Wall Street Journal Special Report on MS - Bioness · ever Bike MS event, one of the Society’s...
Transcript of Wall Street Journal Special Report on MS - Bioness · ever Bike MS event, one of the Society’s...
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SEPTEMBER 2009 YOUR GUIDE TO RESEARCH, TREATMENT, AND LIVING WELL
Multiple Sclerosis
2Ê ANÊINDEPENDENTÊSUPPLEMENTÊFROMÊMEDIAPLANETÊINÊTHEÊWALLÊSTREETÊJOURNAL
MULTIPLEÊSCLEROSIS
Ê
The year was 1985. Sometime
around Memorial Day I was pro-
moted to executive director of the
Mid America Chapter, based in the Kansas
City area. I arrived in late June, just in time
to begin plans for the chapter’s second-
ever Bike MS event, one of the Society’s
largest athletic fundraising endeavors,
scheduled just 10 weeks away in early
September, which to a novice seemed like
a reasonable amount of time to finalize
the route, get a radio sponsor, print and
distribute brochures, and plan the other
complicated logistics that make this one
of the Society’s most successful events.
We had a small committee of four dedi-
cated hard-core cyclists and one board
member. I had never ridden a bike more
than five miles then. Let’s just say that it
was a difficult weekend.
Early September in Missouri can be
very hot and humid, and it was especially
so that year. This was before the days of
cyclometers so we thought the cyclists
wouldn’t really notice that the route was
closer to 170 than 150 miles. We were
wrong about that. My committee had
assured me that experienced cyclists
wouldn’t mind biking an extra four miles
to and from dinner at the end of the first
day. We were wrong about that. And the
98-degree heat resulted in my assisting a
parade of cyclists who were experiencing
heat exhaustion and dehydration.
The next day things continued down-
hill. The cyclists were up and ready to ride
well before we had set out breakfast. The
lunches for that day had been inadver-
tently left at the overnight stop. Therefore,
the first cyclists to arrive at the dinner buf-
fet consumed 300 people’s food in about
an hour. And just to top things off, a 12-
foot high rental truck discovered that it
couldn’t pass under an 11-foot-6-inch
high viaduct.
When the time came to read the rider
evaluation forms, I was dreading the ex-
perience, but I found among the just com-
plaints, a community of people eager to
move us closer to a world free of multiple
sclerosis if we gave them the chance:
willing to help next time around.”
club for three years. For all of our sakes,
let us help you next year.”
Wing motorcyclist. Have you thought
about recruiting motorcyclists to serve
as bike escorts? Here’s his name and
club contact.”
Lesson learned: There are hundreds,
thousands, even tens of thousands of
by MS, many who have not, who still care
deeply about putting an end to multiple
-
ing to help.
A lot has changed in the years since
my first bike ride in 1985. The National MS
Society has become a model organization
for special events, including Bike MS, Walk
MS and the Challenge Walk. In fact, other
organizations often look to us for guid-
ance to implement their own events.
What makes our events and our organi-
zation as a whole so strong and vital is that
the National Multiple Sclerosis Society is
a collective of passionate individuals who
want to do something about MS now.
Every hour someone new receives a
diagnosis of multiple sclerosis. Through
our national office and 50-state network
of chapters, the Society addresses the
challenges of each person whose life is af-
fected by MS. We fund research, advocate
for change, and provide programs and
services that enhance the lives of people
them. In 2008 alone, the Society spent
over $45 million to support 440 research
projects worldwide and $148 million on
service programs for more than one mil-
lion people.
Sylvia Lawry founded the Society in
1946 in hopes of finding a cure for her
brother Bernard’s MS. While neither lived
to see that dream fulfilled, their vision is
very much alive: people, governments and
employers everywhere, moving together
toward a world free of MS. Ms. Lawry was
passionate about collaborations, and
helped to found the MS International Fed-
eration, which today consists of 43 sister
Societies worldwide.
As the Society’s current President and
CEO, I continue this tradition by building
collaboration into all aspects of the So-
ciety’s operations. For example, the Soci-
ety’s Promise: 2010 research initiative has
united researchers and institutions world-
wide in a quest to better understand and
sclerosis.
Half a million active volunteers now
provide invaluable talents and resources
to help the Society fulfill our mission. They
are the lifeblood of the organization. They
are critical to the success of our Walk MS
and Bike MS events that occur in hun-
dreds of cities each year nationwide. They
are critical to the day- to-day operations
of the Society and they are critical in the
advocacy efforts that enhance the lives of
people with MS and show policymakers
why improving conditions for people with
MS makes sense for the entire country.
I invite you to get involved with the Na-
tional MS Society and join the MS move-
ment. Start by reading this special section,
where you’ll learn just what MS is and why
you should care about it. Discover the lat-
est treatments available and the exciting
research underway to end MS. And, if you
or someone close to you has MS, explore
what programs and strategies are avail-
able to help you move forward with your
lives.
Then talk to us about how you can get
involved to move us closer to a world free
of multiple sclerosis by participating in
Walk MS or Bike MS or by sharing your
special talents or skills or more. Visit www.
nationalMSsociety.org or call 1-800-344-
4867 for more information.
Thank you.
Joyce Nelson
CONTENTS
2 Welecome
2 What is MS?
3 Treating MS
3 Symptom Management
3 Research in Progress
4 Fast Forward
4 Moving Forward
4 Get Involved
5 Financial Planning
5 Panel of Experts
MULTIPLE SCLEROSIS
Publisher: Jon Silverman
Contributor:
National Multiple Sclerosis Society
Design: Carrie Reagh
Printer: Dow Jones
Photos: © 2009 National MS Society
All rights reserved.
For more information about supplements
in the daily press, please contact:
Kayvan Salmanpour, 1 646 922 1400
This section was written by Mediaplanet
and did not involve The Wall Street Journal
or Editorial Departments.
www.mediaplanet.com
Multiple sclerosis (MS) is a disease
of the central nervous system.
While the cause isn’t yet known,
it’s believed to be an autoimmune disease,
which means that in MS the immune sys-
this case, the myelin that surrounds and
protects the nerves. The damaged myelin
forms the scar tissue (sclerosis) that gives
the disease its name. When any part of the
myelin sheath or nerve fiber is damaged
or destroyed, nerve impulses traveling to
and from the brain and spinal cord are
distorted or interrupted, producing the
variety of symptoms that can occur. Most
commonly, these include fatigue, loss of
mobility, bladder and bowel dysfunction,
vision problems, dizziness and vertigo,
sexual dysfunction, numbness or pain,
cognitive changes and depression. Over
the course of the disease, some symp-
toms will come and go, while others may
be more lasting.
One of MS’s peculiarities is that its symp-
toms, severity and prognosis are different
in everybody. People with MS typically
relapsing-remitting, primary-progressive,
secondary-progressive and progressive-
moderate or severe. The majority of peo-
ple with MS do remain ambulatory.
It is estimated that there are over two
million people worldwide who have been
diagnosed with MS. While most people are
diagnosed between the ages of 20 and
50, MS can appear in young children and
teens as well as much older adults. More-
over, two to four times as many women as
men are diagnosed with MS.
Arriving at a diagnosis of MS can be dif-
ficult and time-consuming because there
is no single symptom, physical finding or
laboratory test that can, by itself, deter-
mine if a person has this disease. Doctors
study the person’s medical history, per-
form a neurologic exam and order various
tests, such as MRIs or blood tests that can
help rule out other conditions that cause
MS-like symptoms. It is generally accepted
that, in order to make a confirmed diagno-
sis of MS, the physician must find evidence
of damage in at least two separate areas of
the central nervous system; find evidence
that the instances of damage occurred at
least a month apart; and rule out all other
possible diagnoses.
While MS is neither contagious nor
directly inherited, epidemiologists have
identified factors in the distribution of
MS around the world that may eventually
help determine what causes the disease.
These factors include gender, genetics,
age, geography and ethnic background.
A great deal of research is under way to
explore these factors.
Understanding what causes MS will be
an important step toward finding more ef-
cure it, or even prevent it from occurring
in the first place.
WelcomeA very successful pop-psychology book out a few years
ago was called All I Really Need To Know I Learned In Kin-
dergarten. My version of that book would be, All I Really
Need To Know About The National Ms Society I Learned On
My First Bike Ms Ride.
Dear Reader,
I can’t remember a time when mul-
tiple sclerosis was not a part of my life. My
mother, Amy Zeisler, has lived with the chal-
lenges of MS for over 25 years. She struggles
with her mobility, dexterity, energy, and to
keep up her spirits every day. Through the
years, If we learned of a product, therapy,
or strategy that might help MS, she’s tried it,
often to no avail.
It is because of my mom’s struggle to keep
moving, and her dedication to stay strong
that I have developed and championed this
supplement because I know that there are
already hundreds of thousands of people
just like my mom needing to be heard.
MS is an equal ”opportunity” disease, 25
years ago it struck my mother, but tomor-
row it could strike you, me or anyone we
love. Mediaplanet gives me the opportunity
to produce reports that impact millions
each time we publish, and I am simply over-
joyed at the efforts the National MS Society
has lent to this project, as well as the pas-
sion shown by our sponsors.
When you read this report I hope it will
help and encourage all those who are di-
rectly affected by MS and inspire all readers
to join the movement to create a world free
of multiple sclerosis.
Best Regards,
Jon Silverman
#1 Fan of Mom
What Is MS? AndÊWhyÊDoÊWeÊNeedÊtoÊKnow?Stumbling, sudden blindness, unexpected fatigue, numbness, pain.... Every hour, every
day, symptoms such as these lead doctors across the country to make a diagnosis of
multiple sclerosis.
Joyce Nelson
President and CEO
The National Multiple Sclerosis Society
OneÊofÊMSÕsÊÊ
peculiaritiesÊisÊthatÊ
itsÊsymptoms,ÊÊ
severityÊandÊÊ
prognosisÊareÊÊ
differentÊinÊÊ
everybody.
Any and all registered marks
are the property of their
respective owners.
JOINTLY DIRECTED BY SAUD A. SADIQ, MD
WE PROVIDE THE HIGHEST QUALITY, MOST COMPREHENSIVE AND EFFECTIVE CARE AND RESEARCH
FOR PEOPLE WITH MS.
Please visit www.msrcny.org and www.imsmp.org for more information,
or to register for the annual patient symposium,
MS 2009: Vision for the Next Decade, on Sunday, November 15.
To make a tax deductible donation to multiple sclerosis research, please visit www.msrcny.org or call 646-557-3864.
The mission of the
MS Research Center of New York
is to apply innovative and unexplored
research to find the cause and cure for MS.
The International
Multiple Sclerosis Management Practice
offers unparalleled care, treatment,
and expertise.
Publisher’s Note:
Ê ANÊINDEPENDENTÊSUPPLEMENTÊFROMÊMEDIAPLANETÊINÊTHEÊWALLÊSTREETÊJOURNALÊ 3
MULTIPLEÊSCLEROSIS
One mission : MS remission
Our mission to stop a disease like multiple sclerosis requires not just a single-minded
focus—but one that’s as relentless as the disease itself. That’s why at Biogen Idec and
Elan, we view fighting MS as not only our job at work, but as our mission in life.
BIOGEN IDEC and the BIOGEN IDEC logo are registered trademarks of Biogen Idec. The ELAN logo is a registered trademark of Elan Corporation, plc.
© 2009 Biogen Idec 08/09 0-3508-01
Committed to a cure
Good news is plentiful in the world
of MS treatment, and each year
brings more progress and promise.
Although there is still no cure, effec-
tive therapies are available to modify the
disease course, treat exacerbations (also
called attacks, relapses or flare-ups) and
serve to enhance the quality of life for
people living with MS.
Though not a cure, clinical trials and
evidence over the last decade and a half
provide convincing evidence that the six
FDA-approved disease-modifying medica-
tions reduce disease activity and disease
progression for a significant percentage
of people with MS. The therapies appear
to be especially beneficial if started early
in the course of the disease. MRI studies
have confirmed that most people have
-
sions and brain atrophy can develop even
before people experience any symptoms
or attacks.
These drugs, which are all administered
by injection or infusion, have been ap-
proved by the FDA for use in reducing the
activity of the disease:
Avonex (interferon beta-1a)
Betaseron (interferon beta-1b)
(now also available as Extavia)
Copaxone (glatiramer acetate)
Novantrone (mitoxantrone)
(a therapy approved to treat
worsening MS)
Rebif (interferon beta-1a)
Tysabri (natalizumab)
People, however, need to work closely
with their physicians to monitor any po-
tential side effects or adverse reactions to
these drugs.
Not everyone responds the same to
these medications, so having options to
choose among is important. One option
expected in the near future is oral disease-
modifying medication, which may be of-
fered alongside or as a replacement for
the current medications that are admin-
istered by injection or infusion. While a
small percentage of patients do well with
no therapy, no one can predict for whom
this will be true.
MS can also cause a wide variety
of symptoms, including fatigue,
pain, cognitive issues like mem-
ory loss or trouble multitasking, weak-
ness, blurred vision, numbness, prickly or
tingling sensations, heat sensitivity and
dizziness. These are highly variable from
person to person and from time to time
in the same individual. While symptoms
can range from mild to severe, most can
be successfully managed with medica-
tions, exercise, proper diet, coping strate-
gies, self-help techniques, counseling, and
support from family and friends. Reha-
bilitation with a physical or occupational
therapist, speech/language pathologist or
cognitive remediation specialist, among
others, may also be indicated.
In addition to physical symptoms, MS
may have profound emotional conse-
quences. It can be difficult to adjust to
having a disorder that is unpredictable,
has a fluctuating course and carries a risk
of progressing over time to some level of
physical disability. In addition, demyelin-
ation and damage to nerve fibers in the
brain can result in emotional changes.
Some of the medications used in MS, such
as corticosteroids, can also affect the emo-
tions, leading to, among other responses,
stress, anxiety, mood swings and depres-
sion.
Treating MS
Symptom
Management
It’s a fascinating and hopeful time in
MS research, with scientists looking
far and wide to slow the disease’s
progress, eradicate it and even restore
function to people who already have felt
MS’s effects. Many advances, on several
fronts, have been made in treating and
understanding MS. Each advance interacts
with the others, adding greater depth and
meaning to each new discovery.
Over the last decade, our knowledge
about how the immune system works has
grown at an amazing rate. Such work is ex-
pected to yield a variety of new potential
therapies. Tools such as MRI are proving
invaluable in monitoring disease activity,
making it possible to visualize and follow
the development of MS lesions in the brain
and spinal cord. This helps tremendously
in assessing new therapies and can speed
the process of evaluating new treatments.
Now and in the coming decades, re-
searchers will be working on improving
control of inflammation and the immune
response; repairing myelin; and develop-
protect myelin from damage.
The National MS Society has responded
to scientists’ expanding knowledge of MS
by creating ever-wider networks of coop-
eration. The most dramatic example is the
Nervous System Repair & Protection Initia-
tive, a five-year grant funded by the Soci-
ety’s Promise: 2010 campaign. The proj-
ect is so big that it has not one but four
principal investigators and encompasses
institutions, researchers and collaborators
based at universities in 11 time zones in
North America and Europe.
The Society also supports hundreds of
other projects. Here are just a few recent
findings and possibilities:
designed to improve nerve conduction,
is presently before the FDA for review.
Two more oral therapies, both disease-
modifying drugs, are expected to go to
the FDA soon.
nervous system progenitor cells to my-
elinate brain and spinal cord nerve tis-
sue in mice.
Thirteen new genes that predispose hu-
mans to MS were identified in large-scale
genetic screening, and a new genetics
project was launched to catalog and
validate the genes that affect MS sus-
ceptibility. Finding these genes should
help scientists understand what causes
MS and may lead to new therapies.
on the potential roles played by sun-
light, vitamin D and Epstein-Barr virus
in triggering MS.
immune system in people with MS,
are another area of study, with a large
trial under way to test whether the
hormone estriol can decrease disease
activity.
-
bama at Birmingham are studying
whether a type of physical therapy that
has benefited people with stroke, trau-
matic brain injury and cerebral palsy
could help those with MS too.
MS research is ongoing on literally doz-
ens of fronts. The Society’s Promise: 2010
campaign, which includes four major
components, has united the MS commu-
nity behind some very big but achievable
targets. The Nervous System Repair &
Protection Initiative reached a milestone
two years ahead of schedule by launch-
ing a small clinical trial of new medica-
tions. Six Pediatric Centers of Excellence
are providing services and care to people
with MS under 18 and their families. The
Sonya Slifka Longitudinal MS Study is re-
placing myths with facts about the social
and financial consequences of MS. And
the international team involved in the MS
Lesion Project is exploring a collection of
tissue samples from living people at all
stages of MS, making it possible to see the
disease as never before.
A growing number of therapies are now
available that effectively treat the underly-
ing course of MS or treat MS symptoms.
In addition, there are a number of treat-
ments under investigation, some of them
oral rather than injected or infused, that
may curtail attacks or improve function of
demyelinated nerve fibers. Over a dozen
clinical studies testing potential therapies
are in late stage trials moving through
the MS pipeline, and additional new
treatments, including therapies aimed at
repairing MS damage, are being devised
and tested in animal models.
At present there is no cure for multiple
sclerosis, but to the countless scientists,
physicians and researchers who are bring-
ing us closer to understanding MS, it is not
Research in Progress AndÊIntriguingÊLeadsÊonÊtheÊHorizon
4Ê ANÊINDEPENDENTÊSUPPLEMENTÊFROMÊMEDIAPLANETÊINÊTHEÊWALLÊSTREETÊJOURNAL
MULTIPLEÊSCLEROSIS
Ê
EMD Serono, Inc. is proud to work with Fast Forward, LLC to close
the gap between laboratory discoveries and life changing therapies
For more information about Fast Forward and funded research projects visit: Fastforward.org
Decades of basic and applied re-
search into MS and the funda-
mental workings of the immune
and nervous systems have built a critical
platform of knowledge that is serving as a
springboard for progress. We know more
in translating that laboratory knowledge
into treatments gets wider every day.
Fast Forward is a nonprofit organization
established by the National Multiple Scle-
rosis Society to bridge that gap between
discovery research and drug develop-
ment. It does this by funding emerging
biotechnology companies engaged in MS
research; encouraging the repurposing of
existing or off-patent drugs to expedite
therapy development; and facilitating aca-
demic and industry communication.
Since its creation in Fall 2007, Fast For-
ward has moved aggressively to establish
its footprint in MS space. It announced its
first sponsored research agreement in De-
cember 2008, awarding $1 million to the
young biotech firm Apitope Technology
to conduct a proof-of-principle clinical
trial on a promising new vaccine designed
to target and redirect immune response.
This award was followed with another
partnership in May 2009 with Provid
Pharmaceuticals to fund development of
a compound intended to redirect the ab-
normal immune response. In August 2009,
Fast Forward established a collaborative
relationship with Amplimmune, Inc. to
support the development of a novel and
proprietary biological molecule designed
to target and prevent abnormal immune
responses associated with MS.
At a time when economic challenges
abound, Fast Forward has also entered
into a $19 million strategic partnership
-
ate innovation and commercial develop-
ment of MS therapies through a group of
soon-to-be-determined, mutually agreed
upon seed-to-early-stage projects. This
strategy provides Fast Forward with an ad-
ditional resource stream for funding new
biotech projects. For more information
visit fastforward.org.
Once someone receives an MS di-
agnosis, managing the disease
becomes an ongoing process,
beginning with the very first symptoms
and continuing throughout the disease
course. Knowing what to look for, where
to find it, and how to work effectively with
doctors and other health professionals is
essential to maintaining a healthy, happy
quality of life.
The National Multiple Sclerosis Society
offers comprehensive information and
programs, typically provided through
its 50-state network of chapters, that are
designed to help everyone with MS, from
the newly diagnosed, full of questions
on every aspect of their new reality, to
the more seasoned person with MS who
might be checking out a new therapy or
new tools to manage a troubling symp-
with MS” spectrum, there are specially tar-
geted Society programs.
The following are just some of the re-
sources available:
making, financial planning, employ-
ment strategies and intimacy.
pharmaceutical company patient-assis-
tance programs or other financial assis-
tance programs, including the Society’s
own program, that help manage the
costs of MS drugs and other daily living
expenses.
success of private disability insurance
claims; they’re customized for people
with MS, health-care professionals and
disability insurance professionals.
and the Society’s Web site about pre-
ventive health care and the role of
exercise, diet, stress management and
other complementary and alternative
strategies in optimizing general health.
The 50-state network of Society chap-
ters offers a broad scope of services
and programs to people with MS, their
families, and their health-care provid-
ers, ranging from the most current and
comprehensive information on MS, to
networking with community resources,
to self-help and peer support programs,
to educational teleconferences, exercise
and wellness programs, to social activi-
ties for the whole family. They also in-
clude employment counseling, respite
services, durable equipment loans and
advocacy. To learn more about local
programs either call 1-800-344-4867
or visit the Society’s Web site at www.
nationalMSsociety.org.
Assistive Devices and Adaptive
Technology
An assistive device is a tool or imple-
ment that makes a particular function
easier or possible to perform. It may be
as simple as an electric toothbrush, or as
elaborate as an environmental control
system that can be operated with a mouth
switch. Braces, canes or walkers can help
those who have trouble walking. Wheel-
chairs and electric scooters can provide
mobility for those who need additional
assistance. Transfer boards and lifts can be
used to help people with MS get in and
out of a bed, tub, automobile or wheel-
chair.
About half of people living with MS de-
velop cognitive challenges, often in the
areas of processing speed, working mem-
ory and complex attention. These chal-
lenges can involve difficulty in learning
and remembering information; focusing,
maintaining and shifting attention; and
organizing, planning and problem-solving.
To address this, the MS Technology Col-
laborative, an alliance of Bayer HealthCare
Pharmaceuticals, Microsoft and the Na-
tional Multiple Sclerosis Society, recently
launched a way for people living with
MS to exercise their brain power with
designed specifically for people with MS.
-
MyWay.com, an online portal that features
information and resources on technology.
Functional Electrical Stimulation (FES)
FES is another technological advance
being used with increased frequency to
address MS symptoms. The technique
uses low levels of electrical current to
stimulate nerves in extremities that have
been impaired due to spinal cord injury,
head injury, stroke or other neurological
disorders. FES is not a cure but may restore
or improve function in nerves that control
specific muscles or muscle groups. Some
people with MS have found FES and FES
products helpful in alleviating foot drop, a
condition caused by weakness or paralysis
of the muscles involved in lifting the front
part of the foot.
There are many easy, fun and mutually
beneficial ways individuals and com-
panies can get involved that will help
improve the lives of people with MS and
move us closer to a world free of multiple
sclerosis. These include:
MS, Bike MS or the Challenge Walk which
together raise over 60% of the funds the
Society uses to support its research and
program services. Every year hundreds of
companies bring teams to Society events
because employees say that a company’s
charitable activities are important to them
an important skill among business lead-
ers. To learn more about team-building
through participation in Society special
events, visit BikeMS.org or WalkMS.org.
help the Society move forward with its
goal to end MS
or services to support Society-led re-
search and program initiatives
and events
the public policies and programs that af-
fect people living with multiple sclerosis
Fast ForwardMoreÊTreatments,ÊFaster
Moving Forward AfterÊAnÊMSÊDiagnosis
Get Involved AndÊHelpÊMoveÊUsÊtoÊaÊWorldÊFreeÊofÊMSÊ www.NationalMSSociety.org
Ê ANÊINDEPENDENTÊSUPPLEMENTÊFROMÊMEDIAPLANETÊINÊTHEÊWALLÊSTREETÊJOURNALÊ 5
MULTIPLEÊSCLEROSIS
If you or someone you love has been
diagnosed with a chronic illness such
as multiple sclerosis this news will pro-
vide a new lifelong lens through which
you will now view the world and which
will affect all future plans, including fi-
nancial planning to protect you and your
family. The first step in financial planning
is to assess your current health status
and the likely course of your disease with
your healthcare provider. Next define your
goals, present your advisers with the facts,
create a plan, then implement and moni-
tor that plan. See Estate Planning for Peo-
ple with a Chronic Condition or Disability
on www.demoshealth.com.
The following is a brief roadmap that
can assist in your financial planning. For
tab on www.laweasy.com.
Define your goals -What do you wish
to accomplish? Every person has a unique
set of goals. Identify and write yours down.
Determine your resources
have determined your goals, you need to
assess the resources you’ll have to meet
those goals. Prepare a balance sheet. List
the sources of cash flow that you have and
projected changes in earnings.
Estimate your needs -
tion of every financial and estate plan is
a budget. For those living with chronic
illness, additional costs typically have to
be estimated. For instance, what do your
therapies and other medical needs cost
and how much of that is covered by insur-
ance or government programs?
Protect yourself
living with MS don’t experience significant
cognitive issues, enough do that the risk
of this should be planned for. Simplify and
consolidate your investment accounts, use
automatic bill paying as frequently as pos-
sible, have duplicate monthly statements
sent to a trusted family member or friend.
Disseminate emergency informa-
tion -
count numbers, locations and contact in-
formation of all key personal, financial and
related information, and give it to several
trusted friends and family members.
Plan your investments -
ment plan must be tailored to your spe-
cific age and situation. For example, if you
are in your 30s, you may need a more ag-
gressive investment plan in order to reach
your financial goals, as you may not be
sure how long you will be able to continue
working.
Customize and sign a durable power
of attorney
a power of attorney, which authorizes a
named person (agent) to handle financial
matters for them. If you have MS you need
to tweak the standard powers to fit your
situation. For instance, to deal with the
possibility of an unexpected attack, con-
sider a power that is effective immediately.
Sign and implement a revocable liv-
ing trust -
tect you during the advance of your MS is
to hire an estate planner to execute this.
Give back
annuities are commonly used to obtain
higher cash payments than could be ob-
tained from a Certificate of Deposit or
money market account. If you or a loved
one is living with MS, the added bonus is
that they will help the organizations help-
ing you. Consider speaking to your invest-
ment manager and estate planner about
using charitable remainder trusts.
Conclusion
planning is important for everyone, but if
you or a loved one is living with MS, it is
even more vital that you take steps to plan
and protect yourself and all those who de-
pend upon you.
Financial Planning ForÊThoseÊLivingÊwithÊMS
Panel of Experts
MARTIN M. SHENKMAN, CPA, MBA, PFS, JD
One of the most significant impairments we see in working with hun-
dreds of people with MS every year is foot drop. Foot drop is partial leg
paralysis that prevents the foot from lifting, causing instability and mak-
ing walking difficult. Foot drop often occurs in persons who have condi-
tions such as multiple sclerosis, stroke, traumatic brain injury, incomplete
spinal cord injury and others.
Bioness has developed an advanced therapeutic, non-pharmaceutical
option for foot drop. The NESS L300 sends low level stimulation to the
muscles and nerves that lift the foot and is the only adaptive, wireless
neurostimulation device for foot drop offered in acute, inpatient, and
outpatient rehabilitation centers as well as for home use.
People with MS who suffer from foot drop and whose muscles and
nerves respond to stimulation may be good candidates. Benefits may
include an improvement in gait (a manner of walking) and greater range
of motion.
for most patients with MS. Within a year or two, some oral drugs will be
on the market that may be an alternative to injected or infused medica-
tions. In five years, it’s likely that significant advances will be made in
reversing neurological dysfunction. Another exciting area may lie in de-
veloping biomarkers in blood or spinal fluid that will tell if the disease is
under control or not; these will enable physicians and patients to make
earlier and better decisions about treatment. Obviously, while all this
is going on, labs are investigating the causes of MS. Until we know the
best doctor they can, then trust their doctor. The patients who do poorly
tend to be the ones who make up their minds about treatment before
they came to see me.”
Patient support services are essential to people living with MS. They
provide the support to help them better understand the disease and the
resources that can help them manage it. It’s important for people who
are diagnosed with MS to try to stay positive and learn about the disease,
the MS therapies and services available.
Support may include injection training, contact with MS-trained
nurses, and educational programs. In today’s challenging economic cli-
mate, companies have support programs that may help remove cost as
a barrier to treatment. Programs may offer access to specialists who work
with health insurers to assist qualified patients in managing coverage or
co-pay programs to help make MS therapy more affordable.
It is important that healthcare professionals work together, across all
healthcare disciplines, to help provide people with MS the support and
tools they may need to maintain a long-term commitment to therapy
and their overall health.
STEPHEN KANTER Doctor of Physical Therapy, PT, ATC Supervisor of Rehabilitation International Multiple Sclerosis Management Practice
SAUD A. SADIQ, MDDirectorSenior Research ScientistMultiple Sclerosis Research
D
The National MS Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience and expert opinion, but do not represent therapeutic recommendation or
prescription. For specific information and advice, consult your personal physician. Any reference to a commercial or noncommercial product, process, service or company is not an endorsement or recommendation by the National MS
Society. The National MS Society does not endorse or recommend products, services or manufacturers. The National MS Society assumes no liability whatsoever for the use or contents of any product or service mentioned.
5
of people with MS said they experienced
some limitation to their mobility77%
Mobility impairment is a major
concern for patients with MS.1-3
The 2008 Multiple Sclerosis Association of America (MSAA) poll, which included more than
2,400 persons with MS, revealed that4*†:
References: 1. Paltamaa J, Sarasoja T, Leskinen E, Wikström J, Mälkiä E. Measures of physical functioning predict self-reported performance in self-care, mobility, and domestic life in ambulatory persons with multiple sclerosis. Arch Phys Med Rehabil. 2007;88:1649-1657. 2. Martin CL, Phillips BA, Kilpatrick TJ, et al. Gait and balance impairment in early multiple sclerosis in the absence of clinical disability. Mult Scler. 2006;12:620-628. 3. Provance PG. Physical therapy in multiple sclerosis rehabilitation [clinical bulletin]. New York, NY: National Multiple Sclerosis Society; 2004. 4. A Patient Survey of Mobility and Exercise Issues Among MS Patients [poll]. Poll commissioned by: Acorda Therapeutics, Inc. and the Multiple Sclerosis Association of America. February 21, 2008. 5. Heesen C, Böhm J, Reich C, Kasper J, Goebel M, Gold SM. Patient perception of bodily functions in multiple sclerosis: gait and visual function are the most valuable [first published May 27, 2008]. Mult Scler. 2008;00:1-4. doi: 10.1177/1352458508088916.
* Poll commissioned by: Acorda Therapeutics, Inc. and the Multiple Sclerosis Association of America. February 21, 2008.
† 97.9% of the sample (2,471 people) were aged over 25 years. Patient
breakout: 64% with RRMS; 15% with SPMS; 8% with PPMS; 5% with
PRMS; 8% were listed as “unknown/don’t know/no response/benign.”
Key abbreviations: RRMS, relapsing-remitting multiple sclerosis; SPMS,
secondary-progressive multiple sclerosis; PPMS, primary-progressive
multiple sclerosis; PRMS, progressive-relapsing multiple sclerosis.
In a study of 166 patients with MS of either <5 or >15 years duration, 162 responded to a
questionnaire designed to force rank 13 bodily functions based on severity and relevance to their
experience. Of the 162 useable responses, 82 had MS for <5 years and 80 had MS for >15 years.
The graph below shows the percentage first rank for each of the bodily functions.5
© 2009 Acorda Therapeutics, Inc. All rights reserved. Aug 2009 MB00474
Sponsored by Acorda Therapeutics®
Please visit www.msmobility.org to learn more and register for complimentary tools for your practice.