Spring 2011 - MSConnection

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

INSIDE THIS ISSUE

PACIFIC SOUTH COAST CHAPTER

From Our Members to You PAGE 6

Walk MS Fundraising Continues PAGE 11

Research Next Steps PAGE 12-13

Chapter Volunteers Shine PAGE 14

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 award-winning 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

BIKE MS SHIFTS INTO HIGH GEAR!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.

Advocacy in Action PAGE 3

Success for Bike MS 2010! PAGE 4-5

Challenging the Challenge Walkers PAGE 15

INSIDELOOK

A Team Disney participant cheers at the finish line in 2010 (top). Top fundraiser, Dan Abrams,

celebrates with his team members (bottom).

2 | JOIN THE MOVEMENT: nationalMSsociety.org

MS AWARENESS WEEK

(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

PACIFIC SOUTH COAST CHAPTER

A WEEK TO REMEMBER

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.

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

TOLL FREE NUMbER 1 800 344 4867 | 3

ACTIVISM

MAY 25 IS WORLD MS DAY

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.

SPOTLIGHT ON ACTIVISM

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 [email protected] or (760) 448-8404 today!

DOMORE

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.

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.


FUNDING THE MISSION

BIkE MS 2010: A HUGE SUCCESSTHE 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 TEAMSMission 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

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

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

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

Members of Team Lucky smile for the camera.


FUNDING THE MISSION2010 150 CLUB1. Al Basso - $46,8152. Franklyn Gottbetter - $35,7833. John Most - $25,5254. Daniel Abrams - $19,2475. James Hillebrandt - $17,9706. Rona Kay - $15,7677. Jack Babbitt - $14,0258. Paul Dechary - $11,5209. Douglas Peterson - $11,37410. Don Swearingen - $10,46811. Jay McCabe - $10,03512. Bryon Barnes - $10,00713. Joe Cucinotti - $10,000.1114. Joe Sofio - $10,00015. Cindy Roper - $8,87516. Kevin Gaffney - $8,75317. Mark Malbon - $8,01018. Steve Malloy - $7,600.7819. Ajay Madiah - $6,892.8920. Roger Waterman - $6,60021. Joshua Berezin - $6,55022. Jan Plessner - $6,48523. Debbi kemp - $6,452.4724. Kirk Evans - $6,12525. Tom Amato - $6,12026. Roland Hoffman - $6,116.2427. Jim Elie - $6,09528. Shar Kanamouie - $5,75029. Dan Fischer - $5,73530. Tony Letendre - $5,66531. Michele Polf - $5,65632. Raniel Diaz - $5,63033. Branka Billante - $5,56534. Peter Bissell - $5,52535. Greg White - $5,50136. Bob Ott - $5,35537. Greg Ferree - $5,34038. Michael Plumlee - $5,28039. Mary Storm - $5,05140. Ken McKinley - $4,99541. Peter Albini - $4,95642. Claudette Higdon - $4,94543. Tim Bockhold - $4,87044. Bill Nolte - $482545. Wendy Carter - $4,80546. Hugh Neuharth - $4,76547. Robert Moore - $4,61148. Wes Fleming - $4,56549. Vance McNeilly - $4,37050. Terri Gaydon - $4,34051. Matthew Fein - $4,29952. Hank Jones - $4,29053. Ricardo Irizarry - $4,226.1054. David Brooks - $4,20555. Ron Wilsie - $4,170

56. Jeff Weyant - $4,15057. Thomas Obkircher - $4,12058. Roger Voet - $4,10059. Joel Greiner - $4,03060. Amy Blase - $4,00061. Doug Allen - $3,85562. David Wright - $3,79563. Keith Sherwood - $3,74064. William Fortner - $3,69065. Stacie Treposkoufes - $3,68566. Phil Ohme - $3,62067. Christopher Paskach - $3,60068. Nicole West - $3,59569. Roxayne Spruance - $3,57070. Gary Myers - $3,56571. Tim Dolan - $3,50572. Mark Reden - $3,48473. Susan McCabe-Patke - $3,44574. Lori Wilson - $3,42375. Brenda Swenson - $3,41776. Jerry Sampson - $3,40977. Chris Hillock - $3,37078. Harrison Hodges - $3,359.0179. Steve Starboard - $3,34580. Charles Kennedy - $3,32581. David Hopkins - $3,31582. Charles Nugent - $3,30083. Mary Hill - $3,28784. Mike Fassel - $3,27085. Donald kolehmainen - $3,20786. Frank Sibley - $3,20087. Darlene Bayardo - $3,19587. Julie Flaiz-Windham - $3,19588. William Fischbeck - $3,14589. Bill Petersen - $3,123.1790. Ray Freiwirth - $3,12091. Joseph Collins - $3,11892. Steven Seibert - $3,11593. Cindy Barnsdale - $3,10094. Arnie Bertram - $3,06595. David Waechter - $3,06096. Steven Misrack - $3,01597. Georgia Frousiakis - $3,00097. Jana Cullen - $3,00098. Mitch Rickard - $2,94099. John Hamilton - $2,910100. Michael Jordan - $2,900101. Bill Nichols - $2,883102. Bruce Kahn - $2,866103. Marilee Bresciani - $2,850104. Joseph Monier - $2,820.67105. Robin Soehl - $2,820106. Mark Firger - $2,800106. Don Soucie - $2,800107. Bob Marmor - $2,782108. Joel Eisenberg - $2,755

109. Sean Callan - $2,750109. John Pierce - $2,750110. Chriss Carr - $2,745111. Chris White - $2,744.39112. Scott Scheer - $2,731112. Michael Campbell - $2,731113. Aaron Brown - $2,725114. Michael Wallenstein - $2,712115. Michael Adam - $2,700116. Mark Neilson - $2,695117. Larry Stinson - $2,676118. Randy Jackson - $2,655119. Kristin Zandbergen - $2,640120. Carrie Thorson - $2,615121. Gerry Brewster - $2,597122. Jim Shepp - $2,580123. Bets Service - $2,570124. Katherine Wiley - $2,559125. Mark Steele - $2,555126. Josephus Van Engelen - $2,550126. Dwayne Ziegler - $2,550126. Travis Wasson - $2,550127. Mark Tansey - $2,530127. Christopher Vournakis - $2,530128. Elizabeth Giovaniello - $2,525129. Tom McDowell - $2,520130. Roger Kays - $2,500130. Leigh Merola - $2,500130. Karen Adam - $2,500131. Denise Hawkins - $2,480132. Kimberly Roush - $2,470133. Mike Flanagan - $2,460134. Jenny Tsoulos - $2,450134. Lynn Pressey - $2,450135. Becky Kealy - $2,442136. Susan McIlvain - $2,441137. Sam Rubin - $2,420138. Anne Coleman - $2,406139. Wendy Worcester - $2,405140. Brian Driscoll - $2,400140. Jerry Giovaniello - $2,400141. Jennifer Hahn - $2,385142. Michael Alti - $2,380143. keith Davenport - $2,360144. Jodi Most - $2,340.44145. James Jackson - $2,340146. Bruce Strauss - $2,330147. Robert Belyea - $2,326148. Adrian Ko - $2,315149. Bill Holgate - $2,300150. Bruce Witt - $2,295150. Robert Stojkovic - $2,295150. Tracy Gottbetter - $2,295150. Ryan Giannetta - $2,295


PROGRAMS & SERVICES

Caring for the Caregiver: Get the Support You Need!

FROM OUR MEMBERS TO YOU

Mike and Sammy in 2007 at Mission Beach.

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.

“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.

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) 767-1750, 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 [email protected].

MORERESOURCES


MOVING TOWARD A WORLD FREE OF MS | PROGRAM HAPPENINGS

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.”

REGISTERTODAy

MARKYOURCALENDARSMoving Forward: Program for the Newly DiagnosedSaturday, May 218:30 a.m. – 12:15 p.m.Costa MesaMoving 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 MSWednesdays, June 8 - July 276:30 – 8:00 pm in Costa MesaAre 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 OutThursday, June 166:00 – 9:00pmCarlsbadAn 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.

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.


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

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

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

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


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

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

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

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

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

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

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

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

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

PROFESSIONALLY-LED GROUPS

IN ORANGE & SAn DIEGO COunTIESSupport 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


AqUATICS

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

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

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

IN YOUR NEIGHBORHOOD

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

BALANCE

STRENGTH TRAINING

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

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

HELP US REACH OUR GOAL FOR WALk MS 2011Thirteen-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

TOLL FREE NUMbER 1 800 344 4867 | 11

WALK MS

WE ARE EXTREMELY THANKFUL FOR ALL OUR SPONSORS

TITLE SPONSOR

PRESENTING SPONSORS

GOLD SPOnSORS

CBS Outdoor • Clear Channel Outdoor • kPBS MedMedia • PennySaver uSA • Pure Protein

PLATINUM SPONSORS


RESEARCH NEXT STEPSThe 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:

• Researching what leads to disease progression,

• Finding ways to repair damage to the nervous system,

• Accelerating the development of new therapies.

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

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

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RESEARCH

Repairing the nervous system On January 11, Dr. Coetzee, chief research officer of the National MS Society, was joined by Drs. Peter Calabresi, Ian D.Duncan, Charles ffrench-Constant and Gavin Giovannoni for the webcast, “Repairing the Nervous System in MS: Progress and Next Steps.” The four researchers recently served as leaders of four international teams in the National MS Society’s Nervous System Repair and Protection Initiative, funded through the Promise: 2010 campaign.

The investigators discussed research on the ways that nerve fibers, or axons, and their protective myelin coatings are damaged. Certain drugs the experts have studied seem to prevent nerve cells from dying in an animal model. Since some of these drugs are commercially available right now for other diseases, they are good candidates for future clinical trials.

New drugs emerging The researchers also talked about repairing the nervous system by stimulating the body’s own repair cells to be more active or by trying several types of stem cells to repair myelin. Part of the conversation

included how newer approved treatments may help in the battle to protect the nervous system in people with MS.

“For the first time we’re really starting to see the emergence of very, very

effective drugs for treating inflammation,” Dr. Giovannoni said, noting that these therapies might also help to stave off nervous system damage and allow natural repair processes to work, although this has not yet been proven. “We’ve seen people who have highly active disease going on these drugs and improving,” he said. For a full report or to read a transcript of the webcast, visit nationalMSsociety.org/webcasts.

BEInFORMEDSign up for our monthly MS eNEWS

Get the latest news on research in your inbox. Send an email to [email protected] with the subject “Send me MS research info” and your name and address in the body.

Part of the conversation included how

newer approved treatments may

help in the battle to protect the nervous

system in people with MS.


SUPPORTING THE MISSION

THE MS DINNER AUCTION CELEBRATES ITS SILVER ANNIVERSARY THIS FALL

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 [email protected].

CHAPTER VOLUNTEERS SHINEVOLUNTEERS 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.

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.

Auction guests smile for the camera.

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CHALLENGE WALK MS

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

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.

Email [email protected] to sign up or for more information.

CHALLENGE WALk MS COMPELS WALkERS TO RAISE $1.7M IN 2011

Challenge walkers enjoy beautiful coastal views!

Baja and Pat play around at the start line.


CALENDAR OF EVENTS

MAY21 Moving Forward: Program for the Newly Diagnosed

JUNE16 boys’ Night Out

JULY16 MS Research Symposium 23 Caring for the MS Caregiver SEPTEMBER16-18 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 7OR ONLINE AT CALENDAR.MSPACIFIC.ORG

NON-PROFITORGANIZATION

U.S. POSTAGEPAID

San Diego, CAPermit # 451

Pacific South Coast Chapter

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

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

Documents

Transcript of Spring 2011 - MSConnection