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PACIFIC SOUTH COAST CHAPTER

M O V I N G T O WA R D A W O R L D F R E E O F M S | 2 0 12 • S P R I N G

JOIN THE MOVEMENT® & Spread MS Awareness I brought a group of elementary Join us at Walk MS! ALL YEAR! MS Awareness Week starts March 12 and we are kicking off a ton of spring events! learn more about additional events throughout the year in the Gray Box and keep reading to learn more about the fun walks coming up in April & May!

The Walk is a core part of the MS movement that encourages a community coming together to raise funds and celebrate hope for a world free of MS. Bring your family and friends and join us for the fun 1.5-3 mile walk accompanied by food, beverages and entertainment! Don’t just take it from us! Here’s what some of our participants have to say!

school students to Walk MS Carlsbad, giving them the opportunity to do something to help others & witness thousands of others who came to do the same. My favorite part of the day was when one of my students told me “I feel like I’m helping people who have MS with every step I take.” - Paula

We love the excitement of completing the walk in Irvine with the volunteers cheering, the music, the one man band and the dogs and pig. It was a happy event for a great cause. - Susan

Universal design, made beautiful; homes made accessible. PAGE 3

The most important moment came for me just before the finish line. The gentleman in front of me got out of his wheelchair to walk across the finish line. Everyone in the area cheered him on as he took those last few steps over the finish. I was moved to tears. - Angela

INSIDE THIS ISSUE

Mark Your Calendars Page 7

Health & Wellness Page 8-10

Living Well with MS Page 11

Research Page 15

For more information or to register visit MSwalk.com!

GETINVOLVED

3 days, 50 miles, walking for a world free of MS PAGE 3 Amazing coastal routes for cyclists of all abilities PAGE 4 Calling all volunteers! We’ve got something for everyone! PAGE 14


PACIFIC SOUTH COAST CHAPTER

(800) 344-4867 Publication of the National Multiple Sclerosis Society Pacific South Coast Chapter Chapter Offices: 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 3000-C Airway Avenue, Suite 125 Costa Mesa, CA 92626 Executive Vice President Karen Hooper MSConnection Editor Jessica Read MSConnection Associate Editor Leslie Christofferson The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. 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.

STAY CONNECTED

You can help the chapter put more money toward our mission of creating a world free of MS by opting to receive the MSConnection electronically! Not only will you help us save money, and help Mother Earth, but the online version of the MSConnectiis interactive! To do your part today, email MSinfo@MSpacific.org with the subject “Send me the digital MSC.” Easy as that! Check out other ways to connect with us and other people who are affected by MS: • LIKE US ON FACEBOOK www.facebook.com/MSpacific

We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

• WATCH VIDEOS ON YOUTUBE www.youtube.com/MSpacific

© 2012 National Multiple Sclerosis Society, Pacific South Coast Chapter

• TWEET US UP ON TWITTER www.twitters.com/MSPSC

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JOIN THE MOVEMENT: nationalMSsociety.org


SUPPORTING THE MISSION

EXPERIENCE THE DREAM HOME BY JODI MOST

Dream Home Committee Chair

What does your dream home look like? Does it have a designer kitchen or state-of-the art home theater? The top of my list would be his-and-her bathrooms or a luxurious closet with endless shoe racks. The chapter has partnered with the American Society of Interior Designers to create the Dream Home fundraiser. Featuring the best interior designers in the region, this superb showcase will display the most luxurious innovations and trends in home design and decor. For many individuals living with MS, a dream home may simply be one that allows them to maneuver their wheelchair freely within their own space. With that in mind, this year’s Dream Home will feature universal design, showcasing a living space that is accessible yet beautiful and benefits all who have been impacted by MS. The Dream Home fundraiser will run March 1-25 at South Coast Collection in Costa Mesa. Spend the day touring the designer showcase, enjoying lunch, having a glass of wine, and shopping through the unique center. Visit ASIDdreamhome.com to learn more, to sign up as a volunteer or to purchase tickets!

ACCESSIBILITY IN THE HOME

When Arlene Kaye experienced increased difficulty getting up and down the stairs in her home, she reached out to the chapter to help supplement some of the cost of a stair lift. Arlene (pictured below) tells us more: How has the stair lift helped you remain independent? It has helped tremendously with my fatigue level and my ability to carry things up and down the stairs. I used to limit my number of stair-climbing daily round trips (2 per day) because it was so difficult for me to climb the stairs. What difficulties did you experience before the stair lift was installed? I would come home after a 12-hour day of work & physical therapy and have absolutely no idea how I was going to find the energy to make it up the stairs. Since I have the stair lift, I don’t feel like I have to limit myself and I can once again be a bit more productive with chores. My husband is so appreciative of the stair lift too because he was

constantly concerned of my falls as I climbed the stairs and would always monitor my stair trips, when possible! Why is accessibility within the home important to you? I am a very independent person and this has helped me to regain some of that independence that I had lost. I now have the capability to assist my husband with laundry and some other chores.

TOLL FREE NUMBER 1 800 344 4867

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BIKE MS

BIKE MS RAISES $2.2 MILLION! The Bike MS Bay to Bay Tour sponsored by Land Rover Miramar celebrated its 29th year this past October. With 2,300 cyclists of all levels participating in the event, the Bike MS Bay to Bay Tour raised over $2.2 million, moving us one step closer toward a world free of MS. The cyclists enjoyed a 15, 30, 100 or 150mile ride down the picturesque coastlines of Orange and San Diego counties, all while helping us achieve our fundraising goals.

Learn more about 2012’s ride at biketofinishMS.com.

Special thanks to our generous sponsors Event Sponsor

GREAT JOB TO OUR TOP TEAM AWARD WINNERS WHO WENT ABOVE AND BEYOND IN 2011! MISSION POSSIBLE ($50,000+) Howard’s Team Jay McCabe $115,646 Team Disney Ryan Giannetta $112,448 Team Basso Al Basso $90,175

Presenting Sponsors

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Diamond Sponsors

Anthem Blue Cross Rebels Dan Abrams $81,724 Power Peddlers Greg Ferree $68,247 24 Hour Fitness Roland Hoffman $62,152 Still Kicking For Gordo Jack Babbitt $51,839

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JOIN THE MOVEMENT: nationalMSsociety.org

GOLD ($25,000-$49,999) Team Intuit - $45,649 HD Supply Facilities Maintenance - $45,647 Union Bank & UnionBanc Investment Services - $45,208

MOST Team Top of the Hill - $42,324 OutSpokin’ For A Cure - $37,166 Team Hansen’s - $35,465 KPMG All Stars - $32,893 Team Crash - $32,330 Team Beckman Coulter - $31,396 Team Gottbetter GOTTARIDE! - $30,896 Team Saddle Soars - $29,734 teaMSeaside - $27,813 NetApp - $26,560 SchoolsFirst FCU - $25,844 Annie’s Gang - $25,135 SILVER ($15,000-$24,999) Rehab United - $24,647 Team Wescom - $23,664 Bill’s Biker Backers - $22,197 Mitsubishi Motors - $22,020 Electric Cooties - $21,210 Team Land Rover Miramar - $20,520 COX - $20,387 TEAM SHERIFF - $18,512 HS Power Spinners - $17,957 Love 4 Lisa - $17,360


THANK YOU TO OUR INCREDIBLE FUNDRAISERS! WE COULD NOT HAVE RAISED $2.2 MILLION WITHOUT YOUR EFFORTS! 1. Al Basso - $50,040 2. John Most - $31,444 3. Franklyn Gottbetter - $29,856 4. Paul Dechary - $28,000 5. Douglas Peterson - $25,000 6. Dan Abrams - $20,000 7. Rona Kay - $16,945 8. Jack Babbitt - $16,014 9. Jay McCabe - $11,786 10. Sheila Parker - $11,060 11. David Lee - $11,000 12. Robert Moore - $10,785 13. Bryon Barnes - $10,081 14. Tim Salmon - $10,080 15. Dan Fischer - $10,026 16. Joe Sofio - $10,000 17. Kerry Fisher - $8,725 18. Steven Malloy - $8,637 19. Ajay Madiah - $8,568 20. Mark Malbon - $7,805 21. Joe Cucinotti - $7,160 22. Jan Plessner - $7,058 23. Jay Carr - $7,057 24. Mary Storm - $7,001 25. Debbi Kemp - $6,746 26. Jack Weaverling - $6,600 27. Ken McKinley - $6,500 28. Steven Seibert - $6,490 29. Kirk Evans - $6,245 30. Jeff Smith - $6,075 31. David Brooks - $6,018 32. Cindy Roper - $6,000 33. Ryan Giannetta - $5,949 34. Greg Ferree - $5,605 35. Roland Hoffman - $5,559 36. Wesley Fleming - $5,545 37. Tim Dolan - $5,540 38. Peter Albini - $5,512 39. Victoria Roberts - $5,500 40. Roger Waterman - $5,450 41. Scott Scheer - $5,395 42. Michael Plumlee - $5,377 43. Bob Ott - $5,305 44. Kenneth Tudhope - $5,235 45. Tim Bockhold - $5,100 46. Matthew Fein - $5,089 47. Gary Myers - $5,055 48. Harrison Hodges - $4,720 49. Roxayne Spruance - $4,595 50. Roger Voet - $4,550 51. Bruce Kahn - $4,511 52. Mark Reden - $4,481 53. Greg White - $4,451 54. Arthur Berg - $4,429 55. Kevin Gaffney - $4,375

56. Wendy Carter - $4,355 57. Charles Nugent - $4,340 58. Bill Nolte - $4,325 59. Branka Billante - $4,235 60. Peter Moriarty - $4,160 61. Chris Hillock - $4,150 62. Joel Greiner - $4,145 63. Julie Flaiz-Windham - $4,065 64. Vance McNeilly - $4,035 65. Mark Neilson - $4,033 66. William Fischbeck - $4,025 67. David Hopkins - $4,019 68. Terri Gaydon - $4,015 68. Michele Polf - $4,015 69. Amy Blase - $4,003 70. Pilar Parker - $4,000 70. Christopher Paskach - $4,000 71. Roger Kays - $3,960 72. Phil Ohme - $3,875 73. Claudette Higdon - $3,755 74. Mike Mautner - $3,695 75. Brian Driscoll - $3,665 76. Travis Wasson - $3,661 77. Keith Sherwood - $3,645 78. Alexi Varanko - $3,615 79. Hank Jones - $3,575 80. Jeffrey Parker - $3,565 81. Michael Stilwagner - $3,555 82. Joseph Monier - $3,550 83. Stacie Treposkoufes - $3,540 84. Bruce Strauss - $3,501 85. Hugh Neuharth - $3,490 85. Lynn Pressey - $3,490 86. Rick Lloyd - $3,435 87. Donald Kolehmainen - $3,400 88. David Wade - $3,325 89. Steven Misrack - $3,320 90. Bruce Birkeland - $3,315 91. Dwayne Ziegler - $3,301 92. Richard Marlis - $3,265 93. Lloyd Cabanas - $3,230 94. Marilee Bresciani - $3,200 95. Bob Marmor - $3,162 96. Raymond Kim - $3,155 97. Annamaria Ferree - $3,130 98. Brian Knox - $3,105 99. Kristin Zandbergen - $3,100 100. Steven Brown - $3,060 101. Thomas Obkircher - $3,058 102. Jay Grunfeld - $3,050 103. Alan Weir - $3,040 104. Terrence Krieger - $3,036 105. Jim Shepp - $3,035 106. Mark Mahoney - $3,010 107. Lyle Sandlin - $3,000

BIKE MS 107. Matthew Tibbetts - $3,000 107. Ken Trotman - $3,000 108. Eric Dangott - $2,954 109. Derek Steiner - $2,950 110. Robin Soehl Lenowsky - $2,930 111. Bill Goltermann - $2,925 112. Anne Coleman - $2,910 113. Charles Kennedy - $2,900 114. Diane Smith - $2,886 115. Robert Fleming - $2,882 116. Michael Alti - $2,880 117. Joseph Collins - $2,858 118. Justin Fischbeck - $2,855 119. Mike Steelman - $2,840 120. Staci Beech - $2,837 121. Mark Steele - $2,830 121. Michael Wolf - $2,830 122. Jennifer Hahn - $2,815 123. Tony Ruiz - $2,780 124. Bill Nichols - $2,775 125. Andrew Barnes - $2,725 126. Mitch Rickard - $2,711 127. David Waechter - $2,710 128. Jim Horstman - $2,705 129. David Harding - $2,680 130. Elizabeth Giovaniello - $2,660 131. Kimberly Roush - $2,650 131. Tim Zandbergen - $2,650 132. Bradley Pensak - $2,638 133. Jerry Giovaniello - $2,630 133. Mary Hill - $2,630 133. Tony Letendre - $2,630 134. Ryan Myers - $2,625 135. Robert Belyea - $2,600 135. Jim Jackson - $2,600 136. Monica Boyer - $2,580 137. Lillian Hernandez - $2,574 138. Nicole Sweeney - $2,565 139. Marty Wilson - $2,560 140. Scott Campbell - $2,550 141. Steven Sherman - $2,545 142. Michael Richardson - $2,533 143. Richard Buice - $2,525 143. Mike Malinick - $2,525 144. Matthew Waller - $2,500 145. Michael Richardson - $2,470 146. Darlene Bayardo - $2,465 146. Eric Larimore - $2,465 147. Sean Callan - $2,460 147. Peter Droog - $2,460 148. John Prosser - $2,440 149. Greg Angell - $2,425 149. Douglas Loreman - $2,425 150. Jaimie Spears - $2,420

TOLL FREE NUMBER 1 800 344 4867

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SUPPORTING THE MISSION

SYCUAN CASINO’S AMAZING SUPPORT Sycuan Casino has always made it a top priority to support their community. Making it an obligation to be a good neighbor and to promote the spirit of sharing, Sycuan strives to make our community a better place by supporting organizations whose goal is the same. With Sycuan’s generous contributions over the years, the MS Society has been fortunate enough to receive their support, making us one step closer to a world free of MS. Every year, Team Sycuan attends Walk MS with a team of walkers – last year over 150 members strong! Not only are they participants, but Sycuan is also a presenting sponsor, helping alleviate costs of the fun-filled morning providing individuals the opportunity to demonstrate their support for the MS community. Sycuan’s participation and sponsorship at Walk MS immensely contributes to the success of the event; however, they don’t stop here. For the past ten years, Sycuan has been the title sponsor of the Sycuan Family Holiday Party. Every year, Sycuan joins us to celebrate the holidays with over 700 individuals with MS and their families. It is a tradition that individuals with MS, as well as the Society, look forward to every year. 6

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Chairman Daniel Tucker and San Diego Chargers Coach Norv Turner, visit with Martin Valdivia and family

And as if that weren’t enough, Sycuan is also the title sponsor of the MS Golf Invitational, an annual tournament that brings together corporate and community leaders throughout San Diego and Orange County for a fun day of golf. After 2008, the event lost supporters as many companies experienced financial hardship. When others had to step down, Sycuan increased their support and became the title sponsor of the event and has remained so ever since. Last year’s sold out event raised over $160,000, breaking our fundraising record. We want to thank Sycuan for all their support over the years and we look forward to our partnership for many more to come!

JOIN THE MOVEMENT: nationalMSsociety.org

GETINVOVLED Think your company or employer would be a great sponsor for the National MS Society? We do too! There are many types of sponsorship opportunities available across a multitude of events. Sponsorship includes cash, product and services, plus more! Sponsors also receive excellent marketing benefits for their support. Contact us today for more information at MSinfo@MSpacific.org or 800-486-6762.


MARKYOURCALENDARS

MOVING TOWARD A WORLD FREE OF MS | PROGRAM HAPPENINGS

Twelfth Annual USCD MS Symposium Saturday, March 24, 2012 8:30am - 12:30pm San Diego The MS Symposium is an opportunity for you to learn the latest on MS treatments, symptom management and current research.

REGISTERTODAY To register for any of the programs listed, as well as learn about additional programs available, visit calendar.MSpacific.org or call us at 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”

Keynote presenters: Jody Corey-Bloom, MD, PhD “Emerging Therapies” Tom Lane, PhD “Stem Cell Research”

SCRIPPS Lecture Series ON Multiple Sclerosis

Save the Date!

Moving Forward: The Newly Diagnosed Seminar Thursday, May 17, 2012 5:00 - 8:30pm Costa Mesa Moving Forward is an educational seminar offered at no cost to you. The program is designed for individuals who have been diagnosed with multiple sclerosis (MS) within the past three years. Our objective is to provide you with information about: • The Diagnosis of MS • Treatment Options • The Emotional Aspects of MS

Eleventh Annual Day at the Bay Saturday, May 12, 2012 11:00am - 3:00pm Mission Bay Aquatic Center BACK BY POPULAR DEMAND! The 11th Annual Day at the Bay is back! The chapter hosts this annual event in collaboration with the Mission Bay Aquatic. The Day at the Bay is a Festive Luau including a catered BBQ lunch, adaptive sailing, professional face painting and a festive Polynesian entertainment group. This program provides a social and recreational day for people with MS and their families. Invitations and registration will open in April, so mark your calendars now!

Join neurologist Charles Smith, MD and the chapter for a free series of seminars that will offer valuable information to people who want to better manage their MS symptoms and improve their quality of life. Each presentation will be followed by Q&A. Light refreshments will be provided. MS & Staying Fit Tuesday, April 17, 2012 MS & Your Emotions Thursday, May 10, 2012 MS & Heath Management Thursday, June 14 *Register today for one or all of the seminars by calling 1-800-SCRIPPS (1-800-727-4777). All lectures take place from 6:30-8:00pm at Scripps Memorial Hospital in La Jolla.

TOLL FREE NUMBER 1 800 344 4867

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SELF-HELP GROUPS Orange County Anaheim 1st & 3rd Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Anaheim: En Español Familiares y amigos bienvenidos El segundo y cuarto martes de cada mes Anaheim Adventist Church 900 S. Sunkist St, 6 - 7:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Brea: 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 Brea 1st Friday of the month, 10am - 12pm Denise Kish 909-519-4410 dennydiego5@yahoo.com Jim Langdon 714-392-2052 jameslangdon@att.net

MOREInfo If you would like more information about support groups in your area, call 1-800-344-4867 press ‘1’ or contact a leader listed above. 8

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Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 SherriB@socal.rr.com

Irvine: Girl Talk 3rd Monday, 11am - 1:30pm Tabitha Evans 714-669-5618 tab.evans@cox.net Maggie Finn 949-748-7591 magfinn@gmail.com

Costa Mesa: Man to Man 1st & 3rd Wednesday 1:30 - 3pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-9593 jackandlinda1948@gmail.net

Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Karen Harlas 949-498-9583

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 Huntington Beach: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526 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: Mature Group 2nd & 4th Wednesday 10am - 12pm Jack Santos 949-786-9593 jackandlinda1948@gmail.net

JOIN THE MOVEMENT: nationalMSsociety.org

Lake Forest: MS with Christ 3rd Monday, 6:30 - 8:30pm 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


SELF-HELP GROUPS San Diego County 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 619-248-0669 sjlipp@yahoo.com Bonnie Kuhn 619-749-8806 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 micheleeasterling@hotmail.com Escondido: Christian Group 3rd Friday, 1-3 pm Calvary Chapel of 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 (Clairemont/ La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 10am - 12pm Denise Kish 909-519-4410 dennydiego5@yahoo.com

San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Rd 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 garyptloma@cox.net

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

Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Kris Hodge 619-933-2601 krian290@gmail.com Debbie Centeno 619-460-4123 dcenteno@ucsd.edu

Professionally-led 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

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

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

TOLL FREE NUMBER 1 800 344 4867

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Aquatics

IN YOUR NEIGHBORHOOD

Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Tuesdays & Thursdays 12 - 1pm

Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mondays, Wednesdays & Fridays 9 - 10am $6 per session

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 *NEW LOCATION!* Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays & Thursdays 11:45am - 12:45pm

BALANCE & STRENGTH TRAINING La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:45 - 11:45am

YOGA 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

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JOIN THE MOVEMENT: nationalMSsociety.org

La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: Pilates Comprehensive Therapy Service Inc. 5611 Oberlin Dr. Suite 106 Mondays, 12pm Thursdays, 5pm Mandy Johnston 858-457-8419 $10 per class San Diego: Outdoor Aquatics Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Diana Dean-Naú 760-809-9176 $5 per class

BE ACTIVE AT WALK MS!

Each walk route is 100% accessible. Come join a community coming together to help create a world free of MS.

April 22: Carlsbad April 28: San Diego May 5: Irvine

SIGN UP TODAY! MSwalk.com


LIVING WITH MS

SPLISH SPLASH! EXERCISE FOR ALL IN THE WATER! WATERWALK The Water Walk, captained by Karen Cooper, has become a Pacific South Coast Chapter tradition during Walk MS Season!

Waterworks Aquatics provides swimming lessons and a variety of aquatic programs to Orange, Los Angeles, and San Diego Counties. At their state-of-the-art swimming facility located in Irvine there are three heated indoor pools and a junior Olympic-sized pool outdoors. Instructors have been working with the local chapter for the past few years allowing our members to come and participate in their water aerobics class. The instructor, Chrissy Newman, who actually has MS and has taught the class for the past 3 years stated “The pool that we use for the class is heated to at least 83 degrees, which is cool enough to continuously move for an entire hour without getting over-heated. I have MS and I have found that exercising in the water gives me a strong sense of well-being, better range of motion, eliminates stiffness and helps with muscle weakness and improves balance. I literally

can’t wait to get in the pool so that I can help other people with MS discover how beneficial exercising in the water can be.” Most recently, Waterworks has opened a new location in Carlsbad where their facility housing two indoor heated pools and they are again allowing us the opportunity to start a new class at this North San Diego County location. Cathy Matthews, the long time instructor of our North San Diego County aqua class says “Waterworks Aquatics provides two heated pools and a friendly supportive staff whose goal is to meet all of our needs. All we have to do is show up and the lift chair is in place and we just enjoy the friendly atmosphere they provide.” Waterworks Aquatics continued support of our members and their dedication to providing a great experience truly shows through the amazing customer service of all their staff. They have

The chapters aquatic class participants joined together to walk toward a world free of MS-in the water! Team Water Walkers is the perfect place to enjoy the benefits of aquatic exercise while raising much needed funds. Visit http://tinyurl.com/ waterwalk2012 today to join a water walk near you! worked with our staff to provide water aerobics to our members which allows the freedom to move when otherwise someone may not have the ability to do so. JOIN US! Irvine Tuesdays & Thursdays 10:30am – 11:30am Carlsbad Tuesdays & Thursdays 11:45am – 12:45pm. For more information on how you can attend our physical wellness classes please visit MSpacific.org or contact (800) 344-4867.

TOLL FREE NUMBER 1 800 344 4867

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CHALLENGE WALK MS

IN THE BLINK OF AN MRI BY ANGIE BRENNER MATTHIAS When sudden, tragic events occur, people often express, “It all happened in the blink of an eye.” As a young woman diagnosed with MS in June of last year, I feel at liberty in adapting this idiom to say, “My life changed in the blink of an MRI.” Going on 28-years-old and in perfect health, the strange dull and tingling sensations were easily written off as too many yoga and dance classes. Surely, I just needed to cool it on the downward dogs. But, the MRI would suggest otherwise. Staring at various white spots with a neurologist that day, I recall having my first realization of the peculiar detachment MS can cause you to feel from your own body and mind. It is these unsystematic, cruel detachments that rob of people living with MS, our families and friends, like a cavalier pickpocket choosing to inflict turmoil where and when it pleases. While falling victim to petty theft may pale in comparison to MS, the metaphor speaks to a greater theme: injustice. MS is an unjust disease and, like a heedless crook, should be stopped in its tracks. For me, Challenge Walk MS exemplifies everything that is simultaneously hopeful and painful about the journey to create a world free of MS. The 12

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fight isn’t always pretty (blisters) and each day is a test (Day 2), but by working together and setting the bar high, we will surprise ourselves in terms of capability and strength. In 2011, I used Challenge Walk to “come out” of the MS closet, so to speak. Grappling for control in my own world, those 50 miles were something to grab onto. While I went in with impulsive reasons and a hint of “something to prove,” I came out cognizant of the awesome force that is Challenge Walk MS: its participants, volunteers and staff. Alongside a doggedly devoted husband who inspires me daily, I will lead our team again this September. Come join us! It’s no cakewalk but, as they say, the things in life worth doing are seldom easy. Seeing Challenge

September 21-23 3 days. 50 miles. myMSchallenge.com

JOIN THE MOVEMENT: nationalMSsociety.org

Angie at Challenge Walk MS 2011

Walk MS in action will leave you with no doubt - we are headed in the right direction. And whether walking, wheeling or watching, our sights are all set on the same finish line.

Challenge Walk MS is a 3-day, 50mile journey to create a world free of MS. Starting in Carlsbad, nearly 300 walkers enjoy ocean views while walking to downtown San Diego. The route is fully-supported with rest stops, lunches, snacks, beverages and medical staff. All participants spend two nights at our host hotel and are treated to banquet breakfasts and dinners. Our goal is to raise $1 million towards a world free of MS. For more information or to register, visit myMSchallenge.com or call 800-486-6762


ADVOCACY

Keeping up with health reform by Kimberly Calder With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area.

on the ACA. Click on “The Healthcare Law and You,” then “Implementation Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, The National Conference of State the amount of new funds for community health centers Legislatures at www.ncsl.org and more. has a whole section on Health Reform that includes a series To follow changes in ACA of brief reports on a variety of legislation and other public ACA-related topics. The site also policy issues that specifically includes a searchable database, affect people with MS, check updated every Tuesday, of state in with Society MS Activists at legislation related to the ACA. Twitter @MSActivist and visit Search 2012 legislation by state, MSactivist.blogspot.com. topic, keyword, status or The Society also regularly primary sponsor. updates Frequently Asked The National Academy for State Health Policy at statereforum.org offers an online network called State Refor(u)m, which enables direct connection and information-sharing between policy makers, activists and others working on health reform implementation. The federal government’s official site on the ACA at www.healthcare.gov is the best source for hard numbers

Questions on its website at nationalMSsociety.org/ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.

MS Activists help add MS to Compassionate Allowances list Thanks to hard work by Society activists, an aggressive form of MS now qualifies for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly.

TOLL FREE NUMBER 1 800 344 4867

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VOLUNTEERS

VOLUNTEERS MAKE A DIFFERENCE! Earlier this year, the chapter honored outstanding volunteers and corporate partners of the year as part of the Annual Meeting of Members. These individuals and companies rose to the top of thousands of supporters and we are indebted to their generosity and service. Read complete biographies on each person at http://news.MSpacific.org and select “2011 Volunteers of the Year Honored at Annual Meeting.” Health Care Provider of the Year Dr. Charles Smith

Service Provider of the Year Disability Help Center

Walk MS Volunteers of the Year Susie & Ben Jensen

Service Provider of the Year Mike Gross, A&T Wheelchair

Angel Visitation Volunteer of the Year

Health & Wellness Partner of the Year Healthy Balance

Monica Manning began volunteering for the chapter 6 years ago. Quality time spent with her companion Diana have included lunches and day outings but most of all, a lasting friendship. Monica acknowledges, “The MS Angels program has allowed me to build a lasting relationship with an amazing woman, who has helped me to better understand MS and makes me see how imperative it is we find a cure.” Corporate Partner of the Year The Disneyland Resort MS Research Volunteer of the Year Dr. Thomas Lane Community Partner of the Year LEGOLAND® California Self Help Group Leader Volunteer of the Year Jack Santos MS Ambassador of the Year Peter Albini MS Activist Volunteer of the Year Rachel Chapman Challenge Walk MS Volunteer of the Year Bob Woodard 14

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JOIN THE MOVEMENT: nationalMSsociety.org

MS Dinner Auction Volunteer of the Year Chuck Roles Programs Community Partner of the Year Mission Bay Aquatic Center General Office Volunteer of the Year Gillian Evans Programs Volunteer of the Year Stephanie Sunahara MS Golf Invitational Volunteer of the Year Norv Turner Bike MS Bay to Bay Tour Volunteer of the Year Michael Puritz Media Partner of the Year KyXy 96.5 & Sophie @103.7 Radio Stations Legislator of the Year Assembly Member Marty Block Chapter Star Volunteers of the Year Phil & Arlene Bresnick

GETINVOLVED

Volunteer opportunities are always available! Whether you want to give a few hours or a few days, we’ve got a job for you! Learn more about volunteering by contacting Linda Ingram at 760-448-8416 or linda.ingram@nmss.org.


RESEARCH

Survey says walking issues important to address

Susan Cohn-Child, diagnosed in 1995, walks with son Zach

Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.

Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.

Results in for potential MS therapies • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.

• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of While 65% of those surveyed reported walking participants in each group who experienced difficulties or trouble with balance, 40% events defined as treatment failure. “rarely or never” discussed the issues with Teriflunomide is thought to prevent damage their doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower three others are ongoing. The FDA is reviewing people with MS to discuss walking impairment an application for marketing approval of with their doctor, including newly diagnosed teriflunomide. patients who may be experiencing only mild problems with walking or balance difficulties,” To stay current on MS therapies in the pipeline said Nicholas LaRocca, PhD, vice president for for FDA approval, sign up for MS eNEWS at Health Care Delivery and Policy Research at www.nationalMSsociety.org/signup. the Society.

TOLL FREE NUMBER 1 800 344 4867

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

Pacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131

CALENDAR OF EVENTS

MARCH 1-25 12-18 24

ASID Dream Home - ASIDdreamhome.com MS Awareness Week - MSpacific.org 12th Annual UCSD MS Symposium

APRIL 17 22 28

Scripps Lecture Series: MS & Staying Fit Walk MS: Carlsbad - MSwalk.com Walk MS: San Diego - MSwalk.com

MAY 5 7 10 12 17

Walk MS: Irvine - MSwalk.com MS Golf Invitational - golfMS.org Scripps Lecture Series: MS & Your Emotions 11th Annual Day at the Bay Moving Forward: The Newly Diagnosed Seminar

For more INFORMATION, visit the “Mark Your Calendars” section on page 7 OR http://calendar.MSpacific.org

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JOIN THE MOVEMENT: nationalMSsociety.org

Spring 2012 MS Connection  

MS Connection Spring 2012

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