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PACIFIC SOUTH COAST CHAPTER

MOVING TOWARD A WORLD FRE E OF MS | 2011 • SPRING • VOL 2

BIKE MS SHIFTS INTO HIGH GEAR! This year promises to be exciting for the Bike MS Bay to Bay Tour. After many successes in its 29 year history, the Tour is taking it up a notch by enhancing the awardwinning ride. Cyclists of all abilities will enjoy fully-supported coastal routes including a new 15-mile option (other mileage options are 30, 100 or 150 miles). The Tour begins on October 22 at the Irvine Great Park and finishes at the Sheraton Carlsbad Resort & Spa, both new locations for the event. Participants will enjoy all the benefits of previous Day One finishes, including a beer garden

and health expo, but with an added intimacy that some of our veteran riders will recognize from the early days of the Tour. On Sunday, October 23, riders will pedal the remaining miles to the finish in Mission Bay, where they’ll be surrounded by cheering supporters and another celebration offering food and fun! The 15- and 30-mile routes will start from Mission Bay and finish with the riders starting their day in Carlsbad. Don’t miss out on this fun ride! Register today at biketofinishMS.com.

A Team Disney participant cheers at the finish line in 2010 (top). Top fundraiser, Dan Abrams, celebrates with his team members (bottom).

INSIDELOOK Advocacy in Action PAGE 3 Success for Bike MS 2010! PAGE 4-5 Challenging the Challenge Walkers PAGE 15

INSIDE THIS ISSUE

From Our Members to You Page 6

Walk MS Fundraising Continues Page 11

Research Next Steps Page 12-13

Chapter Volunteers Shine Page 14


PACIFIC SOUTH COAST CHAPTER

MS AWARENESS WEEK

A WEEK TO REMEMBER

(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 Vice President, Programs & Services Karen Hooper MSConnection Editor Jessica Read 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. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. © 2011 National Multiple Sclerosis Society, Pacific South Coast Chapter

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JOIN THE MOVEMENT: nationalMSsociety.org

From right: Board member, Phil Bresnick, and wife, Arlene, accept a proclamation from the County of Orange.

During MS Awareness Week, March 14-20, chapters and individuals nationwide displayed their commitment to the movement to create a world free of MS. A national initiative called “MS =” united people around the world, allowing them to share what MS equals in their lives. You can still share what MS equals to you by visiting nationalMSsociety.org/ MSAwarenessWeek. The chapter’s activities included: •

30 boxes of goodies were delivered to corporations throughout Orange and San Diego counties, letting them know about MS Awareness Week and how they can get involved with the Society.

• 65 baskets to long-term care facilities, delivered by Board Members, staff and volunteers to people living with MS. •

Thanks to the efforts of MS Ambassador, Frank Austin, proclamations were issued throughout the chapter’s territory by the Orange, San Diego and Imperial County’s Board of Supervisors declaring it to be MS Awareness Week, as well as the following cities: Anaheim; Carlsbad; Costa Mesa; Dana Point; Del Mar; Encinitas; Fountain Valley; Huntington Beach; La Palma; National City; Orange; Poway; Placentia; Rancho Santa Margarita; San Clemente; San Diego; Seal Beach; Solana Beach; and Vista.


ACTIVISM

SPOTLIGHT ON ACTIVISM On Wednesday, March 9, 2011 a delegation from the Pacific South Coast Chapter of the National MS Society joined over 300 other MS Activists on the Hill in Washington, DC. The activists, from all over the country, were visiting legislators and staff to discuss issues important to people with multiple sclerosis as part of the twentieth National Multiple Sclerosis Society Public Policy Conference.

Rich Israel, Chapter President; Kevin Chapman; Nan Luke and Rachel Chapman, co-chairs of the chapter Government Relations Committee, visited with Congressman Bob Filner (pictured above). Congressman Filner has been supportive of the Society by joining the Congressional MS Caucus and voting for research funding in the Congressionally Directed Medical Research Program. He stated that he “appreciated hearing about the legislative priorities of the National MS Society” and per our request, he co-sponsored H.R. 883, the Adult Day Achievement Center Enhancement Act. This year’s top priorities include: •

Improving Access to Neurological Care: We request that Congress support legislation that would allow neurologists to

qualify for Medicare payment incentives in order to improve access to these providers for people living with MS.

Adult Day Achievement Center enhancement Act: We support sustaining and enhancing Adult Day Achievement Center programs for people living with MS and similar chronic conditions and urge Congress to co-sponsor the Adult Day Achievement Center Enhancement Act.

• MS Research Funding in the Congressionally Directed Medical Research Programs (CDMRP): We ask Congress to support a $15 million appropriation to the CDMRP for MS research in Fiscal Year 2012.

MAY 25 IS WORLD MS DAY

More than two million people in the world live with MS. To raise awareness of the global scope of the disease, and to strengthen the worldwide network of people living with MS, the Multiple Sclerosis International Federation started World MS Day two years ago. More than 200 events in 60-plus countries will address this year’s theme of employment and access to appropriate work. Take a survey about work or sign a petition urging leaders and employers to protect the rights of people with MS to work at worldMSday.org.

DOMORE Sign up to be an MS Activist today and call your members of Congress urging them to support these three key priorities listed above for persons living with MS and their loved ones. To obtain more information about any of these legislative priorities contact Amanda Lasik at amanda.lasik@nmss.org or (760) 448-8404 today!

TOLL FREE NUMBER 1 800 344 4867

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FUNDING THE MISSION

Bike MS 2010: A HUGE SUCCESS the 2010 Bike MS Bay to Bay Tour sponsored by Land Rover Miramar was a resounding success! Nearly 2,500 cyclists raised over $2.2 million. We couldn’t do it without the following Exceptional Top fundraising individuals and teams.

2010 TOP FUNDRAISING TEAMS Mission Possible Teams ($50,000+) Team Disney $110,100 Team Captain: Ryan Gianetta Anthem Blue Cross Rebels $92,369 Team Captain: Dan Abrams Team Basso $73,555 Team Captain: Al Basso Howard’s Team $64,738 Team Captain: Jay McCabe Team NetApp $55,733 Team Captain: Robert Ehlbeck 24 Hour Fitness $53,848 Team Captain: Roland Hoffman MOST Team Top of the Hill $52,697 Team Captain: John Most

Members of Team Lucky smile for the camera.

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Team Rehab United finishes on Day One at Bike MS 2010.

Gold Level ($25,000-49,999) Team Gottbetter GottaRide! - $41,844

Team Shoebacca - $41,462 KPMG All Stars - $38,175 Mitsubishi Motors - $35,775 OutSpokin’ For A Cure - $35,338 Union Bank & UnionBanc Investment Services - $34,590 SchoolsFirst FCU - $34,460 Team Crash - $34,100 Power Peddlers - $34,074 Team Intuit - $30,522.00 Wells Fargo - $29,801 Team Qualcomm - $28,685 Bill’s Biker Backers - $27,779 HD Supply - $26,653

JOIN THE MOVEMENT: nationalMSsociety.org

Silver Level ($15,000-24,999) teaMSeaside - $24,063 Team COX - $23,783 Team Wescom - $22,786 Team Tom - $21,417 Rehab United - $21,338 HS Power Spinners - $20,825 Movers and Shakers - $20,749 ROC ‘N Rollers - $18,135 Annie’s Gang - $17,826 Still Kicking - $17,585 Team Jim Beam - $16,910 Beckman Coulter Team - $16,250 Team Hansen’s - $15,740 Team Saddle Soars - $15,134 MS Team FedEx - $15,021


2010 150 CLUB 1. Al Basso - $46,815 2. Franklyn Gottbetter - $35,783 3. John Most - $25,525 4. Daniel Abrams - $19,247 5. James Hillebrandt - $17,970 6. Rona Kay - $15,767 7. Jack Babbitt - $14,025 8. Paul Dechary - $11,520 9. Douglas Peterson - $11,374 10. Don Swearingen - $10,468 11. Jay McCabe - $10,035 12. Bryon Barnes - $10,007 13. Joe Cucinotti - $10,000.11 14. Joe Sofio - $10,000 15. Cindy Roper - $8,875 16. Kevin Gaffney - $8,753 17. Mark Malbon - $8,010 18. Steve Malloy - $7,600.78 19. Ajay Madiah - $6,892.89 20. Roger Waterman - $6,600 21. Joshua Berezin - $6,550 22. Jan Plessner - $6,485 23. Debbi Kemp - $6,452.47 24. Kirk Evans - $6,125 25. Tom Amato - $6,120 26. Roland Hoffman - $6,116.24 27. Jim Elie - $6,095 28. Shar Kanamouie - $5,750 29. Dan Fischer - $5,735 30. Tony Letendre - $5,665 31. Michele Polf - $5,656 32. Raniel Diaz - $5,630 33. Branka Billante - $5,565 34. Peter Bissell - $5,525 35. Greg White - $5,501 36. Bob Ott - $5,355 37. Greg Ferree - $5,340 38. Michael Plumlee - $5,280 39. Mary Storm - $5,051 40. Ken McKinley - $4,995 41. Peter Albini - $4,956 42. Claudette Higdon - $4,945 43. Tim Bockhold - $4,870 44. Bill Nolte - $4825 45. Wendy Carter - $4,805 46. Hugh Neuharth - $4,765 47. Robert Moore - $4,611 48. Wes Fleming - $4,565 49. Vance McNeilly - $4,370 50. Terri Gaydon - $4,340 51. Matthew Fein - $4,299 52. Hank Jones - $4,290 53. Ricardo Irizarry - $4,226.10 54. David Brooks - $4,205 55. Ron Wilsie - $4,170

56. Jeff Weyant - $4,150 57. Thomas Obkircher - $4,120 58. Roger Voet - $4,100 59. Joel Greiner - $4,030 60. Amy Blase - $4,000 61. Doug Allen - $3,855 62. David Wright - $3,795 63. Keith Sherwood - $3,740 64. William Fortner - $3,690 65. Stacie Treposkoufes - $3,685 66. Phil Ohme - $3,620 67. Christopher Paskach - $3,600 68. Nicole West - $3,595 69. Roxayne Spruance - $3,570 70. Gary Myers - $3,565 71. Tim Dolan - $3,505 72. Mark Reden - $3,484 73. Susan McCabe-Patke - $3,445 74. Lori Wilson - $3,423 75. Brenda Swenson - $3,417 76. Jerry Sampson - $3,409 77. Chris Hillock - $3,370 78. Harrison Hodges - $3,359.01 79. Steve Starboard - $3,345 80. Charles Kennedy - $3,325 81. David Hopkins - $3,315 82. Charles Nugent - $3,300 83. Mary Hill - $3,287 84. Mike Fassel - $3,270 85. Donald Kolehmainen - $3,207 86. Frank Sibley - $3,200 87. Darlene Bayardo - $3,195 87. Julie Flaiz-Windham - $3,195 88. William Fischbeck - $3,145 89. Bill Petersen - $3,123.17 90. Ray Freiwirth - $3,120 91. Joseph Collins - $3,118 92. Steven Seibert - $3,115 93. Cindy Barnsdale - $3,100 94. Arnie Bertram - $3,065 95. David Waechter - $3,060 96. Steven Misrack - $3,015 97. Georgia Frousiakis - $3,000 97. Jana Cullen - $3,000 98. Mitch Rickard - $2,940 99. John Hamilton - $2,910 100. Michael Jordan - $2,900 101. Bill Nichols - $2,883 102. Bruce Kahn - $2,866 103. Marilee Bresciani - $2,850 104. Joseph Monier - $2,820.67 105. Robin Soehl - $2,820 106. Mark Firger - $2,800 106. Don Soucie - $2,800 107. Bob Marmor - $2,782 108. Joel Eisenberg - $2,755

FUNDING THE MISSION 109. Sean Callan - $2,750 109. John Pierce - $2,750 110. Chriss Carr - $2,745 111. Chris White - $2,744.39 112. Scott Scheer - $2,731 112. Michael Campbell - $2,731 113. Aaron Brown - $2,725 114. Michael Wallenstein - $2,712 115. Michael Adam - $2,700 116. Mark Neilson - $2,695 117. Larry Stinson - $2,676 118. Randy Jackson - $2,655 119. Kristin Zandbergen - $2,640 120. Carrie Thorson - $2,615 121. Gerry Brewster - $2,597 122. Jim Shepp - $2,580 123. Bets Service - $2,570 124. Katherine Wiley - $2,559 125. Mark Steele - $2,555 126. Josephus Van Engelen - $2,550 126. Dwayne Ziegler - $2,550 126. Travis Wasson - $2,550 127. Mark Tansey - $2,530 127. Christopher Vournakis - $2,530 128. Elizabeth Giovaniello - $2,525 129. Tom McDowell - $2,520 130. Roger Kays - $2,500 130. Leigh Merola - $2,500 130. Karen Adam - $2,500 131. Denise Hawkins - $2,480 132. Kimberly Roush - $2,470 133. Mike Flanagan - $2,460 134. Jenny Tsoulos - $2,450 134. Lynn Pressey - $2,450 135. Becky Kealy - $2,442 136. Susan McIlvain - $2,441 137. Sam Rubin - $2,420 138. Anne Coleman - $2,406 139. Wendy Worcester - $2,405 140. Brian Driscoll - $2,400 140. Jerry Giovaniello - $2,400 141. Jennifer Hahn - $2,385 142. Michael Alti - $2,380 143. Keith Davenport - $2,360 144. Jodi Most - $2,340.44 145. James Jackson - $2,340 146. Bruce Strauss - $2,330 147. Robert Belyea - $2,326 148. Adrian Ko - $2,315 149. Bill Holgate - $2,300 150. Bruce Witt - $2,295 150. Robert Stojkovic - $2,295 150. Tracy Gottbetter - $2,295 150. Ryan Giannetta - $2,295

TOLL FREE NUMBER 1 800 344 4867

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PROGRAMS & SERVICES

MORERESOURCES

FROM OUR MEMBERS TO YOU Caring for the Caregiver: Get the Support You Need! By Ellen Caprio “We haven’t gone to the beach in years,” I had made an off-hand comment at my caregiver support group years ago. “How can Mike get out there?” I had heard about the wheelchair pathway out onto the sand in Pacific Beach, but it didn’t get Mike close enough to even hear the waves. So, like with many activities, we just stopped going. “You can get one of those beach wheelchairs!” a member of my group told me. “They’re free. Just go to the lifeguard station at Mission Beach. You might have to call first for a reservation.” “But we would need a motorized one. Do they have those?” I asked. “Yes,” I was assured, “they have one and I think they just got another.” I had no idea that Mike could enjoy the beach again. He drove right up to the waves! Our son Sammy could make sand castles too while he watched. That summer I felt that we had regained some of the freedom we had lost as a family due to Mike’s progressive multiple sclerosis (MS). I had my caregiver support group to thank.

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Mike and Sammy in 2007 at Mission Beach.

“Every time you go, you pick up something,” says Ellen Majewski, a long-time group member, “and even if you can’t use it, you may be able to use it for someone else.” “Life is going to change,” Ellen advises new caregivers, “but it’s not always hopeless. You keep changing along with it.” Ellen and I are part of a professionally-led MS caregiver support group that meets monthly at Southern Caregiver Resource Center. It is facilitated by Family Consultant Seraphina Galante, MSW, who ensures that all share, stay on track, and are aware of resources. If you’re interested in joining the group or for more information, call Seraphina at (858) 268-4432, extension 112. Please see page 9 for more information.

JOIN THE MOVEMENT: nationalMSsociety.org

The Department of Veteran Affairs (VA) recently launched new initiatives for caregivers of Veterans with MS. The first is the National Caregivers Support Line, a telephone-based information line for family members and loved ones who provide care for veterans who are living with the effects of war, disability, chronic illness, or aging. Licensed clinical social workers are available to answer questions, listen to concerns and link callers to the Caregiver Support Coordinator at their local VA Medical Center. For more information call (855) 260-3274 or visit caregiver.va.gov. Another initiative is a monthly support and education conference call for caregivers of veterans with MS, where caregivers can connect and share their experiences. In addition to time for networking, educational topics and resources will also be discussed. The group meets the fourth Monday of every month from 5 to 6pm. The call-in number is (800) 7671750, access code 43157#. For more information on this monthly support group please contact the group’s facilitator, Maggie Kazmierski, LCSW-C at (800) 464-6295, ext. 6095 or Margaret.Kazmierski@va.gov.


MARKYOURCALENDARS

MOVING TOWARD A WORLD FREE OF MS | PROGRAM HAPPENINGS

Moving Forward: Program for the Newly Diagnosed Saturday, May 21 8:30 a.m. – 12:15 p.m. Costa Mesa Moving Forward is a free educational seminar for people who are newly diagnosed with multiple sclerosis (MS) within the past 3 years. Our objective is to provide you with information about the diagnosis of MS, treatment options, and the emotional aspects of MS. This is your chance to have your questions answered, learn the latest about MS and meet others living with MS. Join us! First Steps: A Professionally-Led Support Group for Individuals who are Newly Diagnosed with MS Wednesdays, June 8 - July 27 6:30 – 8:00 pm in Costa Mesa Are you new to the world of MS? Join us in a safe environment for this 8-week group to talk about living with the disease and meet others with MS. This group is hosted and open to people who have been diagnosed with MS within the past 3 years. Please register by June 1.

Boys’ Night Out Thursday, June 16 6:00 – 9:00pm Carlsbad An exciting new program for men living with MS, Boys’ Night Out provides guys-only social events to discuss life with MS. New outings are planned four times a year.

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.”

SAVE THE DATE! MS Research Symposium Saturday, July 16 | 8:30am-12:30pm | Santa Ana This educational symposium provides updates on the latest MS research along with information of symptom management during the upcoming summer months. An invitation along with more details will be available in June. Women’s Wellness Weekend September 16 - 18 | Carlsbad Ladies! Mark your calendars for the Women’s Wellness Weekend for women with MS. Enjoy a two-night stay at the beautiful Sheraton Resort in Carlsbad. Our focus will be on women’s issues, wellness education, relaxation and most importantly, FUN! More information will be sent to you in June! Caring for the MS Caregiver Saturday, July 23 | 8:30am-2:30pm | San Diego Are you a family member or friend caring for a loved one with MS? Join other family caregivers at this free educational event. Gain valuable resources including: fall prevention, transfer techniques and assistive devices, mobility solutions and advanced care planning. Further details will be included in the invitation to be mailed in June. 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 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 Susana Pérez 714-235-7570 Brea: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 Rob Lammers 714-990-2933 Brea As of May 7 1st Friday of the month, 10am - 12pm Denise Kish 909-519-4410 Jim Langdon 714-392-2052 Costa Mesa: Man to Man 1st & 3rd Wednesday 1:30 - 3pm Frank Austin 714-925-4100 Mike Milne 949-215-8502

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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Dana Point: Minimal Symptoms / Newly Diagnosed 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 Susan Watson 949-493-1299 Huntington Beach: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 Priscilla Wolz 714-846-6526 Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Karen Patterson 714-377-4006 Laurie Cable 714-969-8298 Irvine: Mature Group 2nd & 4th Wednesday 10am - 12pm Betty Brusco 949-481-0143 Jack Santos 949-786-9593 Irvine: Girl Talk 3rd Monday, 11am - 1:30pm Tabitha Evans 714-669-5618 Laguna Hills 1st Tuesday, 10am - 12pm Francince Grasso 949-278-6935 Karen Harlas 949-498-9583 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

JOIN THE MOVEMENT: nationalMSsociety.org

Mission Viejo: Early-Retired with MS 1st Wednesday 11am - 1:30pm Celine Miller 949-361-0878 Mission Viejo: Minimal Symptoms / Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 Susan Watson 949-493-1299 Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 Norma Mucia 714-641-9171 Newport Beach: Minimal Symptoms / Newly Diagnosed 2nd Tuesday, 11am - 1pm Sherri Brash 714-846-2064


SELF-HELP GROUPS San Diego County Cardiff by the Sea: Women’s Group Future meetings put on hold For more information, please contact Jessica Goodrich 714-689-9602 Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964

Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129

Professionally-led groups

San Diego (Clairemont/ La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 10am - 12pm Denise Kish 909-519-4410

IN ORANGE & SAN DIEGO COUNTIES

Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Susan Lipp 619-248-0669 Bonnie Kuhn 619-749-8806

San Diego: Mens Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:30pm Bill Homer 858-571-1867

Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 Michele Easterling 760-805-6390

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

Escondido: Christian Group 3rd Friday, 1-3 pm Calvary Chapel of Escondido 1675 Seven Oakes Rd, Room 4 Dawn Vallely 760-390-1777

Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Kris Hodge 619-933-2601 Debbie Centeno 619-460-4123

Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 Poway Weingart Center 13094 Civic Centre Drive 1st Tuesday, 6:30pm Peggy Green 858-748-4009

Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month (beginning May 10) 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

TOLL FREE NUMBER 1 800 344 4867

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Aquatics

Strength Training

Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Tuesdays & Thursdays 12 - 1pm Katie Freiert (714) 689-9601

Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:45 - 11:45am San Diego: MS F.I.T.T Addie’s Personal Training Studio 4440 Ingraham St. Saturdays, 11:30am - 12pm $5 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 San Diego: Indoor Wave House Athletic Club 3115 Ocean Front Walk Mondays, Wednesdays & Fridays 11am - 12pm Vista: Indoor Bally’s Fitness Center 1932 Hacienda Drive Tuesdays & Thursdays 11:45am - 12:45pm

BALANCE La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm Mission Viejo Balance Rehabilitation 25971 Pala, Suite 110 Mondays, 1 - 2pm

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IN YOUR NEIGHBORHOOD

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 - 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

JOIN THE MOVEMENT: nationalMSsociety.org

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: 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


WALK MS

Help us reach our goal for walk ms 2011 Thirteen-thousand participants came out for Walk MS 2011 in April and May at the University of California in Irvine, NTC Park at Liberty Station in San Diego, and LEGOLAND® California in Carlsbad. Participants enjoyed scenic routes that offered a 2-3 mile fun walk. The event was a celebration featuring a festival including live music, Papa John’s pizza, entertainment and a LEGOLAND® California Fun Zone. Participants are still fundraising to help us reach our goal of $1.7 million. Check out MSwalk.com to learn about the great prizes you can win or to make a donation. A huge thank you goes out to San Diego County Credit Union, who has supported Walk MS as the title sponsor for the past 10 years! Through the power of their widespread volunteerism and generosity, SDCCU has raised hope and funds for more than 45,500 people affected by MS who live in the communities they serve in San Diego and the surrounding counties. Theresa Halleck, CEO, underscored that when she said, “At SDCCU, we believe in supporting our local communities. Participating in the Walk allows us to give back to our customers and communities by supporting this very important cause.”

Walk MS participants at the University of California, Irvine on April 9

WE ARE EXTREMELY THANKFUL FOR ALL OUR SPONSORS TITLE SPONSOR

PRESENTING Sponsors

platinum sponsors

GOLD SPONSORS

CBS Outdoor • Clear Channel Outdoor • KPBS MedMedia • PennySaver USA • Pure Protein TOLL FREE NUMBER 1 800 344 4867

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RESEARCH

RESEARCH NEXT STEPS The turn of the year saw MS researchers assessing their progress in a number of areas. A think tank on progressive MS brought together MS investigators, research funding agencies and industry representatives. And, in January, Dr. Timothy Coetzee, chief research officer of the Society (see News), moderated a panel of MS researchers in a live webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” How does MS progress? At the think tank, which was hosted by the Society and its commercial drug development entity Fast Forward last December in Boston, Society President and CEO Joyce Nelson pointed out that progressive MS is the centerpiece of the Society’s Strategic Response for the next five years, with a focus on:

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Researching what leads to disease progression,

Finding ways to repair damage to the nervous system,

Accelerating the development of new therapies.

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Better identification, faster Finding ways to more quickly identify progressive MS based on biology rather than on symptoms would mean therapies could be tested earlier in the course of the disease and possibly protect the nervous system from injury. Some evidence indicates that nerve degeneration occurs independently of inflammatory events, but there is other evidence that degeneration stops when inflammation subsides. Therefore, more research is needed to understand the cause of underlying nerve damage in progressive MS and to identify new targets for therapies. Participants also discussed the need for biomarkers—“footprints” that could help identify or predict MS progression. Think tank participants reported that steady progress is being made in finding noninvasive ways of detecting nervous system damage and whether protection or repair are taking place. Additional issues The participants discussed other important issues, as well. Many clinical trials do not run long enough to make

JOIN THE MOVEMENT: nationalMSsociety.org

clear whether there is an effect against slow progression. The traditional measurement of disability progression, the EDSS scale, is not sensitive to subtle change, which poses a problem in monitoring progressive MS. And, some previous trials used a mixed population of people with primary progressive MS and secondary progressive MS. Since it’s not clear that all types of progressive MS would respond the same way, mixing participants may be one reason that some past trials were not successful. For a complete wrap-up of the meeting and a webcast featuring a panel of several participants, visit nationalMSsociety.org/ thinktank.


RESEARCH

Repairing the nervous system New drugs emerging On January 11, Dr. Coetzee, The researchers also talked chief research officer of the about repairing the nervous National MS Society, was system by stimulating the joined by Drs. Peter Calabresi, body’s own repair cells to be Ian D.Duncan, Charles ffrench- more active or by trying several Constant and Gavin Giovannoni types of stem cells to repair for the webcast, “Repairing the myelin. Part of the conversation Nervous System in included how MS: Progress and newer approved Part of the Next Steps.” The treatments conversation four researchers may help in the included how recently served battle to protect newer approved as leaders of four the nervous international treatments may system in people teams in the help in the battle to with MS. National MS protect the nervous “For the first Society’s Nervous system in people time we’re really System Repair starting to see with MS. and Protection the emergence Initiative, funded of very, very through the Promise: 2010 effective drugs for treating campaign. inflammation,” Dr. Giovannoni The investigators discussed said, noting that these therapies research on the ways that might also help to stave off nerve fibers, or axons, and their nervous system damage and protective myelin coatings are allow natural repair processes damaged. Certain drugs the to work, although this has experts have studied seem to not yet been proven. “We’ve prevent nerve cells from dying seen people who have highly in an animal model. Since some active disease going on these of these drugs are commercially drugs and improving,” he said. available right now for other For a full report or to read diseases, they are good a transcript of the webcast, candidates for future visit nationalMSsociety.org/ clinical trials. webcasts.

BEInfoRMED Sign up for our monthly MS eNEWS Get the latest news on research in your inbox. Send an email to msinfo@mspacific.org with the subject “Send me MS research info” and your name and address in the body.

TOLL FREE NUMBER 1 800 344 4867

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SUPPORTING THE MISSION

THE ms Dinner auction celebrates its silver anniversary this fall

CHAPTER VOLUNTEERS SHINE Volunteers are essential to the chapter. We are humbled by the amount of support and generosity we receive from individuals and corporations and we are proud to honor them publicly. NBC San Diego was honored at the 17th Annual Health Hero Awards Breakfast. For over a decade, NBC has supported the chapter by promoting Walk MS. The station interviews participants on air, runs PSAs to help garner participation, and on-air talent emcees on event day. The support from NBC has been the leading contributing factor for the event’s success.

Auction guests smile for the camera.

Mark your calendars now for the 25th Annual MS Dinner Auction to be held on November 19, 2011. Join us as we return to Loews Coronado Bay Resort for a wonderful evening of silent and live auction items, gourmet dining, and fabulous entertainment. Preparations have already begun for our silver anniversary celebration. Want to get involved with this year’s very special event? To join the MS Dinner Auction Committee, donate items or receive more information visit msdinnerauction.com or contact Angela at (760)448-8434 or angela.northrup@nmss.org. 14

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OneOC and the Orange County Register presented the 35th Annual Spirit of Volunteerism Awards, where our volunteers were honored for their dedicated service to the chapter. The MOST Agency (pictured above with chapter staff), an Orange County-based advertising firm, provides advertising services to the chapter pro bono. Owner and Board of Trustees member, John Most, employs the help of his staff to treat the chapter like a paying client, providing media plans, creative design, and booking advertising in an effort to boost awareness and attendance for the chapter’s events. Betty and Sam Brusco have been tireless supporters of the chapter for many years. They lead a Walk MS team that walks for Betty, who has been living with MS for the past 30 years. Team Betty’s Builders raises tens of thousands of dollars each year, and Betty’s husband, Sam, has been instrumental in the overall growth of the chapter by bringing in friends and colleagues as new supporters of the chapter each year.

JOIN THE MOVEMENT: nationalMSsociety.org


CHALLENGE WALK MS

Challenge Walk MS compels walkers to raise $1.7M in 2011 Celebrating it’s 10th anniversay, Challenge Walk MS has set the bar high, driving walkers to raise $10 million in 10 years. Each year, over 300 participants unite to walk 50 miles over 3 days to create a world free of MS. Challenge Walk MS, taking place September 23-25 is an all-inclusive weekend, where walkers enjoy hotel stays and banqueted meals, all while experiencing one of the most inspirational weekends of their lives. Learn more at myMSchallenge.com.

Don’t take it from us -- here’s what some of our walkers have to say!

I was diagnosed with MS in July of 2001 and I felt a little out of control. MS is a scary thing and Challenge Walk MS is something I can do that makes me feel like I’m back in control again. – Kelly I joined the Challenge and became part of an amazing group of people. Crossing the finish line arm-in-arm with friends, old and new, WILL change your life! – Beth

Baja and Pat play around at the start line.

Race to Stop MS

Join the coaches from Rehab United for a triathlon transition clinic on the morning June 12. The cost of the clinic is $20 and all proceeds will be donated to the Society.

Challenge walkers enjoy beautiful coastal views!

Email nicole.pearson@nmss.org to sign up or for more information. 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

MAY 21

Moving Forward: Program for the Newly Diagnosed

JUNE 16 Boys’ Night Out

JULY 16 23

MS Research Symposium Caring for the MS Caregiver

SEPTEMBER 16-18 Women’s Wellness Weekend 23-25 Challenge Walk MS

OCTOBER

22-23 Bike MS Bay to Bay Tour For more events, visit the Mark Your Calendars section on page 7 Or online at calendar.mspacific.org

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JOIN THE MOVEMENT: nationalMSsociety.org

Classifieds ROOM FOR RENT in beautiful accessible home in Oceanside. Private bedroom, shared bath, use of all amenities. Pets okay. $600 per month. Call Jennifer at (760) 439-8592. FOR SALE: 1989 Econoline Ford Van with 302 engine and lift. Good condition, 106,000 miles. $7,000 OBO. Call David (714) 982-7066 or (714) 391-1642. Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at nationalMSsociety.org or 1-800-344-4867 (1-800-FIGHT-MS).


Spring 2011 - MSConnection