ms connection may 08

Volume 3• Issue 2 Northern California Chapter

M O V I N G T O W A R D A W O R L D F R E E O F M S

INSI

DE

THIS

ISSU

E:

Chapter NewsPage 5

FundraisingPage 6

Research3

AdvocacyPage 16

CONTINUED ON PG 2

Being part of a movement means making a diff erence in a big way. And nothing’s bigger than Walk MS 2008, presented by MS LifeLines,

being held in 11 cities throughout Northern California on May 3 and 4, 2008.

With goals of recruiting more than 9,000 walkers and raising $2 million, Walk MS is the Chapter’s largest annual fundraiser. Proceeds will help fund the many diff erent programs off ered by the Chapter for people living with MS and their families, as well as research into new treatments and cure.

“Not only is Walk MS our largest fundraiser, but it’s our biggest opportunity to raise awareness about MS,” says Nicole LiaBraaten, Walk MS manager. “We have partnerships with media outlets throughout the area to help spread the word about the Walk and the need to raise funds for programs and services.”

Each walk site off ers its own local fl air. Some sites have bouncy houses and balloon artists, while others will host silent auctions or a steel drum band. One thing remains consistent – our goal

Walkers Move Us Closer to a CureWalk MS: Northern California is set for May 3 and 4, 2008

Register as a walker, virtual walker or volunteer now!

To sign up, visit www.nationalmssociety.org/can or call 800-344-4867.

May 3 May 4Alameda MercedModesto MontereyRocklin SacramentoSan Jose San FranciscoWalnut Creek Santa RosaYuba City

to raise awareness and funds! There’s no registration fee to participate, but fundraising is encouraged for all. Last year, our walkers raised an average of $350 each, and every participant who raises $100 or more will receive an offi cial Walk MS t-shirt.

Web Tools make fundraising easier than ever!

Fortunately, for those who are lacing up their sneakers now to prepare for Walk MS on May 3 and 4, powerful web-based

2 JOIN THE MOVEMENT: nationalMSsociety.org/can

2008, Issue 2 – Published 4 times per year: Quarterly.

510-267-9669/800-344-4867

Publication of the National Multiple Sclerosis Society, Northern California Chapter150 Grand AvenueOakland, CA 94612

ChairmanDavid R. Hultman

PresidentDavid Hartman

Newsletter EditorJames Dress

The National MS Society is proud to be a source of information about MS. Information provided is based upon professional advice, published expertise and expert opinion, but does not constitute therapeutic recommendation or prescription. The Society recommends that all questions and information be discussed with a personal physician. The National MS Society does not endorse products, services or manufacturers. Sponsorship of Society programs or events does not connote that the National MS Society recognizes superiority in products or services provided by the sponsoring entity over other entities providing like or similar products or services. The Society assumes no liability for the use or contents of any products or services mentioned.

© 2008 National Multiple Sclerosis Society, Northern California Chapter

FROM COVER

tools are available to make collecting donations and organizing teams easier – and more fun – than ever before.

“From recruiting team members to keeping track of your fundraising totals or thanking people for their donations, our web tools give walkers everything they need to raise money,” says Megan Trask, Director of Corporate and Donor Relations. “For example, you can send an email to 200 people, keep track of who reads it and who makes a donation, and then get reminders to send thank-you notes to contributors.”

To learn more about these online fundraising tools, or to sign up for a web-based training, contact Megan Trask at 800-344-4867 or [email protected].

Thank you Walk MS sponsors!

Presenting sponsor

Silver Sponsors

Sponsorship opportunities are available for your company! Contact Megan Trask at [email protected] to learn more.

Gold Sponsors

3TOLL FREE NUMBER 800-344-4867

CH

AP

TE

R N

EW

SWorking at the Northern California Chapter of the National MS Society I am inspired, on a daily basis, by the depth of

commitment and level of competence demonstrated by our staff and volunteers. I am inspired by the gifts of time and talent from our dedicated volunteers. And I am inspired by the generosity of our donors who entrust us with their fi nancial resources because they want to be a catalyst in moving forward to a world free of MS.

Our Chapter engages people and secures resources from 41 counties—from the Monterey Peninsula and Santa Clara Valley in the south, to the northern reaches of the North coast, all the way to the Sierras—in an eff ort to address the challenges faced by the people who live with MS throughout Northern California. We welcome you and invite you to join us in this movement.

Be a volunteer!Volunteers are the lifeblood of our

organization. We help people with MS and their families to help each other and to contribute to the work of the Society in meaningful ways. We have numerous volunteer opportunities throughout our Chapter territory.

Start a (Walk or Bike) team!We engage people who want to do

something about MS now. Join us for Walk MS or Bike MS by forming a team, by making a contribution, by inviting others to make a contribution, or by participating in our events.

Be an activist!Every day we give a voice to people with

Letter from the President, David HartmanWhat Will You Do?

MS and we make our mark as activists to address policies and programs that could impact the lives of people with MS.

We are working hard to address the challenges of people whose lives are aff ected by MS. Yet every hour of every day someone is diagnosed and families living with MS need more services and greater support.

So we must do more—and with your help we can! We need YOU to redouble your commitment and invite others to join the movement with you.

YOU have an opportunity to ensure that people with MS have what they need to keep moving forward, and to bring us closer to a world free of MS. So I ask you to consider right now: what will you do?

Make a fi nancial contribution: Contact Krisitn Hesse at: [email protected] or 800-344-4867, Press “2” then ext 110

Participate in Walk MS or Bike MS: Contact Megan Trask at: [email protected] or 800-344-4867, Press “2” then ext 115

Volunteer: Contact Sarah Hester at: [email protected] or 800-344-4867, Press “2” then ext 119

Become an Activist: Contact Stewart Ferry at: [email protected] or 800-344-4867, Press “2” then ext 124

Never doubt that a small group of individuals can change the world, in fact, it’s the only thing that ever has. --Margaret Mead

Become involved—become part of the change you seek—Join in the movement!


CH

AP

TE

R N

EW

S

The Northern California Chapter is proud to welcome UCSF’s Liz Crabtree-Hartman, MD, to the Board of Trustees.

Dr. Crabtree-Hartman fi rst became

interested in neurology as an undergrad at Reed College, where she majored in Neuroscience. Her interest continued through medical school at New Orleans’ Tulane University and residency at UCLA. Following UCLA, she joined Tulane’s junior faculty and began running its general neurology clinics where she found herself drawn to the MS patients.

In the wake of Hurricane Katrina, Liz and her family relocated to San Francisco, where she accepted a position on UCSF’s faculty after completing a fellowship at the UCSF MS Center. Dr. Crabtree-Hartman’s focus has been on improving access to patient care and developing patient education programs, including UCSF’s Champions Against MS quarterly series

The Board of Trustees Welcomes Liz Crabtree-Hartman, MD

and The Art of Living, a monthly peer-support group.

“The education needs of MS patients goes far beyond medication and symptom management, including things like the importance of diet, exercise, quality sleep, supplements, intimacy and employment issues, to name a few.”

Upon joining the Board of Trustees, Dr. Crabtree-Hartman was recruited to the Chapter’s Program Committee which looks at the critical needs of people living with MS in Northern California and develops a plan to meet these needs through our programs and services. “I have many ideas about how to improve care and quality of life for people living with MS,” Liz said. “I look forward to getting to work and hope my participation will benefi t those who look to the National MS Society for services and support.”

Check out these upcoming volunteer-driven fundraising events to support the MS Movement. To set up your own fundraising event, contact Sarah Hester at 800-344-4867 or [email protected]

Volunteer -Driven Fundraising Events

Pavilions Spring into Fashion, Fashion Show and LuncheonMay 17th, 11:00 a.m.Ruth’s Chris Steak House at 501 Pavilions Lane, SacramentoTickets, tables and sponsorships available ranging from $50 to $1,000To reserve your seat or make a donation, please call 916-552-3795Special thanks to our sponsors,

7th Annual DuskBuster Run/WalkJune 4th, 7:00 p.m.Golden Gate Park, San FranciscoRegistration fee is $25, additional fundraising encouraged! To register or donate, go to www.duskbuster.org or call 415-307-1382


CH

AP

TE

R N

EW

S

Bike MS: Waves to Wine Ride 2008 will mark the 20th year Eileen Wheeler will be volunteering

with the National MS Society, Northern California Chapter. It all started when Eileen’s husband, William, bought a new bike that he stored in the house. Eileen fi nally had enough of moving the bike from room to room and told William to fi nd something to do with the bike before she put it outside.

They found a fl yer for the Northern California Chapter’s Bike MS: Waves to Wine event and decided to get involved. “After learning more about multiple sclerosis, the work of the MS Society, and the ride, we thought it sounded like a fun event and a great cause,” Eileen said.

Eileen ended up volunteering in the offi ce prior to the ride, helping with registration the morning of the ride and then assisting with lunch during the ride. A year later, Eileen was asked to be a volunteer captain, and later on was invited to join the Waves to Wine planning committee.

Year after year Eileen has continued to volunteer with a contagious smile and

loads of energy. “As long as I have breath, I will fi ght for the cause and cure of MS,” she said.

“Working with Eileen is an

absolute dream! Whether we’re packing storage units and trucks, preparing mass mailings, or serving food to hungry riders, Eileen is always there with an encouraging smile,” said Sarah Hester, Volunteer Coordinator.

Chapter President David Hartman recalls: “I fi rst met Eileen and Bill at Waves to Wine in 1988, when we were all unloading the breakfast truck at 3:00 a.m. Eileen was everywhere, taking care of just about anything that needed to be done. Over the years, Eileen has always had a leadership role, but regardless of the title, most of us still refer to her--aff ectionately--as “the lunch lady,” partly as a tribute to her brilliant idea many years ago to serve hot soup at lunch. Eileen has been the glue for our Waves to Wine volunteer leadership team, and we are truly grateful for her commitment to the Chapter.”

If you would like more information on volunteer opportunities at our events or in one of our three Chapter offi ces, please contact Sarah at [email protected] or 800-344-4867, option 2, ext. 118.


The MS movement gained serious momentum during this year’s MS Awareness Week, held March 10 – 16, 2008. Supporters

from all over the world were asked to take time during MS Awareness Week to do something NOW to show their commitment to ending MS. And they responded with a resounding YES WE CAN!

If you missed this year’s activities, don’t worry, it’s never too late have an impact on the lives of people living with MS. Large or small, each of our actions to raise awareness, raise funds or involve others in the MS movement has an impact. Following are some ideas for getting involved:

Call or email your legislators about an issue important to people with chronic illness – read about current issues on page 16 Sign up to participate or donate to Walk MS: Northern California being held in 11 cities on May 3rd and 4th. Begin training for Bike MS: Waves to Wine, a two-day bike tour from San Francisco to Healdsburg being held on September 13 & 14. Volunteer to work in one of the Chapter’s three offi ces. Send an email to fi ve people letting them know that you are their connection to MS, stating some facts about the disease and asking them to pass it on.Participate in a self-help group – see pages 18 & 19 to fi nd one near you.

n

n

n

n

n

n

What Will You Do? It’s Time to Join the Movement!

Take advantage of one of the many client programs available to you and your family – see the calendar insert for details.

Elsa RiveraDiagnosed with MS in 2000

“I will lead a Spanish-speaking self-help group in Oakland and continue my outreach eff orts in the Latino MS community.

Peggy DiNoccoDiagnosed with MS in 2000

“I will ask my friends and family to be a part of Team FNDAWAY at this year’s Walk MS event. We’ve set a goal of raising $16,000!”

Dan FritzHas a relative living with MS

“I will ride my bike from San Francisco to Healdsburg for the Bike MS: Waves to Wine ride in September, and encourage my team,

Kaiser Cruisers to raise $40,000 toward a cure!”

n

FU

ND

RA

ISIN

G


FU

ND

RA

ISIN

G

What will your legacy be?

A bequest is about more than supporting a great cause. What you put in your will is your legacy. It is one of the ways that people

will remember you.

Estate gifts or bequests can be a donation of general support. Or they can be specifi c to your personal vision. For instance, a bequest might be restricted to research in a specifi c area, such as genetics or MS triggers. Or it can be earmarked for services,

such as emergency loans, college scholarships, or educational programs.

Bequests may be a specifi c amount or they may represent a percentage of your total

estate. “Residual” bequests can be set up to help fund the National MS Society after family and friends are provided for.

Estate planning experts suggest:∫ Consider possibilities. Plan for life’s

uncertainties.∫ Organize. Identify all your assets and

liabilities.∫ Inform your potential beneficiaries. By

letting us know of your plans, we will thank you with recognition in our Pillars of Society program.

People who include a bequest to the National MS Society in their will send a strong message: they believe in the work the Society is doing and want to help move us to a world free of MS.

∫ Use caution. Consult a qualified estate planning attorney. Careful planning may save your loved ones from complex probate procedures and taxes.

The next stepSociety staff can give you all the information and materials you and your advisor need to develop a bequest that refl ects your values and fi ts your estate plan. Investing your assets to refl ect what you consider most important can be deeply satisfying.

Ask for our brochure, “Creating a Legacy for Tomorrow.” For more information please contact David Scholder, Planned Giving Specialist, at 310-479-4456, ext. 121.


FU

ND

RA

ISIN

G/N

EW

S NEWS Flash• Success!

The President signed the Defense Appropriations funding bill (H.R. 3222) on November 13, 2007, in response to the voices of more than 100,000 MS activists urging Congress to increase federal funding for MS research. MS research is now eligible for funding under the Department of Defense (DoD) for the first time ever. Get the full story at nationalmssociety.org/advocacy.

• MS films available on YouTubeView five short films by and about people living with MS shown in the first annual “Moving Forward Film Festival” sponsored by the Society. Go to youtube.com and search for “Moving Forward Film Festival.”

• Proof that the MS drugs delay disabilityThere’s been ample proof that Avonex, Betaseron, Rebif and Copaxone decrease both the number of active MS attacks and “silent” damage in the brain or spinal cord as seen on MRI for people with relapsing forms of MS. Now a team of Canadian researchers has published a review of clinical experience over more than 20 years, before and since DM drugs came

MS LifeLines is proud to serve as Presenting Sponsor of Walk MS: Northern California. It’s just one way we can show our support

for people living with MS.

Coping with MS is challenging enough without having to worry about the cost of your MS therapy. That’s why EMD Serono is off ering MS LifeLines Access Made Simple, a new program that can help you get aff ordable access to the therapy you need regardless of your fi nancial status (subject to meeting eligibility requirements).

Through the MS LifeLines Access Made Simple program, you may be eligible to receive Rebif (interferon beta-1a) at no cost, or for no more than $50 per month, for up to one year of treatment. Best of all, MS LifeLines takes care of all the paperwork.

MS LifeLines Access Made Simple is intended for patients with relapsing forms of MS, who have either been newly prescribed Rebif or who have restarted Rebif therapy after having discon tinued for more than 90 days.

If you are currently using Rebif to manage your disease and are experiencing diffi culties paying for your medicine, our Patient Assistance Program may be able to help. Our Reimbursement Specialists are trained in understanding the many state, federal and pharmacy assistance programs that off er funding for people living with MS.

MS LifeLines cannot guarantee that you will receive insurance coverage or reimbursement for your therapy, but we will do our very best to help you.

To learn more about MS Life Lines programs, call 877-447-3243 or visit www.mslifelines.com

Walk MS Sponsor Highlight: MS LifeLines


NE

WS into use. According to their estimates,

these drugs also delay disability—signifi-cantly. Visit nationalmssociety.org/bulletins.

• The MS Technology Collaborative survey resultsPeople with MS may not take advantage of features that could make their computers and electronic devices easier to use. Even so, technology plays a vital and increasingly important role in their lives. These are some of the key facts that surfaced in an important survey this spring. Read the results at mymsmyway.com/survey.html.

• Take a personal tech snapshotGet a quick pic of solutions to problems, such as reading text on the screen or using a mouse. Visit mymsmyway.com and answer a few simple questions on the Snapshot quiz. You’ll get customized information detailing solutions—including many that are low cost.

• International MS meeting reports on new therapiesLast October the European Committee for Treatment and Research in MS (ECTRIMS) met in Prague and reported on studies in MS development that are building a better picture of the differences between progressive and relapsing forms of MS. The meeting also reported on new drugs just beginning their trip through the long process of testing. Among them

are MS vaccines, monoclonal antibody treatments, blood or bone marrow transplantation, and a drug composed of a synthetic fragment of myelin protein, the material that insulates healthy nerve fibers.

To learn more about the findings, visit nationalmssociety.org/bulletins and look for Research Progress Reported at International ECTRIMS Meeting, or ask us for a copy.

In September 2008, ECTRIMS—along with its counterparts in North America (ACTRIMS) and Latin America (LACTRIMS)—will meet in Montréal for the World Congress on Treatment and Research in MS. As the organizing body for ACTRIMS, the Society is pleased to provide logistical support for this important meeting of MS researchers and clinicians.

• Momentum is the new InsideMSThe Society’s national magazine is now Momentum, an 80-page quarterly. If you have MS, Momentum is a Society benefit. Others may request it with their contributions. Call us for information.

Some back issues of InsideMS (which began publication in 1983) are available at nationalmssociety.org/magazine.


NE

WLY

DIA

GN

OS

ED Looking Good

Beauty is only skin deep, but feeling attractive can lift your spirits and help you face the world.

So whether the staff at Frédéric Fekkai salons knows you on sight or you’re a “wash-n-go” type, here are some tips for looking your personal best.

∫ Start with the basics. Eating right and

getting enough sleep are the

foundation for looking good. Not even fashion

models can get away with dark circles

under their eyes.

∫ Take care of your smile. An MS diagnosis doesn’t mean you can skip going to the dentist—don’t you wish! A great smile can go a long way in brightening your day, so keep those appointments. And check out energy-conserving devices like electric or battery-operated toothbrushes.

∫ Pamper yourself. Take time to do something nice for yourself, out of your usual routine: a massage, a good haircut, a bright scarf or a new cap.

∫ Get tips and tricks from the pros. “Occupational therapists can help you

with ideas and little tricks, such as how to shave safely or hold your hairbrush if you’re having numbness in your hand,” said Gail Hartley, a nurse practitioner with Neurology Consultants in Arcadia, California.

∫ Accessorize! Turn assistive devices into great-looking accessories. Decorate devices with colorful fabrics. Splurge on a carved cane. “Men, in particular, like hiking sticks, because they look cooler than canes,” Hartley told MSConnection. But first consult a physical therapist to make sure you’re using the safest and most appropriate device and using it properly.

∫ Ask for help. Hartley remembered a person with MS who showed up to each appointment perfectly groomed. Her stylist? Her husband, who learned to do all of her makeup. Ask partners, friends, or family to help with hair, makeup, nails or clothes. They like it when you look good.

∫ Be who you are. If pedicures weren’t part of your life before your diagnosis, then don’t feel obliged to have them now if you won’t really enjoy them. As Hartley said, “You are the same person today that you were before you got the diagnosis.”

Madeleine Prince is a freelance writer and editor.

By Madeleine Prince


Handling an MS attack

An exacerbation (also called an attack, a relapse, or a fl are) is caused by infl ammation in the central nervous system, which

leads to a sudden worsening of an MS symptom or symptoms, or the appearance of new symptoms. An exacerbation usually lasts several days to several weeks. While you may not be able to change the fact of an exacerbation, you can work on changing how you respond to it. Here are some tips:

So you missed your workout, had a fi ght with your spouse and ate a giant piece of chocolate cake—none of those caused your exacerbation. An exacerbation doesn’t mean you did something “wrong,” so don’t stress trying to fi gure out why it happened.Most exacerbations resolve on their own, or your doctor may prescribe a course of steroids if your symptoms interfere with work or life at home. It’s important to get the rest you need and talk to your doctor about the best way to manage whatever symptoms you are having.An exacerbation doesn’t mean your disease-modifying medication isn’t working. In fact, none of the available medications stops the disease completely. Work with your doctor to decide if your current medication needs to be changed.“Pseudoexacerbations”—temporary aggravations of MS symptoms—can happen if you get overheated, overtired, or run a fever. The symptoms will gradually disappear as your body temperature returns to normal. But if you’re worried—or the symptoms don’t get better—don’t hesitate to call your doctor.

Adapted from “The Emotional and

n

n

n

n

Psychological Impact of Multiple Sclerosis Relapses,” by Rosalind Kalb, published in the 2007 Journal of the Neurological Sciences, Volume 256, Pages S29-S33.

All Hail Inventions

The da Vinci Awards recognize innovative adaptive and assistive technologies that can overcome challenges as much as their users do.

The 2007 recipients of the awards, founded by Michigan chapter volunteer Michael Rokosz, were honored in September at a black-tie dinner at the Ritz-Carlton Hotel in Dearborn, Michigan. This year’s winners include:

High tech mobilityWalkAide (walkaide.com) uses electrical stimulation to help people with foot drop. This battery-operated device, approved by the FDA in 2006, is worn just below the knee and costs $4,495. Not all causes of foot drop will respond to the WalkAide technology, so a careful assessment by a professional is necessary. Insurance companies may not reimburse the cost—ask your insurer.

Conquering the car

Another recipient was the Handybar (handybar.com). This aff ordable lightweight portable

handle with a nonslip grip fi ts into car doors to provide support when getting out. But you may not need to get out

LIV

ING

WIT

H M

S


Research Directions in Multiple SclerosisThis brand-new publica-tion—written by Drs. John Richert and Diana M. Schneider—explores recent advances in MS research: what we know now, and where research will be headed for the next decade. Dr. Richert is the executive vice president of Research and Clinical Programs at the Society and Dr. Schneider is president and CEO of DiaMed, LLC/DiaMedica Publications. To download a free copy, go to nationalmssociety.org and visit the Brochures section of the Library. Or call us to have a free copy sent to you.

as often, thanks to the FuelCall System (inclusionsolutions.com/gasstations.htm). FuelCall allows drivers with disabilities to push a button at a service station that signals employees to refuel their car. Visionary technologyEagleEyes (eagleeyes.org) is a program developed by Boston College that allows users to point and click at a computer screen using eye movements. Boston College recently signed a licensing agreement with the Opportunity Foundation of America to build miniature EagleEyes and distribute them free to universities, special needs schools, centers for assistive technology, and non-profi t organizations in the U.S. and U.K.Nominees for the da Vinci Awards represent an international spectrum of sciences, technologies, and industries. Nomination forms for the 2008 da Vinci Awards are available at davinciawards.org and submissions are due by May 19, 2008.

New on our Web siteNew Video: The Clues of Epidemiology

Are you more likely to have MS if you’re a man or a woman? Over 30 or under 30? If you live at the beach or in the mountains? What

do “clusters,” or high concentrations of people with MS in specifi c geographical areas, tell us about the disease?

Discover the answers—and the relevance of these questions for people living with MS—in the Society’s new MS Learn Online video series, The Clues of Epidemiology.Emmy Award-winning broadcast news anchor Anne Trujillo explores epidemiology, or the study of disease patterns, in this two-part documentary,

featuring internationally renowned epidemiologists.

To view the two 15-minute segments, go to nationalmssociety.org/mslearnonline.

Focus on Employment: How to Stay in the GameThis PDF-only Web publication is a reprint, with updates, of a special section of InsideMS from 2006. Read about:

When to disclose—and why you may or may not want toThe Americans with Disabilities ActManaging fatigue and cognitive issues at workWorking from home on the phone.

To download a free copy, go to nationalmssociety.org and visit the Brochures section of the Library. No Web access? Call us and we’ll send you a copy.

n

n

n

n

LIV

ING

WIT

H M

S


RE

SE

AR

CH

Progress made in repairing MS damage

With aggressive funding from the National MS Society and many other sponsors, researchers are pursuing ways to reverse the

damage done by MS to nerve fi bers and the protective myelin coating that surrounds them.

Encouraging results have emerged from two recent laboratory studies.

Mayo Clinic zeroes in on an antibodyIt may not have the most memorable name, but rHIgM22 recently made news when Dr. Moses Rodriguez and his Mayo Clinic team reported success in repairing myelin when they injected a single dose of this monoclonal antibody into mice with an MS-like disease.

The results were presented at the 132nd Annual Meeting of the American Neurological Association in October 2007. Although these fi ndings will need to be confi rmed by further animal and human studies, the results take us one step further to stimulate myelin repair in people with MS.

Block that LINGOResearchers funded by Biogen Idec, Inc., which makes the MS disease-modifying drug Avonex, recently reported success in repairing myelin in mice by blocking a myelin molecule called LINGO-1. Dr. Sha Mi

and colleagues wrote about their fi ndings in the September 30, 2007, online edition of Nature Medicine.

LINGO-1 is part of a complex of molecules within myelin called the Nogo receptor complex that has been shown to inhibit the regeneration of nerve fi bers. In an earlier study, published in the March, 2004, issue of Nature Neuroscience, Dr. Mi’s team reported that remyelination occurred and the health of nerve fi bers improved when LINGO-1 was disabled.

In the current study, the Biogen team fi rst induced EAE, an MS-like disease, in mice with and without LINGO-1. Both groups

developed EAE symptoms, but they were signifi cantly milder in mice without the molecule. Studies of tissue samples showed signifi cant myelin repair in these mice as well.

The team then administered a LINGO-1 antibody capable of blocking LINGO-1 activity to mice that already had symptoms of EAE. The treatment stabilized disease progression after two weeks. Tissue analysis showed that treatment reduced nerve fi ber damage and enhanced myelin repair in the spinal cord, compared with untreated mice.

According to a recent Biogen press release, the company plans to continue researching this possible new approach to MS treatment.


CL

INIC

AL

TR

IAL

S

Lists of current clinical trails for persons with MS may also be found online at www.nationalmssociety.com/can/clinicaltrials .

Clinical Trials

Marijuana Study for MS: Patients with Muscle Stiff ness

Name of physician: Mark Agius, M.D.

Purpose of study: The goal of this study is to learn if marijuana is an eff ective treatment for muscle stiff ness in people with MS. This study uses new techniques to measure the immediate and long term eff ects of marijuana on muscle stiff ness.

Eligibility: You may be eligible if you have been clinically diagnosed with MS and are 21 or older. You may not be eligible if you have smoked marijuana in the past 4 weeks, are unable to stop smoking marijuana or tobacco cigarettes for the duration of the study (2 months), have a cardiac or respiratory condition, cannot commit to clinic visits, cannot fi nd reliable transportation to and from clinic visits, cannot, or are not, willing to smoke one

study drug cigarette daily for the duration of the study (2 months), or are currently involved in another drug study.

Details: Study duration is up to 5 months. You will be asked to take 2 pills and smoke 1 cigarette every day of the study. There will be 7 visits over a 2 month period in which a variety of tests will be conducted. There will be a follow-up visit at month 4. You are not allowed to drive for the duration of the study. The pills, the cigarette or both may be a placebo and contain no THC. (THC is the active ingredient in marijuana.) You are not allowed to smoke for the duration of the study, other than the study drug. You are not allowed to smoke marijuana or tobacco 1 month prior to the study. Four of the 8 visits will be up to 5 hours long. We will ask for blood samples at certain visits.

Contact: Janelle Butters, R.N., UC Davis Health System, 916-734-6276.

MAESTRO Secondary Progressive MS Medical Research

Purpose of study: Doctors are currently looking for adults who have been diagnosed with secondary progressive MS (SPMS) to participate in a medical research study evaluating the safety and eff ectiveness of an investigational SPMS medication.

Eligibility: To be eligible for this study, you must be between 18 and 65 years of

age, have a medical diagnosis of SPMS and have an absence of relapse in the 3 months prior to starting the study.

Details: Qualifi ed participants will receive study-related medical evaluations and investigational medication at no cost. Reimbursement for time and travel will also be provided.

Contact: To learn more about this study, please call Janelle Butters, RN at 916-734-6276


African-American Multiple Sclerosis Genetics Project.

Purpose of study: The MS Genetics Group at the University of California at San Francisco is dedicated to fi nding the genetic causes of MS. This knowledge will create new opportunities to prevent and cure this life-altering disease. The more people who participate in this project, the closer we come to understanding the causes of MS. We handle medical records and personal information you share with us

in a strictly confi dential manner.

Eligibility: If you or a family member has been diagnosed with MS, we invite you to become involved with the African-American Multiple Sclerosis Genetics Project.

Contact: Clinical Coordinator, UCSF Department of Neurology, San Francisco, CA 94143-0435, or call toll-free 866-MS-GENES or 866-674-3637, or visit www.ucsf.edu/msdb.

FILMS Survey Study

Purpose of study: MS patients needed to volunteer 2 hours to participate in a study to develop a quality of life questionnaire. Volunteers will be asked to come to the offi ce of East Bay Physicians Medical Group or the Alta Bates Summit Medical Center Research and Education

Institute on two occasions to complete several questionnaires and a brief interview. In appreciation of the time spent, each volunteer will receive $25 for each of the 2 required visits.

Contact: To inquire, call study coordinator Mark Wesson at 510-204-5094.

CombiRx.

Purpose of study: Patients with relapsing remitting multiple sclerosis are needed for a clinical trial studying the combination of two FDA-approved treatments at UC Davis Medical Center. All subjects will receive at least one active, FDA-approved agent.

Eligibility: The study is open to male and female subjects between the ages of 18 and 60 who have been diagnosed with relapsing remitting multiple sclerosis and have not been on previous immunomodulating therapies.

Contact: Please call the UC Davis Medical Center, 916-734-6276.

FREEDOMS

Purpose of study: The UC Davis Multiple Sclerosis Program is pleased to announce its participation in a study of the new oral treatment, fi ngolimod, for relapsing remitting multiple sclerosis (MS). It is believed that slowing the progression of multiple sclerosis depends on early diagnosis and appropriate treatment. The goal is to determine whether this drug will reduce relapse rates, slow the

progression of disability and evidence the changes in the MRI similar to the available medications.

Eligibility: Age 18 to 55, have had a relapse within past 12 months or 2 relapses within past 24 months, ability to walk without aid, currently not on treatments for MS.

Contact: Contact the UC Davis Multiple Sclerosis Program, 916-734-6276.

CL

INIC

AL

TR

IAL

S


AD

VO

CA

CY

California Governor Arnold Schwarzenegger recently released his FY 2008/09 budget while declaring a

fi scal state of emergency which triggers a special session of the legislature for consideration of budget cuts.

A number of proposals in the budget seriously aff ect persons with MS on Medi-Cal including:

Elimination of certain so called “Medi-Cal optional benefi ts” for adults including incontinence creams and washes, acupuncture, dental, audiology, optometry, optical, chiropractic, podiatry, psychology, and speech therapy. 10-percent provider payment reduction on most Medi-Cal fee-for-service and managed care providers Suspension of the June 2008 and June 2009 state Cost of Living Adjustments (COLAs) for Supplemental Security Income (SSI)/State Supplemental Payment (SSP). Across-the-board reduction in service hours for non-medical domestic and

n

n

n

n

MS-CAN Advocates Against Deep Cuts in Medi-Cal Services

related services to the In-Home Supportive Services (IHSS) recipients. These services include meal preparation, meal clean-up, laundry, food shopping, and errands.

In early March, over 50 MS Activists joined forces with representatives from more than seven other neurological groups including the ALS Association, Epilepsy

Foundation, and Huntington’s Disease Society of America to visit every single member of the state legislature and educate them about the harsh impact these proposed cuts would have on persons with neurological chronic illnesses and their loved ones. If you would like to get involved in our ongoing eff orts to oppose the hurtful impact that these reductions in services will have to our most vulnerable members of the MS Community, please contact Stewart Ferry at 800-344-4867, option 2, ext. 124. This budget battle is likely to last at least until mid-summer and our statewide activist network is making this our number one legislative priority.

Help improve health care and other programs and services for people with MS. Join the Northern California’s Action Alert program, and you’ll receive periodic updates on what the chapter is doing at the State Capitol to improve public

policy for people with MS. Also, we’ll let you know how you can be a local and national advocate, whether it’s by raising awareness in your community or contacting your legislators. To join Action Alert, contact Stewart Ferry at [email protected] or 800-344-4867, option 2, ext. 124.

Join Action Alert

17TOLL FREE NUMBER 1 800 344 4867

MO

NE

Y M

AT

TE

RS

Finding Legitimate Internet Jobs

An estimated 45 million Americans worked from home in 2006, up from 41 million in 2003*. For people with disabilities,

telecommuting may off er a way to keep working despite mobility or fatigue issues.

The kinds of work that can be done at home include auditing, data entry, design, editing and writing, litigation coding, medical and legal transcription and more.

Is telecommuting right for you?“Most of our calls are from people with disabilities who want to work from home,” Kim Cordingly, PhD, told MSConnection. Dr. Cordingly is a self-employment consultant at the Job Accommodation Network (JAN), a service of the U.S. Department of Labor that provides information on job accommodations, self-employment and small business opportunities.

“Legitimate jobs exist, but it’s important to be a good consumer when looking for online work,” Dr. Cordingly advised. To help people avoid scams, the Federal Trade Commission’s “Work at Home Schemes” page (ftc.gov/bcp/menus/consumer/invest/workhome.shtm) lists popular schemes, such as coupon scams and fraudulent medical billing opportunities, and how to avoid them.

“If for any reason you feel unsure about a company or what they’re off ering, feel free to investigate,” Dr. Cordingly said. First, check with the Federal Trade Commission (ftc.gov) and the Better Business Bureau (bbb.org) to see if any complaints have been fi led against the company. It is also okay to ask for references—contact information for other people doing similar work for the company so you can ask them about their experience.

Get readyTeleworktools.org provides a comprehensive toolkit for potential teleworkers, including a self-assessment questionnaire, information on benefi ts and fi nancial help, and an exhaustive list of links to telecommuting resources on the Web.

Get set upDr. Cordingly highlights two organizations that specialize in helping potential telecommuters fi nd work.

The National Telecommuting Institute describes itself as “a unique educational/job-matching organization.” NTI staff work together with employers, vocational rehabilitation agencies, and people with disabilities to help potential employees train for and work online.

CORA Works trains and mentors people with disabilities and matches them with the needs of employers.

Go: ResourcesCORA Workscoraworks.comPhone: 800-571-2397Job Accommodation Networkjan.wvu.eduPhone: 800-526-7234; TTY: 877-781-9403National Telecommuting Institutenticentral.org

Phone: 800-619-0111*According to a 2007 meta-analysis of 46 studies of telecommuting published in the Journal of Applied

Psychology (Vol. 92, No. 6).


For a current listing of our self-help groups, please visit www.nationalmssociety.org/can, then click on Client Programs, then Emotional Support, then Self-Help Groups.

Northern California Self-Help Groups

Alameda CountyAlameda, Sharon 510-521-6260 or Ray 510-522-5210 Berkeley, Toni 510-735-7890East Bay Lesbians, Jane 510-444-5257 Fremont, Kim 510-793-0765 Oakland, Barbara 510-482-0266 Oakland: African Americans, Jane 510-865-3698 Oakland: Latinos, Elsa 510-777-1414 Tri-Valley Pleasanton, Mary Beth 925-829-0832

Contra Costa CountyBrentwood: MS for lunch bunch, Kathy 925-286-7674 or Julie 925-513-4686 Mt. Diablo (Concord), Oscar 925-673-0984 (Call between 6:30-8:30pm Mon-Thurs.) El Cerrito, Sylvia 510-559-9319Richmond, Vanda 510-559-1898

El Dorado County Placerville, Fred and Stacey 530-644-1188

Humboldt County Eureka, Ann Louise 707-839-0177 or Kim 707-445-9803

Marin CountyCorte Madera, Verita 415-927-7068 or Anita 415-892-5548

Mendocino CountyMendocino, Joanne 707-937-4929

Merced CountyMerced: MS Challengers, Susan 209-384-6533

Monterey CountyMonterey, Susan 831-659-1354 or MaryLee 831-373-2450

Napa CountyNapa, Colin 707-944-2262 or Penelope 707-265-9680

Nevada CountyGrass Valley, Helen 530-268-3127 or Dan 530-272-7636

Placer CountyAuburn, Ruth 530-888-8388 Roseville: Minimal Symptoms Group, Brett or Kelly 916-773-6799 or [email protected], Marcia or Jerry 916-408-7899

Sacramento County Elk Grove, Willie 916-684-1677 or Dorothy 916-684-6849Sacramento: Moving on with MS, Sylvia 916-349-1324 South Sacramento, Edie 916-688-2674

San Benito CountyHollister Group, Gina 831-636-3241, Robin 831-636-0930 or Helen 831-637-6267

San Francisco CountySan Francisco Forum, Dolores 415-467-6186 or David 415-585-9851 SF Potluck Luncheon, Karen 415-584-6115 (Meets periodically) SF Sunset District, Tatiana 415-665-1178

SE

LF

-HE

LP

GR

OU

PS


SE

LF

-HE

LP

GR

OU

PS

San Joaquin County Stockton, Brenda 209-951-0536 or Mary 209-334-5670Stockton, Betty 209-368-6026Tracy, Linda 209-833-6882

San Mateo CountyNEW – Now Forming! San Mateo, Eli 650-377-1970San Mateo, George 650-593-5154

Santa Clara CountyMilpitas, Indu 510-656-3408Palo Alto, Phyllis 650-321-9081 or George 650-593-5154 San Jose, Cor 408-270-8922 or David 408-578-3752Santa Clara, Brian 408-739-9445 or Susan 408-253-4489

Santa Cruz CountyCapitola, Tom 831-684-2252Or Ada 831-440-1211

Shasta County Hope 4 MS, Beth 530-246-8404 or Patricia 530-222-7277 or Robin 530-246-2980

Siskiyu CountyNEW – Now Forming! Yreka, Wynonna 530-842-1849

Solano County Vacaville, Debrah 707-447-9603 (before 7:00 pm) or Marian 707-422-7515 Vallejo, Pam 707-745-3704 or Marian 707-745-9333Solano County Group, Pam 707-745-3704

Sonoma County Santa Rosa, Debbie 707-569-9976 NEW! Rohnert Park / Petaluma, Debbie 707-569-9976 Healdsburg, Kate 707-433-9194Sonoma Women’s Group, Noreen 707-933-9500

Stanislaus County Modesto, Pati 209-524-8329 Turlock, Bill 209-664-1427 or Frances 209-667-2184

Sutter CountyYuba City, Evon 530-701-2189

Tehama CountyRed Bluff , Teresa 530-529-4412 or Jodine 530-528-8767

Tuolumne CountySonora, Steven or Gloria, 209-532-5646

Did You Know...

Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. National MS Society medical advisors recommend that people with MS talk with their health care professional about using

one of these medications and about strategies and eff ective treatments to manage symptoms. If you or someone you know has MS, please contact the Society today at www.nationalmssociety.org or 1-800-FIGHT-MS to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

150 Grand AvenueOakland, CA 94612

FORWARDING SERVICE REQUESTED

Northern California Chapter

NON-PROFITORGANIZATIONU.S. POSTAGE

PAIDSALT LAKE CITY, UT

PERMIT NO. 6699

THIS MAGAZINE IS DESIGNED AND PUBLISHED BY NEWSLETTERS INK CORP. 1.800.639.0465

The CSI program is a chapter information and resource gathering program conducted by trained volunteers known as Community

Service Investigators or CSI’s. Through the devoted eff orts of our CSI’s we will build the most robust database possible to serve people with MS across the country. These resources will help continue the movement.

CSI volunteers assist in identifying accurate and accessible resources for people aff ected by MS. The information about these resources helps the society to provide high quality referrals and services throughout all communities in the chapter.

The ideal volunteer for this position should possess the following qualifi cations:

Community Service Investigator ProgramAbility to represent the National MS Society in a professional mannerStrong organizational skillsAbility to engage others in conversation and solicit needed information Eff ective verbal and written communication skillsComputer skills preferredTime commitment of 2-4 hours per month to initiate call with local providers and 1-2 hours per month for planning and reporting

If you are interested in JOINING THE MOVEMENT please help us by dedicating a few hours of your time to becoming a CSI. For more information please contact Kim Rivers at 800-344-4867 ext. 123. Don’t miss this opportunity to play a vital role in your Chapter’s success!

n

nn

n

nn

ms connection may 08

Documents

curewalk ms

ms tshirt

ms manager

ms lifelines

walk site

similar products

d f r e e o f

diff erent programs