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WINTER 2012 Pacific South Coast Chapter

MS Connection Newsletter

Financial assistance program changes lives - Page 6

INSIDE 03 THIS ISSUE

Annual meeting of members

11

19

21

Bob Webster Educational Scholarships

Living With MS: Commit to eating well

2012 MS research year in review


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MS connection: WINTER 2012

something for everyone

The Many Ways to ® JOIN THE MOVEMENT “From our MS family to yours, thank you for all that you’ve done in 2012. We look forward to working together to do even more in 2013!”

Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific

On the Cover: Breea and Michelle Renee at the MS Dinner Auction.

As 2012 winds down, there are many things to reflect upon, as well as prepare for, as we head into 2013. We’re entering a time of family, friends, holiday cheer, and, of course, continuing to help people who are affected by MS. We’ve done a lot this past year to support the 45,500 people affected by MS in Orange, San Diego and Imperial counties, but our work won’t be done until the day we stop disease progression, restore what’s been lost and end MS forever. There are many ways you can Join the Movement®: • Donate! With the year coming to a close, there is still time to make a year-end gift, helping you with your taxes and helping us serve more people affected by MS. (Page 6) • Volunteer! (Page 4) There are a ton of ways to get involved! Whether you want to come out to a weekend event, help out at the office during the week, or even work from home in your free time, we’ve got something for everyone. • Become an activist! (Page 13) Share your story, join the Action Alert, and help us reach out to our state representatives. • Start a team at Walk MS! (Page 15) We host these fun events throughout the month of April, and they are a great way to meet other families affected by MS. Thank you for your dedication! Together, we will make a difference in the lives of people affected by MS. Most sincerely,

Rich Israel, Chapter President


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nationalmssociety.org | 1-800-344-4867

JOIN US

A SHARED PROMISE: ANNUAL MEETING OF MEMBERS As another year comes to an end, we have much to celebrate in our efforts to achieve a world free of MS. However, our efforts can’t stop here! As we move into the new year, there is much more to accomplish, and it will require the efforts of all of us to make it happen!

Join US!

Please join us at the Annual Meeting of Members on January 26 as we celebrate our accomplishments this past year, and come together to create our goals for the year ahead. We will recognize outstanding volunteers, elect our Board of Trustees and new Board Chair, as well as learn about the new and exciting findings in the field of MS research from Dr. Jody Corey-Bloom. Register to attend by visiting http://annualmeeting. MSpacific.org or by calling 800-344-4867, and press “1”. n

National Multiple Sclerosis Society Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 1-800-344-4867 Chairman: Chris Serocke Chapter President: Richard Israel Editor & Design: Jessica Read Associate Editor: Leslie Christofferson © 2012 National Multiple Sclerosis Society, Pacific South Coast Chapter

Saturday, January 26 , 2013 9:30am-12:15pm Laguna Cliffs Marriott Dana Point

See all event details at: annualmeeting.MSpacific.org

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.


04 VOLUNTEERS MAKE IT HAPPEN

DOING IT ALL: LINDA & RICK MILSON

MS connection: WINTER 2012

Office Phenom: Jack Owens Like many others who found themselves without a job after the ecomomic crash, Jack Owens, who has a friend living with MS, wanted to have a sense of purpose and fulfillment while he looked for employment. He contacted the Society and began volunteering in the office several times a week to help organize the chapter’s volunteers into a new online system.

After a close relative was diagnosed with MS, Linda and Rick Milson wanted to do as much as possible to help find a cure. So they signed up to volunteer and participate in the 3-day, 50-mile Challenge Walk. Seven years later, the Milsons have become volunteer leaders in the MS Movement. Linda and Rick are the first to arrive and the last to leave at every event, organizing hundreds of volunteers at various festival sites. As a retired fire captain, Rick utilizes his skills as an EMT, and has been instrumental in ensuring participant safety. Linda’s expertise contributes to her management of a team of volunteers who check in thousands of participants at Walk MS. Not only do they provide countless volunteer hours, Linda and Rick are also incredible fundraisers, having raised nearly $66,000 over the years. n

When asked about what he thinks about volunteering, Jack shares, “I like being here a lot. It is a pleasant work environment and I feel appreciated. People have made me feel welcomed by stopping by my desk to say hello, and thank me. I also appreciate the patience that has been shown me as I learn the system because I, too, have a handicap which is hearing loss. I am amazed at the number of people who volunteer for the Society, and I tell everyone I know what a pleasure it is to be part of an organization that is making a difference in people’s lives. I encourage everyone to ask how their skills can help others.” n to learn more about volunteer opportunities, visit volunteer.MSpacific.org.


nationalmssociety.org | 1-800-344-4867

FUNDING THE MISSION

A little Rain can’t DIMINISH THE INSPIRATION OF BIKE MS BY ROLAND HOFFMAN

When I approached Lucia (aka: Cheetah), a woman living with MS, last year after the Bike MS Bay to Bay Tour and asked her if she would like to experience the actual Tour on the tandem, she thought I was completely NUTS and said that she would be “dead weight.” After six months of decision-making, along with her doctor’s approval, she accepted the challenge. We began our journey in May with great excitement. Lucia was excited and nervous, but ready to accept the challenge, both physically and emotionally! We began our foundation training. When we arrived at “Ride Week,” her training was complete. She was ready to face the 2-day, 100-mile tour. She got to experience, for the first time in her life, the Tour through a cyclist’s point of view! Lucia experienced the thrill, the excitement, the camaraderie, togetherness, the challenges, and the reward of actually riding in the Bike MS Tour itself; an event she has been supporting with love and devotion throughout the years.

05 She was able to cheer on other riders from a different perspective, and thank them for their contribution and support while riding on a bicycle! She got to experience the rest stops, the cheering from people on street corners and sidewalk cafes during our journey. We were both touched by these special nuances of the Bike MS Tour. n

to were voted the Luciabike and Roland a world Mostcreate Inspirational Riders at this year’sfree Bike of MSMS Bay to Bay Tour. They joined over 2,000 cyclists as they hit the road to raise $2.1 million for the 30th annual ride. Participants of all levels enjoyed gorgeous coastline routes, riding 15, 30, 100 or 150 miles over 1 or 2 days. Join us next year! biketofinishMS.com


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MS connection: WINTER 2012

MAKING A DIFFERENCE

SUPPORT PEOPLE like breea WITH A YEAR-END DONATION December 8, 2011 started like any other day for 18-year-old high school senior Breea. She said goodbye to her mom, Michelle, and rushed off to school, excited for her first collegiate cheerleading training class later that day. By 6 pm, Breea had collapsed, and could and not feel her arm or leg on her left side. The next day she could not talk or swallow, and was blind in her left eye. Her left side was now completely paralyzed. The diagnosis: a rare, acute sudden onset of tumefactive MS. “I remember waking up in the hospital. It felt like I was in a dream. My senior year came to an end as I lay there, unable to move half of my body, and wondering what the future would be like now,” recalls Breea. When the chapter heard the news, they were at Breea’s bedside providing support, answers, and a sympathetic ear. When Breea and Michelle couldn’t return to their two-story home, the chapter was able to help them get into a one story home, much more suited to Breea’s needs and wheelchair. After Breea graduated from high school, the chapter provided her with a Bob Webster Educational scholarship to help with her college expenses. Now, one year later, through much work and determination, she is walking, and her vision is perfect. Her cognitive skills are getting better, and she is starting cheer training again. Though recent exacerbations have caused her to finish her first semester online, she is determined to continue to

pursue her dreams and become a passionate advocate for young adults living with MS. n You can help individuals like Breea receive the support they need and continue vital research toward a world free of MS by making a donation to the National MS Society. Gifts are 100% tax deductible and can be made via cash, check, credit card, stock transfer, or a charitable gift annuity. For more information or to make a donation, contact the local chapter at 800-344-4867, and press “1” or visit MSpacific.org and click on donate.


to register for or get more information about any of the events listed, as well as learn about additional events, visit http://calendar.MSpacific.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”

Mark your calendar

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local events

moving forward: program for the newly diagnosed

ANNUAL MEETING OF MEMBERS

Saturday, Feburary 9 8:30am Courtyard Marriott, Kearny Mesa If you have been diagnosed with MS in the last three years, join us to learn about treatment options, the emotional aspects of MS and meet others living with a new diagnosis.

Saturday, January 26 9:30am - 12:15pm Laguna Cliffs Marriott, Dana Point Learn more about our guest speaker, the event and more, on Page 3 or by visiting http://annualmeeting.MSpacific.org.

MS CRUISE with MS Cruisers February 9 - 16 Join other families affected by MS and explore the Mexican Riviera. Learn more or register to attend at MScruisers.com.

boys’ night out Thursday, March 14 9:00pm Irons in the Fire, San Clemente An exciting program for men living with MS and male caregivers, Boys’ Night Out provides guys-only social events to discuss life with MS. New outings are planned throughout the year. Please join us in March!

SAVE THE DATE UCSD MS SYMPOSIUM Saturday, March 16 9:00am - 12:00pm Mission Valley Marriott, San Diego Learn the latest on MS treatment and information from Dr. Corey-Bloom and other MS professionals.


08 SUPPORT GROUPS ORANGE COUNTY

Anaheim: En Español Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30 - 8pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 SherriB@socal.rr.com Santa Ana: Man to Man 1st & 3rd Wednesday 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@gmail.net Dana Point: Minimal Symptoms/Newly Diagnosed 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Fullerton: Christian MS Support Group 2nd Tuesday, 7:00pm - 8:30pm Sara Minton irvinedrama@yahoo.com Huntington Beach: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526

If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader. Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Laurie Cable 714-969-8298 lderble@aol.com Karen Patterson 714-377-4006 Irvine: Walkers & Rollers 2nd & 4th Wednesday 10am - 12pm Jack Santos 949-786-3421 jackandlinda1948@gmail.net Irvine: Girl Talk Contact Tabitha for date & time Tabitha Evans 714-669-5618 tab.evans@cox.net Maggie Finn 949-748-7591 magfinn@gmail.com Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Karen Harlas 949-498-9583 Lake Forest: MS with Christ 3rd Monday, 6:30 - 8pm Bill Bisch 949-218-5020 Cathy Varela 949-496-3810 Midway City 1st & 3rd Tuesdays 10am - 12pm Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-963-8624 carolyncassell7@yahoo.com Mission Viejo: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com

Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 ppavidis@socal.rr.com Stanton/Los Alamitos 1st (Stanton) & 3rd (Los Alamitos) Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-990-2933 robert.retired@hotmail.com Yorba Linda 1st Friday of the month, 10am - 12pm Denise Kish 909-519-4410 dennydiego5@yahoo.com Jim Langdon 714-392-2052 jameslangdon@att.net

SAN DIEGO

Carlsbad: Newly Diagnosed 1st & 3rd Saturday, 12 - 1pm carlsbadselfhelpms@gmail.com 760-448-8403 Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964 Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Susan Lipp 619-426-0930 sjlipp@yahoo.com Bonnie Kuhn 619-737-9262


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nationalmssociety.org | 1-800-344-4867 Encinitas San Diego County Credit Union Community Room 501 North El Camino Real 1st Thursday, 6 - 7:30pm Melinda Brizendine 760-994-4549 melindabrizendine@gmail.com Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 sbbrad@cox.net Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Escondido 1675 Seven Oakes Rd. Room 4 Jim Johnston 760-746-4279 hopekeeperjim@gmail.com Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net Poway Weingart Center 13094 Civic Centre Drive 1st Tuesday, 6:30pm Peggy Green 858-748-4009 pegjean@cox.net Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129 San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive

1st & 3rd Wednesday, 11am 12:30pm David Ries 619-997-3483 dkries@gmail.com San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Denise Kish 909-519-4410 dennydiego5@yahoo.com San Diego: Mens Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:30pm Bill Homer 858-571-1867 wchomer@gmail.com San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 garyptloma@cox.net Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Debbie Centeno 619-460-4123 dcentdeb@yahoo.com

professionally-led support groups in Orange & San Diego Counties Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 714-689-9602 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT National MS Society Costa Mesa Office 3000-C Airway Avenue, Suite 125 Costa Mesa, CA 92626 (714) 689-9602 Caregiver Support Group 3rd Thursday of Every Month 6:30-8:00pm Facilitator: Seraphina Galante, MSW, Family Consultant Southern Caregiver Resource Center 3675 Ruffin Road, Suite 230 San Diego, CA 92123 (858) 268-4432, ext. 112


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MS connection: WINTER 2012

HEALTH & WELLNESS CLASSES yoga & Pilates Aquatics Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 10:45 - 11:45am Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1 - 2pm Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:45-10:45am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session

Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays & Thursdays 11:45am - 12:45pm Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Tuesdays & Thursdays 12 - 1pm El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mondays, Wednesdays & Fridays 11:30am - 12:30pm Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tuesdays & Thursdays 10:30 - 11:30am No lift available at this time.

Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30 - 11:30am

Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mondays, Wednesdays & Fridays 9 - 10am $6 per session La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Tuesdays, 5:30pm Thursdays, 12:00pm Saturdays, 11:30am Fee-based class. Call 858-483-2711 for more information. San Diego: Outdoor Aquatics Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mondays, 12pm Thursdays, 5pm Mandy Johnston 858-457-8419 $10 per class

Balance & strength Training

La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm

in your neighborhood

To attend any of the listed classes, a waiver is required. Please contact 800-344-4867 to request a waiver today.

San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Tuesdays, 10am Diana Dean-Naú 760-809-9176 $5 per class


nationalmssociety.org | 1-800-344-4867

education

scholarship opportunities

Enrollment for the 2013 National MS Society Scholarship Program is now open! Thanks to the amazing Volunteers In MS (VIMS), we are grateful for the opportunity to offer the Bob Webster Scholarship to first-time college freshmen (of any age) again this year! It is because of VIMS, who funds this fantastic program, that we can keep the legacy going. For more information and an application, please refer to the frequently-asked questions and other scholarship resources at http://tinyurl.com/MS-scholarship. n

11 “My goal is to become successful in theatre, and if I’m lucky, I’ll have the opportunity to reimburse my family for all of the expenses we’ve lost. The last thing my family needs is the weight of a college tuition, and with the relief of such a financial burden, they’ll be able to focus on my Dad’s MS treatment.” Briana Vecchione, one of the 2012 scholarship recipients

A BIG THANK YOU TO VOLUNTEERS IN MS (VIMS) Volunteers In MS (VIMS) has supported the National MS Society for over 30 years. President Emeritus Carol Webster started the VIMS group in 1981 as a tribute to her husband Bob who had been diagnosed with MS. VIMS has funded over $500,000 in support of our chapter. They are the top funder of educational scholarships through the Bob Webster scholarship fund, which helps students affected by MS attend college.

This group of dedicated volunteers has been able to support hundreds of students in their pursuit of a college degree. Through their support, we have leveraged their gifts with other gifts this year like the Jack McGrory Family Foundation, and the Walter Zable Foundation. In tribute to Bob Webster and all that VIMS has done to join the movement toward a world free of MS, we honor and thank them for their support and generosity throughout the years. n


You’re invited to join us at a PAID Novartis MSADVERTISEMENT Education Link Event Hear a medical specialistto share information You’re invited join us at about a multiple sclerosis (MS), learn about a prescription treatment option, Novartis Education Link Event and connect withMS people in your community living with MS. Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, Featured Specialist: and connect with people in your community living with MS. Jack Florin, MD Benjamin Frishberg, MD Jan. 9, 2013 at 6:00pm Jan. 22, 2013 at 6:00pm Featured Specialist: Roy's Hawaiian Fusion The Old Spaghetti Factory 453 Newport Center Dr 111 N. Twin Oaks Valley Rd Jack Florin, MD Benjamin Frishberg, Newport Beach, CA San Marcos, CA MD Jan. 9, 2013 at 6:00pm Jan. 22, 2013 at 6:00pm Roy's Hawaiian Fusion The Old Spaghetti Factory 453 Newport Center Dr 111 N. Twin Oaks Valley Rd Featured Specialist: Newport Beach, CA San Marcos, CA Benjamin Frishberg, MD Jack Florin, MD Feb. 19, 2013 at 6:00pm Feb. 20, 2013 at 6:00pm Featured Specialist: Tio Leo's Buster's Beach House 3510 Valley Centre Drive 168 N Marina Dr Benjamin Frishberg, MD Jack MDCA Del Mar, CA LongFlorin, Beach, Feb. 19, 2013 at 6:00pm Feb. 20, 2013 at 6:00pm Tio Leo's Buster's Beach House 3510 Valley Centre Drive 168 N Marina Dr Del Mar, CA Tell or bring a friend! Long Beach, CA

Accessible to people with disabilities. Light meal served. Parking will be validated. Tell or bring a friend! AccessibleSpace to people with disabilities. is limited. Light meal served. Please RSVP by calling 1-800-973-0362. Parking will be validated.

Space is limited. Please RSVP by calling 1-800-973-0362.

PAID ADVERTISEMENT


nationalmssociety.org | 1-800-344-4867

advocacy

MS Activists succeed in 2012

Together on the frontline, the National MS Society and MS activists nationwide connect with decision makers, work with like-minded partners and create change to impact the greatest number of people possible. As a united MS Movement, we want to do something about MS now.

Federal Successes MS activists… • Added an aggressive form of MS to qualify for the “Compassionate Allowances Initiative” at the Social Security Administration. This will allow people with MS who qualify to receive Social Security Disability Insurance (SSDI) quicker than the average applicant. • Established new federal funding avenues that have yielded over $20 million for MS research. • Introduced legislation that would allow Medicare Part D to cover off-label drugs for people living with MS. • Promoted awareness and importance of a wide range of caregiving initiatives for the people who care for people with MS. This included advocating for increased funding for and reauthorization of the Lifespan Respite Care Program, which improves access to quality respite for family caregivers, and

13 supporting the introduction of legislation to support Adult Day Achievement Centers. • Formed and continued to grow the first Congressional MS Caucus in the Senate and the House of Representatives. More than 25 percent of representatives in both chambers has shown their commitment to developing policy solutions for people with MS by joining the Caucus.

congratulations to local activist Nan Luke was inducted into the Advocacy Hall of Fame at the Society’s Leadership Conference in November. Nan is a passionate advocate who has served as chair of the chapter’s Government Relations Committee while supporting MS issues throughout the entire disability community. She uses her unique expertise as an attorney focused on employment law to mentor other advocates, research policy issues and build key relationships with legislators. Nan is also a member of the Patient Advocacy Committee at the University of California, Irvine and serves on the chapter’s Board of Trustees. Stewart Ferry, California’s Public Policy Director said of Nan, “In my 22 years with the National MS Society, I have never worked with an MS Activist who better prepares for and executes in-person meetings with elected officials than Nan Luke. She represents our positions on important legislation in exemplary fashion.” n


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MS connection: WINTER 2012

LIVING WELL WITH MS

The Rehabilitation Center at Scripps Encinitas MS Outpatient Program For many MS patients, sometimes the most challenging aspect of managing MS is not MS itself, but managing the impact it has on day-to-day life. The MS Outpatient Program at Scripps Memorial Hospital Encinitas is a comprehensive functional evaluation that helps patients assess everything from functional mobility to nutritional evaluations – and all with the convenience of a single appointment and location. Our program has been designed for alreadydiagnosed patients whose condition may have changed since their original diagnosis. Reevaluations can help provide new recommendations to help patients manage their condition more effectively. At their appointment, patients receive a customized evaluation based on their individual needs. Areas assessed include, but are not limited to, functional mobility, gait/balance safety, daily living activities and adaptations, family education, and more. A full and comprehensive evaluation takes approximately three hours, not including a pre-evaluation phone interview to prepare for the appointment. After the appointment, our rehabilitation team provides participants’ physicians with a detailed evaluation, including strengths, affected functional areas and barriers to goal achievement, along with recommendations, referrals and educational

resources. The evaluations are based on the recommendations of physical therapists, occupational therapists, speech therapists, along with social workers and dietitians, all highly skilled professionals who have been chosen for their expertise in MS. A leader of the diagnosis, treatment and management of neuroscience-related conditions, The Rehabilitation Center at Scripps Memorial Hospital Encinitas has served as the only comprehensive rehabilitation facility in northern San Diego County, providing a full range of quality inpatient and outpatient care since 1987. In addition, we are home to the first CARFaccredited brain injury program in the San Diego, Imperial and Riverside counties and the first Joint Commission-certified Primary Stroke Center and CARF-accredited stroke rehabilitation program. For more information or to schedule an evaluation with the MS Outpatient Program or any of our other programs, please call 760-633-6507. Participants must have a prescription from a physician and prior authorization from their insurance company. A limited number of opportunities are also available for patients without insurance coverage. The program runs on the first Saturday of each month. n


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nationalmssociety.org | 1-800-344-4867

FUNDING THE MISSION

Walk the Walk Saturday, April 6, 2013 University of California, Irvine Four years ago, Max Ankrom (pictured above, 3rd from left, with his family) survived a scary 18-day stay a Children’s Hospital of Orange County after going blind -- temporarily, it turned out -- and losing his ability to talk, walk or perform other simple motor skills. He was diagnosed with pediatric multiple sclerosis at the age of seven. Today, he is a shining example of hope for children living with MS. For the past 3 years, this 11-year-old has participated at Walk MS in Carlsbad and last year was honored as the “2012 Most Inspirational Walker.” Walk MS connects people living with MS and those who care about them. When you participate in this community event, the funds you raise give hope to more than 400,000 people living with MS in the United States -- 6,500 of whom live in Orange, San Diego, and Imperial counties. Join Max and many others at Walk MS today! n

Sunday, April 21, 2013 LEGLOLAND® California, Carlsbad Saturday, April 27, 2013 NTC Park, San Diego For more information, visit MSwalk.com. “It feels good to know you are not alone in this fight… [that] you have an army walking behind you to support your one soldier. The feeling of support is overwhelming and it brings me to tears thinking about all that we’ve had. Every single person who is in this fight with us understands. We walk for each one of them as well. So a simple thank you never sounds big enough, but it is two words we all like to hear to solidify that we are making a difference.” Michelle Ankrom, Max’s mother


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Learn more about taking the challenge at mymschallenge.com

FUNDING THE MISSION

Three Days, Fifty Miles, a lifetime of memories This past September, over 200 walkers united to walk 50 miles in 3 days to help create a world free of MS. This inspiring weekend brought laughter, tears, camaraderie and over $800,000 to help fund cuttingedge research, as well as programs and services for people affected by MS. We could not have asked for a better event! Thank you to our incredible top fundraisers, teams, and sponsors for helping us reach our goal! n Elite Feet ($10,000+) 1. Anne Allen - $41,563 2. Brian Grey - $11,025 3. Gabriella Resnick - $10,815 4. Jeanne Woodard - $10,350 Golden Laces ($5,000-$9,999) 5. Jeannette Flynn - $8,681 6. Angie Matthias - $8,520 7. Linda Milson - $7,725 8. Heidi Parish - $7,450 8. Meredith Monroe - $7,450 9. Kathy Kirk - $6,850 10. Paula Sanchez - $6,350 11. Ron Cook - $6,250 12. Joyce Savage - $6,140 13. Mary Lou Michaels - $6,130 14. Gretchen Montgomery - $6,065 15. Shannon Oughton - $5,915 16. Rita Gatto - $5,775 17. Jennifer Dellegrazie - $5,712 18. Jennifer Heinisch - $5,680

Golden Laces (continued) 19. James Biesty - $5,638 20. Diane Nelson - $5,520 21. Kristine DuBois - $5,356 22. Melissa Glasser - $5,334 23. Joyce Mason - $5,205 24. Sibylle House - $5,175 25. Dan Glasser - $5,085 26. Judi Bruner - $5,075 27. Nancy Shultz - $5,051 Overachievers ($3,500-$4,999) 28. Katie Lewis - $4,912 29. Chris Serocke - $4,775 30. Angela Stallworth - $4,357 31. James Beshears - $4,304 32. Madeline Kaplan - $4,291 33. Susan Baker - $4,284 34. Colleen Brown - $4,201 35. Beth Clark - $4,102 36. Eileen Whelehan - $4,085 37. Mavourneen O’Brien - $3,903 38. Lee Trahan - $3,890 39. Meghan Biesty - $3,820 40. Joshua Balin - $3,790 41. Erin Lohner - $3,773 42. Jennifer Armstrong - $3,785 43. Robyn Bjorklund - $3,600 43. Stacey Dimich - $3,600 44. Cindy Kalicki - $3,575 45. Stephanie Miller - $3,563 46. Ronda Matthias - $3,550 47. Polly Sauer - $3,525 48. Ly Le - $3,510 49. Roxanne Tretheway - $3,505 50. Amy Mudd - $3,500 Top Teams Rankings Mission Possible Award ($75,000+) Hurt SO Good!! - $83,935


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nationalmssociety.org | 1-800-344-4867 Gold Award ($50,000-74,999) NorCal Street Walkers w/ Good Carma $64,252

Thank you to our generous sponsors for helping us put more money toward our mission to create a world free of MS.

Silver Award ($25,000-49,999) The (Not as Green) Greenhorns - $37,041 Aye, Aye Captain - $35,724 Team Momentum - $28,900 Pardee Homes - $27,047 The Fireflies! - $26,761 Bronze Award ($10,000-24,999) Walking Wine-rs - $23,620 TEAM KATE - $18,406 The Fabulous Angels - $17,163 Wonder Walkers - $16,559 Nutty J Walkers - $16,455 On Our Way - $13,450 The A Team - $11,617 Heart & Sole Sisters - $11,445 Tough Kitties - $10,971 optiMiStics - $10,085

® ®

INSIDE LOOK: Challenge Walk MS would not be a success without individuals like Diane. As a top fundraiser, Diane (pictured at right) raised $5,520 and her team, Team Diane, raised a grand total of $8,050. Diane was diagnosed with MS three years ago and the Challenge Walk has been a way for her to make a difference in her battle with MS. “We had to find a way to take control back and make a difference,” Team Diane shares. “The Challenge Walk gives us a way to do both. This year’s theme, Super Heroes, was a perfect fit for us. We felt empowered to fight for life without MS.” As second year participants of the Challenge Walk MS, Team Diane states that, “being a part of this event feels like a family; walking, talking, laughing, crying, eating, beating feet and yes, even sweating together.” Team Diane looks forward to many more Challenge Walks together!


18 FUNDING THE MISSION

The Golden Circle The Golden Circle is the National MS Society’s elite giving club, created to recognize the significant support of individuals who make a personal annual gift of $1,000 or more to move our mission forward. Golden Circle members receive incredible benefits, including unmatched access to breaking research news, invitations

MS connection: WINTER 2012 throughout the year to exclusive Golden Circle events as well as national research calls and conferences, recognition as a leader in the MS movement, and so much more!

San Diego Chargers Head Coach, Norv Turner with Danielle & Justin Reckers.

Join the Golden Circle today and be a part of two exclusive salon events: February 21, 2013 MS California Research Forum Attend a premier salon event at the Ritz Carlton Marina Del Rey, with Dr. Stephen Hauser, Chairman of the Department of Neurology at UC San Francisco. March 2013 American Academy of Neurology Annual Meeting in San Diego Enjoy a reception with members of the Academy. More details to come!

January 2013

For more information, visit http://goldencircle.MSpacific.org or contact Angela Northrup at (760) 448-8434 or angela.northrup@nmss.org. n


nationalmssociety.org | 1-800-344-4867

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Living WELL with ms

Commit to eat well Take control of your health, starting with a commitment to eat well. Here are some suggestions for how to do that from the Can Do MS staff and Andrea Glenn, a Society volunteer diagnosed with MS in 2003. • Eat three meals every day and always have breakfast. People who skip meals tend to overeat later. • Make healthy snacks and meals ahead of time so you don’t give in to temptations. • Eat more vegetables and three pieces of fruit every day. Add leafy dark greens to your lunch. Snack on raw fruit and vegetables such as carrots, apples or celery. • Be aware of portion size. Many restaurant meals are large enough to feed two people. Take half home for lunch the next day, or split an entrée with someone else. • Eat whole grains such as brown rice, whole grain bread and whole grain cereals. • Enjoy a couple of low-fat dairy products every day, such as 1% milk or yogurt. • Use olive oil or canola oil (in moderation). • Read food labels and pay special attention to saturated fats and trans fats. • Drink plenty of water—it’s calorie free! • Enlist a friend or family member to share your goals for better eating. It helps to be

accountable to someone else. • Keep a food diary. Writing down everything you eat will help you better evaluate whether you’ve improved your food habits.

nutrition tips for managing fatigue • Have a small snack every few hours to refuel. Pair a protein (low-fat cheese, 1 tablespoon of peanut butter, handful of almonds) with a fruit. • Shrink meals and eat more frequently. For example, save half your lunch and eat the rest three hours later. • A small protein snack in the afternoon, such as a cheese stick or peanut butter, can help you be more alert. • Avoid large portions and desserts. Both will increase fatigue. • Avoid too much caffeine. It can lead to restless sleep and increased anxiety. Visit www.nationalMSsociety.org/diet for links to recent research, recipes and articles, brochures, videos and more. n Originally published in the New York CitySouthern New York Chapter’s MS Connection.


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MS connection: WINTER 2012

FUNDING THE MISSION

The MS Dinner Auction “Keep Calm & Bid On” is a royal success! On November 10, 2012 as “Big Ben” struck five o’clock, over 600 guests arrived for San Diego’s finest black-tie charity event, the 26th Annual MS Dinner Auction sponsored by Pacific Wealth Management. Held at the beautiful Loews Coronado Bay Resort, this year’s British-inspired event featured a splash of bubbly, hundreds of fabulous auction items, a lavish dinner and ended with live entertainment and dancing! Honored guests, Breea and her mother, Michelle shared their inspiring story (see page 6) and left the audience truly touched. We could not have asked for a more fabulous event that raised nearly $470,000 toward a world free of MS, while a jolly good time was had by all! To join the excitement next year, participate in the auction committee, or learn more about sponsorship opportunities, contact Angela at angela.northrup@nmss.org. For updates throughout the year, visit facebook.com/msdinnerauction. n

VOLUNTEERS MAKE IT HAPPEN

Congratulations to Chris Serocke, National Board Member! We are pleased to announce that Chris Serocke has been elected to the National Board of Trustees (BOT). This is an incredible honor of which Chris is deserving. Chris has been an active chapter trustee since 2000, working to support any event, in any capacity. As the current Board Chair, Chris leads by example. He is a Mission Possible and Golden Circle member, Auction supporter, and Challenge Walk MS Chris, with wife, Joyce, at the top fundraiser. Participating for the past 10 years in the 3-day, 50-mile MS Dinner Auction Challenge, “Team Momentum” often raises more than $100,000 annually. With his compassion and empathy, Chris demonstrates a solid understanding for those living with MS and desires to soon find a cause and cure. n


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nationalmssociety.org | 1-800-344-4867

MS research year in Review

2012: Sweeping Advances Made in MS ResEARCH MS research continued to advance on many fronts in 2012, with the approval of a new oral therapy and other emerging treatments progressing through the pipeline. This year saw the launch of the International Collaborative on Progressive MS, the greatest effort to date to speed research to stop progressive MS, and the discovery of what could be a target of the immune attack in people with MS may lead to new understanding of the disease and new treatment approaches. A step toward repairing myelin was made with the completion of the first human trial of an experimental therapy targeting myelin repair. Advances were also made in uncovering MS triggering factors, bringing us closer to finding ways to prevent the disease.

The National MS Society continues to propel research forward with a comprehensive research strategy aimed at stopping MS, restoring function and ending MS forever. This year we provided $44 million to support over 350 new and ongoing projects and research and clinical training fellowships, including everything from discovery research to the Society’s commercial drug development efforts through Fast Forward® (www.fastforward.org). Read about recently launched research projects at http://tinyurl.com/ MS-41572. In the world’s largest meeting dedicated to MS research, this year 7,000 investigators convened in Lyon, France to present findings at ECTRIMS (European Committee for Treatment

and Research in MS), with results of over 1250 studies covering virtually every aspect of research (http://tinyurl.com/MS-7052).

STOPPING MS

FDA Approves Oral Teriflunomide – Brand Name Aubagio® – This once-daily pill was approved as a disease-modifying therapy for relapsing forms of MS. Aubagio is the second oral disease-modifying therapy approved for the treatment of MS, and it became available for prescription on October 1, 2012 in the U.S. http://tinyurl.com/MS-68648 MS Societies worldwide collaborate to stop MS progression – The newly formed International Collaborative on Progressive MS published a paper outlining challenges and identifying key research priorities to propel efforts to stop MS progression. An international meeting is set for February 2013, where plans will continue for moving this research forward. http://tinyurl.com/MS-8647a Two potential therapies before FDA – Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS. This oral therapy showed benefits against relapses and other MS activity in recent trials. The FDA review is underway (http://tinyurl.com/MS-6015MS). Genzyme applied for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials. It is given by a cycle of IV infusions once per year. The FDA asked the company to resubmit its application. http://tinyurl.com/MS-6496MS


22 MS research year in Review

Possible target of immune attacks in some people with MS – An immune response to a protein – called “KIR4.1,” which is found on several types of brain cells – was observed in the serum of 47% of people with MS. Further research is needed to confirm and understand these findings. The international team members are supported by grants from the German Ministry for Education and Research and the National MS Society, among others. http://tinyurl.com/MS-6619MS New approach to stopping MS -- Researchers at Northwestern University have developed an innovative strategy for selectively inhibiting the immune attack in MS using tiny “nanoparticles” that were able to reduce disease activity in mice. The team is now planning a phase I clinical trial of this new technology. http://tinyurl.com/MS-7126MS Stress management reduces MS activity – A 24-week stress management program reduced disease activity on MRI scans significantly more than in a control group, in a study at Northwestern University involving 121 people with relapsing MS. However, the benefits appeared to disappear after the weekly in-person stress management sessions were completed. Future studies should provide more clarity for optimizing the potential benefits of stress management. http://tinyurl.com/MS-6629MS

RESTORING WHAT’S BEEN LOST

Trial of patients’ own adult stem cells appear safe and hints of benefit -- Researchers in the UK published results of a small clinical trial involving 10 people with secondary-progressive MS, reporting that injecting a person’s own bone marrow stem cells appeared safe and possibly

MS connection: WINTER 2012 beneficial in helping to protect the nervous system from injury. Further trials are now underway to establish its safety and potential benefit. http://tinyurl.com/MS-5951MS Collaboration to find new therapies that will repair the nervous system in people with MS – Fast Forward is funding research at the Universities of Cambridge and Edinburgh, UK to screen for compounds that can stimulate myelin repair in MS. The project grew out of findings from a Nervous System Repair and Protection Initiative funded through the Society’s Promise: 2010 campaign. http://tinyurl.com/MS-6767MS Study suggests balance/ eye movement training improves MS symptoms – University of Colorado researchers found that a 6-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium, lasting for at least 4 weeks. A larger and longer study is now getting underway with National MS Society support. http://tinyurl.com/MS-6119MS Rehabilitation technique improves memory -- Learning and memory improved in people with MS with a technique that uses stories and imagery to cement learning. This was accompanied by increased activation of areas in the brain related to memory and learning. The Kessler Foundation Research Center investigation was funded in part by the Society’s Mentor-Based Postdoctoral Fellowship program in rehabilitation research. http://tinyurl.com/MS-5962MS Small study reports benefit of marijuana on MS spasticity -- California investigators found


nationalmssociety.org | 1-800-344-4867

23

some benefit of smoked marijuana against spasticity and pain in people with MS in a small clinical trial. Participants also experienced reduced thinking ability after smoking marijuana, highlighting the need for research on cannabis products or other treatments that can more selectively reduce painful symptoms without producing adverse effects on cognitive function. Additional research is being supported by the Society and others. http://tinyurl.com/MS-6374MS

between a rare variation of a gene that controls vitamin D levels and the development of MS in rare families with multiple members who have the disease. This gene variation causes dysfunction that leads to vitamin D deficiency. http://tinyurl.com/MS-5778MS

Study suggests Latinos with MS experience worse pain and other symptoms – A National MS Society-supported study at the Mississippi State University found that a sample of Hispanics/Latinos with MS reported more pain, fatigue, cognitive problems, mental health problems, and dissatisfaction with their access to mental health care than the general MS population, calling attention to the need for more accessible and culturally-relevant mental health and social services. http://tinyurl.com/MS-6044MS

Studies presented at the annual meeting of the American Academy of Neurology included one suggesting that men with low blood levels of vitamin D may be more susceptible to MS disability, according to a University of Utah study of 500 people with different types of MS. Read more results from the meeting http://tinyurl.com/MS-6377MS

ENDING MS FOREVER

Breakthrough in understanding gene activities – A government-supported, global study called the ENCODE project has mapped out specific biological functions of more than 80% of the human genome (genetic material), bringing into sharper focus the complex controls over the turning on and turning off of genetic information within cells. This leap-frog advance will greatly enhance efforts to understand the influence of genes on human diseases like MS. http://www.genome.gov/27549810 Studies further understanding of vitamin D and MS risk: Researchers in the United Kingdom and Canada reported an association

In a separate study from Swedish investigators, high levels of vitamin D in the blood of pregnant women was associated with reducing their risk of developing MS later. http://tinyurl.com/MS-7127MS

How Epstein-Barr virus may play role in MS -This virus has been linked to increased risk for MS. In active brain lesions in people who had MS in their lifetimes, the researchers found high levels of a chemical that helps the body fight viruses, and nearby, immune B cells latently (inactively) infected by Epstein-Barr virus. They did not find signs of active viral infection. The findings may point to a possible mechanism for how the virus might indirectly stimulate MS disease activity. http://tinyurl.com/MS-5836MS These and other important advances are bringing us ever closer to stopping disease progression, restoring what’s been lost, and ending MS forever. To see all the research news from 2012, visit http://nationalmssociety.org/ research/research-news/index.aspx.


NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451

12121 Scripps Summut Drive, Suite 190 San Diego, CA 92131

mark your

calendars n

Saturday, January 26: Annual Meeting of Members

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Saturday, Feburary 9: Moving Forward: The Newly Diagnosed Seminar

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March 11-17: MS Awareness Week

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Thursday, March 14: Boy’s Night Out

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Saturday, March 16: UCSD MS Symposium

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Saturday, April 6: Walk MS @ UC Irvine

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Sunday, April 21: Walk MS @ LEGOLAND® California

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Saturday, April 27: Walk MS @ NTC Park, San Diego

See more events and programs at http://calendar.MSpacific.org.

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MSConnecton - Winter 2012/2013  

The winter 2012/2013 edtion of the Pacific South Coast Chapter's MSConnection quarterly magazine.

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