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What’s NewHow we describe, how we treat, and how we defend against MS is changing all the time. Here is the latest.By Patricia Daily Page 6

InforMSInforMS Winter 2015Volume 31, Issue 4Rocky Mountain Multiple Sclerosis Center

What’s NewHow we describe, how we treat, and how we defend against MS is changing all the time. Here is the latest on MS research.By Patricia Daily Page 6

Dr. John Corboy discusses the latest research on stem cells as a possible treatment for different aspects of MS. 2

ALSO MS Through an Artist’s Eyes . . . . . . . . . . . . . . . . . Page 2

Together we are Stronger . . . . . . . . . . . . . . . . . Page 10

Connecting Dentists with those in Need . . . . .Page 15

Budget Act Protects SSDI Fund . . . . . . . . . . . .Page 17

A Family’s MS Journey . . . . . . . . . . . . . . . . . . . . Page 18

Calendar . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Page 20

2 F InforMS F Rocky Mountain MS Center

8845 Wagner Street Westminster, CO 80031

EditorPatricia Daily, LCSW [email protected]

Design Corey Nikoloric

[email protected]

InforMS is published quarterly by the Rocky Mountain MS Center.

No part of this newsletter may be reproduced in any format without prior written consent from

the publisher. All requests for permission to reprint must be made in writing.

Board of Directors

Officers

Brett Hanselman Chair

Robert Shanahan Vice-Chair

Michael Persichitte Treasurer

Del Arnold Development Chair

Jennifer Mayes Secretary

Members at Large

Jerry Buck

Brad Cillian

Kimberly Eilber

Diane Kathol

Jennifer Nelson

James Tarpey

Casey Tynan

Ex-Officio Members

Gina Berg Chief Executive Officer

Timothy Vollmer, MD Medical Director

RMMSC Mission StatementTo improve the quality of life of

individuals and their families living with MS and related neurological diseases through

care, support, education and research.

ROCKY MOUNTAINMS CENTER— the answers begin here —

In 2009, Sarah Richter opened her eyes and discovered she had triple vision; literally, she saw three of everything. That—along with fatigue, eye pain, vertigo and other symptoms—eventually led to an MS diagnosis.

As an artist, her diagnosis put the wheels of creativity into motion. In 2012, Sarah’s installation titled Infinite Refraction was featured at Hinterland Art Space in Denver. Designed to give viewers a sense of what Sarah saw and felt when she had triple vision, the installation was both stunning and disorienting.

Today, Sarah is a Master of Fine Arts candidate at the University of Denver in the Emergent Digital Practices program, which strives to bring together art, design, media, culture and technology studies. After years of study and honing her skills as an artist, she’s now on the cusp of launching a new MS-inspired installation, Sensory Paradox.

This time the exhibit will be a multi-disciplined, interactive experience with individual elements representing Sarah’s interpretations of common MS symptoms. Sensory Paradox will feature elements inspired by fatigue, vertigo, visual changes and auditory distortions, to name a few.

But perhaps the most unique element of Sensory Paradox will be its location and audience: the installation will be featured at the Fulginiti Pavilion for Ethics and Humanities on the University of Colorado Anschutz Medical Campus—just steps away from Sarah’s MS treatment team at the Rocky Mountain MS Center. The gallery is open to the public, attracting hospital visitors, patients, medical professionals and more.

Sarah’s exhibit will be the fourteenth since the space opened three years ago. This

installation is especially relevant since Sarah receives care at the University of Colorado Hospital. It will provide an opportunity for the medical staff who know her as a patient to meet her as an artist.

“In my experience of living with this condition, I’ve found it to be a fluid and dynamic process,” says Sarah. “Symptoms can change and heal over time, new symptoms can occur, and all of these physical occurrences change the way I perceive and interact in the world.”

caption

MS through an Artist’s Eyes

Sensory Paradox

SENSORY PARADOX An Artist’s Experience with Multiple Sclerosis

SARAH RICHTERSarah’s interpretations of MS symptoms will be illustrated through video, imagery, audio and sculpture.

“MS symptoms and their severity vary greatly from one person to the next, come and go, and are often invisible. It is challenging to imagine what the experience is like for people who live with the disease every day. “

“It’s a fluctuating landscape with effects that are negative, positive and often unexpected,” said Sarah. “These symptoms are painful, and sometimes they’re beautiful and inspiring, too.”

Sensory Paradox opens December 10, and runs through March 3, 2016. The gallery is free and open to the public from 9 a.m. to 5 p.m., Monday through Friday. Patients and visitors to the Anschutz Medical Campus can make the short walk or take advantage of the free campus shuttle service to get to the Fulginiti Pavilion. Sensory Paradox is made possible by a grant from Teva Pharmaceuticals. n

COPC-58439_M3_Sum2015_InforMS_Ad.indd5-11-2015 12:00 PM Vincent Jeffrey / Suke Yawata

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Notes Summer 2015 InforMS Full Page Ad

experience the 3-times-a-week DOse

Visit www.copaxone.com/patientstories to learn more.

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CELEBRATING OVER A YEAR OF COPAXONE® (glatiramer acetate injection) 40 mg1

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COPAXONE® is indicated for the treatment of patients with relapsing forms of multiple sclerosis.

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please see additional important safety information and brief summary of full prescribing information on the following pages.

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reference: 1. COPAXONE® (glatiramer acetate injection) prescribing information. Rev. 1/2014. Teva Neuroscience, Inc.

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important safety information (cont’d)

Some patients report a short-term reaction right after injecting COPAXONE® (glatiramer acetate injection). This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and do not require specific treatment. During the postmarketing period, there have been reports of patients with similar symptoms who received emergency medical care. if symptoms become severe, call the emergency phone number in your area. Call your doctor right away if you develop hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, or severe pain at the injection site. If any of the above occurs, do not give yourself any more injections until your doctor tells you to begin again.

Chest pain may occur either as part of the immediate postinjection reaction or on its own. This pain should only last a few minutes. You may experience more than one such episode, usually beginning at least one month after starting treatment. Tell your doctor if you experience chest pain that lasts for a long time or feels very intense.

A permanent indentation under the skin (lipoatrophy or, rarely, necrosis) at the injection site may occur, due to local destruction of fat tissue. Be sure to follow proper injection technique and inform your doctor of any skin changes.

The most common side effects in studies of COPAXONE® are redness, pain, swelling, itching, or a lump at the site of injection, flushing, rash, shortness of breath, and chest pain. These are not all of the possible side effects of COPAXONE®. For a complete list, ask your doctor or pharmacist. Tell your doctor about any side effects you have while taking COPAXONE®.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

please see brief summary of full prescribing information on the following page.

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Patient Information

COPAXONE (co-PAX-own)(glatiramer acetate injection)for subcutaneous use

Read this Patient Information before you start using COPAXONE and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment.

What is COPAXONE?COPAXONE is prescription medicine used for the treatment of people with relapsing forms of multiple sclerosis (MS).It is not known if COPAXONE is safe and effective in children under 18 years of age.

Who should not use COPAXONE?• DonotuseCOPAXONEifyouareallergictoglatirameracetate,mannitolor

any of the ingredients in COPAXONE. See the end of this leaflet for a com-plete list of the ingredients in COPAXONE.

What should I tell my doctor before using COPAXONE?Before you use COPAXONE, tell your doctor if you:• arepregnantorplantobecomepregnant.ItisnotknownifCOPAXONEwill

harm your unborn baby.• arebreastfeedingorplantobreastfeed.ItisnotknownifCOPAXONEpasses

into your breast milk. Talk to your doctor about the best way to feed your baby while using COPAXONE.

Tell your doctor about all the medicines you take,includingprescriptionandover-the-countermedicines,vitamins,andherbalsupplements.COPAXONEmayaffectthewayothermedicineswork,andothermedicinesmayaffect how COPAXONE works.Know the medicines you take. Keep a list of your medicines with you to show your doctor and pharmacist when you get a new medicine.

How should I use COPAXONE?• Fordetailedinstructions,seetheFull Prescribing Information for complete

information on how to use COPAXONE.• YourdoctorwilltellyouhowmuchCOPAXONEtouseandwhentouseit.• COPAXONEisgivenbyinjectionunderyourskin(subcutaneously).• UseCOPAXONEexactlyasyourdoctortellsyoutouseit.• Sinceeverybodytypeisdifferent,talkwithyourdoctorabouttheinjection

areas that are best for you. • You should receive your first dose of COPAXONEwith a doctor or nurse

present. This might be at your doctor’s office or with a visiting home health nursewhowillteachyouhowtogiveyourCOPAXONEinjections.

What are the possible side effects of COPAXONE?COPAXONE may cause serious side effects, including:• Post-Injection Reactions. Serious side effects may happen right after you inject COPAXONE at any time during your course of treatment. Call yourdoctorrightawayifyouhaveanyofthesepost-injectionreactionsymptomsincluding:

• rednesstoyourcheeksorotherpartsofthebody(flushing) • chestpain • fastheartbeat • anxiety • breathingproblemsortightnessinyourthroat • swelling,rash,hives,oritching Ifyouhavesymptomsofapost-injectionreaction,donotgiveyourselfmoreinjectionsuntiladoctortellsyouto.

• Chest Pain.Youcanhavechestpainaspartofapost-injectionreactionorbyitself. This type of chest pain usually lasts a few minutes and can begin around 1 month after you start using COPAXONE. Call your doctor right away if you have chest pain while using COPAXONE.

• Damage to your skin.Damagetothefattytissuejustunderyourskin’ssur-face(lipoatrophy)and,rarely,deathofyourskintissue(necrosis)canhap-penwhenyouuseCOPAXONE.Damagetothefattytissueunderyourskincancausea“dent”attheinjectionsitethatmaynotgoaway.Youcanreduceyour chance of developing these problems by:

• followingyourdoctor’sinstructionsforhowtouseCOPAXONE • choosing a different injection area each time you use COPAXONE.See

Step 4 in the Instructions for Use, “Choose your injection area”. The most common side effects of COPAXONE include:• skinproblemsatyourinjectionsiteincluding: ◦ redness ◦ pain ◦ swelling ◦ itching ◦ lumps • rash• shortnessofbreath• flushing(vasodilation)Tell your doctor if you have any side effect that bothers you or that does not go away.ThesearenotallthepossiblesideeffectsofCOPAXONE.Formoreinformation,ask your doctor or pharmacist.Call yourdoctor formedical advice about side effects.Youmay report sideeffectstoFDAat1-800-FDA-1088.

How should I store COPAXONE?• StoreCOPAXONEintherefrigeratorbetween36°Fto46°F(2°Cto8°C).• WhenyouarenotabletorefrigerateCOPAXONE,youmaystoreitforupto 1monthatroomtemperaturebetween59°Fto86°F(15°Cto30°C).

• ProtectCOPAXONEfromlightorhightemperature.• DonotfreezeCOPAXONEsyringes.Ifasyringefreezes,throwitawayina

sharps disposal container. See Step 13 in the Instructions for Use, “Dis-pose of needles and syringes”.

Keep COPAXONE and all medicines out of the reach of children.

General information about the safe and effective use of COPAXONE.Medicines are sometimes prescribed for purposes other than those listed in a PatientInformationLeaflet.DonotuseCOPAXONEforaconditionforwhichitwasnotprescribed.DonotgiveCOPAXONEtootherpeople,eveniftheyhavethe same symptoms as you have. It may harm them.ThisPatient InformationLeafletsummarizes themost important informationaboutCOPAXONE.Ifyouwouldlikemoreinformation,talkwithyourdoctor.YoucanaskyourpharmacistordoctorforinformationaboutCOPAXONEthatis written for health professionals.Formoreinformation,gotowww.copaxone.comorcall1-800-887-8100.

What are the ingredients in COPAXONE?Active ingredient: glatiramer acetateInactive ingredients: mannitol

Marketedby:TEVANeuroscience,Inc.,OverlandPark,KS66211Distributedby:TEVAPharmaceuticalsUSA,Inc.,NorthWales,PA19454

Product of Israel

This brief summary is based onCOPAXONE FDA-approved patient labeling,revised:January2014.

COP-41059

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is an inflammatory, autoimmune disease of the central nervous system and the havoc it creates for a person who has it is analogous to what might happen if an arsonist were running loose in your neighborhood. When the

arsonist starts a fire, he causes damage, and the more fires he starts, the more damage he does. There are, however, some different strategies that might help minimize this.

The most obvious strategy is to stop the arsonist. In MS, the arsonist is the immune system. The disease modifying therapies used in MS target the immune system in an effort to limit the number of fires it starts and contain the harm these cause.

Another damage-control strategy is to construct buildings that are more resistant to fire—to build your house out of brick rather than straw. That’s essentially what neuroprotective strategies aim to do; make the brain more fireproof, and prevent the damage that leads to neurodegeneration and brain atrophy.

A third strategy is to have a good repair crew that can come in and repair the damage that’s been done. In MS, this might happen by remyelinating the damaged axons, or by enhancing the natural ability of the brain to repair itself.

A fourth strategy would be to develop a really good neighborhood watch program, to keep on top of what’s going on in the area generally, and make the neighborhood as safe and strong as possible. In MS, this involves other strategies that promote general health and brain health, such as diet, sleep, and physical and cognitive exercise.

The previous issue of InforMS explored what we know about progressive MS and how the disease changes over time. This issue of InforMS looks at different strategies that might help manage the damage done by MS, for those with progressive disease and to prevent damage, for those with younger disease.


by Patricia Daily

What’s NewKeeping Up With MS Research

MS

What’s New:Keeping Up With MS Research

continued on page 8

Rocky Mountain MS Center F InforMS F 7

Why Does Everyone’s MS Look Different?

There are four main reasons that MS looks different on each person who has it. How affected someone is by MS will depend, roughly, on how many attacks they are having, how destructive the attacks are, what areas of the central nervous system are damaged, and how successfully someone can recover from an attack.

Types of DamageIt seems logical that people who have

more frequent attacks will have a worse outcome, but it’s not the whole story. We know that an MS attack can damage the brain in different ways and some of these are more destructive than others. Some attacks just damage myelin, but others directly kill neurons or release toxic molecules that just sort of damage everything in the area. Sometimes, MS is much more destructive to neurons. When it is just destroying myelin, it may not create as much impairment. When we measure myelin destruction specifically, there is a pretty low correlation with disability. There is, however, a big

correlation between brain atrophy, caused by neuronal loss, and disability.

Location of LesionsLocation is also important. The

damage caused by MS doesn’t always disrupt communication in the brain because nerve fibers don’t exist in isolation. They work as parts of networks

and in sequence with other pathways. Many lesions occur in areas of the brain that have a large enough network and reserve capacity that we don’t immediately notice a change in them. A lesion occurring in another location, for example, the optic nerve, the brain stem or the spinal cord, is much more likely to be symptomatic because these are more sensitive areas and they don’t have much wiggle room.

Repair CapacityPeople vary in their abilities to

recover from an attack. The degree of recovery is dependent on several things, among them the brain’s reserve capacities. Neuronal reserve is genetically determined and has to do with brain size and neuron count. Different people have bigger brains that simply may be more resilient to injury. Cognitive reserve refers to how efficiently people use their existing brain circuits and to their ability to compensate for injury. Cognitive reserve is strongly influenced by how we use our brains. It is, to some extent, a measure of brain fitness. Another factor that influences recovery is the overall state of someone’s life. MS has to compete for space with all the other things that are happening to someone. Other life stresses and strains, especially competing medical conditions such as diabetes or heart disease can make the disease course in MS more problematic.

Different Disease Types?For a long time, another reason

we thought that people look different was because they have different kinds of MS. Some people have a milder, less aggressive disease course that is referred to as “relapsing-remitting MS,” while others have a different, more aggressive, progressive disease course. Today, the existence of that distinction is hotly debated. One growing school of thought holds that MS is one disease. It looks different because of the different ways it can happen in individuals, and how it unfolds itself over time.

Sometimes, MS is much more destructive to neurons. When it is just destroying myelin,

it may not create as much impairment.

What’s NewKeeping Up With MS ResearchWhat’s New:Keeping Up With MS Research

The MS Disease Process as a Swimming Pool

Dr. Stephen Krieger, a neurologist at the Icahn School of Medicine at Mt. Sinai in New York City, has devised a visually simple but elegant way to explain why MS looks different on each person. His model also illustrates how MS changes over time, and how a single disease process could present so differently.

He conceptualizes the MS disease process as a swimming pool. Like most swimming pools, it has a sloping floor, which creates a water level that is shallow at one end, but gradually deepens as one moves down the length of the pool. These different depths represent different regions of the central nervous system, and the water levels are roughly equivalent to the amount of wiggle room in each region. The shallow end represents the spinal cord and optic nerve, areas of the CNS that are “eloquent” and don’t have much coverage or wiggle room. Damage in eloquent areas generally causes symptoms. The deep end represents the cerebral hemispheres of the brain, areas that have more overlap, redundancy and wiggle room. The deeper the water, the more possible it is to hide damage on the floor of the pool—and mask the effects of injury.

Mountains, or cones, that erupt out of the floor of the pool, represent MS disease activity. The surface of the water is the point at which these problems, or lesions, become evident. In the case of MS, mountains that don’t break the surface of the water represent clinically silent disease activity; those that rise above the surface of the water represent exacerbations or disease activity that results in temporary or persistent symptoms. Obviously, a smaller mountain, in the shallow end, is more likely to be unmasked than an even larger mountain in the deep end. This is consistent with what we know about MS—that some people have disability not because they have a lot of lesions, but because they have a lesion in a critical location. It also fits with what we know


continued on page 9

Researchcontinued from page 7

Optic Nerve/Spinal Cord Brain Stem/Cerebellum Cerebral Hemisphere

Top of Pool/Maximum Water Capacity

Regions of Central Nervous System

Symptom Threshold


MS Leisions



Symptom Threshold


MS Leisions




Optic Nerve/Spinal Cord

Symptom Threshold

MS Leisions

Clinically Isolated Syndrome, Year 5

Relapsing Remitting MS, Year 8

Progressive MS with Disability, Year 16

The Evolution of MS over 10 Years


about primary progressive MS, which is that it more often involves spinal cord lesions and is more often diagnosed in older people—or, to put it another way—that it occurs in a sensitive area and tends to be unmasked as a function of aging.

The total volume of water represents brain reserve—the capacity of the central nervous system to compensate for injury. Many things affect the water level in our swimming pools. One of the most significant, that affects all of us, is aging. Aging causes the gradual evaporation of water, so the longer we live, the more water we lose, and the less capacity we have to cope with injury. That’s why the frequency of all health problems—heart disease, diabetes, and the decreased robustness of the immune system—increases as a function of age, because all our systems begin to run out of wiggle room.

Dr. Krieger’s model is useful to depict how and why MS evolves over time and provides a rationale for thinking about MS as a continuous disease process that presents in different ways depending on variables such as lesion location and patient age. According to this model, there are a number of factors that influence whether and how MS progresses and disability develops. And that’s good news, because it suggests that there are different targets for intervention. To view Dr. Krieger’s model please visit http://tinyurl.com/informs-pool.

Treatments to Manage MS Disease Progression

MS progresses because the brain is damaged by the immune system. One way to prevent the damage to the brain is to reign in the immune system and that’s essentially what disease-modifying therapies do. They slow the creation of new mountains on the floor of the pool and try to keep the ones that are already there from getting bigger.

To date, people diagnosed with progressive forms of MS have been barred from using the disease-modifying therapies because, in clinical trails, these

drugs didn’t appear to change the course of progressive disease. However, in October, Genentech released the results of a phase 3 study of a new drug that targets B cells and does have a significant impact on sustained disability progression in primary progressive MS. This drug, ocrelizumab, was found to be significantly more effective than interferon therapy for persons with relapsing forms of MS as well. All of this is important for three reasons. This is the first therapy that has a proven effect on disability progression in primary progressive MS, so, when the drug is released (probably in early 2017), it will be the first disease modifying therapy available for people with primary progressive disease. In addition to being more effective than many of the existing therapies, ocrelizumab appears to have a much better safety profile, so that will make it potentially easier to use for all people with MS. And, finally, because it works primarily by reigning in B cells, these studies add substantially to evidence that B cells are a critical driver in the MS disease process. This helps us better understand the biology of MS, which, in turn, will aid the development of better therapies. For more information see http://tinyurl.com/informs-ppms.

NeuroprotectionAnother way to prevent damage

to the brain is to somehow make the brain more resistant to damage—to shore up its defenses so that it is less likely to be injured. That’s essentially what neuroprotective strategies aim to do. Neurodegeneration occurs when nerve fibers are exposed to the chemicals produced by the inflammation. If the nerve cells can somehow be protected from these chemicals—insulated, if you will—destruction of neurons, oligodendrocytes (myelin making cells) and astrocytes (house-keeping brain cells) might be minimized or prevented. In line with the swimming pool analogy, neuroprotection wouldn’t prevent new mountain formation, but might prevent the mountain from becoming bigger and minimize the likelihood that it will poke above water level and create disability.

There is some interesting research on neuroprotective strategies that has been released in the past year.

Ibudilast is a phosphodiesterase inhibitor that is used in the treatment of asthma and stroke. In earlier studies in relapsing MS, it showed no benefit on relapses or new lesions formation in the first year. However, by the end of the second year, fewer people in the treatment group were showing signs of disease progression. This suggests that ibudilast may have a protective effect on nerves that had already been damaged and might prevent neurodegeneration. Studies to explore the effects of ibudilast on patients with primary and secondary progressive MS are underway at 28 sites, including the Rocky Mountain MS Center at University of Colorado. For more information, visit http://tinyurl.com/informs-ibudilast.

Phenytoin, popularly known as Dilantin, is an anti-convulsant drug that is primarily used in epilepsy and sometimes to treat pain in MS. In April of this year, researchers in London released results of a study that suggests the drug may also have neuroprotective effects. Eighty-two people with acute optic neuritis, were treated for three months with the drug and about 30 percent sustained less


One way to prevent the damage to the

brain is to reign in the immune system and

that’s essentially what disease-modifying

therapies do.

continued on page 12

Rocky Mountain Multiple Sclerosis Center8845 Wagner Street | Westminster, CO 80031 | 303.788.4030 | www.mscenter.org

Together we are stronger.

In Colorado, the answer is simple: The Rocky Mountain MS Center. Since our founding in 1978 we have built an innovative model right here in our community that’s a world leader in MS treatment, care, education, and research. As the needs in our community continue to grow, your help is more vital to our work than ever before. Please make a donation today.

Our patients know that the care they receive is handled by a committed staff of clinical professionals. Our physicians at the Rocky Mountain MS Center at University of Colorado (RMMSC at CU) are pioneering exciting and effective new MS treatments. An estimated 50 percent of all Coloradans living with MS are patients of the RMMSC at CU. But our impact – and what your gift today supports – goes far beyond office visits. We’re dedicated to providing community education about MS, legal and counseling services, an award-winning adult day program, and funding research efforts at the RMMSC at CU that are changing the future of MS. And we’re doing it all right here in Colorado.

We are committed to transforming your generosity into hope for the community of Coloradans living with MS. We share your determination that your donation goes the furthest and has the greatest impact. That’s why every dollar we raise will stay in Colorado, driving the care, support, education and research we bring to patients and their families every day.

If you want to support MS in a way that makes real impact right here at home, the Rocky Mountain MS Center is the best place to give. Please take a moment to return the enclosed envelope with your gift – we hope you’ll share our pride as we put it to work immediately on your behalf.

With gratitude and best wishes for the new year,

Gina Berg, CEO Brett Hanselman, Chair

Sarah MS patient

“If it wasn’t for the Rocky Mountain MS Center, it would have been a lot harder to get my diagnosis. MS is complicated. I found that there’s little awareness about how to identify it.”

Sean MS 101 attendee

“I just wanted to thank you for your class Monday night. You definitely made it interesting and took away the ‘doom and gloom’ of a possible diagnosis. My mother and I walked away feeling better about my current situation.”

Dr. Timothy VollmerRMMSC Medical Director

“Although MS is treatable, it is not yet curable. The RMMSC research program is focused on three goals: first, identifying the best treatment strategy for each patient to maximize lifelong brain health; second, researching current therapies; and third, pursuing an MS vaccine approach with the goal of curing MS and preventing MS in those at high risk.”

Ryan Client at the King Adult Day Enrichment Program (KADEP)

“Every day I wake up and I look forward to coming to KADEP. I get to do things I normally would not be able to, like hydrotherapy, boxing and camping.”

When you or someone you love is living with multiple sclerosis, where will you turn?

$2,500 Supports the cutting-edge clinical research underway at the RMMSC at CU

$1,500 Provides meals for our KADEP program clients for a week.

$1,000 Underwrites a free MS 101 seminar for 15 people

$500 Funds legal assistance for someone navigating the social security disability system

$250 Provides three days of respite care at KADEP for a family needing assistance

$100 Allows a private counseling session for a newly-diagnosed patient

$50 Sends a client to hydrotherapy for one month

$25 Purchases a holiday gift for a KADEP client

$10 Funds one free subscription to InforMS Magazine for an entire year

Here are just a few examples of the ways your gift could make an immediate impact:

Make Your Gift on Colorado Gives Day

If you’d prefer to make your gift online, please visit ColoradoGives.org and search for the Rocky Mountain MS Center to schedule an online donation for Colorado Gives Day, December 8, 2015.

Give today by returning the envelope provided here, or anytime through our secure website at MSCenter.org.

All donations made as part of Colorado Gives Day will be matched by a portion of First Bank’s $1 million Incentive Fund. Make your gift go further by donating now!


damage from the attack than those who received placebo.

Research in this area is very preliminary and all the studies have been very small. How these sorts of drugs might be helpful and how they might be used—perhaps as add-on therapies to improve the effects of disease modifying drugs—is unknown. But they are causing excitement because they provide indications that neuroprotective strategies are a real possibility for people with MS. For more information, please visit http://tinyurl.com/informs-aan.

Reparative StrategiesStrategies to repair the nervous

system are in their infancy. The human body, including the central nervous system, has a tremendous capacity to replace damaged cells and to repair itself. We heal from cuts, we (at least some of us) grow new hair when the old falls out, and we mend broken bones. Our bodies make these repairs better when we are younger; it appears that the resiliency to injury begins to wane with age. The brain can also repair damage, and routinely does so in MS. In our swimming pool, reparative strategies would make the impact of the mountains smaller so that they created less disruption.

Oligodendrocytes are myelin-making cells and they repair MS damage all the time. This is one reason people have remissions after a relapse—because the brain has repaired the problem.

LINGO-1 is a protein that inhibits the development of immature nerve cells into myelin-making cells, which, in turn, limits the natural ability of the brain to remyelinate damaged axons. Anti-LINGO-1 blocks LINGO-1, and by so doing may stimulate myelin growth. Phase II studies of this molecule in 82 people with a first attack of optic neuritis found a small but statistically significant improvement in the speed of nerve conduction in the optic nerve, which suggest that there was possibly remyelination of the optic nerve. There was no improvement in visual function however.


Biotin is a B vitamin that may increase the energy available to help damaged nerves function. Theoretically, damaged neurons have greater energy demands but less energy production capacity because they are damaged. Biotin might help nerve cells get around this problem. Researchers in France used high doses of biotin in people with progressive MS and found evidence that it might stop or even reverse progression secondary to demyelination as measured by performance of a timed 25-foot walk.

Again, this study is very preliminary. It is not clear whether the observed improvement was a result of remyelination, and therefore sustainable after the drug is withdrawn, or whether the drug is a symptomatic therapy that temporarily improved walking. The doses of biotin were many times the normal dose, and at high doses the drug can cause birth defects, so the take away message is, “Don’t try this at home.”

Stem cell therapies were big MS news in the spring of this year. Researchers at Northwestern University used a combination of hematopoietic stem cells and high-dose immunosuppressive therapy in a group of patients with relapsing or secondary-progressive MS and measured sustained disability status. The study found positive results—many people didn’t

progress and some people improved. However, the study had significant limitations, among them that the study did not have a control group, and the patients were treated with different combinations of therapy, so it is hard to trust the results. The study did not find any benefit for people with progressive MS.

For more information about stem cell treatments, please refer to the interview with Dr. John Corboy and the accompanying information on page 13.

Lifestyle Management Strategies

One really important way to manage MS and limit the disability it causes is to maintain your overall health. People who have other medical problems (co-morbid conditions) in addition to MS tend to have more disease progression. So do people who smoke cigarettes. Strategies to maintain overall health are equivalent to preventing water from leaking out of our pool. Water will evaporate, as a function of aging, and we really can’t prevent that, but doing routine pool maintenance will prevent unnecessary water loss. This is important because, the more water we lose, the less we will be able to compensate for problems caused by MS.

Strategies to maintain and maximize life-long brain health have been discussed in other issues of InforMS, so please refer to those at www.mscenter.org for details. A general guideline to follow when considering life-style modifications is, “If it’s good for the heart, it’s good for the brain.” In a nutshell, a heart-healthy diet, like the Mediterranean Diet, is recommended. So is maintaining an adequate vitamin D level. Regular exercise, both physical and mental, helps the brain stay fit, and helps the body do the same. A sufficient amount of sleep gives the brain some time to repair. Eliminating unnecessary stresses and developing strategies for recovering from the unavoidable stresses also helps prevent brain and pool drain. Staying involved, staying connected to friends and activities, and having some fun also promote your resilience. n

The human body, including the central

nervous system, has a tremendous capacity to replace damaged cells and

to repair itself.



John Corboy, M.D., is a professor of neurology at the University of Colorado Denver’s School of Medicine, the Co-Director of the Rocky Mountain MS Center at University of Colorado, and has been involved with stem cell research for many years.

InforMS: What do people with MS need to know about stem cells?

Dr. Corboy: Not all stem cells are the same. There are lots of different types of cells, and they have different qualities and .characteristics. They might have different abilities to enter the nervous system and different abilities to migrate to where you need them to go. They might have different abilities, either to replace cells that are damaged or to stimulate those cells that are already in the nervous system to get them to function better. Five to seven percent of all the cells in your brain are neural precursor cells—neural stem cells. These are cells that aren’t fully differentiated—they are in a holding state—and they are your repair capacity. They are your back-up cells. When I was in training we were told these backup cells didn’t exist in the nervous system, but now we are being told that not only do they exist, we are using drugs to manipulate them. That’s what’s remarkable to me, that in the space of one generation we’ve gone from thinking they don’t exist to manipulating them.

InforMS: At this time, do stem cells have any practical applications for someone with MS?

Corboy: It depends on what you are trying to accomplish. Are we talking about manipulating the immune system, like we do with all the med-icines we already use, or are we talking about trying to repair the nervous system? All the potentially positive results that we have seen with stems cells involve the former, not the later.

The concept behind manipulating the immune system is that, in young, relapsing patients, it is overly active and misguided. Then the question is, “Can I redirect or replace the immune system so it stops doing that?”

The first attempts to do this in MS were similar to the bone marrow transplants for people with leukemia. In MS you don’t need to get bone mar-row from someone else because you don’t have cancer—you just need naïve cells and you can get those from your bone marrow. You harvest these and store them, and then you kill the bone marrow, because you want to get rid of the cells that have been causing the damage. You kill the precursor cells except for the very early, undifferentiated ones that you have stored. After you kill the immune system, you replace it with the cells you have stored. In effect, you rescue your immune system, but you do it with cells that are naïve

Dr. John Corboy Weighs in on Stem Cell Research & MS

Stem Cell PrimerStem cells are the seeds from which we grow. There are different types of stem cells. They come from

different places in our bodies and arise at different times in our development. All stem cells can do two critical things: make copies of themselves (self-renew) and develop into more specialized cells (differentiate). But stem cells also vary widely in terms of what they can and cannot do, and the environments in which they can and cannot function.

Embryonic stems cells are pluripotent, which means that they can develop into every cell type in a fully formed body. For this reason, they are highly valuable. Because the primary source is the human embryo, they are also highly controversial.

Tissue-specific stems cells, or adult stem cells are more specialized. They are multipotent, which means that, while they can’t become anything,

they can develop into different cells types that are specific to the tissue or organ they inhabit. Neural stem cells reside in the central nervous system and can differentiate into neurons, astrocytes or oligodendrocytes. Hematopoietic stem cells can give rise to different types of blood cells. Tissue-specific stem cells have limitations. They can be difficult to locate in the body and they can be difficult to grow in culture (outside the body).

Mesenchymal stem cells come from the connective tissue that surrounds other tissues and organs. They can make bone, cartilage, or fat cells. They can also be grown from other tissues such as fat or umbilical cord blood. It is not clear whether these are actual stems cells or what kind of cells they are able to generate. They may have the ability to modify immune function. All mesenchymal cells are not the same. Their specific characteristics seem to depend on where in the body they come from and where they are isolated and grown.

Induced pluripotent stem cells are engineered in the lab by converting tissue-specific cells, such as skin cells, into cells that behave like embryonic stem cells. They are important tools for research—both to understand disease biology and for development and testing new drugs. They share some, but not all, of the characteristic of embryonic stem cells. As they become better understood, they may ultimately be a source of cells for medical treatment. n

For more information, visit http://tinyurl.com/informs-stemcells

After you kill the immune system,

you replace it with the cells you

have stored—in effect, you rescue your immune system.


When researching multiple sclerosis on the internet, it is important to review websites with a critical eye. This abundance of caution is particularly appropriate when it comes to researching stem cell therapies.

We hear from many people who have found information online about stem cell research. Unfortunately, if you google the words “stem cell” and “MS,” a range of websites will appear and it’s often hard to determine if the information is credible.

Here are some things to look for when you are on a site that offers stem cell therapy for MS patients:

• Does the stem cell-related website tell you where their facility is located? If they don’t include a location, that raises a red flag about their credibility.

• What are the credentials of the medical staff? Do they have a neurologist on staff? Do any of the medical staff members have MS credentials? If not, this is problematic. All stem cells are different and having a MS specialist or neurologist on staff is critical to ensure that the facility has MS-specific knowledge and expertise.

• Do they provide information about the procedure, what type of stem cells they are using, and the delivery mechanism of the stem cells? If the website is vague and doesn’t give you information up front and instead asks you to call a number for more information, that is a red flag.

A good rule of thumb is to stick to established, trusted websites. If you aren’t sure if a site is trustworthy, print out what you’re reading and ask your neurologist for their perspective. It can be informative and useful to research things online as a way to talk to your doctor, but it should never be the final word.

You can also reach out to us with questions and we can route them to the MS specialist doctors on our team. Please email [email protected].

The Rocky Mountain MS Center produces materials which have been reviewed by medical professionals on our team and is an excellent and vetted resource for your needs. Please visit www.mscenter.org. n

Using the InternetGoogling MS and Stem Cell Research

Stem Cellscontinued from page13

and have not been misdirected by whatever caused the problem in the first place—whatever gave you MS.

You reboot the immune system. You can do this in a couple of ways; by killing your bone marrow, which is what I’ve just described, or by almost kill-ing your bone marrow and all the peripheral cells and letting them naturally come back. That’s what the studies at Johns Hopkins have been doing. Or, if you don’t care about killing the immune system, you could simply reboot it, by taking immune cells and shooting them right in. That’s what they have been doing most recently, at Northwestern and at Ottawa and the Cleveland Clinic.

One way or another, you give cells that will re-place or redirect the immune systems but you do this with stem cells that are relatively naïve. All those things happen in the periphery—in your lymph nodes and blood stream and not in your nervous system.

This approach is good for people who could benefit from rebooting the immune system, but that isn’t going to be helpful for people with progressive MS, who have a fixed and worsening deficit. This is where you might need to repair or replace the nervous system, or figure out how to activate the cells already in the nervous system, to get them to do the repair work. This would be easier than replacing the nervous system.

InforMS: How would you know what to repair?

Corboy: That is another level of problem. Is every MS brain and spinal cord the same? No. Some have more axonal damage, more myelin damage. Some have lost a significant number of oligodendrocytes. The pathologies ar-en’t necessarily the same, and, actually we don’t know the pathologies most of the time because we don’t biopsy patients. There is a lot of difference between patients.

There is manipulation of the immune system and there is repair of the nervous system. These are different issues and different types of stem cells might help different aspects of what’s going on. There is data to support mesenchymal—bone marrow derived—stem cells for treatment of relapsing, inflammatory, aggressive MS. But there is no evidence that it does anything to help fixed deficit.

So, none of the things that have been done so far would be terribly useful for people with progressive MS. The hope is that the newer approaches, using neural precursor cells, and perhaps injecting them into the spinal fluid, will have either a direct or indirect effect on repair in the nervous system.

InforMS: So what is the hope for someone with progressive MS?

Corboy: What I just described is a cellular approach. There is another approach. Five to seven percent of the cells inside the spinal cord already are the ones we want to manipulate. If we could turn them on better, we could have them do their own repair. That’s what’s going on right now, for example with anti-LINGO. And there is another study going on at the Mayo Clinic, with a molecule that might do the same thing, to help cells get unstuck. n

There is manipulation of the immune

system and there is repair of the

nervous system.

A N N O U N C I N G T H E 2 0 1 6 C O N V E R S A T I O N S O N M S S E R I E S

JANUARY FEBRUARY MARCH APRIL Tuesday Thursday Thursday Monday 1.5.16 2.4.16 3.10.16 4.4.16 Denver Colorado Springs Pueblo Boulder 6 - 7:30 pm 5:30-7 pm 5:30-7 pm 5:30-7 pm Denver Public Library, Pike’s Peak Library Pueblo Library Boulder Public Library Woodbury Branch District, Penrose Rawlings Branch 1001 Arapahoe Ave. 3265 Federal Blvd. 80211 20 N. Cascade Ave. 100 East Abriendo Ave Dr. Teri Schreiner Dr. Timothy Vollmer Dr. Enrique Alvarez Dr. Augusto Miravalle

Get Your Questions Answered and Join the Conversation!

www.mscenter.org

When you’re living with a complicated disease like MS, it can be easy to forget that you may have things going on that are completely unrelated to the disease. What physicians refer to as “co-morbidities” can sometimes be put on the back burner while you sort out the latest manifestation of MS in your life.

The danger here is obvious: if untreated, other medical issues can interfere with treatment, amplify your MS symptoms, and potentially pose a serious threat to your overall health. Thankfully, many problems can be identified in a regular office visit with your MS specialist, and hopefully that will begin the process of getting you the help you may need.

Sometimes, however, getting that help can be complicated. Whether it’s a mobility issue keeping you from traveling to an appointment, or the costs that may not be fully covered by insurance, dental care can turn into a major health concern.

Dr. Larry Coffee and his colleagues have been working for decades to help improve access to dental care for

people unable to afford it because of limited income and extraordinary costs resulting from medical and disabling challenges.

Medicare lacks any dental benefits, although some Medicare Advantage plans offer limited coverage. Most state Medicaid programs offer sparse, if any dental coverage for adult beneficiaries.

Founded in Denver in 1974, Dental Lifeline Network has grown into a national nonprofit organization where dentists around the country donate their time and services to those who need them. Whether it’s a disability, mobility problems, age or other medical issue that’s keeping someone from a dentist’s office, the volunteer dentists involved with the Dental Lifeline Network do everything they can restore the comfort,

Denver Charity Connects Dentists with Those in Needby Pete Broderick

dignity, and function of oral health to people assisted through its Donated Dental Services (DDS) program.

Dental care is a problem confronting many people with uninvited mental, physical, medical, and developmental challenges. “We saw people with functional challenges in their lives, that presented financial challenges,” said Coffee. Volunteerism isn’t a health care delivery system. At best it provides a


Dental Lifeline Network ProgramsDonated Dental Services (DDS): provides free, comprehensive dental treatment to people with disabilities or who are elderly or medically fragile. These are people who cannot afford necessary treatment and cannot get public aid. The program operates through a volunteer network of more than 15,000 dentists and 3,600 dental labs across the United States.

Dental Housecalls: brings care to people who cannot easily travel to dentist’s offices, including residents of nursing homes, homebound individuals and people with developmental disabilities attending day programs or living in residential centers.

For more information, visit www.dentallifeline.org


limited safety net. Yet pro-bono dental care is an important resource for helping at least some people.

“There’s a long history of volunteerism in the dental profession,” says Coffee. But an issue continually facing well-intentioned dentists was the lack of continuity of care: often a dentist would see someone once and address an immediate problem. While important, that was generally insufficient for patients and not particularly fulfilling for dentists.

This issue was at the heart of developing Donated Dental Services (DDS), the

flagship program of the Dental Lifeline Network. “We told the dentists, ‘you need to be the architects of the program, we’ll be the coordinators,’” said Coffee. With the Dental Lifeline Network coordinating care, introducing patients to providers, and facilitating relationships, volunteer dentists are now able to provide that comprehensive care, and see the difference they’re making in peoples’ lives. The program they’ve developed has clearly resonated with dentists, with around 15,000 of them now part of the DDS program.

Today, DDS matches applicants with dentists in their area that can best serve their particular needs. “We’re sort of like Match.com,” says Coffee. “We want the match to be one that the dentist feels comfortable with. Seldom do volunteers decline a possible referral, and when they do it’s usually due to scheduling issues.”

Comprehensive care and a meaningful relationship

between a dentist and patient is crucial to the care of a chronic disease like MS. “A lot of dental issues are really bacterial infections, but we don’t always think of them that way,” said Coffee, specifically mentioning conditions as common as gingivitis and periodontal (gum) disease. In a disease like MS, many treatments can affect a patient’s immune system, and someone with an oral infection could be put at risk. “If people aren’t thinking about cavities and puffy gums in that way, they’re not going to tell their doctors, and physicians aren’t necessarily going to ask, ‘do you have any cavities?’”

In addition to their ongoing programs, the Dental Lifeline Network plans to request the FDA to clarify that cavities and gum disease are infections whenever product information labels for drugs that can hinder the immune system advise about use if there are infections.

In metropolitan Denver and Chicago, the Dental Lifeline Network also operates Dental HouseCalls, a mobile service for those who can’t easily make it to a dentist’s office. This program features portable dental equipment that can be transported to a person’s home.

To find out about Dental Lifeline Network’s programs in your area, or to apply for help, visit their website at www.dentallifeline.org. n

Dentalcontinued from page 15

Be active while discovering your inner strength and courage! Join us this winter for five day event including lodging, private ski instruction, all necessary equipment, home cooked meals, and good company! During the day you can expect physical outdoor experience, while the evenings provide the unique opportunity to connect with others.

Cost: $900.00 (ask about scholarship program). Additional fees for friends and family members as well as transportation to and from DIA.

BOEC is known for providing personalized service and customized skiing and riding experiences for all of their clients. We view skiing and snowboarding as sports that can be enjoyed by all!

Adventures Within Winter Ski ProgramFeb. 27—March 2, 2016Breckenridge, Colorado

BreckenridgeOutdoorEducation Center

The volunteer dentists involved with the

Dental Lifeline Network do everything they can to restore the

comfort, dignity, and function of oral health

to people assisted through its Donated

Dental Services.

You don’t need to have any experience, just an open mind and a willingness to learn something new and exciting!

To register or get more details call or email Claire DiCola at the BOEC. 1-800-383-2632 ext.105 [email protected] www.boec.org A cooperative effort of the BOEC and the Rocky Mountain MS Center


Budget Act Protects Social Security Disability Fund Through 2022by Thomas Stewart, M.S., J.D., PA-CAs readers of InforMS have known, the Social Security Disability fund was scheduled to run out of money in about a year. Without Congressional action, current and future disability recipients would have seen an across the board reduction in their monthly benefits of about 20 percent. To make matters worse, some Medicare Part B recipients (most people who receive Social Security Disability benefits are insured through Medicare) would have seen huge hikes in their monthly premiums.

Fortunately, our Congress and President responded. The Bipartisan Budget Act of 2015 was signed into law by the President on November 2, 2015. The Act reallocates funds from the Old-Age and Survivors Insurance trust fund (the retirement trust fund) to the Disability Insurance (DI) trust fund to ensure payment of full disability benefits into 2022. Without such a reallocation the DI trust fund would have been depleted in December 2016. Furthermore, The agreement calls for a $7.5 billion loan from the U.S. Treasury to help cover expenses and soften the 52 percent premium hikes that were looming for 30 percent of Medicare Part B beneficiaries (Medicare Part B covers the costs of doctor’s visits, outpatient services and durable medical equipment).

The legislation made other modest changes to the Social Security Disability program. The change most likely to impact people with MS is the requirement that Social Security have a “qualified physician” (where a physical impairment is alleged) or a psychiatrist or psychologist (where a

mental impairment is alleged) review the medical portion of the case. It is unclear how this change will impact decisions made by Social Security, and in some states such review already occurs. It is possible that some physicians assigned to review cases will lack a deep understanding of the invisible MS symptoms of fatigue, cognitive problems, depression, and pain. If so, then it may prove harder for

MS patients to access benefits, especially where their disabling symptoms included the invisible symptoms mentioned above that are not readily measured through standard office-based neurological testing. In any case, it is a reminder that for many people with MS who lose the ability to work due to such invisible symptoms, that close follow up from an expert care team is critical. It is ultimately the strength of the medical record that will determine an applicant’s initial success.

Another modest (and complicated!) change is designed to create a greater incentive for beneficiaries to return to work. Currently, subject to a few exceptions (the trial work period and unsuccessful work attempts) disability insurance beneficiaries who earn

more than $1,090 per month in 2015 (technically this is “substantial gainful activity,” a number that changes yearly) will subsequently lose their cash benefits. The new legislation requires the Social Security Administration to test the effect of changing this “cash cliff ” by replacing it with a benefit offset, under which income benefit would be reduced by $1 for every $2 of earnings in excess of a threshold. The SSA could test multiple thresholds at or below the current level of earnings that constitute a trial work month ($780 in 2015). Details of this change are unclear, but it may be that the trial work period would be replaced by a

system where beneficiaries could receive partial benefits if their earnings in a month exceeded the substantial gainful activity amount ($1,090 a month in 2015). Once an individual’s benefit is fully offset, monetary benefits would end (however, Medicare coverage would continue for 93 months).

Other changes were also included. For example, more administrative law judges will be hired to reduce the delay (sometimes two years) many

claimants experience throughout the application process. Many of the other changes relevant for Social Security Claimants are focused on reducing fraud and should not be a problem for most applicants.

Given the serious legislative risks facing current and future Social Security Disability beneficiaries, those concerned about the this bedrock safety net should breath a deep sigh of relief with the passage of this Act. n

Mr. Stewart directs the RMMSC’s Disability Law Program. For a free consultation, please contact RMMSC’s Disability Law Clinic at (720) 301-9708.

The Bipartisan Budget Act of 2015 was signed into law by the President on November 2, 2015.


In 1978, Lanne Tuohy was raising two small children on her own and working a full-time job in the community of Flint, Michigan.

When anything would go wrong physically, they would blame it on a pulled muscle from playing tennis.

One day at work, she lost sight in one of her eyes. At the beginning, she and her doctors thought it was an eye problem, but she was later diagnosed with MS. She was facing fear and uncertainty with her diagnosis, but with the support of her family, she faced those fears with steady determination.

Fast-forward more than 35 years, and Lanne’s journey with MS has a new troupe of supporters.

Meet Lanne’s three granddaughters: Savannah (age 10), Sage (age 7), and Paris (age 11).

“For a long time, I didn’t know my Gramma had MS. I knew she was having problems with her legs, but I didn’t know what was wrong,” explains Savannah. “My first thought when I found out was, ‘Oh my gosh, is there something I can do?’”

For the past three summers, Lanne’s three granddaughters have organized fundraisers in Frankfort, Michigan to support the Rocky Mountain MS Center. The girls have baked cupcakes and brownies with Lanne’s daughter Ginger to sell at the community arts and crafts fair. They’ve enthusiastically painted nails, made lip glosses, and created rock

MS Center CommunityIt’s All in the Family An MS Journeyby Kerri Cechovic

art. And they even organized a dunk tank fundraiser on a particularly cold and rainy day near Crystal Lake in Michigan.

I can’t say enough about how proud I am about my girls’ excitement and commitment towards raising money for MS research,” says Ginger, “Their efforts brought so much joy to my mother who had to explain what tears of happiness were to her granddaughters.”

We spoke with Lanne recently to learn more about her and her granddaughters and about

her journey with MS.

How did you feel when you found out your granddaughters had organized their first fundraiser?

I was completely surprised that they work on projects during the winter for the summer fair. Every time my daughter sends photos of them gathering donations, I burst with pride at their dedication. I love that my granddaughters

are old enough to be actively involved with MS. Their fundraising can be a pathway to making their friends and families, and the community more aware of this disease. And I feel very grateful that the funds they raise for Rocky Mountain MS Center are being used so effectively to help people living with MS and to advance critical research.

My husband, my children Ginger and John, and my grandchildren have lived with all my stages of MS since 1975. They remember me swimming, performing in musicals, walking miles on the beach, going down the slide with them until they had the courage to go alone, baking, playing the piano and all those loving

I feel very grateful that the funds they

raise for Rocky Mountain MS Center

are being used so effectively to help people living with

MS and to advance critical research.


open doors, skip slower to be by my side, and always say “Gramma, do you need help with anything?”

What went through your mind when you were first diagnosed with MS?

At that time of my diagnosis, in my world, there was one book on MS and it was every horrible thing that could ever happen when you have MS. I just remember thinking, “Oh, that’s not me.” I just didn’t fit into any category and wanted no part of it.

After you’ve had MS for a while you sort of learn the patterns of having MS. I learned that eventually it would improve. And through the years, it was always a rollercoaster, but I’d always bounce back. Little bits would add up, and I was always very sensitive to the heat. Then, when the kids were 14 and 17, my husband Mike and I got married and he really took over as Dad and caretaker and, 34 years later, here we are.

What are the elements of your life that have given you the most support and help during your journey with MS?

Everybody has their thing in life. There are some really good things and there are some very tough times. I don’t think anyone gets through life without that. This one has been mine and we’ve made it work.

Every morning, I wake up and think “Okay, what’s working

today?” Each day presents a new type of challenge. My transition to a wheelchair has been particularly hard. And there’s no way to sugar coat the fact that life with MS is tough. I have plenty of down moments, but overall I try to approach the challenges with a positive attitude.

My husband has made it all workable. Always. We had no idea what was ahead but Mike insisted we share wherever it led us. Mike is the reason I can still live in our home, go to movies, theater,

bridge, and out to eat. His patience is incredible since I have not given up things very gracefully. He does everything except refuses to attend my occasional “pity parties.” No matter how difficult his day may have been you will find us every night sitting on our couch and he is lovingly rubbing my feet for hours.

I was a hospice volunteer for about 20 years which has been

wonderful. To define myself, it wouldn’t be my MS, it would be my hospice families and my involvement in different areas of the church. For example, leading a bible study, singing in the choir, and serving as a prison team leader. I’ve often said it’s everyone’s responsibility to find their place to volunteer.

I’ve truly been surrounded by so many blessings. Each time my MS closed an area of my life something new would surface. When I had to stop playing tennis I started golf. I wasn’t really good, but the wonderful friends and spectacular golf courses were great. And the same week I decided I needed to drop most of my monthly bridge games I met a woman who started me in a 24 hour online bridge game. I now have friends all over the world including Thailand, Bulgaria, China, and Estonia.

I want to encourage everyone to take a moment when you have a mountain in your way to figure out an alternate route. I have been blessed with many friends that will drop everything if we ever ask for their help. It has taken many moons for me to realize that there are people in my path that I can still help, but there are so many who want to help us. n

things that grandmas do.

My grandchildren held my hand, remembered my cane, rode on the seat of my walker, sat on my lap in the scooter and now take turns turning on my wheelchair. They already are wonderful caretakers because they automatically

I love that my granddaughters

are old enough to be actively involved with MS. Their fundraising can be a pathway to making their friends

and families more aware of this disease.

Sage, Paris, Lanne, and Savannah

8845 Wagner StreetWestminster, CO 80031

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Every MonthMS 101 Empowerment through education for the newly diagnosed. Join Pat Daily, LCSW, for an informal discussion of issues important to people newly diagnosed with MS. Family members and friends are welcome. The small group format of MS 101 allows each class to be tailored to the needs of attendees. There is no charge, but registration is required and class size is limited. Call 303-788-4030 x 120 to learn more. Aurora, Denver and Westminster, CO

MS 101 for Everyone MS 101 has traditionally focused on newly diagnosed patients and their families. MS 101 for Everyone brings a slightly different focus to our MS 101 course, concentrating on topics that may be more relevant to caregivers, healthcare professionals, interested community members or those who have been living with MS for a while. There is no charge, but

registration is required and class size is limited. Call 303-788-4030 x 120 to learn more. Aurora, Denver and Westminster, CO

Conversations on MS Do you have questions about the latest in MS research, symptom management, clinical care options and more? Get your MS questions answered by one of our physicians. Throughout the year we travel the region bringing the Conversations on MS program to communities around the Rocky Mountain region. Check below for an upcoming session near you, or visit www.mscenter.org/events/calendar for more dates.

DecemberDecember 8, 2015 Colorado Gives Day. Join the Rocky Mountain MS Center and the Community First Foundation for a day of giving across Colorado! Visit Coloradogives.org and search for the RMMSC, or visit MSCenter.org for more information.

December 15, 2015 Rocky Mountain MS Center Webinar: ECTRIMS and Education Summit. Join the Rocky Mountain MS Center physicians Dr. Enrique Alvarez and Dr. Augusto Miravalle for an update from the annual

ECTRIMS conference and the RMMSC’s Fall Education Summit. This webinar will be conducted online and archived for later viewing. Register through the calendar links at www.mscenter.org.

JanuaryJanuary 5, 2016. Converations on MS in Denver. Visit with Dr. Timothy Vollmer, Co-Director of the Rocky Mountain MS Center at University of Colorado. See description above 6:00 – 7:30 p.m. Denver Public Library, Woodbury Branch, Denver, CO

FebruaryFebruary 4, 2016 Conversations on MS in Colorado Springs Visit with Dr. Enrique Alvarez, MS-specialty neurologist at the Rocky Mountain MS Center at University of Colorado. See description above. Pike’s Peak Library District, Penrose Branch, 5:30 – 7:00 p.m., Colorado Springs

2015/16Rocky Mountain MS Center

CALENDAR

Contact Us Administration

303-788-4030Medical Appointments

720-848-2080King Adult Day

Enrichment Program 303-433-6887RMMSC@ MCPN 303-360-3712

RMMSC@ University of Colorado

720-848-2080Hydrotherapy

720-273-7461Social Security

Legal Clinic 720-301-9708

Tissue Bank 303-788-4030

February 27— March 2, 2016Adventures Within Winter Ski Program1-800-383-2632 ext.105 [email protected]. Breckenridge, Colorado

Visit www.mscenter.org/events/calendar for the most up-to-date schedule or to register for events.

informs · know the medicines you take. keep a list of your medicines with you to show your doctor...

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