INSIDE THIS ISSUE

5A SURPRISE VISIT

7BREAKTHROUGH MS

8WELLNESS & RESILIENCE

9-10GET CONNECTED CALENDAR

SPRING 2017

MS CONNECTION NEWSLETTER

CONNECT Spring 2017

GET INVOLVEDParticipate in a Walk MS®, Bike MS®, Challenge Walk MS®, MuckFest® MS, or Do It Yourself Fundraising MS event. nationalMSsociety.org/getinvolved

The National Multiple Sclerosis Society (“Society”) is proud to be a source of information on topics related to MS. The information provided is based on professional advice, published experience, and expert opinion, but does not constitute medical or legal advice. For specific medical advice, consult a qualified physician. For specific legal advice, consult a qualified attorney.

The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered helpful information. The Society assumes no liability for the recipient’s use of any product or service mentioned. The Society does not independently verify whether the information provided by each service provider is accurate. The Society undertakes no responsibility to verify whether the service provider is appropriately licensed and certified and has applicable insurance coverage.

Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your healthcare professional and contacting the National MS Society at 1-800-344-4867 or nationalMSsociety.org.

MS ConnectionFrequency: IrregularlyNational Multiple Sclerosis Society900 South BroadwaySecond FloorDenver, CO 80209Issue No. 1

EMAIL NEWSLETTERBreaking news, including research developments, and available resources and services: nationalMSsociety.org/signup

LEGACYRemember the Society in your will or estate plan: 800-923-7727

DONATEIn cash, by check or online at nationalMSsociety.org/donate

MS NAVIGATOR®Call 1-800-344-4867 for:• Area resources • Health insurance

advice• Información

en español• Change of mail

subscription(s)

24/7 INFORMATIONnationalMSsociety.org• Información disponible

en español• New! Live chat

ONLINE MS COMMUNITYPeople around the world are connecting to live their best lives on MSconnection.org

MS ACTIVISMReceive MS Activist Network updates and Action Alerts: nationalMSsociety.org/MSactivist

RESEARCHBecome a research champion at nationalMSsociety.org/research

Cover: Alex (center), diagnosed in 2000, at Walk MS: Chicago.Above: Lynne (second from left), diagnosed in 2008, and Hayley (right), diagnosed in 2015, at Walk MS: Denver.

Board of Trustees: Officers

Justin Reckers ChairMark Malbon SecretaryTroy Parish Governance Committee ChairTim Holl Finance Committee ChairJim Kesaris Audit Committee ChairDr. Jody Corey-Bloom Healthcare Advisory Committee ChairCecelia Garr Donor Relations Chair

National MS Society Pacific South Coast

San Diego Office 12121 Scripps Summit Dr #190 San Diego, CA 92131Hawaii Office 950 Kamehameha Hwy Box # 822291 Pearl City, HI 96782nationalMSsociety.org/CAS

nationalMSsociety

nationalMSsociety

MSsociety

MSsociety

Greetings!You may have noticed this newsletter feels a little different. It’s a new look in a new year! MS Connection is an important connection to the vital local information and resources you need to live your best life, no matter where you live.

As we welcome spring, we also welcome the Walk MS® season. Walk MS helps us team up with friends, loved ones and coworkers to change the world for everyone affected by MS. Together, we become a powerful force. If you have not already registered, find your location and sign up at walkMS.org.

For the first time in the Society’s history, we have a bold campaign that provides an inspiring rallying point for every person in the MS movement. It’s called Breakthrough MS; read more on page 7.

Speak up during MS Awareness Week (March 5-11) and all year long; learn how on page 6. And join fellow MS activists in supporting MS-movement advocacy priorities online at nationalMSsociety.org/MSactivist.

I hope you enjoy the newsletter and take advantage of the myriad ways to get and stay connected. You’ll find wellness and other program opportunities along with support groups on page 11 and 12, with a comprehensive local calendars on pages 9 (Hawaii) and 10 (California).

We have so much progress to make together — connecting, giving, raising funds, speaking out and more!

Richard V. Israel President, Pacific South Coast

nationalMSsociety.org | 2

THE PROUD, STRONG AND INSPIRATIONALSometimes a person may not fully understand his or her own strength until an obstacle pushes them to persevere. For Sarah Ponce, that moment came when she was diagnosed with multiple sclerosis in 2014 at 24 years old.

“I wish I had known how strong I truly am and that everything was going to be ok,” she shares of her initial feelings towards the disease. “I am determined not to let MS stop me from living a fulfilling life.”

Along with family and friends, Walk MS® has been one of the many ways Sarah has found support. In 2015,

Sarah first walked with her team, We Love S’Myelin, and hasn’t looked back.

Sarah not only walks for a cure, but she also actively raises

money for the event. “I let [people] know that anything counts, no matter

what the amount,” she says. “I also share the resources that I use, like the MSconnection.org blog and helpful pamphlets on the latest research breakthroughs, which are only possible because of all the amazing people who donated.”

Her candor and passion crowned Sarah as “The Most Inspirational Walker” at last year’s Walk MS in Carlsbad. She hopes she can continue to support others affected by the disease.

“A world free of MS would mean no more relapses, no more pain,” she reflects. “It would mean I would be healthy and would not need any more medication. I hope and pray for a world free of MS.” n

Team We Love S’Myelin at Walk MS

Sarah and her husband, Justin, next to the wall of hope at Walk MS.

“Being involved with Walk MS makes me feel proud and strong,” she says. “I just want to give back and remind others impacted by MS that we can do this; we can end MS together.”

San Diego/Carlsbad 2017

SPONSOR:

3 | MS CONNECTION Spring 2017

ALOHA SPIRITHawaii’s aloha spirit and true acts of compassion have pushed the Kauai Walk MS®: Sunset Stroll as the top fundraising site in all the islands.Laurie Nakama first got involved with Walk MS in Kauai after she was diagnosed with multiple sclerosis in 2011. Though the news came as a shock, she didn’t let the disease overcome her determined spirit.

She decided to start by forming her Walk MS team, Family and Friends of Laurie Nakama. Laurie says she’s “passionate about Walk MS because it brings people together and embodies the aloha spirit.”

“The aloha spirit is about supporting each other,” she explains. “Nobody is left behind.”

Since Laurie became the chair of the Walk, she keeps this in mind in everything she does. She opens up her fundraising events and team registration

to anyone because she believes Walk MS is a community event that helps build connections and awareness for the disease.

“Walk MS is about being supportive to people who live with MS,” she shares. “You might not totally understand

MS, but you can show up to this event and learn more about what it’s like to live with MS every day. It’s a chance to ask questions to other people who support others with MS.”

It’s a small but mighty Walk, and Laurie leads the way to bring people together for the cause, like recruiting popular local entertainment and the mayor to attend. She doesn’t hold back in inviting just about anyone to join the MS movement, and it works.“It is the great community on the island of Kauai that makes it truly successful,” she reflects. “Someday a cure will be found, and I am doing what I can to be a part of that future.” n

“Someday a cure will be found, and I am doing what I can to be a part of that future.”

Laurie (second from right) enjoys a stroll along the beach with her team at Walk MS.

nationalMSsociety.org | 4For a full list of Walk locations, see page 9.

By the spring of 2016, Alec Phillips had come to terms with his early retirement from the police force due to his MS symptoms. He and his wife Carson were expecting a child, and the couple had worked hard to recruit close friends and family to their team to raise funds for Walk MS.

The team was enjoying the morning at their team tent, when Alec turned around to find the entire police force approaching. He soon found out they’d registered for the walk months before and fundraised — significantly — in secret in order to surprise Alec with their support that morning.

“I was speechless. I mean I knew they had my back, but it meant a lot [to have their support],” says Alec, “Especially for my friends and family to see it.”

The group included “the entire department —everyone from the Chief down. They even did a convoy

to the event [in police vehicles].” The morning culminated with an on-stage presentation of Alec’s retirement badge.

Now Alec is embarking on a photography business, and he, son Mack (born November 2016), Carson and their friends, family and colleagues — old and new — are moving life forward. Walk MS and other fundraising for the MS movement are surely in their plans for years to come. n

A SURPRISE VISIT

Left: Alec and the police department at Walk MS®

Right: Alec with his retirement badge

To register for Walk MS, make a donation or to start your team, visit walkMS.org.

THANK YOU TO OUR NATIONAL SPONSORS

5 | MS CONNECTION Spring 2017

MS AWARENESS WEEK MARCH 5–11You can help ensure that more people understand what life with MS can be like, and engage more people in the MS movement to do something about it.

When we connect with one another, we become stronger than MS — we make breakthroughs that we could not do alone. Please share your breakthroughs on any social media with the hashtag #WeAreStrongerThanMS. We’ll bring your post together with those shared by others across the nation — in a single location where all can find solutions, strength and inspiration through collective experiences during MS Awareness Week and throughout the year.

Together we are stronger. Together we will Breakthrough MS.

Visit WeAreStrongerThanMS.org

NATIONAL VOLUNTEER WEEK — APRIL 23–29

Volunteers at Walk MS®

Top: Amy, diagnosed in 1997, doesn’t let MS stop her from dancing. She dances from her chair and is also a choreographer. Bottom: Steve, diagnosed in 2006, still keeps surfing central in his life in spite of his MS.

Find your next opportunity at nationalMSsociety.org/volunteer

THANK YOU, VOLUNTEERS!

The Society has celebrated National Volunteer Week annually since the 1970s by honoring YOU!

Thank you for all you’ve done so far, and all that you will do and give in the years to come as part of the MS movement. Volunteers are changing lives every day!

nationalMSsociety.org | 6

People affected by MS are relying on us to do whatever it takes to accelerate breakthroughs — life-changing breakthroughs that enable people to live their best lives today and research breakthroughs that will end MS forever.

Every breakthrough matters. Every dollar counts. Give your best gift today.

TOGETHER WE WILL BREAKTHROUGH MS.

Learn more and watch the video at BREAKTHROUGHMS.ORG

BREAKTHROUGH

The Society’s top policy priorities include:• Continuous, quality health insurance coverage• Affordability and accessibility of MS medications

Advocacy news can change rapidly — stay up to date and take action by visiting:

nationalMSsociety.org/advocacypriorities

MS ACTIVISM

ANQUNETTE, DIAGNOSED IN 2013

The National MS Society has embarked on a

$1 BILLION DOLLAR FUNDRAISING CAMPAIGNto fuel breakthroughs that will change the world for people with MS.

JOSEPH, DIAGNOSED IN 2008

7

WELLNESS & RESILIENCE

RESILIENCE AND MS

EVERYDAY MATTERS

MS AND WELLNESS

People with MS and their families may find that the physical, emotional, spiritual or other challenges of living with the disease can feel overwhelming. But practicing behaviors that promote resilience can help not just to cope, but to thrive. Resilience helps create a mindset of growth and opportunities, of seeing obstacles as challenges rather than threats.

Some people have a natural tendency to be optimistic and to look for solutions. Even if that’s not the case for you, strategies to build resilience can be learned and practiced.

A new program is available 24/7 online and in-person at locations across the country — find your program at nationalMSsociety.org/resilience or call 1-800-344-4867.

Webinar & Telelearning Series: A Collaboration with Can Do MS

View the full list and descriptions, and register to join (online or by phone) at nationalMSsociety.org/telelearning or 1-800-344-4867.

The practice of positive psychology is centered on helping people thrive and become happier. Increase your knowledge of positive psychology principles and receive support to develop a personalized, concrete plan for implementing these principles and for achieving greater life satisfaction.

As one participant reported, “Everyday Matters provided me with real-life strategies I can use to handle problems, not only dealing with MS, but in life.”

Start now at nationalMSsociety.org/everydaymatters or 1-800-344-4867.

• March 14: Weight Management and Nutrition

• March 21: How to Navigate Leaving the Workforce (special date)

• April 4: Enhance Your Job Search with Online Resources (special date)

• April 11: Non-Cardio Exercise • May 9: Vision/Optic Neuritis • June 13: Accessibility

Held on the second Tuesday of each month, 8 to 9:15 p.m. ET

nationalMSsociety.org | 8

GET CONNECTEDHAWAII CALENDAR

Join Walk MS®Register at walkMS.org

Kauai: Sunset StrollSaturday, April 15 4:30 p.m. Kapa’a Beach Park

OahuMay 6 Check in at 9 a.m. Walk at 9:30 a.m. Sea Life Park

9 | MS CONNECTION Spring 2017

GET CONNECTEDCALIFORNIA CALENDAR

San Diego MS Symposium Saturday, March 18, 8:30 a.m.-12:30 p.m., Doubletree Mission Valley. nationalMSsociety.org/CAScalendar or 1-800-344-4867

Join Walk MS® Register at walkMS.org

• San Diego County Credit Union Walk MS: San Diego, Saturday, April 8

• San Diego County Credit Union Walk MS: Carlsbad, Saturday, April 22

• Irvine, Saturday, April 29

MS Golf Invitational Monday, May 1 at La Jolla Country Club. GolfMS.org

Day at the Bay Saturday, May 13 Mission Bay Aquatic Center, San Diego. nationalMSsociety.org/CAScalendar or 1-800-344-4867

Resilience: Addressing the Challenges of MS June TBD, Orange County. nationalMSsociety.org/CAScalendar

HEALTH AND WELLNESSA completed waiver is required to attend any of the listed classes; request your waiver form at 1-800-344-4867.Aquatics (Indoor)

• Carlsbad - Tues, 11:45 a.m.-12:45 p.m., Waterworks Aquatics, 2704 Gateway Rd

• Fullerton - Mon/Wed/Fri, 9-10 a.m., North Orange County YMCA. $6 per session

• Irvine - Tues/Thurs, 10:30-11:15 a.m., Waterworks Aquatics. Arthritis Foundation-Approved Class

Balance & Strength Training• Costa Mesa - Tues/Thurs,

10:30-11:30 a.m., Healthy Balance

• La Jolla - 2nd & 3rd Tues, 6-6:45 p.m., Ability Rehab Specialists

Yoga• Costa Mesa - Mon/Wed,

1-2 p.m., Yoga Works• Dana Point - Wed, 8-9:15

a.m., Dana Point Community Center

• Fullerton - Wed, 10:30-11:30 a.m., Friends in Christ Lutheran Church

• Santa Ana - Fri, 9:30-10:30 a.m., Goodwill Fitness Center

• San Diego - Sun, 10-11:00 a.m., Pacific Beach Training $5 per session

& More!• La Jolla - Thurs, 2-3 p.m.,

Scripps Memorial Hospital. $10 monthly fee. Cardiac Rehab 858-626-6493

• San Diego: MS FITT - Pacific Beach Training Fee-based. 858-483-2711

• San Diego: Pilates - Comprehensive Therapy Service Inc. $10 per class. Mandy 858-457-8419

• Santa Ana: Chair Zumba - Tues/Thurs, 11 a.m.-12 p.m., Goodwill Fitness Center. $10 per session. 714-361-6180

San Diego/Carlsbad 2017

SPONSOR:

nationalMSsociety.org | 10

Come together with people who share common life experiences or goals for support, education and mutual aid. The benefits of participation include:

• Learning new information and strategies for preventing or confronting problems

• Finding support from others — and the opportunity to help others

• Building confidence in your ability to cope and address issues

There are several support and self-help groups for people living with MS and their loved ones in Hawaii. The groups meet at various times and locations, often monthly, and are wonderful sources of friendship, understanding, compassion and information.

The groups are diverse — some broad in their focus, and others rallying around activities, life stages or specific experiences. They may discuss wellness or research topics—or just provide a great chance to socialize; participants can range from young adults to carepartners.

If you are not currently a member of a group, please consider joining one.

HAWAIIOahu Windward Talk Story Group 3rd Wed, 6-7:30 p.m. Hawaii Pacific University, Windward Campus. David Burton, Group Facilitator

Kauai Caregivers Talk Story Group Group meetings based on participant availability; regular communication via email. Contact Zoe at zoe.edwards@nmss.org

Kauai Talk Story Group 1st Wed, 5:30-7 p.m. This group travels to different parts of the island. Mary Kay Hertog and Laurie Weber Group, Co-Facilitators

Kona Talk Story Group 2nd Sun, 3-4:30 p.m., The Club Kona. John 808-896-2609

SUPPORT, CONNECTION & SELF-HELP GROUPS

11 | MS CONNECTION Spring 2017

nationalMSsociety.org | 12

SUPPORT, CONNECTION & SELF-HELP GROUPS

ORANGE COUNTYAnaheim: En Español 2nd Tues, 6:30-8:00 p.m. Rosa, rosam58@me.com or Susana, sueperezg@yahoo.comBrea 1st Fri, 10 a.m. - 12 p.m. Jim, langdonjames1942@gmail.com or Lisa, mcbryde99@hotmail.com Fullerton: Christian MS 2nd Tues, 7-8:30 p.m. Sara, irvinedrama@yahoo.comHuntington Beach: Minimal Symptoms 2nd Wed, 10 a.m.-12 p.m. Jeanne, novajeanne2@yahoo.com or Priscilla, pfwolz@aol.comHuntington Beach: Minimal Symptoms/Newly Diagnosed 4th Wed, 5-7 p.m. Sherri, sherri1022@gmail.com

Irvine: The Progressives 2nd Wed, 10 a.m.-12 p.m. Bonnie, sambon@pacbell.net or Mike, mmilne93@gmail.comLaguna Hills 1st Tues, 10 a.m.-12 p.m. Francine, frannydo@gmail.com or Susan, susan.fryc@yahoo.comLake Forest: MS with Christ 3rd Mon, 6:30-8 p.m. Cathy 949-842-2296 or David 949-470-9020Midway City 1st & 3rd Tues, 9:30-11:30 a.m. Pat 714-968-0277 or Linda, lindajohnson6735@yahoo.com or Carolyn, carolyncassell7@yahoo.comMission Viejo: Invictus 2nd Wed, 10 a.m.-1 p.m. Jerry, gtdowd@gmail.com or Susan, susanwatson2010@gmail.com

Newport Beach 3rd Sun, 2-4 p.m. Harriet, hap.bruce@aol.comSanta Ana: Man to Man 1st Wed, 10 a.m.-12 p.m. Jeffrey, jbblattner@gmail.comStanton 1st Tues, 12:30-2:30 p.m. Rosa, rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Mon & 4th Fri, 10 a.m.-12 p.m. Kathy, kkacacia@aol.com or Rob, robert.retired@hotmail.comYoung Adult Group: Young and Strong Together 3rd Wed, 6-8 p.m. Ashlee, abg1193@yahoo.com or Christy, christy.horning@yahoo.com

SAN DIEGO Chula Vista 3rd Wed, 11 a.m.-1 p.m. Adriana, font.ka@gmail.comEncinitas 1st Fri, 6-8 p.m. Melinda, melindabrizendine@gmail.com or Michele, m.easterling68@gmail.comEscondido 3rd Wed, 1-3 p.m. Michele, m.easterling68@gmail.comEscondido: Christian Group HopeKeepers 4th Sat, 11 a.m.-1 p.m. Jim, hopekeeperjim@gmail.com

Ramona 2nd Tues, 11 a.m.-12 p.m. Van 760-789-9129San Diego: I Can’t Remember Group 1st Wed, 11 a.m.-12:30 p.m. Carol, csrohan@crohan.comSan Diego (Clairemont/La Jolla) 1st Fri, 10:30 a.m.-12:30 p.m. Alicia, aring24@san.rr.com

San Diego (Mission Valley): Men’s Group 1st Tues, 6-7:30 p.m. Mike, mdkolender@aol.com or Marcus, marcusib@yahoo.comSan Diego (Mission Valley) 4th Mon, 2-3:30 p.m. Jane, jane.schnabel@sbcglobal.net or Linda, chemobrain@san.rr.comSpring Valley 2nd Sat, 12:30-2 p.m. Angela, gela0726@gmail.com

For an up-to-date list of groups and meetings — including group-leader contact information and group location — visit nationalmssociety.org/CASSHG, call 1-800-344-4867 or email contactusNMSS@nmss.org

Over the years, this particular MS support group has gone through a lot of changes, but one thing has stayed the same: the spirit of the people who are a part of it. The group doesn’t have an official name, nor does it have an official leader; instead, each person gives what they are good at, offering different activities or events each week.

“We try to keep a structure so people feel like there’s a good reason to go to the meeting,” says Chapman.

Chapman, a former social worker, helps devise what she terms “mental-health activities” that the whole group does together. “We do brain-stimulation games — just fun things to stimulate our synapses and keep ourselves mentally alert.”

A different week, someone else may lead craft activities, or the group may hold a potluck dinner or watch a movie. Deena Lisak, a certified MS

nurse, often discusses medical issues and new MS research.

However, most important, Chapman feels, is the opportunity for people to interact. “I look forward to seeing people,” Sue says. “It’s a good social connection.” Even if they don’t meet because of weather or other reasons, they still connect by phone or email.

The group is open to anyone living with MS. “It’s diverse,” says Chapman. “Not everyone has the same symptoms or limitations.” Instead, some members manage cognitive issues, while others may have mobility challenges. “We welcome new people,” she adds. “Come see what we’re all about.” n

“The group has got so much spirit. And so much enthusiasm.” —Sue Chapman (center), diagnosed in 1974

CONNECTIONTHE SPIRIT OF

To search groups nationwide, visit nationalMSsociety.org/groups, connect online at MSconnection.org or call 1-800-344-4867. No group near you? Talk with an MS Navigator about establishing one at 1-800-344-4867.

13 | MS CONNECTION Spring 2017

ONE DESTINATION: A WORLD FREE OF MS.

THANK YOU TO OUR PREMIER NATIONAL SPONSORS

Bike MS® is more than a ride. It’s an experience grounded in camaraderie and marked by passion, inspiration, determination and pure enjoyment. It will be an experience you’ll never forget, shared with new friends and old.

Much more than the ride of a lifetime, with each pedal stroke you’ll be helping us reach our goal — a world free of MS.

900 South Broadway Second FloorDenver, CO 80209

REGISTER › BIKEMS.ORG