summer 2013 NatioNal ms society

oregoN chapter

ms coNNectioN Newsletter

iNsiDe this issue

03upcomiNg eveNts + programs

06oNe step at a time: walk 2013

08scholarship recipieNts for 2013

12moviNg forwarD: accessible trails

page 11this is why we riDe

2 ms coNNectioN: summer 2013

Summer is here and Bike MS is on my mind. We’re preparing for a fantastic weekend

at Western Oregon University, August 2 – 4, 2013.

Bike MS is such a unique event. Riding anywhere from 32 to 158 miles over two days, cyclists make the commitment to challenge themselves to raise dollars and awareness and make an impact in the fight against MS. Seasoned or novice cyclists are all welcome. Not a veteran rider? No problem. With unparalleled medical, me-chanical and rider support, even novice cyclists are encouraged to join us. Whether participating as a donor, volunteer, spectator or rider, It’s an extraordinary weekend filled with an infectious en-ergy like nothing I’ve ever experienced before.

Best of all? The funds from Bike MS supports programs and ser-vices, advocacy and research. Crossing that finish line is more than a physical accomplishment; it’s a statement of dedication and stamina to be in this fight until we find a cure.

I hope to see you on the road!

Sincerely,

Chapter President

Board Members: Mike Pongon, Board Chair David Kelleher, Immediate Past Board Chair Ronald Merryman, Audit & Vice Chair Nanette Reid, Board Secretary Ralph Cole, Treasurer Lisa Roth, Chapter President Alisa Brake Stanley Cohan, MD, PhD Ryan DuChene Dina Glassman Rusty Grim Craig Leis Robert Moore Brent Nagy Chad Rheingold Lee Shaver Michele Smeller Brie Stoianoff Michelle Waddell Lisa Welch Vijayshree Yadav, MD, MCR

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National MS Society recommends that all questions and information be discussed with a personal physician.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.

© 2013 National Multiple Sclerosis Society, Oregon Chapter

MS Connection is published by:

5331 SW Macadam Ave Ste 290Portland, OR 97239-3847

National Multiple Sclerosis SocietyOregon Chapter

letter from the presiDeNt

goiNgthe DistaNce

3Defeatms.com | 1-800-344-4867

upcomiNg in 2013 — save the dates

eveNts +programs NatioNal ms society 1-800-344-4867 option 1 • defeatms.com

Summer Saturday Series Program Emotional Wellness: Self-Acceptance Portland, OR • Saturday, July 20 10 -11:15 AM • Speaker: Polly Campbell

Intimacy & Family Planning — Teleconference Thursday, August 1 • 6:30-7:30 PM

Bike MS Monmouth, OR & Willamette Valley Friday-Sunday, August 2-4

Summer Saturday Series Program Emotional Wellness: Striving for Happiness & Fulfillment Portland, OR • Saturday, August 17 10 -11:15 AM • Speaker: Rachel Carter

National MS Society Family Day Portland, OR • Saturday, August 24 Details and registration to be available soon.

A Night in the Park Gala Director Park in Portland, OR Thursday, September 12

Summer Saturday Series Program Wellness in Your Home: Safety & Accessibility • Portland, OR Saturday, September 21 • 10 -11:15 AM Speaker: Melissa Mott, OTR/L, CAPS

ohsu ms ceNter 503-494-7661 ohsu.edu/ms then click on News & Events

Brown Bag Lunch Program: Tecfidera: The New Kid on the Block Portland, OR • Friday, July 12 11:30 AM-1 PM • Speaker: Aram Zabeti, MD

Brown Bag Lunch Program: Autoimmune Diseases & MS Portland, OR • Friday, August 9 11:30 AM-1 PM • Speaker: Vijayshree Yadav, MD, MCR

Brown Bag Lunch Program: TBA Portland, OR • Friday, September 13 11:30 AM-1 PM

caN Do ms webiNars online at mscando.org

Bladder & Bowel Issues: To Pee or Not to Pee Tuesday, July 9 • 5-6 PM PST Speaker: Susan Kalota, MD

Managing Speech, Language & Cognitive Challenges Tuesday, August 13 • 5-6 PM PST Speakers: Pamela H. Miller, MS, CCC-SLP & Janet DeClark, MA, CCC-SLP

TBA Tuesday, September 10 • 5-6 PM PST

Learn more via Webcasts & Podcasts: nationalmssociety.org/MSLearnOnline

4 ms coNNectioN: summer 2013

free eDucatioNal recorDiNgsIf you missed these recent programs, you can access the recordings…

Sleep Problems & MS with Joanna Cooper, MD nationalmssociety.org/chapters/orc/programs--services/programs-in-the-west/index.aspx and click on Listen Here under Did you miss a call?

Living Well with MS – Lifestyle, Diet & Complementary Therapies with Brenda Banwell, MD; Allen Bowling, MD & Timothy Coetzee, MD nationalMSsociety.org/webcast

Aging with MS with Gail Hartley, MSN, NP, MSCN & Terry DiLorenzo, PhD mscando.org/webinar-series

Newberry Music Festival La Pine, OR

Friday-Sunday, August16-18 www.facebook.com/ TheNewberryEvent

Do it yourself fundraising is an opportunity for people in our chapter area with a deep commitment to the MS cause, to raise aware-ness and critical funds for the MS Movement in new and creative ways. For more informa-tion, visit www.defeatMS.com

5Defeatms.com | 1-800-344-4867

Individuals with MS can apply for help with purchasing eligible products or services in these categories:

•Respite Services (e.g. adult day care)•Medical Equipment (purchase or repair)•AccessibilityModifications(home,auto)•Transportation (MS-related appts.)•CriticalShortTermNeeds(rent,utilities)•Health & Wellness Classes

To apply, contact:

1-800-344-4867 option 1 defeatMS.com

The National MS Society, Oregon Chapter

...has a financial assistance program?

we welcome

aNDreaBY COURTNeY KITTeL

In March we welcomed Andrea Kofoed our Walk MS Manager. Andrea manages logistics and event sites along with building relationships,

fundraising and pulling it all together in an event that brings people together to raise profile and dollars for our mission’s work.

Andrea first became involved with the Society in Utah, as an intern and then as a volunteer for a total of seven years. Prior to working for the Oregon Chapter, Andrea worked for the state of Utah on tobacco prevention that involved a lot of guerilla marketing, social campaigns and events. Andrea has specific things she loves about she job. She loves the creativity, volunteer support and job variety. She is passionate, experienced and knowledgeable. “The thing I love the most is that strangers come together for one common purpose – to end MS. It’s mind-blowing.”

While always busy fundraising, recruiting and planning, she is also eager to hear from you. If you want to get to know Andrea better, have questions about Walk MS, or simply want to get more involved, feel free to contact her at: 503-445-8342 or Andrea.Kofoed@nmss.org.

aNDrea kofoeD

6 ms coNNectioN: summer 2013

walk ms 2013

oNe stepat atimeBY ANDReA KOFOeD

There you are, standing in your city center surrounded with friends and loved ones rubbing shoulders with complete strangers who all believe what you believe — ending MS. It is at this moment you feel the words “when the beating of your heart echoes the beating of the drum,” come to life as you, along with 5,000 others statewide, participated in Walk MS. They say MS breaks down connections, but in one day thousands of connections grew. Jennifer Holloway of the J-Walkers said, “It’s empowering to be able to connect with so many people through this great cause and that we are doing something to promote this.”

By Walking, you are helping someone in Oregon and Southwest Washington living with MS. Nanette Reid of US BANK — TeAM ReID shared, “The money that we raise is used to fund research to help find a cure for the disease. In addition, money is being used to help people who need assistance in making modifications to their homes to accommodate a wheelchair, help pay their light bill, their electricity bill. The money we raise will go to all those different fronts so it is important that we continue to increase the money we receive so we can help more and more people.”

We can’t thank everyone enough for participating this year and involving others as we move forward one step at a time in our Walk to end MS.

“ this was a powerful experieNce for me, my frieNDs aND family. i feel hoNoreD to have beeN a part of it. who kNew!” –kari muhlhauser, team fifty shaDes of k

7Defeatms.com | 1-800-344-4867

New thiNgs we DiD this yearWe wanted to spice up Walk MS this year by trying a few new things. One of which was our fantastic Walk MS Kickoff events. We were able to get together with our friends and family in the community to talk about fundraising tactics, recruiting methods and overall how to make it fun. This event would not be complete without our fabulous panel of experts who have learned a thing or two as Walk MS advocates.

Check out our blog, www.defeatMSblog.com which has been a great resource to learn more about the Walk, our Walkers and other events. We hope you will be able to share the videos and pictures we posted with others as we spread awareness about MS. A special thanks goes out to auGi, our MC for MS, for all the work he put into our videos and panel discussions.

“ the walk was woNDerful, aND keeps gettiNg better!! my frieNDs aND family look forwarD to it each year!!!” –tammy coNraD-mcelveNy, team stayiNg stroNg

We also added a photo booth where you can get your picture with “I Walk Because…” sign.

walk ms NeeDs youWalk MS is only as successful as you are! That is why we need you to join your Community Walk Committee. Your committee will meet throughout the year to set goals for your area, assign poster distribution, monitor the Walk route before the event, and spread awareness. The only qualification needed is your passion to stop MS! Meetings start in September. To participate, contact Andrea at 503-445-8342 or Andrea.Kofoed@nmss.org.

8 ms coNNectioN: summer 2013

Nathan Edwards wants to write and study to become a Journalist.

Prior to her illness, my moth-er was an artist, painter and musician. While I did not inherit her skills in the visual arts, I am able to express my-self through writing.

Allison B. Smith wants a career as a nurse practitio-ner.

I have had to learn to take care of myself and my family at times. Whether it’s laun-dry, cooking, cleaning, or dog care, everything comes as a challenge to an individual

with multiple sclerosis. Learning how to help out and do all of this on my own has not only made me stronger as a person, but has immensely helped out my family too.

Wesley G. Upton wants to study to become a physical therapist.

My experience with MS has guided me to pursue a career that can help people with disabilities. I would never have considered a health related career with-

out the influence of MS on my life. The disease was an awful set back in my mother’s life, but even she has found a positive side.

aNNouNcemeNts

scholarship recipieNts 2013The NMSS Oregon Chapter awarded seven new scholarships for 2013, ranging from $1,000 to $3,000. Recipients were selected based on aca-demics, financial need, extracurricular activi-ties, volunteerism as well as their personal essay on the impact of MS in their lives.

Bailey E. Barber wants to study to become an Obste-trician/Gynecologist.

I have learned a great deal about life and how to live one’s life through my mother’s experience with MS. I have learned how to set goals and to persevere until those goals

are accomplished, and to overcome obstacles.

Amanda J. Crowe would like to be a nurse in an area of the world where health-care is limited.

I can always remember the people I have in my life....and the loving family and fa-ther I have been given. I can remember my love of music

and the talent of playing-by-ear that I have been given. While I do not have much money or mate-rial things in my life, I have everything I need.

bailey e. barber

NathaN eDwarDs

amaNDa J. crowe wesley g. uptoN

allisoN b. smith

9Defeatms.com | 1-800-344-4867

Diy fuNDraisiNg

caDDies 4cureCaddies 4 Cure was es-tablished in 2002, by long-time friends Ryan DuChene and Justin Mar-

quart, as a way to raise money for two chari-ties close to their hearts: the National Multiple Sclerosis Society, Oregon Chapter and Legacy emanuel Children’s Hospital. In 2001, Ryan’s wife, Marci, was diagnosed with MS. Ryan and Marci have become very involved with the Oregon Chapter, including Ryan’s role on the Oregon Chapter’s Board of Trustees. They hope that their charitable efforts and dedica-tion will one day lead to a cure. each year, the Caddies 4 Cure team, staffed entirely by dedi-cated volunteers, puts together an extraordi-nary weekend of events to raise money for these two charities as well as other projects that sup-port children and families in our community. In May, Caddies raised a record $260,000 through their celebrity auction, concert and golf tournament engaging more than 450 at-tendees in a spectacular event to remember. The featured speaker that night was eight-year-old Walk MS fundraiser extraordinaire, Claire Sar-nowski. Funds from Caddies helps support our Scholarship Program, direct financial assistance program and this year’s Family Day in August.

Lara E. Zezsche wants a ca-reer in the health care field, possibly pre-med.

Even though it hasn’t always been exactly easy for my fa-ther – or any of us – to deal with his MS, I think it has opened our eyes to reality. It has made me realize that

there are some things in life that are much more important than good health.

If you are interested in donating to the National MS Society’s Scholarship Fund, please contact Dana Voelker: 503-445-8358.

lara e. ZeZsche fuNDraiser claire sarNowski

Knowledge Is Power is a six-week, free, at-home educational program for people who are newly diagnosed. Mail or email formats. To register, call 1-800-344-4867, or visit www.nationalMSsociety.org/knowledge.

JOIN The MOveMeNT®

10 ms coNNectioN: summer 2013

bike ms

keep rolliN,’ Jack!BY KeLLeY MCFATe

Since 2002, Jack esperanza has been a rider in Bike MS. After consistently raising more than $1,000 each year, Jack is considered a VIP. What makes Jack’s participation with the National MS Society especially inspiring is that he did not initially have a personal connection to MS; he became inspired to challenge himself to the ride by his friend who had terminal cancer. Prior to his first Bike MS event, the furthest he had ridden was 35 miles. When he completed the ride he was overcome with emotion, leading to his continued commitment for the past 11 years. Jack said “I was fortunate enough to ride both days and knew at that time that I would be back because of the dedication and commitment of all those involved in the struggle for MS, and the cure.” As Jack reflects on his years as a rider, his most memorable experiences include the cheers received by those with MS who are not able to participate in the ride themselves. In Jack’s words, “It was humbling to understand their challenges as I rode and felt physically fit, knowing that they faced daily struggles and mine just encompassed two days of riding.” Jack is now facing his own fight since being diagnosed with the fatal Creutzfeldt Jakob. He is now drawing more motivation than ever to

keep participating in the Bike MS event this August - “Unfortunately my disease has no cure and that in itself continues to motivate me to participate in order to at least eradicate one disease, and that is MS. I have been blessed in meeting not only dedicated people but also in developing extraordinary friendships because of my involvement with Bike MS. Those friendships have become extremely clear as I fight my disease. I just want to thank the National MS Society for the honor and privilege of being able to be involved with an organization filled with such understanding and compassion.” Jack plans to ride in August with his son to join the movement again and show his support of Bike MS, as well as serve as an inspiration for many others seeking their own motivation. On behalf of the National MS Society Oregon Chapter, thank you Jack for your dedication.

Jack esperaNZa

VOLUNTEERS needed for BIKE MS OREGON 2013

Volunteer Dates: Friday-Sunday, August 2-4 Interested? Contact Wendy Allison today:

wendy.allison@nmss.org or 503-445-8356

11Defeatms.com | 1-800-344-4867

bike ms

this is why we riDeBY KeVIN BYRNe

Since 2003, I’ve cycled with the National MS Society in Pennsylvania, New York, Delaware and Oregon. every year I proudly proclaim why I ride to my friends, family, co-workers and everybody else who is within earshot of my fundraising message. Like this one:

about my fightIt’s been thirteen years now since I first heard those words “You have MS.” Like many oth-ers, my course is a daily struggle with pain and damaging effects ever since the first onset of my disease. I am able to fight back, though! Through the amazing medical treatment that I receive from my doctors at the Veterans Affairs Hospital, my body is strong. Through the con-stant love and guidance from my friends and family, I have been able to maintain my daily life. All the time, the support from advocacy groups like the NMSS have kept me prepared for today and whatever may happen next!

Now, Brie and I are focused on giving back and fighting for those who have helped so many.

It will never stop...nor will we It will never quit...nor will we This is why we ride!

that was last yeareveryone fighting MS knows how this disease can change over years, months, days...even hours. After the past year I need to add another reason why I ride: because sometimes, I can’t.

The struggles with my disease have become quite extreme. On good days, I can move, walk and talk with relative normalcy. On bad days, I can’t. The peaks and valleys are extreme. They can hit me five, ten-even fifteen times in a sin-gle day.

So, this year my goal is to ride-just ride.

I’m not sure how far or how fast, but I will ride. I’ll ride to increase the awareness of our fight: a World Free of MS. That’s the vision, but we have a long way to go.

It will never stop...nor will we It will never quit...nor will we This is why we ride!

keviN byrNe & brie stoiaNoff - bike ms 2010

register toDay: bikeMSoregon.com

12 ms coNNectioN: summer 2013

liviNg with ms

moviNg forward iN the outDoorsBY GeORGeNA MORAN

I have always lived somewhat outside the box. For nearly 20 years I owned a small cabinet and fine woodworking business called Norwest Woodworks. I was also an avid outdoor recre-ationalist, racing outrigger canoes and exploring backcountry trails and waterways far and wide.

Then on April Fools’ Day, 1997, I was diagnosed with MS, and it was not a joke. It proved to be a fast progression. Within three years I needed to use a wheelchair. I closed my business and be-gan working for Independent Living Resources, as their ADA Accessibility Specialist. Given my skill with tools and a tape measure, this became my new life’s work.

I still sought adventures outdoors, this spirit never diminished. With the use of my electric wheelchair, I would go out and begin a hike down a trail. Unfortunately sometimes I would be stopped for the most inconsequential reason, like the trail narrowing to less than two feet or a tree root that would cross the trail.

Three years later, I was unemployed with some time on my hands. I invited an ad hoc group representing park and recreation agencies and related organizations to meet and work on im-proving information provided to the public on trails. The key was not to say what was “acces-sible” but to provide enough information on a trail so an individual could decide for them-selves whether it might meet their needs.

We created a web-based document called Guidelines for Providing Trail Information to Peo-ple with Disabilities. People will know ahead of time what they will find on a trail and can make better decisions whether a trail will meet their accessibility needs or level of adventure desired. This vastly increases recreation opportunities for people of all abilities.

It is now my pleasure to share this resource with everyone. For the first time ever as a power wheelchair user, I have a backlog of hiking trails to explore. Have fun and I hope to see you on the trail!

The Guidelines for Providing Trail Information to People with Disabilities and US Forest Service videos may be found online at www.accessrecreation.org

georgeNa moraN oN the trail

13Defeatms.com | 1-800-344-4867

aDvocacy

coNNectioNworks: the Disability civil rights movemeNt BY HeLeN MARIe RUSSON

I love the “connection” theme for this year’s MS awareness campaign. As scientists are dis-covering the amazing process by which nerves start to form new connections (remyelination), we in the MS community are also finding new and creative ways of doing the same thing. We are broadening and strengthening connections within our neighborhoods and throughout the world.

Connections are often created because there is a common need, combined with a realization that this need can only be met by a group ef-fort. In many cases, the resulting connection stays alive throughout generations and becomes a part of history. Such was the case with a move-ment that many people still don’t know about: the disability civil rights movement.

People with disabilities used to be even more isolated than we are today. Not only were we overlooked in the civil rights laws of the 1960’s, but in some cases we underwent forced steriliza-tion and mandatory institutionalization. There was also a general assumption that if we were unable to use a sidewalk or get into a building to apply for a job, it was the unfortunate hand we had been dealt and it was our responsibility to accept and cope with it.

Things changed when people with disabilities

– all kinds of disabilities – worked together to change peoples’ minds and eventually change the law. ed Roberts, the “father of the disabil-ity rights movement,” used the press in 1967 to persuade University of California, Berkeley that he could attend classes in an iron lung. In 1977, disability activists organized a five-week sit-in at a government building in San Francisco, until the Carter administration finally implemented regulations to make public buildings accessible. And in 1988, hundreds of students and alumni at Gallaudet University for the Deaf effectively closed down the campus until a deaf president was hired.

It was these types of protests that eventually led to George H. W. Bush signing the Americans with Disabilities Act (ADA) into law in 1990. In fact, the Society honored a congressional champion of the ADA at the annual Public Pol-icy Conference this year. Although we have a long ways to go before we have finally achieved a society free of disability discrimination, we are in debt to – and forever connected with – these heroes.

Helen Russon is an attorney who currently investigates civil rights complaints for the Oregon Bureau of Labor & Industries. She also teaches a class on Disability

Law for the Willamette University College of Law in Salem, Oregon. Since being diagnosed with MS in 1997, Helen has done volunteer work for the NMSS, and has written several articles for Momentum Magazine.

14 ms coNNectioN: summer 2013

NatioNal multiple sclerosis society oregoN chapter

2013 summer saturDaySeries9:45 AM registratioN 10-11:15 AM program Eliot Center at First Unitarian Church 1226 SW Salmon Street, Portland, OR

register for each program visit www.defeatMS.com and click on the Calendar or call 1-800-344-4867, option 1

emotioNal wellNess: ease stress&Dramawithself-acceptaNce JULy 20, 2013 — Polly Campbell is a speaker and the author of two books “Imperfect Spirituality: extraordinary enlightenment for Ordinary People” and “how to Reach enlightenment.” She also blogs with The Huffington Post and Psychology Today and her articles appear regularly in national publications. Self-acceptance is a super-power. It can ease stress, end the drama of daily life, and help you thrive no matter what you face. Learn how rewrite your personal narrative, silence your inner critic, foster psychological courage, and cultivate self-compassion for a healthier, more authentic life.

emotioNal wellNess: striviNg for happiNess& fulfillmeNt AUGUST 17, 2013 — Rachel Carter is a life and transition coach, and motivational speaker. She has run multiple marathons and half-marathons, and lives with MS. Rachel has found her personal equation for happiness. Transitions in life can be challenging. Join Rachel to learn strategies for overcoming obstacles, while striving to be healthier, happier and fulfilled. Learn how to find your own personal equation for happiness, and live up to your full potential.

wellNess in yourhome: safety& accessibility SEPTEMBER 21, 2013 — Melissa Mott, OTR/L, CAPS is a licensed occupational therapist, and certified aging in place specialist with over 12 years of experience. She uses compassionate expertise to provide home safety assessments, and home modification services for more access and greater independence. Home safety and accessibility is essential, with the goal to minimize risk of injury while maximizing quality of life. The home environment can be adapted and modified to create a safe, secure and comfortable living space. Learn about choices that you can make to maintain independence and be safe at home.

15Defeatms.com | 1-800-344-4867

local reseach stuDies & cliNical trials NatioNal iNstitutes of health clinicaltrials.gov and type in search bar: “MS Oregon” or “MS Washington”

Nmss, oregoN chapter defeatMS.com and type in search bar: “Local Studies”

New features MSConnection.org, the MS movement’s online community has new features for people who would like to connect, share stories, gain insights, and support and inspire one another. Beginning in June, visitors to the site will find:

• Live chat rooms• Tips from MS experts• Online support groups• Customized recommendations

based on profiles• enhanced connection opportunities

STOPPINg The dISeASe ReSTORINg WhAT’S beeN LOST eNdINg MS FOReveR

NOW we stand together to raise $250 million to fuel MS research - so no opportunity will be wasted. A year-end gift to MS research brings hope to everyone living with MS, by funding

critical research to stop disease progression, restore lost function and end MS forever.

dONATe TOdAy: nationalMSsociety.org

ohsu ms ceNter ohsu.edu/research/rda/so/ and scroll to: Multiple Sclerosis

proviDeNce ms ceNter providence.org/ms and click on: See Clinical Trials & Research

va ms ceNter of excelleNceva.gov/MS and click on: Research

5331 SW Macadam Ave Ste 290Portland, OR 97239-3847

National Multiple Sclerosis SocietyOregon Chapter

NON-PROFIT ORG.U.S. POSTAGe

PAIDPeRMIT NO. 737PORTLAND, OR

Address or email Change? Call us at 1-800-344-4867

Bike MS: willaMette valley » auguSt 2-4, 2013 » 6 routeS » froM weStern oregon univerSity in MonMouth

Get involved! Register for the ride, bring a friend, volunteer. Your

involvement moves us closer to a world free of MS.

BikeMSoregon.coM or call 503.445.8352

Register Today

Gala 2013

thursday, september 12, 2013 • 6 –9 pm simon & helen director park, portland cocktail attire • individual t ickets $200

new exciting program • festive beverages & hor d’oeuvres • sumptuous dinner & wine from local, sustainable farms & vineyards

For more information: 503.445.8340 | lisa.roth@nmss.org | defeatMS.com

an exclusive event

please join us at a benefit for t h e N a t i o n a l M u l t i p l e S c l e r o s i s S o c i e t y , O r e g o n C h a p t e r