ms connection newsletteroregon chapter · stress management & relaxation • tuesday, may 10...

SPRING 2016 NATIONAL MS SOCIETY

OREGON CHAPTER

MS CONNECTION NEWSLETTER

INSIDE THIS ISSUE

03UPCOMING EVENTS + PROGRAMS

08PARENTING WITH MS

10WALK MS 2016

16ON THE HORIZON, PART 1

continued on page 12

SOCIETY REACHES $250 MILLION!NOW CAMPAIGN GOAL & TRANSFORMS THE PACE OF MS RESEARCH PROGRESS The National MS Society’s ground-breaking $250 million No Opportunity Wasted (NOW) campaign, which successfully concluded in December 2015, has launched more MS research and driven more life-changing progress than has occurred at any other time in the Society’s history.Since the start of the NOW campaign in 2010, the Society has launched 818 new research projects, including 28 commercial research partnerships aimed at overcoming barriers to commercial development to propel promising new therapies, 71 clinical trials, 141 projects testing rehabilitation and

2 MS CONNECTION: SPRING 2016

As a parent living with MS, I understand how the disease

can interfere with a child’s livelihood — through our ability to participate in our kid’s activities, or to provide a financially stable environment. That’s why I’ve dedicated my work to serving all families affected by MS, and why the Society invests in ground-breaking research, programs and services to help everyone impacted by MS to lead their best lives.

Speaking of which — over the past five years, our amazing donors and fundraisers collectively raised $250 million for the NOW campaign to invest in research efforts across the world. Because the Society is committed to finding a cure — no matter if it’s discovered here at OHSU, or in a tiny lab in Denmark.

A remarkable individual who lives in our Chapter has brought a powerful voice to the MS Movement — and led a company-wide effort to not only sponsor Bike MS, but create national teams to power those critical fundraising dollars. Now, as a member of our National Board, Mike has expanded his scope by helping guide the best investments we can make. I want to personally thank him for his graciousness, years of dedication, and for sharing his story.

And with spring quickly approaching, Walk MS and Bike MS are right around the corner. These events are a wonderful opportunity to connect with others in the community, and as my own kids will tell you, a simple, fun way to celebrate Mom. I hope you and your family will join us.

Sincerely, Chapter President

BOARD MEMBERS Ralph Cole, Chair Nanette Reid, Vice Chair Robert Moore, Secretary Michelle Waddell, Treasurer Lisa Roth, Chapter President Ronald Merryman, Immediate Past Chair Brett Bauer Stanley Cohan, MD, PhD Darren Glassman Datton Khuu Kiren Kresa-Reahl, MD Irene Matyas Kevin O'Toole Chad Rheingold Phil Rosebrook Lee Shaver Brie Stoianoff Elysa Stoner Lisa Welch

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. © 2016 National Multiple Sclerosis Society, Oregon Chapter

MS Connection is published by: LETTER FROM THE PRESIDENT

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

National Multiple Sclerosis SocietyOregon Chapter

3DEFEATMS.COM | 1-800-344-4867 | BLOG: DEFEATMSBLOG.COM | FACEBOOK: DEFEATMSOREGON

2016 — SAVE the DATES

EVENTS +PROGRAMS NATIONAL MS SOCIETY 1-800-344-4867 option 1 • defeatMS.com MS Awareness Week • March 7-13

Café con Leche: Conversation & support in Spanish for people living with MS • 11 AM-12:30 PM PST on all dates • Tuesday, March 8 • Tuesday, April 12 • Tuesday, May 10 Details: 1-800-344-4867, option 3 Call-in Number: 1-888-262-0101

Employment Matters • Saturday, March 19 • Portland

Walk MS 2016 • Saturday, April 16: Bend, Salem • Saturday, April 23: Portland, Heppner, Merrill • Saturday, April 30: Central Point, • Sunday, May 1: Vancouver, WA • Saturday, May 7: Corvallis, Eugene

Relationship Matters • Saturday, May 21 • Tigard

Bike MS 2016 • Willamette Valley • Friday, August 5 – Sunday, August 7 • Monmouth, OR at

Western Oregon University

ON THE HORIZON: UPDATES IN MS OHSU MS Center & NMSS 503-494-7661 • www.ohsu.edu/ms/events • Thursday, March 31 • Corvallis • Thursday, April 7 • Eugene • Thursday, May 5 • Coos Bay • Friday, May 13 • Medford • Thursday, June 9 • Salem • Friday, June 17 • Bend

OHSU MS CENTER Brown Bag Lunch Programs 11:30 AM-1 PM • Portland 2nd Fridays • 503-494-7661 www.ohsu.edu/ms/events

Research from The Hill: Thyroid Hormone as Inspiration for New MS Treatments • Friday, March 11

Diet & MS • Friday, April 8

Hands Off! Finding Your Balance • Friday, May 6

Topic TBA • Friday, June 10

NMSSS & CAN DO MS WEBINARS + TELELEARNINGS • 2nd Tuesdays online at defeatMS.com

Your Whole Health, Your Whole Team: Managing Your Complex MS Symptoms • Tuesday, March 8 • 5-6:15 PM PST

continued on page 4

http://www.defeatms.com/

http://www.defeatms.com/


Connection groups are for people with MS and family members. Join others to share experiences, and offer information and resources, in a positive group in your community.

GRANTS PASS MS SELF-HELP GROUP • Day: one Sunday each month • Time: 12:00 pm • Location: Elmer’s Restaurant Meeting Room, 175 NE Agness Avenue Grants Pass, OR 97526 • Contact: Katy at [email protected], or 541-956-0220 to confirm the next Sunday meeting date and location.

REDMOND MS SELF-HELP GROUP Starting March 17, 2016 • Day: third Thursday evening of the month • Time: 6:30 pm • Location: St. Charles Medical Center Conference Room, 1253 NW Canal Blvd. Redmond, OR 97756 • Contacts: Ann at [email protected], or 907-227-1559; or Jennifer at: [email protected], 541-977-1334

OTHER SUPPORT GROUPS If you would like more information about in-person groups throughout the chapter, check our website at www.defeatMS.com and click on Groups & Discussions. If you’re seeking online groups, please check out www.MSconnection.org/groups for one or more groups that meet your needs.

CONNECTION GROUPS

RESEARCH STUDIES NATIONAL INSTITUTES OF HEALTH www. clinicaltrials.gov and type in search bar: “MS Oregon” or “MS Washington”

NATIONAL MULTIPLE SCLEROSIS SOCIETY www.nationalmssociety.org/Research/Participate-in-Research-Studies

NORTH AMERICAN RESEARCH COMMITTEE ON MS www.narcoms.org

PACIFIC NW MS REGISTRY www.pacificnwms.org

& CLINICAL TRIALS

NMSSS & CAN DO MS WEBINARS + TELELEARNINGS • 2nd Tuesdays online at www.defeatMS.com

The Complete Guide to Social Security Disability • Tuesday, March 15 • 5-6:15 PM PST

Home Based Employment: What Employers Want • Tuesday, March 29 • 5-6:15 PM PST

Myelin, Movement & the Mind: Hot Topics in MS Research • Tuesday, April 12 • 5-6:15 PM PST

Stress Management & Relaxation • Tuesday, May 10 • 5-6:15 PM PST

Traveling with MS • Tuesday, June 14 • 5-6:15 PM PST


WEBINAR & TELELEARNING SERIES

Building Your Wellness StrategiesA collaboration of MS experts will help you build strategies to live your best life

with MS. Each free program features two presenters with time for Q&A. Join us online or by phone on topics including:

BROOKEDIAGNOSED IN 2009

WILLIAM (LEFT)DIAGNOSED IN 2002

SUSANDIAGNOSED IN 1988

Exercise & CognitionEmployment

(4 different topics)Treatment DecisionsResearch Updates

Traveling with MSStress & RelaxationManaging SpasticityMood

Health InsuranceTips for Support Partners

& FamiliesDiet & NutritionSleep

Register at nationalMSsociety.org/telelearning or call 1-800-344-4867.

Calls are held on the second Tuesday of each month from 8 to 9:15 p.m. ETAll calls are recorded and available for playback.

Do it yourself fundraising is an opportunity for people in our Chapter area with a deep commitment to the MS cause, to raise awareness and critical funds for the MS movement in new and creative ways. For more information, contact: Dana Voelker, Director of Major Giving 503-445-8358 • [email protected] www.defeatMS.com, click on: “Fundraising Events”


PAID ADVERTISEMENT

The Society created MSconnection.org, a social networking website and online community for people living with MS, their loved ones and experts to connect in a safe and secure environment.

No one should have to face MS alone. Join thousands of people supporting one another and exploring the issues that shape your world.

MS CONNECTION Learn. Share. Connect.

www.MSconnection.orgSign up and start connecting!

Date and Time: 03/15/2016 at 6:30 PM

Speaker: Stanley Cohan MD Providence MS Center

Location: Oba! Restaurante 555 Northwest 12th Avenue Portland, OR 97209

Event Code: TR343468 (1292475)

If you are facing challenges with your health insurance and accessing the care you want, an MS Navigator can help. Call 1-800-344-4867 to speak with an MS Navigator in person or visit www.MSconnection.org to ask questions via the “Ask an MS Navigator” discussion board.

http://www.relapsingmultiplesclerosisevents.com


LOCAL WASHINGTONIAN SERVES on NATIONAL BOARD of THE SOCIETY MEET MIKE PONGONBY EMILY DINGS

When Mike Pongon was growing up, he knew his aunt lived with MS, but didn’t know much about the disease. Now the CEO of a thriving consulting firm with eight years on the board of the Oregon Chapter under his belt, he was recently appointed to the national board of the Society.

Mike’s involvement started with Walk MS. “I started walking in Portland and Vancouver fifteen years ago with my dad. My aunt’s health had begun to deteriorate, and she moved in with my parents,” he says. “As my career progressed, I started thinking about what I could do in a leadership capacity.”

Not only did Mike join and eventually chair Oregon Chapter board of trustees, he helped build the board, grow regional Walk MS and Bike MS events, and created an innovative national fundraising model to form Bike MS teams within his consulting firm, Point B.

Point B’s teams from its Seattle and Portland offices were so successful that Pongon decided to follow suit in each of the company’s eight offices around the country. “If you have an up-and-coming leader inside your company,

starting a team is a great way to build skills in a non-corporate, non-traditional way,” he explains.

Pongon is proud of the community building that has resulted from Point B’s Bike MS teams. Awareness of the disease has been another benefit. “People often don’t realize that there are people in their own companies [who are affected by MS],” he says.

As Pongon joins the national board of the Society — sitting on the Chapter Relations committee — he’s poised to contribute his broad leadership skills on a larger scale. Drawing from his experience to help consolidate the Society’s nine finance committees across the Western region, he views pooling resources as key to defeat MS. “Our work to eradicate the disease is better leveraged as a national organization as opposed to an affiliation of chapters,” he adds.

Pongon is also eager to learn from his fellow national board members. “I’m really interested in what’s happening globally,” he says. He wants to find out as much as he can about advancements in available drug treatments, some of which have directly benefitted his aunt’s health. His appointment to the national board, he believes, is an opportunity to help determine the best investments the Society can make, “to not only stop the disease, but to end it forever.”


LIVING WITH MS

PARENTINGwith MS The National MS Society recently sat down with Dr. Deborah Miller of Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research to discuss parenting with MS. Here’s what she had to say:

What parenting-related issues often come up in your work at the Center?

A lot of parents are concerned that their having MS will interfere with their children’s ability to have a “normal” childhood. People are also concerned that they won’t be able to adequately parent their children — either in terms of their ability to participate in activities or their ability to discipline their children.

What do you say to people with MS who are concerned about whether or not they should have kids?

The decision to become a parent should be carefully considered by anyone, whether you have MS or not, but there’s absolutely no reason to not have children if you want them. Before having children, though, it’s a good idea to think about your support system and

realize that there may be times you will need people to step in and help out. You may also want to think about and plan for your financial future. MS is an expensive disease and you may need to consider how you will balance the cost of MS-related expenses with saving for your family’s future.

We’ve heard from grown children of people with MS that they gained wisdom, empathy and a sense of responsibility by helping their parents as they were growing up. How do you know when you may be asking too much of your child?

There’s a good bit of evidence that children who have a parent with MS develop into healthy adults. It’s really important that they learn more by what their parents do than by what their parents are unable to do. If a parent sets a good example in terms of being adaptive and finding ways to make accommodations that keep them active and involved, it’s a great lesson for children to learn.

LISA, DIAGNOSED IN 2007

“It’s really important that children learn more by what their parents do than by what their parents are unable to do.”

9DEFEATMS.COM | 1-800-344-4867 | BLOG: DEFEATMSBLOG.COM | TWITTER: @DEFEATMSOREGON

In terms of household responsibilities, I don’t think there are any particular lines you shouldn’t cross. However, until they are adults, in general children should not be involved in intimate care, such as helping a parent get dressed or use the restroom. The important thing is that kids have an opportunity to be involved in deciding what their responsibilities are at home. I find that in any family, when children are able to negotiate what responsibilities they take on, it makes them much more willing to participate.

Are there common issues or concerns you hear from children who have a parent with MS?

Kids, especially younger children, can worry that they did something to cause their parent’s MS. Children also often worry that their parent is going to die. We make it a standard part of most family-related sessions that parents let their children know that most people with MS live very long lives. MS may force them to do things differently, but they will be there to love and take care of you. As children get older, they’re often concerned that they’re going to get MS themselves.

It’s also important to give MS a name because kids’ imaginations can go worse places than MS could ever be. However, with younger children, there’s no need to go into detail about what causes the condition. I typically encourage parents of younger kids to talk in

“It’s important to let kids ask questions, and then answer the questions that they ask.”

For more information on families and MS, visit www.nationalMSsociety.org/family. Call an MS Navigator at 1-800-344-4867 for parenting resources in your area.

terms of symptoms. Explaining the symptom you’re experiencing and tying that back to MS can help them make sense of it. As children get older and more sophisticated, it can help them to have information that ties different symptoms together and to see how these issues are related, so that there’s a coherent explanation for what’s going on.

Any final thoughts?

Good parenting is a very active process. Setting boundaries, being consistent, rewarding good behavior, recognizing when a child isn’t doing well are important for all parents, but especially important when a parent has MS. All too often people will blame MS for problems in the family. It’s essential to look beyond MS when things aren’t going right. Don’t be afraid to seek help when your family is struggling with an issue — a therapist can be a really valuable resource to help you through the tough times. You shouldn’t have to face challenges alone.

Originally published on www.MSconnection.org/blog.

http://www.nationalMSsociety.org/family

http://www.MSconnection.org/blog


WALK MS 2016 A GIANT CELEBRATION FOR EVERYONE IN THE MS COMMUNITY This April and May, join us to stomp out MS.

From start to finish, Walk MS Oregon is a fun, heartfelt, family-friendly event. Eat tasty food, drink refreshing beverages, get your fingers tapping to fun music, and feel the joy of shared connections. Whether you walk, roll, cheer or volunteer, there’s something meaningful for you.

My mom has been one of the lucky ones with MS. She’s responded well to medications and has been stable since her diagnosis, but every year during Walk MS, I see others who have not been so fortunate — they cannot talk clearly, walk, or see. I will continue to raise money to honor those who have not been as fortunate as my mom and to one day hopefully find a cure through the money I have raised. — Chris

Unable to join us on event day? No worries. Register as a Virtual Walker at walkMS.org and fundraise from the comfort of your home. Every dollar counts on the road to cure MS.

Volunteering at Walk MS was both my first opportunity with the Society, and my first experience relating with others who live with MS. — Adam, Office Intern & Walk MS Volunteer

When I came down with MS 22 years ago, my doctor told me ‘most likely they won't come up with a cure in your lifetime.’ I went home in tears. Since then, I've walked every year — for 20 years — to find a cure. I'm driven to prove him wrong — that in my lifetime we will find a cure. And I vowed that as long as I could walk, I would walk for those who can't. — Karin

Together We Are Stronger. Register for Walk MS today!

WWW.WALKMS.ORGor call 1-855-372-1331

http://www.WalkMS.org


VOLUNTEER OPPORTUNITIES

SHOW YOUR ROCKSTAR STRUT: JOIN OUR WALK MS VOLUNTEER ARMY Walk MS funds cutting-edge research, programs and services vital to those who live with MS. Walk MS also generates a ton of awareness and is expected to bring out nearly 6,000 people this spring across nine cities in Oregon and SW Washington.

Events of this magnitude require the passion, heart and talents of our Volunteer Army to provide the backbone for success. As a Volunteer, you will meet new people and have a ton o’ fun while doing something that really matters. Join us!

WALK MS VOLUNTEER ARMY POSITIONS• Volunteer Check-in Tent• Registration Rock Stars• Sunrise Event Crew & Sparkling Fresh Force• Grandmaster Greeters• Event Photographer(s)• Team Tent Photographer(s)• Food Tent• Route Monitors• Rest Stops• Cheerleaders• Delivery Support

• Saturday, April 16, 2016 | 9 AM Bend — Riverbend Park Salem — Riverfront Park

• Saturday, April 23, 2016 | 9 AM Portland — Pioneer Courthouse Square Heppner — All Saints Episcopal Church Merrill — Merrill Presbyterian Church

• Saturday, April 30, 2016 | 9 AM Central Point — Twin Creeks Park

• Sunday, May 1, 2016 | 9 AM Vancouver, WA — Esther Short Park

• Saturday, May 7, 2016 | 9 AM Corvallis — Helen M. Berg Plaza Eugene — Alton Baker Park

VOLUNTEERS ARE NEEDED AT ALL 9 WALK MS EVENTS SIGN UP FOR A WALK NEAR YOU TODAY Are you ready to join our volunteer army? Contact us today! Janis Kramer, Community Engagement Manager [email protected] or 503-445-8356.

BRING

AWESOMEYOUR

CONTACT [email protected] • 503-445-8356

JOIN OUR


SOCIETY REACHES $250 MILLION... cover story continued

wellness approaches, and 137 grants to train promising MS researchers.

In five short years, the campaign has brought in more than one-quarter of the Society’s total research investments since its founding in 1946, and has accelerated vital research breakthroughs toward stopping the MS in its tracks, restoring what has been lost, and ending MS forever.

Research Progress Focused on Stopping MS includes:• Improving tools to speed the diagnosis

of MS• Supporting promising clinical trials of

nerve-protecting strategies• Founding the International Progressive

MS Alliance• Uncovering new evidence for disease

progression risk factors• Establishing the MS Outcome Assessments

Consortium to develop measures of MS progression and speed clinical trials/FDA approval of new therapies

Research Progress Focused on Restoring Lost Function includes:• Advancing myelin repair strategies• Demonstrating the promise of stem cells

to restore function• Leveraging wellness research results so that

people with MS can apply what we know through research to live their best lives

Research Progress Focused on Ending MS forever includes:• Identifying important leads regarding

environmental and lifestyle factors that increase MS risk

• Discovering genes that make people susceptible to MS

• Establishing and expanding the Network of Pediatric MS Centers

This campaign’s unprecedented investment in research has yielded discoveries that hold great promise for changing lives. The Society is grateful for the contributions of its many generous supporters who have fueled this progress and will continue to focus attention on the issues that matter most to people with MS, and will have the greatest impact.

• Connect with like-minded movers & shakers• Dine on delicious, locally-sourced seasonal fare• Kick back and relax with soothing music & cocktails• Enjoy fascinating true stories about life with MS

Join us at the Exchange Ballroom!

Cocktail attireDana Voelker, Director of Major Giving

503.445.8358 • [email protected]

THURSDAY, SEPTEMBER 29 • 6:00 PM • EXCHANGE BALLROOM


I RIDE WITH MS PROGRAM IS MORE THAN A VICTORY LOOP, IT’S A COMMUNITY

Riders at Bike MS support family members, friends or co-workers who’ve been diagnosed with MS. But there are also legions of participants who live and ride, with the disease, despite challenges such as fatigue or weakness.

I Ride with MS is a special Society program, funded 100% by Sanofi Genzyme, that recognizes Bike MS cyclists living with MS.

Anyone living with MS who’s interested in cycling to support the MS movement can join the program, enjoy special day-of-event benefits and receive a complimentary “I Ride with MS” jersey. On Sunday, riders who live with MS don their jerseys, hop on their bikes, and circle Rider Village in a one-mile “victory loop”.

It was a goosebumps-on-my-skin and lump-in-my-throat kind of ride as we all completed the victory loop Sunday morning. Sometimes, I feel a little alone with the symptoms I experience, so the IRWMS program is a connecting moment, for sure! — Sheila Mawdsley, 2016 IRWMS Ambassador

Join the IRWMS Program: WWW.BIKEMS.ORG

FINISH MS WITH SOME FRIENDS

WAYS TO GIVE

SOMEONE to LEAN ON Erin Schatteman is a self-proclaimed “non-runner,” even though she recently completed the Disney Princess Half Marathon.

Diagnosed with MS in 2006, Schatteman experienced only minimal symptoms. However, about a year ago, Schatteman relapsed. “The tingling started in my feet and continued to move up my body. I couldn’t carry my kids and struggled even just to walk.” After the relapse, she decided to start running.

She used the National MS Society’s Finish MS fundraising program to raise awareness and support. “Finish MS made me stick to my goal,” she says. Schatteman admits it was harder than she expected.

Her advice for others with MS who want to run a marathon or a similar endurance event is to “lean on others.” She adds, “Don’t be afraid to ask for help. The Finish MS platform allows you to easily connect with others to create a team, fundraise and update supporters.”

To learn more about Finish MS, which offers people a chance to work toward a world free of MS while pushing their own personal limits, visit www.finishMS.org.


RESEARCH

A GLOBAL EFFORT The International Progressive MS Alliance, an initiative connecting resources and experts around the world to end progressive multiple sclerosis, has awarded 11 collaborative network planning grants to MS researchers. Last year the Alliance funded 22 projects, all part of an ambitious program that will cumulatively invest nearly $25 million over the next five years in progressive MS research.

“The global commitment to collaboratively addressing — and overcoming — the barriers to developing solutions in progressive MS is inspiring the entire world to do more,” says Cynthia Zagieboylo, Chair of the Alliance Executive Committee and CEO of the National MS Society.

FOCUS ON SOLUTIONSThe one-year planning awards launch a focused program to accelerate research progress in three key areas:

1) Develop better and more effective therapies for progressive MS;

2) Develop more meaningful ways to measure progression and monitor treatment effectiveness; and

3) Initiate clinical trials for new interventions.

Each project selected for funding addresses one of these priority areas and will be directed by some of the world’s most prominent thought leaders and MS scientists.

Current projects selected for support include the development of: a treatment-discovery pipeline for secondary-progressive MS, an MRI biomarker for disability progression for use in clinical trials, novel molecular imaging probes to predict disability progression and evaluate therapies, and a multicenter project on cognitive rehabilitation and exercise. Project awardees will have the opportunity to apply for a full, four-year Collaborative Network award at the conclusion of the 12-month planning grant.

“Not only has worldwide attention to progressive MS increased, but progress toward solutions that will change the world for people with progressive MS is accelerating,” noted Dr. Alan Thompson, Chair of the Alliance’s Scientific Steering Committee and Dean of University College London Faculty of Brain Sciences.

Visit www.ProgressiveMSAlliance.org for more information. Learn about progressive MS at www.nationalMSsociety.org/progressiveMS.


GET CONNECTEDSign up to receive Society emails: www.nationalMSsociety.org/signup

Join the MSConnection.org community: www.MSconnection.org

MS NAVIGATORSAsk an MS Navigator for help to navigate the challenges of MS. Find personalized answers to your unique needs, up-to-date information, referrals and practical resources.

Call 1-800-344-4867 [email protected]

www.facebook.com/NavigatorMS

BECOME AN MS ACTIVIST TODAY Are you an MS Activist? The National MS Society, Oregon Chapter is issuing a challenge for 100% participation in the MS Activist Network, and we need you. MS Activists receive National MS Society email messages to affect important policies and priorities, and engage key decision-makers.

View what it means to be an MS Activist and move toward a world free of MS at: www.nationalMSsociety.org/activistvideo

Follow @MSActivist for federal updates.

�Take action and Join the National MS Society MS Activist network today at: www.nationalMSsociety.org/MSActivist

Comprehensive Fall Prevention & Detection in MS (OHSU eIRB #11805 / VA IRB #3516)

Dr. Michelle Cameron, a neurologist at the VA Portland Health Care System (VAPORHCS) and Oregon Health & Science University, is recruiting for a research study to explore the effects of two methods of fall prevention on reducing falls in people with Multiple Sclerosis. If you would like to participate, you must:

■ Be over the age of 18 ■ Have Multiple Sclerosis ■ Have fallen at least two times in the last

two months■ Be able to walk at least 20 meters,

with or without a walking aid ■ Some participants will be asked to wear a fall

detector during part of this study

Participants will be randomly placed into two groups. One group will participate in an educational and exercise class on fall prevention; the other group will receive educational materials about fall prevention. In addition to class time, participants will come to the VAPORHCS for four assessment visits over an 8-month period. You will also be asked to keep a daily record of your falls for this time. Some participants will be asked to wear an automated fall detector as well. This is a randomized trial. Half of the subjects will take the classes during the study, and the other half will be wait-listed and given the opportunity to take the classes after the study is completed. This is a research study and not treatment.

If you would like further information about this study, please contact: Andrea Hildebrand, Research Coordinator (503) 220-8262 x52016

FREE FROM FALLSA COMPREHENSIVE FALL PREVENTION PROGRAM FOR PEOPLE WITH MS


RESEARCH

ON the HORIZON ECTRIMS PART 1BY MARK ALLEGRETTA

There was a lot of excitement at the annual meeting of the European Committee for Treatment and Research in Multiple Sclerosis, or ECTRIMS, in October 2015, about the emergence of new treatment approaches for all forms of MS — including progressive MS.

MAKING A BUZZPerhaps the biggest “buzz” was around results presented on studies of the monoclonal antibody ocrelizumab in relapsing-remitting and progressive MS. Ocrelizumab targets a protein that appears on immune B cells during specific stages of their life cycle. B cells make antibodies to help fight infection and perform other functions to stimulate the immune system. Scientists believe ocrelizumab destroys the group of B cells that include those that contribute to MS, but leaves other B cells intact that are fighting infections or are prepared to fight new ones.

A highly anticipated presentation described the results of a clinical trial of ocrelizumab involving 732 people with primary-progressive MS. Participants were given either ocrelizumab or placebo by in-vein infusions about every six months. Results showed that compared to

RESEARCHERS EXPLORE NEW APPROACHES TO STOPPING MS

placebo, ocrelizumab significantly reduced the risk of progression of clinical disability by 24 percent, and had other positive outcomes. The main side effects were reactions to the infusions, and the incidence of serious infections was relatively low. This is the first large-scale clinical trial to show positive results in people with primary-progressive MS.

In addition, results were presented from two phase III trials of ocrelizumab in relapsing MS. In both trials, the treatment performed very well against Rebif in people who had never been on any MS therapy, as well as those who had tried other therapies. The reported results showed that ocrelizumab reduced the risk of relapse by 46 to 47 percent compared to Rebif, reduced the risk of disease progression by 40 percent, and had other positive outcomes. The sponsor, Genentech (a member of the Roche Group), stated that it plans to apply for marketing approval from the FDA in early 2016.


A GENERIC POSSIBILITYAnother intriguing trial result came from a group of investigators led by Dr. Luanne Metz (University of Calgary) who conducted a Phase III trial of a relatively inexpensive oral antibiotic called minocycline. Minocycline has been on the market for decades and is often prescribed to treat acne, and in addition to its bacteria-killing action, it reduces inflammation.

The trial tested minocycline against placebo in 144 people across Canada who had clinically isolated syndrome (CIS) — which means they have early possible signs of MS but haven’t yet shown enough signs or symptoms to be diagnosed with definite MS. The goal was to determine if minocycline, taken orally at a dose of 100 mg twice a day, could reduce the proportion of participants with CIS who converted to MS over a six-month follow-up period.

The secondary objective was to determine whether the effect could last up to two years. Their results showed that over six months, those taking twice daily minocycline had a 44.6 percent reduced risk of developing definite MS, compared to those taking placebo. There were no unexpected side effects reported from the trial — the most common include potential for diarrhea, dizziness or light-headedness, grey discoloration of the skin or tissue in the mouth or teeth, sun sensitivity, and secondary infection due to fungi.

To stay up to date on MS research, sign upfor MS eNews at www.nationalMSsociety.org/signup.

These results bring up a lot of questions, such as: What are the longer-term benefits or side effects? Would this help people who already have MS? Would regulators approve a generic drug like this? Would its price alone influence doctors to prescribe it?

MORE TO COMEThese are only a few of many new approaches being explored to stop the MS process and restore function. If you are interested in these and the many other reports from ECTRIMS, visit www.ectrims-congress.eu to browse hundreds of abstracts to get an idea of what solutions are on the horizon for people with MS. One important caveat — everything presented at a meeting such as ECTRIMS is considered preliminary until it has been thoroughly peer-reviewed for publication in a respected journal — so the information shared here is based only on the information we’ve heard so far.

Mark Allegretta, PhD, is associate vice president at the National MS Society, leading commercial research including partnerships developed through Fast Forward.

Originally published on: www.MSconnection.org/blog

http://www.ectrims-congress.eu

http://www.MSconnection.org/blog


LEARNING MORE about “CELL WARS” MAY HELP US DEFEAT MS BY HELEN RUSSON

How’s this for a Star Wars plot: Trillions of space ships are racing up and down the galaxy, ever on the lookout for danger. The sentry receives a piece of something that he believes is a dangerous substance — possibly a virus or bacterium. He gathers his fleet, which breaks through the barrier and attacks the invader. Tragically, the soldiers then realize that the “enemy” was one of their own. We’ve seen this movie before, but it is actually the very real story of what happens between the brain and the immune system in those of us with MS. Our nerves are protected by something called the myelin sheath, which enables our central nervous system and our brains to connect. But for some reason, our T-cells sometimes receive a signal from the brain that the sheath is an unwelcome substance and must be destroyed. This “autoimmune” response leads to MS. At our chapter's recent annual meeting, Dr. Sergio Baranzini explained what scientists have learned about the complicated ways human cells communicate — and sometimes miscommunicate — with each other.

Dr. Baranzini explained that scientists have identified several factors that seem to increase the chances of an individual getting MS: Vitamin D deficiency, a history

of smoking and whether the person ever had the Epstein-Barr Virus (EBV). These, as well as the fact that MS predominately occurs in individuals of Northern European descent, are environmental factors that may influence why some people get MS and others do not. But it's not just about the environment. Dr. Baranzini also pointed out that "We are our genes," and 40 years of genetic research have resulted in scientists getting much closer to ultimately "mapping the MS genome.” Eventually, we may learn how the types and sequence of genes in any one person can predict whether the individual will get MS and how quickly the disease may progress. Dr. Baranzini concluded with a fascinating insight: We have ten times more bacteria than cells in our body. These bacteria live throughout our bodies, and somehow interact with the outside world. It is actually possible to “track” what part of the room a person was in, based on the properties of the bacteria he or she left behind! Bacteria thus may be “a perfect proxy” for helping us understand how our bodies and the environment may combine to create MS.

For more information on this amazing research, visit www.imsms.org.

DR. SERGIO BARANZINI


as well as other activities with the Oregon Chapter of the National Multiple Sclerosis Society. She also loves to go to county fairs, but that was in question last summer when she discovered that her cooling vest had a “wardrobe malfunction” and was unusable. However, she applied to the Oregon Chapter for financial assistance to purchase a new vest, and her application was successful. Cathy, the fair and a new cooling vest were all able to come together this summer. Quite a healing experience!

Learn more about the National MS Society financial assistance program visit www.defeatms.com or call 1-800-344-4867.

“SHE HEALS” OTHERS AS WELL AS HERSELF MEET CATHY HILLBY HELEN RUSSON

When Cathy Hill’s neurologist told her that her nursing days were over, she was a little surprised. “No one can tell me when to end my career,” she said to herself. This was despite the fact that her neurologist had also just told her that she had MS.

Cathy is a Native American, a member of the Potawatomi Tribe. As she puts it, “I went from pony to horse” as she matured into adulthood in Western Oregon. After her diagnosis, she combined some of the mainstream medications with herbs, raw honey, turmeric and garlic. And very shortly thereafter, her symptoms had diminished significantly.

“After I made the initial recovery, my daughter and I went to Wallowa County,” she said. She took a year off and “enjoyed the peace and quiet…the mountains healed me.”

Cathy then continued to work as a registered nurse for another seven years, until she was ready to stop. She may have stopped nursing, but she has not stopped healing. In fact, she was recently named in a ceremony by a tribal chief. The name that he gave her was Nanadmapet which means, “She heals.”

Cathy participates in the annual Walk MS event, Moving Your Life Forward www.AbilityCenter.com

BRAUNABILITY Introducing

We have hundreds of vans to choose from: Used and New!

We buy, we rent and we sell wheelchair accessible vans

» Side Entry

» Rear Entry

» ManualConversions

Ability Center of Portland9770 SW Wilsonville Rd. Ste. 440Wilsonville, OR 97070 (971) 224-5895

Ability Center of Eugene:3574 Marcola Rd.Springfield, OR 97477(541) 726-4001

Two locations to serve you:

FREEPRODUCT

GUIDE

CALLto inquire about a

The first wheelchair accessible SUV

AC-MS Connection Oregon Quart-page_Layout 1 2/9/16 6:36 PM Page 1PAID ADVERTISEMENT

REGISTER TODAY! WALKMS.ORG503-445-8342

OREGON CHAPTER

WE’RE STRONGER

TOGETHERWalk MS VolunteersWalk MS Participants

2016 WALK MS LOCATIONS BEND, SALEM: Sat, April 16 PORTLAND, HEPPNER, MERRILL: Sat, April 23CENTRAL POINT: Sat, April 30 VANCOUVER, WA: Sun, May 1 CORVALLIS, EUGENE: Sat, May 7

NON-PROFIT ORG.U.S. POSTAGE

PAIDPERMIT NO. 5377

DENVER, CO

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

National Multiple Sclerosis SocietyOregon Chapter

WILLAMETTE VALLEYAUGUST 5-7, 2016

IT’S MOREREGISTER TODAY! BIKEMS.ORG

CALL TOLL FREE AT 855-372-1331

OR EMAIL [email protected]

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

http://www.WalkMS.org

http://www.BikeMS.org

ms connection newsletteroregon chapter · stress management & relaxation • tuesday, may 10...

Documents