO KNOW OUR 2013 WOMEN ON THE MOVE HONOREE, JUSTINE FEDAK MOST WOULD SAY that Justine Fedak has an active life. As Senior Vice President and Head of Brand, Advertising and Sponsorships for BMO Financial Group, North America, Fedak is responsible for brand positioning, advertising, and promotional activities for the personal, commercial, and wealth management businesses for the bank. The Toronto native has worked for BMO since 1992, first in Canada, before moving to Chicago 10 years ago.

On the side, she is an Executive Director of The Noah’s Arc Foundation, Chicago Bull Joakim Noah’s charitable organization, and is very involved with youth, sports and the arts. Fedak is also a regular contributor to the Chicago Sun-Times “Splash” column. She serves of the Board of Directors of the Greater North Michigan Ave. Association and Gilda’s Club Chicago, and in 2012 was selected to Chair the Municipal Marketing Advisory Council for the City of Chicago.

Fedak (@JustineFedakMS) also lives with multiple sclerosis, but it rarely slows her down. On Monday, August 19, she will be honored by the Greater Illinois Chapter at its sixth annual Women on the Move luncheon, at the Ritz-Carlton in downtown Chicago. Fedak recently took some time to discuss her career and her columns, the ups and downs of MS, life in Chicago, and of course her glasses.

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If I had one wish for anyone newly diagnosed is that I could wrap my arms around them and tell them all the wonderful things that MS has brought me...

Tell us about your work with Joakim Noah of the Chicago Bulls and his Noah’s Arc Foundation.

Justine: Joakim’s mom, Cécilia, is one of my closest and dearest friends. I got to know them all about seven years ago and I really consider them family. They are the most committed people to using sports and the arts as a way of helping kids better express themselves. Something that is very exciting is all the work that Noah’s Arc is doing both with the Major Adams Center on the west side near United Center and also something that Joakim tweets about a lot, which is “Rock Your Drop.” Basically the idea is a way of people being able to raise consciousness and raise funds to continue doing more programming in support of creating a better way for kids to express themselves so they don’t turn to violence. It’s pretty powerful stuff and I’m honored to be a part of it.

How did you first become involved in the media communications field?

Justine: Like all good things it happened with no plan at all. I finished my degree at the University of Toronto with the idea that I would go to law school perhaps. I was met with a tragedy when my boyfriend of many years died in a car crash and so I really sort of lost the sense of what direction I wanted to take in a career sense. I was just lucky enough to have a best girlfriend whose dad worked at the bank and who suggested that I join a department at that time called Public Affairs – and they handled marketing communications, media relations, editorial, everything that had to do with that side of the world and I immediately became a disciple of the discipline.

Continued on page 4

4 MS CONNECTION: SUMMER 2013

Talk a little bit about when you were diagnosed with multiple sclerosis in 2001.Justine: I have to be honest, at that time I had no idea what multiple sclerosis was. I did not know anybody with multiple sclerosis; no one had ever explained it to me. Basically from there, I had a very difficult number of months, both I would say emotionally trying to understand the implications and the messages at the time were less than hopeful. There was a point where I said I wasn’t going to accept any of that because it just didn’t make sense to me and I’m a very hopeful person. My attitude was I will realistically listen and read everything that I can about MS and I will become just as educated as any neurologist could be on this one disease. My brother, who is a cardiac surgeon, was a big support to me. He told me to start learning about this so you can be your own best advocate and those words rang very true throughout the entire decade that I’ve lived with MS because it has allowed me to feel empowered when my body betrayed me.

Has living with MS helped you be more open emotionally through your columns in the Sun-Times? Justine: MS has made me a more forgiving person, it’s forced me to slow down at times and accept things differently. But because I have no choice, I have embraced the sort of wonderful things that it’s allowed me to experience. When you have to lay in bed for day after day after day when you are in a really bad exacerbation, you have to really get to know yourself. I realized how much I actually liked myself and I think that was probably a very healthy thing. So in my columns, after I write them, I don’t really think about them anymore. But then people

will approach me and talk about something that they felt about it or something that it reminded them of in their life and they’ll share their story with me and that’s really amazing. And to me, what I hope with MS is that it can be this two-way dialogue that I can share stuff about people and they feel they can ask me really personal questions that will help them better understand something they may be wrestling with in their life, and it helps me too.

What would you tell someone today who is newly diagnosed with MS?Justine: If I had one wish for anyone newly diagnosed is that I could wrap my arms around them and tell them all the wonderful things that MS has brought me, all the things I now realize that I didn’t know about my body. The fact that when I wake up every morning and I can feel all my limbs and I can see and I feel rested, I think how magnificent I am. I would have never have thought that before. I think you can find very positive things.

Tell us about the Epic Study (MSepcistudy.com) that you are participating in with Dr. Stephen Hauser, who was our keynote speaker at last year’s Research Symposium.Justine: I went to see him and his team there (in San Francisco). If there’s one thing I can say when everybody asked me how was your trip, I said ‘the most hopeful experience I’ve ever had.’ It’s the stuff that any person that wants to help should be helping with because that’s the work that is going to change lives. Their compassion and their passion are insurmountable. Honestly, nobody wants to sign up for a day of tests, but I

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would do it again in a heartbeat just because it was so amazing to see these people’s dedication to this disease.

As our Women on the Move honoree, what is one of your goals for the year?Justine: It’s to help people understand what MS is. I have people say to me all the time, ‘you don’t look like you have MS, you look great.’ So that’s actually the thing, what does someone with MS look like? Like me — they look like me with my cane; they look like me without my cane; they look like me in a wheelchair; they look like me disheveled or put together; they look like me in my pajamas or in my suit for work. Because you can’t see MS, that’s why it’s a non-visual disability. And so I think it’s so important that for me it’s my commitment to giving a voice to what it feels like to have MS.

What does it personally mean to you to receive this honor?Justine: I think it’s a huge privilege, specifically because I really am passionate about raising awareness for both people living with MS so they understand that they can live very happy and full lives, and also to help people understand how to deal with somebody who may be suffering some of the difficult things

with MS, both emotionally and physically, and to really provide a face to something that a lot of people are still living with very silently. To me, it’s a responsibility as this year’s honoree to do everything I can around the city to generate attention and awareness to help people living with MS and to raise funds.

What do you enjoy most about the city of Chicago? Justine: Everything. I love this city. The very first time I ever came to Chicago I was 17 years old, and I said to my friend whose sister lived here, ‘I’m going to live in Chicago’ and she said, ‘you’re not, there’s no way.’ And just as life would have it, it delivered me back here, and this is home to me. I absolutely love Chicago. I’m as active as possible in every way and I’m proud of everything that Chicago has to offer.

How many pair of glasses do you currently own and what do they signify to you?Justine: Now I have 46 pairs. Over time, my glasses sort of became my shield and they became my signature. My glasses have just become part of me and I like the idea of changing them depending on my mood. Some people accessorize with a hat or their clothes, but for me it’s my glasses that sort of define me, and I don’t plan to get rid of them at all. n

2O13

presented by:

Honorary Chair: Cécilia Rodhe

Proceeds benefitMONDAY, AUGUST 19, 2013 RITZ-CARLTON CHICAGO | 160 E. PEARSON ST.

Purchase tickets online: MSluncheon.org

Honoring Justine Fedak, BMO Financial Group

MS CONNECTION: SUMMER 20136

FAMILY PROGRAMS

10 NEW COLLEGE SCHOLARSHIPS AWARDED

Ten new recipients of a $1,000 college scholarship have been announced as part of the Greater Illinois Chapter’s annual Scholarship Program, which helps Illinois students affected by multiple sclerosis pursue

a college or technical school education. Additionally, one Top Scholar, Gail Malecki, will receive a $3,000 scholarship through the Society’s national office, which is eligible for renewal each collegiate year.

In addition to its emotional toll, MS can have a substantial financial impact on a family. The direct and indirect costs of MS, including lost wages — even for those with health insurance — are estimated at more than $70,000 annually per household. This makes funding a college education that much greater of a challenge; the Scholarship Program exists to keep the gift of attending a post-secondary school within reach.

The National Scholarship Program, now in its 10th year, is open to high school seniors who live with MS or have a parent or close family

member who does; who have not yet been to a post-secondary school. This year, 423 new awards and 257 renewals totaling $1,156,225 were presented nationwide. Applicants are evaluated based on financial need, academic record, leadership and volunteer activities, a statement of educational and career goals, and letters of recommendation.

This Year’s Greater Illinois Chapter MS scholarship recipients include:

n Gail Malecki, of Lake in the Hillsn Alaina Beaird, of Springfieldn Isabella Furlan, of Chicagon Briana Jarnagin, of Chicagon Josephine Jose, of Waukegann Anisha Kimble, of Chicagon Marcin Krzysiak, of Oak Lawnn Alexandra Morgan, of Barringtonn Kyle Neese, of Napervillen Thomas Pelarinos, of Schaumberg

Support for the scholarship program traditionally comes from foundations, chapter donors, and our own employee giving program, among other sources. Multiple Solutions, the Greater Illinois Chapter’s junior board, contributed $5,000 toward the program in 2013.

Information about scholarships for 2014-15 will be available on the National MS Society Web site on October 1. For more information, call 1-800-344-4867 or visit nationalMSsociety.org/scholarship. n

Top Scholar, Gail Malecki

7NATIONALMSSOCIETY.ORG | 1-800-344-4867

THANK YOU TO ALL OUR SPONSORS & PARTICIPANTS OF WALK MS 2013SAVE THE DATE FOR OUR PEORIA & URBANA WALKS SUNDAY, SEPTEMBER 8, 2013

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TO ALL OUR BIKE MS SPONSORS AND PARTICIPANTS WE WOULD LIKE TO SAY THANK YOU FOR OUR BIGGEST YEAR YETSAVE THE DATE FOR BIKE MS 2014 - JUNE 21 & 22BIKEMSILLINOIS.ORG

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MS CONNECTION: SUMMER 20138

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

NATIONALMSSOCIETY.ORG | 1-800-344-4867 9whose 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.

MS CONNECTION: SUMMER 201310

RESEARCH

PROGRESS ON MS THERAPIESBY MEGAN WEIGEL, CNP, ARNP-C, MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral dimethyl fumarate (brand name Tecfidera™) by the U.S. Food and Drug Administration (FDA) in March, 2013, we now have 10 disease- modifying therapies to treat relapsing forms of MS—and more on the horizon.

Tecfidera is the third oral therapy approved to treat MS. A related compound, called Fumaderm (dimethyl fumarate and fumeric acid esters), has been used for decades in Europe to treat psoriasis. Tecfidera is a new and different formulation of dimethyl fumarate developed by Biogen Idec specifically to treat MS. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even protect against damage to the brain and spinal cord.

Two large phase III studies (the DEFINE and CONFIRM trials) found that Tecfidera significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. Before starting treatment, the FDA recommends a recent (within six months) blood cell count, repeated annually thereafter.

The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments such as Tecfidera.

Here are potential therapies to keep an eye on as we move forward into 2013 and beyond.

Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later.

Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta-1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders.

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Laquinimod is a once-daily oral immune modulator that showed in phase III studies to decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS.

Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsing-remitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits.

Research is also underway on potential treatments for progressive forms of MS and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Current clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

MAKING CHOICESWhen we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of

newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged.

Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations.

However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible.

To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety.org/signup, or visit nationalMSsociety.org/research.

Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.

12 MS CONNECTION: SUMMER 2013

HEALTHY LIVING

IS THIS NORMAL?BY LAURIE CLEMENTS LAMBETH

At a recent appointment, I listed my cogni-tive lapses over the past year.

I have mild cogni-tive impairment; I was tested af-ter 25 years with MS and suspi-

cions that I wasn’t quite up to my old speed of thought. Dividing my attention, shifting focus and finding words have steadily grown more dif-ficult. 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, get-ting milk while I ducked the supermarket scoot-er 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 an-other 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.

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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

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

MS CONNECTION: SUMMER 201314

ADVOCACY

ILLINOIS MS TASK FORCE IN THE MAKINGThe more than 20,000 individuals affected by MS in Illinois often find difficulty navigating the public sector. Between the various levels of government – state, federal, and local – and the multiple agencies that may impact their lives, the needs of those living with MS are often left unmet despite existing resources. Recently, an initiative of the National MS Society is seeking to address these unmet needs.

Along with the Gateway Chapter in St. Louis, the Greater Illinois Chapter is seeking to establish an MS Task Force within the Illinois Department of Public Health. This Task Force – modeled after a Society-backed initiative in New Jersey – would be comprised of government officials, medical professionals, MS Activists, and Society staff. Illinois MS Activists have secured strong legislative support for the Task Force, which will be established if a bill (Senate Bill 1640), sponsored by Senate President John Cullerton and State Rep. Ann Williams, is signed into law by Governor Pat Quinn. The Task Force would then develop strategies to better coordinate existing government services and develop innovative proposals for addressing the needs, and enhancing the quality of life of those affected by MS in Illinois. n

MAKE A DIFFERENCE, BE AN MS ACTIVISTDo you know your local elected officials? There are two U.S. Senators from Illinois, Dick Durbin and Mark Kirk. They serve in Washington, D.C., along with 18 Congressman. In Springfield, the Illinois General Assembly is comprised of 118 members of the House of Representatives, and 59 in the Senate. MS Activists regularly meet with these elected officials to help pass legislation that will improve the lives of those living with MS in Illinois; you could be one of the voices heard.

In the coming months, MS Activists across Illinois will be meeting with their elected representatives at both a state and federal level to advocate for issues important to the MS community. At a federal level, these include supporting funding for the National Institutes of Health, and other publically funded MS research. At a state level, key issues include support for the MS Lottery Ticket (The MS Project), health care reform implementation, and awareness of key disability and accessibility issues. Together, with Greater Illinois Chapter staff and members of the Government Relations Committee, you could become an MS Activist and participate in these in-district meetings in your local area.

If you are interested in in-district and local activism or want to share your story, contact Scott Belsky at scott.belsky@nmss.org or 312-421-4500. n

NATIONALMSSOCIETY.ORG | 1-800-344-4867 15

presented by

To register, call 1.800.344.4867 or visit MSillinois.org

Saturday, August 24, 2013

Registration & Breakfast: 9:00 amProgram Agenda: 9:30 am - 1:00 pm

Par-A-Dice Hotel | East Peoria, Illinois

2013 RESEARCH UPDATE | FREE EVENT

7TH ANNUAL REGIONAL

PLEASE JOIN US FOR

GETTING INVOLVED

IT’S ALL ABOUT THE CONNECTIONS Glen Ellyn resident, Angela Loftus, was diagnosed with relapsing remitting MS in January 2004. Her son, Declan, was seven at the time and didn’t fully understand what MS was or how it was affecting his mother. There were times when Angela wasn’t able to make Declan’s school functions, baseball games or music recitals because it was too warm out or she was profoundly fatigued. She struggled at first, but with her family’s support and through involvement in various Chapter programs, Angela and her family have found a balance.

“MS changes the lives of families, not just the lives of individuals,” said Loftus. “MS has affected my family in many ways. They have to go places without me, or they have to stay home when I need help, but my family members are my support system and my champions.”

Loftus first became involved when she participated in Walk MS following her diagnosis. Every year since 2004, Loftus’ team, the MSketeers have participated and fundraised at Walk MS in Naperville. This year their team had 11 registered members and they raised over $13,500. Following Walk MS, Loftus received information about a program called MS Youth Camp, a camp for children who have a household family member living with MS. Upon learning of this camp, Declan was very eager to go and he has attended for the past four years.

“He wouldn’t miss it,” said Loftus. “That first year, he came back a different person, more confident, mature and even happier than when he left at the beginning of the week. Camp allowed him to be with other kids who are in similar situations, and who understand what it’s like to live with a family member who suffers from MS.”

The Loftus's believe in staying connected with families that they have met through Walk MS and through MS Youth Camp, as well as the Greater Illinois Chapter staff. They do this is by attending other chapter functions, such as MS Family Day at the Shedd Aquarium and the Kane County Cougars’ baseball game in Geneva.

“Being involved with different Chapter programs and fundraisers is so empowering. When facing this disease, I feel it’s very important for people to get involved in order to help themselves, their families, and others,” said Loftus. “There is definitely strength in numbers. We can accomplish so much together, both by raising awareness and by supporting one another.”

For Family Programs in your area, visit the Programs and Services page at MSillinois.org.

525 West Monroe St. • Suite 900Chicago IL 60661

Mailing Label ChangesPlease check the appropriate box below, correct the label then return to National MS Society, Greater Illinois Chapter

q Name change or misspelledq Address changeq Remove from mailing listq Received more than one copyq To cuts costs for the Greater IL Chapter, I will

download an eletronic .pdf from their website. Please remove me from this mailing list.

VOLUNTEER CORNERn Volunteering for the Greater Illinois Chapter is one way

that you can make a difference in the lives of people with MS. Join us by calling 1-800-344-4867 or sign up for these upcoming events online:• MS Slugfest, Aug. 10 (Chicago) multiple-solutions.com• Walk MS, Sept. 8 (Peoria and Urbana) WalkMSillinois.org• Research Symposium, Oct. 19 (Rosemont)

volunteerillinois@nmss.org

n October 19 - Save the date for the annual MS Research Symposium and Volunteer Recognition Awards event where we will honor this year’s volunteer awardees. To learn more, visit MSillinois.org or call 1-800-344-4867.

n Stay connected with other volunteers and ways to volunteer - Join the Volunteer Group on Facebook at facebook.com/groups/MSGreaterILVolunteers.

SAVE the DATECOHN WEIL MEMORIAL MS OUTING HIGHLAND PARK, IL - JULY 8, 2013

MS SLUGFEST CHICAGO, IL - AUGUST 10, 2013

WOMEN ON THE MOVE CHICAGO, IL - AUGUST 19, 2013

REGIONAL RESEARCH SYMPOSIUM PEORIA, IL - AUGUST 24, 2013

WALK MS - PEORIA & URBANA SEPTEMBER 8, 2013

Go to our website for updates on these and other upcoming events at MSillinois.org

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