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00895_wsj_ad_r08v01.indd 1 9/14/09 10:23 AM

september 2009 YOUR GUIDE TO REsEaRch, TREaTmEnT, anD lIvInG wEll

Multiple Sclerosis

2 an independent supplement from mediaplanet in the wall street journal

multiple sclerosis

an independent supplement from mediaplanet in the wall street journal 3

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:

• “MymomhasMS—that’swhyIrode.I’m

willing to help next time around.”

• “I’vebeenheadoftheKansasCitybike

club for three years. For all of our sakes,

let us help you next year.”

• “MysisterhasMS,andmydadisaGold

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

people—some who have been touched

by MS, many who have not, who still care

deeply about putting an end to multiple

sclerosis—andwhoarewaitingandwill-

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

with MS—and the people who care for

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

treat—and ultimately cure—multiple

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 jon.silverman@mediaplanet.com

contributor: national multiple sclerosis society generalmailbox@nmss.org

Design: carrie Reagh carrie.reagh@mediaplanet.com

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 kayvan.salmanpour@mediaplanet.com

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-

temattackshealthytissueinthebody—in

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

experienceoneoffourdiseasecourses—

relapsing-remitting, primary-progressive,

secondary-progressive and progressive-

relapsing—eachofwhichmightbemild,

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-

fectivewaystotreatitand—ultimately—

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? And Why Do We Need to Know?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 NelsonPresident and CEO

The National Multiple Sclerosis Society

one of ms’s peculiarities is that

its symptoms, severity and

prognosis are different in everybody.

any and all registered marks are the property of their

respective owners.

JOINTLY DIRECTED BY SAUD A. SADIQ, MDWE 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 theMS Research Center of New Yorkis to apply innovative and unexplored research to find the cause and cure for MS.

The InternationalMultiple Sclerosis Management Practiceoffers unparalleled care, treatment,and expertise.

MS ad sept 09:Layout 1 9/17/09 4:27 PM Page 1

Publisher’s Note:

2 an independent supplement from mediaplanet in the wall street journal an independent supplement from mediaplanet in the wall street journal 3

multiple sclerosis

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

03314_F02_TYS_WSJ_Ads.indd 1 7/17/09 9:50:58 AM

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

managediseasesymptoms—allofwhich

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

many“silent”attacksearlyon,andthatle-

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-

ing“neuroprotection”—agentsthatcan

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:

• Thefirstoftheoraltherapies,thisone

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.

• Investigatorssuccessfullyusedhuman

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.

• The Society supported investigations

on the potential roles played by sun-

light, vitamin D and Epstein-Barr virus

in triggering MS.

• Sexhormones,whichcanregulatethe

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.

• Neurologists at the University of Ala-

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

“incurable.”

Research in Progress And intriguing leads on the Horizon

4 an independent supplement from mediaplanet in the wall street journal

multiple sclerosis

an independent supplement from mediaplanet in the wall street journal 5

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

HalfPage-FastForwardAd_Final_v3.indd 1 9/15/09 3:47 PM

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

aboutMSthaneverbefore—butthegap

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

withEMDSerono/MerckKGaAtoacceler-

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-

tom.Wherever someone fits on the“life

with MS” spectrum, there are specially tar-

geted Society programs.

The following are just some of the re-

sources available:

• Online classes on medical decision-

making, financial planning, employ-

ment strategies and intimacy.

• MSNavigators™whohelppeoplefind

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.

• Guides and manuals to improve the

success of private disability insurance

claims; they’re customized for people

with MS, health-care professionals and

disability insurance professionals.

• Abundant information from chapters

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

MyBrainGames, the first online games

designed specifically for people with MS.

MyBrainGamesisavailablefreeatMyMS-

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:

• FormingateamandparticipatinginWalk

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

andthecompaniesfind“team-building”

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.

• Volunteering special talents or skills to

help the Society move forward with its

goal to end MS

• Donatingfunds,fundraisinginstruments

or services to support Society-led re-

search and program initiatives

• Sponsoring Society programs, services

and events

• BecominganMSadvocatetohelpshape

the public policies and programs that af-

fect people living with multiple sclerosis

Fast Forwardmore treatments, Faster

Moving Forward After An ms Diagnosis

Get Involved And Help move us to a World Free of ms www.NationalMSSociety.org

4 an independent supplement from mediaplanet in the wall street journal an independent supplement from mediaplanet in the wall street journal 5

multiple sclerosis

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

moredetails,clickonthe“chronicillness”

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—Onceyou

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—The founda-

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—Whilemostpeople

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—Make a detailed listing with ac-

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—Your invest-

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—Everyadultneedstosign

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—The best mechanism to pro-

tect you during the advance of your MS is

afundedrevocablelivingtrust.You’llneed

to hire an estate planner to execute this.

Give back—supportcharitiesthathelp

youandotherswithMS—Charitablegift

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—Financial and related

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 For those living with ms

Panel of Experts

BY: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.

“Thelasttwodecadeshaveseenremarkableprogressintreatments

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

cause,itisdifficulttoenvisionacure.”Headds:“Patientsshouldfindthe

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 ResearchCenterofNewYork

SAllYjEWEll,rNMSCNDirectorofBETAPlUS™

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.

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