SUMMER 2013
GREATER ILLINOIS CHAPTER
MS CONNECTION NEWSLETTER
GETTING
to KNOW
Justine Fedak
2013 WOMEN ON THE MOVE HONOREE
JUSTINE TALKS ABOUT MARKETING, MS,
CHICAGO & HER EXTENSIVE EYEGLASS COLLECTION
INSIDE 8
THIS
ISSUE
10 NEW COLLEGE
SCHOLARSHIPS
AWARDED
See story
on page 2
10
14
15
PROGRESS ON
MS THERAPIES
ILLINOIS MS
TASK FORCE IN
THE MAKING
IT’S ALL
ABOUT THE
CONNECTIONS
2
NATIONAL MULTIPLE
SCLEROSIS SOCIETY
Greater 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.
MS CONNECTION: SUMMER 2013
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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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.
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.
Continued on page 4
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...
4
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
MS CONNECTION: SUMMER 2013
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 twoway 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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NATIONALMSSOCIETY.ORG | 1-800-344-4867
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
presented by:
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
Honoring Justine Fedak, BMO Financial Group
MONDAY, AUGUST 19, 2013
2O13
Honorary Chair:
Cécilia Rodhe
RITZ-CARLTON CHICAGO | 160 E. PEARSON ST.
Purchase tickets online: MSluncheon.org
Proceeds benefit
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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
Top Scholar, Gail Malecki
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
MS CONNECTION: SUMMER 2013
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 Hills
n Alaina
Beaird, of Springfield
n Isabella
n Briana
Furlan, of Chicago
Jarnagin, of Chicago
n Josephine
Jose, of Waukegan
n Anisha
Kimble, of Chicago
n Marcin
Krzysiak, of Oak Lawn
n Alexandra
n Kyle
Morgan, of Barrington
Neese, of Naperville
n 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 201415 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
NATIONALMSSOCIETY.ORG | 1-800-344-4867
TO ALL OUR BIKE MS SPONSORS AND
PARTICIPANTS WE WOULD LIKE TO SAY
THANK YOU FOR OUR BIGGEST YEAR YET
2013
SAVE THE DATE FOR BIKE MS 2014 - JUNE 21 & 22
presented by
BIKEMSILLINOIS.ORG
THANK YOU TO ALL OUR SPONSORS
& PARTICIPANTS OF WALK MS 2013
®
2013
presented by:
SAVE THE DATE FOR OUR PEORIA & URBANA WALKS
SUNDAY, SEPTEMBER 8, 2013
WALKMSILLINOIS.ORG
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MS CONNECTION: SUMMER 2013
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.
ADVOCACY
BE YOUR OWN
BEST ADVOCATE
BY 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.
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.
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.
SELF-ADVOCACY DOESN’T
ALWAYS COME NATURALLY.
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.
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
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-packetsfor-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
9
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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MS CONNECTION: SUMMER 2013
RESEARCH
PROGRESS ON MS
THERAPIES
BY 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 diseasemodifying 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.mscoalition.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.
NATIONALMSSOCIETY.ORG | 1-800-344-4867
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 relapsingremitting 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 CHOICES
When 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
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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.
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MS CONNECTION: SUMMER 2013
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 cognitive 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 BLIP
My 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 . . .” BLIP
I 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?
And I was grateful: more common than normal,
strange but shared. n
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.
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.
Imagine two strands of yarn. One is the hours
ticking by, time itself, and at 1:00 I had my appointment. 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 BLIP
At 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 stopping, 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 pedal, 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 “normal,” the physician’s assistant paused a moment.
“It’s—common,” she said, her voice measured
and lifting.
WHAT THE SYMPTOMS MEAN
Unusual symptoms should be reported to
your doctor. They may signify MS-related disease activity that your doctor may
wish to treat, or they may be unrelated to
your MS. For example, changes in cognition 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/neuropsychologist 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
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MS CONNECTION: SUMMER 2013
ADVOCACY
ILLINOIS MS TASK FORCE IN THE MAKING
The 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 ACTIVIST
Do 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 [email protected] or 312-421-4500. n
15
NATIONALMSSOCIETY.ORG | 1-800-344-4867
GETTING INVOLVED
“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.”
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.
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.
IT’S ALL ABOUT
THE CONNECTIONS
“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.
“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.
PLEASE JOIN US FOR
7 TH ANNUAL REGIONAL
2013 RESEARCH UPDATE | FREE EVENT
Saturday, August 24, 2013
presented by
Registration & Breakfast: 9:00 am
Program Agenda: 9:30 am - 1:00 pm
Par-A-Dice Hotel | East Peoria, Illinois
To register, call 1.800.344.4867 or visit MSillinois.org
525 West Monroe St. • Suite 900
Chicago IL 60661
Mailing Label Changes
Please check the appropriate box below, correct
the label then return to National MS Society,
Greater Illinois Chapter
q Name change or misspelled
q Address change
q Remove from mailing list
q Received more than one copy
q 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 CORNER
nVolunteering
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)
[email protected]
nOctober
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.
nStay
connected with other volunteers and ways to volunteer
- Join the Volunteer Group on Facebook at facebook.com/
groups/MSGreaterILVolunteers.
SAVE the DATE
COHN 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