WINTER 2017 PACIFIC SOUTH COAST CHAPTER
MS CONNECTION NEWSLETTER GET INVOLVED IN ANY NUMBER OF WAYS!
INSIDE 03 THIS ISSUE
THE CHALLENGE OF A LIFETIME
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MARK YOUR CALENDARS
FIVE WAYS TO HEALTHIER HOLIDAYS
MS AMBASSADOR PROGRAM
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MS CONNECTION: WINTER 2017
LETTER FROM THE PRESIDENT & BOARD CHAIR
BREAKTHROUGH MS
As we say goodbye to 2016 and look forward to a successful 2017, we end on a note of positive transformation. Research breakthroughs continue to fuel the treatments and solutions that will stop the disease in its tracks, restore what has been lost, and end MS forever. Life-changing breakthroughs ensure people have what they need to navigate the challenges of living with MS, so they can live their best lives every day. What is a breakthrough? It’s being able to button your shirt in the morning. It’s walking to the supermarket, and all the way back home. It’s getting back up on that bike, that surfboard, that horse. It’s having the first dance at your daughter’s wedding. Feeling strong enough to fall in love. Continuing the job you were made for. It’s knowing that you and your loved ones will never worry about MS again – ever. We’re not satisfied until we break through MS for every person living with this disease.
Rich Israel and Justin Reckers
In this issue, you will learn about the exciting new research initiatives and how, together, we will do whatever it takes to change the world for people with MS (page 13). We are excited to celebrate our 2016 achievements and outstanding volunteer leaders with you at our Annual Meeting (page 11). Read a recap of our successful fall events, Challenge Walk MS (page 3), MS Dinner Auction (page 4) and Bike MS: Bay to Bay (page 16), and the many ways you can join the movement in the upcoming year. We look forward to implementing strategies in 2017 focused on improving the lives of everyone affected by MS and ensuring another successful year. Cheers to 2016! Gratefully, Richard V. Israel Justin Reckers President Chair, Board of Trustees 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 Multiple Sclerosis 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.
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NATIONALMSSOCIETY.ORG | 800-344-4867
FUNDING THE MISSION
THE CHALLENGE OF A LIFETIME Over 180 participants joined us this past November at Challenge Walk MS. This amazing group raised over $650,000 for MS while creating awareness over their 3-day, 50-mile journey. Congratulations to our top teams in each division! I. Hurt SO Good! II. Aye, Aye Captain III. Team Momentum IV. MSchievous MooSe
$71,239.38 $31,461 $29,083 $13,960
Check out our Elite Feet Top Fundraisers, each raising over $10,000!
Team Hurt SO Good! at Challenge Walk MS!
Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS. Join us in 2017. Learn more at myMSchallenge.com or call 855-372-1331.
THANK YOU to premier national sponsor: Anne Allen $24,780 Jeanne Woodard $17,600 Brian Grey $11,401 Joyce Savage $11,125 THANK YOU to our 2016 local sponsors:
NATIONAL MULTIPLE SCLEROSIS SOCIETY Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 1221 E. Dyer Rd., Suite 140 Santa Ana, CA 92705 800-344-4867 | MSpacific.org
Board Chair: Justin Reckers Chapter President: Richard V. Israel Editor & Design: Christine Wiley Associate Editor: Leslie Roach Associate Designer: Sherin Tebbi © 2016 National Multiple Sclerosis Society, Pacific South Coast Chapter
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MS CONNECTION: WINTER 2017
FUNDING THE MISSION
“A BRAZILIAN CARNIVAL” IS A BIG SUCCESS Nearly 650 people attended the 30th Annual MS Dinner Auction “A Brazilian Carnival” on November 19th at Loews Coronado Bay Resort. Over $450,000 was raised to support the National MS Society! This lavish affair included a delicious fourcourse dinner, Brazilian themed entertainment and dancing to band favorites, The Heroes. Over 600 auction packages were featured including trips, entertainment, a beautiful collection of jewelry by Leo Hamel Fine Jewelers, lavish wine,
Tricia Chandler and guests wearing festive masks to capture the theme.
memorabilia and so much more. An incredible video was presented during the evening featuring Carl and Heather Craig. Heather was diagnosed with MS at just fourteen years old and struggled to find the right treatment to help manage her symptoms. Due to MS funded research and discovering numerous disease modifying drugs, Heather has now been given the ability to live a “normal” college life. Heather’s father Carl, found
Jennifer Monje with Carl and Heather Craig
hope in the National MS Society’s website during the initial dark days of his daughter’s diagnosis and has been by her side in the fight to find a cure for MS ever since. Both Carl and Heather have expressed how grateful they are for the Society’s work and the donors and fundraisers who make it all possible. The audience was incredibly moved by this powerful father-daughter duo as they honored them with a standing ovation followed by pledges to continue to support those affected by the disease and fund research to find a cure. Thank you to all who attended and supported this incredible evening. Visit MSdinnerauction.com to see pictures from the event. Don’t forget to follow us yearlong on Facebook at facebook.com/MSDinnerAuction to get updates, auction item previews and much more! Are you interested in getting involved with this event in 2017? Consider joining the Auction committee, sponsoring the event, or purchasing a table. For more information, contact Heather Dean at 760-448-8417 or heather.dean@nmss.org.
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NATIONALMSSOCIETY.ORG | 800-344-4867
FUNDING THE MISSION
SAVE THE DATE FOR 2017! SATURDAY, APRIL 8, 2017 NTC PARK AT LIBERTY STATION SAN DIEGO, CA
SATURDAY, APRIL 29, 2017 UNIVERSITY OF CALIFORNIA IRVINE, CA Join us in welcoming back Fish & Tsang LLP, our Walk MS Irvine presenting sponsor. Fish & Tsang is a premier intellectual property law firm. In their first year as a team, they walked with nearly 40 members and were a top fundraising team! In addition to Walk MS, the Fish & Tsang team participated in Bike MS in 2016. We are thrilled to have them back and look forward to seeing team Fish & Tsang at the 2017 walk!
SATURDAY, APRIL 22, 2017 ARMADA DRIVE CARLSBAD, CA
Team Fish & Tsang at Walk MS in Irvine
Not only is San Diego County Credit Union our title sponsor for the San Diego and Carlsbad events, their walk team took a stand against MS at Walk MS 2016 with 96 team members bringing in over $10,000! San Diego County Credit Union was founded on the principle that people come first and profits second. This forwardthinking approach in the banking industry has propelled SDCCU to become San Diego’s best Credit Union and largest locally-owned financial institution. We can’t wait to have them back for Walk MS 2017!
ARE YOU INTERESTED IN MAKING AN IMPACT ON WALK MS? We’re looking for volunteers for our Walk MS Committee! The purpose of the community walk committee is to partner with the Walk MS staff to create an exceptional Walk MS experience focusing on fundraising, team and volunteer engagement and event logistics. Join the Committee! For more information, contact Tiffany Lynch at 760-448-8435 or email Tiffany.Lynch@nmss.org
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MS CONNECTION: WINTER 2017
LIVING WITH MS
A STEADFAST SPIRIT BY BELLA BALLIN I used to think I was invincible. As I entered my teen years, I thought that everything that made up my being was untouchable. All it took was a walk down a street to shatter those assumptions.
BELLA BALLIN
That day, I noticed something peculiar about a man who was walking toward me. He had no facial features. At first, I assumed my glasses were dirty. However, I realized there was a dense white cloud blocking the vision in my left eye. This sudden blindness was only one symptom of an as-yet-unknown illness that also brought fatigue and constant headaches.
So I started to rebuild. I fought to keep up with my academics. I learned to study new concepts and I discovered new passions. Mathematics has become my favorite language and I want to gain complete fluency in it. I want to work to add meaning to complex numbers and values in the real world. I want to find those meanings not only for myself, but to share those meanings with others.
Once I realized my health was vulnerable, my spirit was shaken. The strong-willed girl who lived without fear or doubt was no more. The confidence I once had in my ability to balance my academics with my family responsibilities was replaced with doubt that I could keep up with everything.
One day I got a name for my mysterious illness: multiple sclerosis. Lying in a hospital bed, getting treatment at last, I scoffed at my old belief in invincibility. No, I am not invincible but my spirit is untouchable. Even if my health fails and my body crumbles, I will always be able to rebuild my spirit.
I wanted to give into the excuse that I couldn’t do as well because I could no longer work to my full capacity. I wanted to justify taking it easy. However, I knew the only one accountable for my actions was me. I knew that no matter how ill I became, if there was any chance for recovery, I would never forgive myself for giving up.
Bella Ballin, diagnosed with MS in 2013, is studying chemistry at Carnegie Mellon University in Pittsburgh.  A National MS Society Scholarship helped Bella Ballin achieve her education dreams. To learn more, visit nationalMSsociety.org/scholarship.
Unless otherwise indicated, to register for any of the listed events, please visit MSpacific.org, click “Calendar” and select the date of the event, or call 800-344-4867 and press “1”.
MARK YOUR CALENDAR
LOCAL EVENTS ANNUAL SYCUAN FAMILY HOLIDAY PARTY
Saturday, December 10 11:00 a.m. - 2:00 p.m. San Diego Concourse, Golden Hall 202 C Street, San Diego, CA 92101 Come enjoy a wonderful meal provided by the Sycuan Band of the Kumeyaay Nation while enjoying festive holiday entertainment with friends from all over!
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For more information on the scholarship criteria and how to apply, please visit NationalMSSociety.org/scholarship or call 800344-4867 and press “1”.
NEWLY DIAGNOSED PROGRAM
Saturday, February 11 9:30 a.m. - 12:30 p.m. Laguna Cliffs Marriott 25135 Park Lantern, Dana Point, CA 92629 See page 11 for more information.
Thursday, January 12 6:00 p.m. – 7:00 p.m. Thursday, March 9 6:00 p.m. – 7:00 p.m. A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you are facing. This web based program will be conducted by Dr. Elizabeth Crabtree, Assistant Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center. A phone and computer with internet access will be necessary to join this program. To register, please call 800-344-4867 and press “1.”
SAN DIEGO SYMPOSIUM
CAN DO MULTIPLE SCLEROSIS
BREAKTHROUGH MS: ANNUAL MEETING OF MEMBERS
Saturday, March 18 8:30 a.m. - 12:30 p.m. Doubletree Mission Valley 7450 Hazard Center Drive San Diego, CA 92108 Join Dr. Jody Corey-Bloom from UCSD and other MS professionals who will share the latest information about symptom management, MS treatment, and research.
ONLINE PROGRAMS 2017 EDUCATIONAL SCHOLARSHIP PROGRAM
Enrollment is now open for the 2017 National MS Society Carol and Bob Webster Memorial Scholarship Fund for all qualified individuals who are living with MS or have a parent living with MS. The deadline is January 18, 2017 so don’t delay!
December 13 – Importance of Sleep January 10 - GPS for your MS February 15 - Negotiating Reasonable Accommodations Can Do MS Webinar Series is brought to you with the help of Can Do Multiple Sclerosis (formerly The Heuga Center for Multiple Sclerosis). Join live from the convenience of your home or office at no charge for an indepth discussion. This unique opportunity offers interaction with a team of Can Do MS consultants to ask questions and learn how to adopt healthy lifestyle behaviors, actively comanage your MS and live your best life. All calls are from 5:00 p.m. – 6:15 p.m.
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MS CONNECTION: WINTER 2017
CONNECTION GROUPS
We have long recognized our responsibility to respond to the emotional needs and challenges that MS imposes on individuals and their families. Experience and research has revealed that group support is an effective strategy to help people face matters related to change and loss, achieve personal insight, foster new hope, build self-esteem, and facilitate behavioral changes. We offer 29 Connection Groups covering an array of topics. These connection groups bring together people who share a common life experience for support, education and mutual aid.
ORANGE COUNTY
Anaheim: En EspaĂąol Familiares y amigos son bienvenidos el segundo martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St 6:30 p.m. - 8:00 p.m. Rosa Ferreras 714-758-0829 rosam58@me.com Susana PĂŠrez 714-235-7570 sueperezg@yahoo.com Brea 1st Friday, 10:00 a.m. - 12:00 p.m. Jim Langdon 714-392-2052 langdonjames1942@gmail.com Lisa Seifert 714-826-6393 mcbryde99@hotmail.com Fullerton: Christian MS Support Group 2nd Tuesday, 7:00 p.m. - 8:30 p.m. Sara Minton 714-773-4332 irvinedrama@yahoo.com Huntington Beach: Minimal Symptoms 2nd Wednesday 10:00 a.m. - 12:00 p.m. Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526 pfwolz@aol.com
Huntington Beach: Minimal Symptoms/Newly Diagnosed 4th Wednesday, 5:00 p.m. - 7:00 p.m. Sherri Brash 714-846-2064 Sherri1022@gmail.com Irvine: The Progressives 2nd Wednesday 10:00 a.m. - 12:00 p.m. Bonnie Richmond 949-677-4272 sambon@pacbell.net Mike Milne 949-322-3156 mmilne93@gmail.com Laguna Hills 1st Tuesday, 10:00 a.m. - noon Francine Grasso 949-278-6935 frannydo@gmail.com Lake Forest: MS with Christ 3rd Monday, 6:30 p.m. - 8:00 p.m. Cathy Varela 949-842-2296 David Corich 949-470-9020 Midway City 1st & 3rd Tuesdays 9:30 a.m. - 11:30 a.m. Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-846-0598 carolyncassell7@yahoo.com
Mission Viejo: Invictus 2nd Wednesday 10:00 a.m. - 1:00 p.m. Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Newport Beach 3rd Sunday, 2:00 p.m. - 4:00 p.m. Harriet Pavidis 714-839-5529 hap.bruce@aol.com Santa Ana: Man to Man 1st Wednesday 10:00 a.m. - 12:00 p.m. Jeffrey Blattner 714-472-0904 jbblattner@gmail.com Stanton 1st Tuesday, 12:30 p.m. - 2:30 p.m. Rosa Ferreras 714-758-0829 rosam58@me.com
NATIONALMSSOCIETY.ORG | 800-344-4867
Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10:00 a.m. - 12:00 p.m. Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-528-8404 robert.retired@hotmail.com Young Adult Group: Young and Strong Together 3rd Wednesday, 6:00 p.m. - 8:00 p.m. Ashlee Gallard 805-914-8438 abg1193@yahoo.com Christy Horning 760-485-3174 christy.horning@yahoo.com
SAN DIEGO
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday 11:00 a.m. - 1:00 p.m. Adriana Flores 619-708-3678 font.ka@gmail.com Encinitas San Diego County Credit Union Community Room 501 North El Camino Real 1st Friday, 6:00 p.m. - 8:00 p.m. Melinda Brizendine 760-944-4549 melindabrizendine@gmail.com Michele Easterling 760-805-6390 m.easterling68@gmail.com
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Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday 1:00 p.m. - 3:00 p.m. Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido: Christian Group HopeKeepers Escondido 4th Saturday 11:00 a.m. - 1:00 p.m. Cross Connection Church 1675 Seven Oaks Rd. Room 4 Jim Johnston 619-933-6523 hopekeeperjim@gmail.com Ramona 2nd Tuesday 11:00 a.m. - 12:00 p.m. Van Reeder 760-789-9129 San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st Wednesday 11:00 a.m. - 12:30 p.m. Carol Rohan 858-755-2440 csrohan@crohan.com San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Friday, 10:30 a.m. - 12:30 p.m. Alicia Ring 858-456-8766 or 858-229-6600 aring24@san.rr.com
San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:00 p.m. - 7:30 p.m. Mike Kolender 858-274-7114 mdkolender@aol.com Marcus Brown 619-248-2667 marcusib@yahoo.com San Diego (Mission Valley) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2:00 p.m. - 3:30 p.m. Jane Schnabel 619-758-9470 jane.schnabel@sbcglobal.net Linda Knapp 858-273-7835 chemobrain@san.rr.com Spring Valley Hillsborough Recreation Center 1208 Manzana Way 2nd Saturday 12:30 p.m. – 2:00 p.m. Angela Kretschmar 619-303-7806 Gela0726@gmail.com
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TO ATTEND ANY OF THE LISTED CLASSES, A WAIVER IS REQUIRED. PLEASE CONTACT 800-344-4867 TO REQUEST A WAIVER TODAY.
HEALTH & WELLNESS CLASSES YOGA
AQUATICS
Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 1:00 p.m. - 2:00 p.m. Wednesdays, 1:00 p.m. - 2:00 p.m.
Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays 11:45 a.m. - 12:45 p.m.
Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 a.m. - 9:15 a.m.
Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tuesdays and Thursdays 10:30 a.m. - 11:15 a.m.
Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 a.m. - 11:30 a.m. Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:30 a.m. - 10:30 a.m. San Diego Pacific Beach Training 4440 Ingraham St. Sundays, 10:00 a.m. - 11:00 a.m. $5 per session
BALANCE & STRENGTH TRAINING Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Tuesdays and Thursdays 10:30 a.m. - 11:30 a.m. La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st and 3rd Tuesdays, 6:00 p.m. - 6:45 p.m.
IN YOUR NEIGHBORHOOD La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 2:00 - 3:00 p.m. $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Pacific Beach Training 4440 Ingraham Street Fee-based class. Call 858-483-2711 for more information. San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mandy Johnston 858-457-8419 $10 per class Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mon, Wed. & Fri,. 9:00 - 10:00 a.m. $6 per session Santa Ana: Chair Zumba Goodwill Fitness Center Tues. & Thur. 11:00 a.m. - 12:00 p.m. $10 per session. Call 714-361-6180 for more information.
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NATIONALMSSOCIETY.ORG | 800-344-4867
LIVING WITH MS
RESOURCES FOR THE HOLIDAYS The holidays can be a festive time to celebrate with your loved ones, but to some with limited income, the holidays can be filled with stress. If you or someone you care about is in need of assistance around the holidays, reach out to your local 2-1-1 resource and information center to get connected to holiday assistance programs available in your area. Services including holiday meals, gift baskets, and even toys for children may be available to individuals and families in need.
2-1-1 is a resource and information center that connects people with their community health and disaster services through a free 24/7 phone service and online database. It is a valuable community resource for the holidays and throughout the entire year. See below for an office that serves you: San Diego County Orange County 858-300-1211 949-646-4357 211sandiego.org 211oc.org
YOU’RE INVITED
BREAKTHROUGH MS: ANNUAL MEETING OF MEMBERS Saturday, February 11 9:30 a.m. - 12:30 p.m. Laguna Cliffs Marriott 25135 Park Lantern, Dana Point, CA 92629 Now is the time to do whatever it takes to accelerate breakthroughs that change the world for people with MS – life-changing breakthroughs that enable people to live their best lives today and research breakthroughs that will ultimately end MS. Learn more about these breakthroughs at our Annual Meeting of Members. We will also recognize outstanding volunteers, elect our Board of Trustees and learn about new treatments and research from Dr. Charles Smith of Scripps.
Rich Israel with Heidi and Maclaine Parish, and Board Members Troy Parish and Cynthia Perazzo
Register Today! For more information or to register for the Annual Meeting of Members, please visit annualmeeting.mspacific.org.
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MS CONNECTION: WINTER 2017
LIVING WITH MS
FIVE WAYS TO HEALTHIER HOLIDAYS BY MARCELLA DURAND Staying on a diet can be tough even under the best of conditions—which holiday gatherings of family and friends definitely aren’t. But there are ways to stay strong. Following are some tips that may help you steer toward healthier holiday eating. 1. Plan ahead. Look at your schedule for the next month or so, and identify where you’d most like to be and what you’d most like to do, keeping in mind what will be easiest on you and your eating needs. If you’re hosting, plan a simple menu that includes fruits and vegetables—which can be easier to prepare than other dishes. For instance, prewashed salad can just be put in a bowl with some olive oil and vinegar on the side, while grapes make a sweet and easy after-dinner treat. 2. Control your environment. Try skipping that large holiday party in favor of a small potluck gathering of friends and family. That way, you’ll have more control over what food will be in front of you. Bring a salad or plate of raw-vegetable crudités to ensure that a healthy and delicious option will be available. Fill your own plate to ensure you’re not overserved. If you must go to the large party, snack on something healthy ahead of time so you don’t arrive starving
TRY ADDING VEGETABLES TO YOUR HOLIDAY MEALS. 3. Say no. It’s OK to say no to second servings, desserts, another glass of wine or even staying too long. If you find yourself sticking close to the food table and stuffing yourself because a party is too loud and conversations too difficult to follow, don’t feel bad about leaving early—your hosts will appreciate the time you were there. 4. Manage expectations (and be easy on yourself ). If you eat something you shouldn’t, it’s not the end of the world— everyone lapses occasionally. Take control by selecting special treats that you’ll really enjoy, such as a bit of cheese or a special dessert. And then balance them out with more salad or other healthy options. 5. Substitute. Swap olive oil for butter, fish for meat, vegetables for stuffing, and fruit and nuts instead of dessert. The possibilities are endless for healthy and delicious alternatives! To learn more about healthy eating and MS, visit nationalMSsociety.org/diet. Marcella Durand is a writer and editor who lives in New York City.
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NATIONALMSSOCIETY.ORG | 800-344-4867
JOSEPH, DIAGNOSED IN 2008
ANQUNETTE, DIAGNOSED IN 2013
BREAKTHROUGH MS DOING WHATEVER IT TAKES TO
CREATE A WORLD FREE OF MS MS breakthroughs happen every day. It’s being able to button your shirt in the morning. It’s walking to the supermarket, and all the way back home. It’s getting back up on that bike, that surfboard, that horse. It’s having the first dance at your daughter’s wedding. Feeling strong enough to fall in love. Continuing the job you were made for. Now is the time to accelerate breakthroughs that change the world for people with MS — life-changing breakthroughs that enable people to live their best lives today and research breakthroughs that will ultimately end MS.
Research breakthroughs Research breakthroughs continue to fuel the treatments and solutions that will stop the disease in its tracks, restore what has been lost, and end MS forever.
Life-changing breakthroughs Life-changing breakthroughs translate research breakthroughs into action by removing barriers in the way of access to healthcare and optimal wellness, and provide what is needed to navigate the challenges of living with MS each day. Both research and life-changing breakthroughs are crucial for each person to achieve the personal breakthroughs needed to live their best life.
Every single breakthrough matters for those with MS. What does it take to change a life? We’re not satisfied until we can answer this question for every person affected by MS. We only accomplish this when everyone works and gives together and we need you to lead the charge. Your gift will create change in the lives of people with MS. Whether it’s a solution for everyone affected by MS or personal breakthroughs for each individual, we will do whatever it takes to change the world for people with MS.
Every breakthrough matters. Every dollar counts. Give your best gift today. Together we will Breakthrough MS.
1-800-344-4867 | nationalMSsociety.org
Together We Are Stronger.
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MS CONNECTION: WINTER 2017
LIVING WITH MS
SAY YES TO YOURSELF BY CAT STAPPAS I’ll never forget him in his ill-fitting trench coat and his cartoonish large head towering over us, just a bunch of wide-eyed, snot-covered children in elementary school. His name was Officer McGruff, the Crime Dog. He pointed his furry finger at us while an un-costumed police officer warned us against the dangers of drugs. I looked up to McGruff. We had a bond. We understood each other. I knew this because a year or two earlier, I had won a safety poster drawing contest and was awarded with my very own plush McGruff doll. It may as well have been an official sheriff’s badge and a key to the city. I was now a safety expert. I took everything he stood for to heart. I mean, he had a trench coat and everything! Like most other children in today’s world, I vowed to: Say NO to drugs. Say NO to strangers. Say NO to cigarettes. Say NO to alcohol. Say NO to peer pressure.
We were being prepared for real-life situations, all harmful to varying degrees. We were taught to be empowered, to be our own advocates in potentially dangerous situations. But what happens when we get older? I still have to say no to alcohol (thanks, Rebif!), that creepy guy at the bar, and that second (third?) slice of cake, but what poor sap in a sweaty mascot suit do we have to prepare us for the times we need to say NO to good things? I always imagined that my young adult “NEVER DID I years would be full IMAGINE THAT of late nights, parties and whatever else I’D ONE DAY HAVE it is that kids think adulthood is all TO SAY NO TO about. I’m in my MY FAMILY AND early thirties now, and while that at one FRIENDS, IN FAVOR time seemed ancient, OF MY HEALTH.” let’s face it, the thirties are the new twenties and I should be blossoming right now. And I suppose I am, in my own way. But sometimes I get lonely.
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NATIONALMSSOCIETY.ORG | 800-344-4867
wellbeing are so, so precious. I’m not made of rubber, like I was when I was a kid, and none of us are exempt from the surprises that life throws at us.
CAT STAPPAS Never did I imagine, as I sat cross-legged on the floor in my old elementary school, rocking the latest and most neon early ’90s fashion, that I’d one day have to say no to my family and friends, in favor of my health. I’m so tired now, so very fatigued. My friends are still very social creatures (and good for them!), and many times I have to turn down their invitations. Instead I live vicariously through social media from the inside of my blanket burrito on the couch. I fear that these invitations will come along less frequently and maybe eventually stop. But, so far, the opposite has happened. Have I “lost” some people along the way? Yes. But they’re not missing. I’ve realized that the people who truly matter, the ones that really care about me, will understand when and why I sometimes have to decline an invitation. And these are the relationships of mine that are evolving and maturing. If there is one thing I’ve learned and really grown to accept and embrace in these last three years of living with MS, it’s that your health and
People will come in and out of your life, but you only get one body and that one meat suit is what you’ll be driving for the rest of your life. Love it! Thank it! One heart, two lungs, one set of limbs, one brain. I still have a ways to go, but I’ve learned to better nurture these things to hopefully avoid any more permanent damage. I’ve learned to be more in tune with my body and listen, really listen to it. Say YES to fostering healthy, positive lasting relationships. Say YES to your body when it calls for attention, trying to warn and protect you. Say YES to continuing to live your life as you normally would, while remaining mindful of how it may affect your health. Say YES to your tomorrow, because today’s choices will leave an impact. Say YES to YOU. We don’t need a dog in a trench coat to tell us that. Cat Stappas was diagnosed with MS in 2013. She writes about her experiences in her blog, itsonlyabruise.wordpress.com. To connect with others living with MS and share your experiences, visit MSconnection.org.
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MS CONNECTION: WINTER 2017
FUNDING THE MISSION
NEARLY $2.3 MILLION FOR BIKE MS! Over 2,000 cyclists and 500 volunteers joined us on October 22 and 23 for the Bike MS: Bay to Bay, presented locally by Monster Energy Company and Hansen Beverage Company. Participants have raised more than $2.3 million so far and are well on their way toward reaching our $2.5 million goal! You can help us achieve this incredible goal by donating at biketofinishMS.com!
THIS IS WHY WE RIDE: KASEY JENSON
Every year, we honor someone living with MS who participates in Bike MS as the Lloyd von Sprecken Most Inspirational Rider. The Lloyd von Sprecken Most Inspirational Rider Award was created in honor of Lloyd and his family’s determination to create a world free of MS. This year, there were more than 60 people who live with MS and rode 25, 100, 125 or 150 miles. Lloyd von Sprecken wrote us an inspiring letter to nominate Kasey, “For several decades during her adulthood we touched bases only infrequently. Then in 2012, we discovered a powerful reason to stay in touch and support each other more frequently. That was the year she was diagnosed with R&R M.S. and I was in my 15th “MS year”. After several years of problematic and undiagnosed vision problems, she awoke one day to a total loss of vision. An observant ophthalmologist referred her to a neurologist who diagnosed her M.S. Since then she has
Kasey, Lloyd (center) with other Most Inspirational Riders
rebounded from three major relapses requiring aggressive treatment and has only recently retired from work as she was not able to perform to her own high standards. Strong support from her family and friends has fueled her determination and dedication to live well with this unwelcome visitor and support the research and service goals of the Society. That summer she immediately took to her bike and entered an MS ride in Santa Barbara. Impressed by her feat of completing the 150 mile ride solo, her friends joined her mission and created a team of riders, KC Riders. Amazingly, since then, they have completed four rides in California and one each in Oregon and Washington. Their desired goal was to one day ride in the gem of all MS rides, Bike MS: Bay to Bay. When I told her of the Lloyd’s Lagers 5 year reunion ride, it was a no brainer for her and her team to join us in this event. After years of supporting each other from a distance this was the ideal opportunity for us to ride together for the first time. For me, it may well be the last time, but for her, it will be the beginning of many more.” Congratulations to our 2016 Lloyd von Sprecken Most Inspirational Rider, Kasey Jenson!
NATIONALMSSOCIETY.ORG | 800-344-4867
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MS AMBASSADOR PROGRAM
TOGETHER WE ARE STRONGER: MS AMBASSADORS ENGAGE, EDUCATE & ENCOURAGE BY AMY FRANCIS-DECHARY For many people, meeting an MS Ambassador is a life-changing experience. These grassroots volunteers not only educate others about MS, research efforts, and fundraising activities; they also promote critical services and programs for people living with MS. Diagnosed with MS in 2010, Mark Mahigian watched MS Ambassadors in action at Pacific South Coast Chapter events such as the 2015 Farmers Open Golf Tournament fundraiser. They inspired him to join the program and tell others about his life with MS. “It’s important to dispel the notion that everyone is affected the same way by the disease. We do this by getting different people’s stories out there,” he says. “I love telling my own story because it’s so bizarre. I woke up one day and couldn’t figure out how to tie my tie.” Often accompanied by his wife Ginny, Mark engages a wide variety of audiences at events ranging from San Diego State University’s
Mark and Ginny Mahigian
DiversAbility Awareness Information Day to talks at local Rotary Clubs. One of his favorite Ambassador experiences occurred at a DIY concert event, where he met a woman whose brother was newly diagnosed. “Not only was she educating herself, but she also was providing her brother with appropriate referrals,” he says. “It was so rewarding to give information to someone who didn’t know where to go.” The Pacific South Coast Chapter currently has 50 MS Ambassadors. As part of their oneyear commitment, they receive training in MS education, advocacy, chapter programs and events, and the history and structure of the National MS Society. They participate in quarterly communications with program managers, attend at least one chapter program or fundraising event, and take part in at least two events such as health fairs and team fundraisers. For more information, go to MSpacific.org, and select ‘Volunteer,’ or call 800-344-4867
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MS CONNECTION: WINTER 2017
FUNDING THE MISSION
BUBBLES AND BRUNCH TO END MS, A SPARKLING SUCCESS! The 3rd Annual Bubbles & Brunch to End MS event sponsored by Biogen in August at the Island Hotel in Newport Beach was an incredible success that raised over $72,000. Guests enjoyed a beautiful reception with silent auction items, a delightful candy bar, a fun jazz band, a three-course brunch and much more. Keynote speaker, Wendy Booker, who is the first person with MS to summit six of the world’s seven summit’s, reach both the North and South pole, and now attempt to compete in the Iditarod, passionately shared how we all have a mountain to climb in life, and for her it is MS. She encouraged us all to support one another and never give up hope of reaching the summit. The success of this event would not have been possible without a passionate committee who cares deeply about the Society.
THANK YOU TO OUR 2016 BUBBLES & BRUNCH COMMITTEE
Amy Dechary, Sara Haedtler, Hilary Kaye, Addie Martini, Sonal Mehta, Jodi Most, Cynthia Perazzo, Charmaine Rood, Annaliese Train and Committee Chair Cindy Locke
Board Member Nick Locke, Bubbles Committee Chair Cindy Locke and their children
Visit BubblesandBrunch.org to see pictures from the event. Don’t forget to follow us yearlong on Facebook at www.facebook.com/ BubblesandBrunch to get updates for 2017. Are you interested in getting involved with this event in 2017? Consider joining the committee, sponsoring the event, or purchasing a table. For more information, contact Heather Dean at 760-448-8417 or heather.dean@nmss.org.
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NATIONALMSSOCIETY.ORG | 800-344-4867
FUNDING THE MISSION
INCREDIBLE FOUNDATION SUPPORT IN 2016! Many thanks to the following foundations and trusts who provided $128,050 in grants in 2016. With their support, we were able to serve 51,500 people affected by MS in Orange, San Diego and Imperial Counties and the Hawaiian Islands. • • • • • • • • • • • •
The Allergen Foundation Change a Life Foundation CSA, San Diego Unified School District Cushman Foundation Disneyland VoulntEARS Community Fund Employees Community Fund of Boeing California Enterprise Holdings Samuel I. & John Henry Fox Foundation Grossmont Healthcare District O.L. Halsell Foundation HD Supply Milton & Henrietta Kushkin Fund of the Hawaii Community Foundation • Morgan Stanley Foundation • RBC Foundation, Inc.
FUNDING THE MISSION
TEAM GORDO GOLF TOURNAMENT BY AMY FRANCIS-DECHARY
On January 16, 2017, Team Gordo celebrates 10 years of honoring Gordon “Gordo” Eansor’s legacy with its annual Team Gordo Golf Tournament. Held at the Mission Viejo Country Club, the tournament includes a 4-person scramble, taco truck, and beverage carts. A raffle, auction, and awards reception conclude the event. Team Gordo was created to support Gordo after he was diagnosed with primary progressive MS in 1995. He inspired others with his magnetic
• • • • • •
San Diego County Employees’ Charitable Organization San Diego Gas & Electric Southern California Edison Sunwest Bank Charitable Foundation Antone & Edene Vidinha Charitable Trust Judy Zankel Fund, Respite Care Program
The National MS Society would like to give special thanks to Edison International/Southern California Edison for its sponsorship of this year’s 2016 Orange County MS Symposium. More than 150 people attended the event in September, hosted in partnership with the UCI MS Center. Featured as keynote speakers were co-directors of the MS Center, Dr. Ardith Courtney and Dr. Michael Demetriou, who presented on current MS research and patient care. personality, faith, and positive attitude. “I am living amongst friends and family who provide me with love and support,” Gordo said. “I, too, provide [them] with positive energy to make their lives more meaningful and worth living.” Sadly, Gordo passed away peacefully in 2013, but Team Gordo continues to celebrate his motivational life philosophy and spread MS awareness through events like the Team Gordo Golf Tournament. For more information, visit http://www.planmygolfevent.com/29991TeamGordoGolfTournament2017/.
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
MARK YOUR
CALENDARS
To learn more about any of these events, or to register, visit MSpacific.org and click “Calendar”.
DECEMBER 10: 13:
Annual Sycuan Family Holiday Party Can Do Multiple Sclerosis Webinar Series: Importance of Sleep
JANUARY 10: 12:
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
Can Do Multiple Sclerosis Webinar Series: GPS For Your MS Online Newly Diagnosed Program
FEBRUARY 11: Breakthrough MS: Annual Meeting of Members 15: Can Do Multiple Sclerosis Webinar Series: Negotiating Reasonable Accommodations
MARCH 9: 11:
Online Newly Diagnosed Program San Diego MS Symposium
APRIL 8: 22: 29:
Walk MS: San Diego Walk MS: Carlsbad Walk MS: Irvine
CONNECT WITH US ONLINE: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/NationalMSSociety