msconnection spring 2014
DESCRIPTION
MSCONNECTION SPRING 2014TRANSCRIPT
SPRING 2014 PacIfIc South coaSt chaPteR
MS coNNectIoN NewSletteR
INSIDe thIS ISSue
06DIY fuNDRaISING SucceSS
07MaRk YouR caleNDaRS foR uPcoMING eveNtS
13ReSouRceS foR couPleS lIvING wIth MS
16the PRoMISe of MYelIN RePaIR
MaNY waYS to Get INvolveD at walk MSPaGe 4
02 MS connection: SPRinG 2014
a Note fRoM the chaPteR PReSIDeNt & BoaRD chaIR
how aRe You GoING to celeBRate MS awaReNeSS week? Spring is in the air, and though we didn’t suffer a cold winter like some of the rest of the country, we’re still looking forward to warm days and plenty of activities to support multiple sclerosis. We’re celebrating MS Awareness Week March 3-9 and there are plenty of ways you can get involved to help us spread MS awareness this week and beyond!
• Bcome an MS activist! Our advocates will leave their mark on Capitol Hill in Washington, D.C. to support this year’s public policy issues (page 20). You can also join the Action Alert email list to get notifications when an important issue or piece of legislation calls for your immediate attention.
• Volunteer! There are several ways to volunteer (page 4 and 12) at the chapter, including at our brand new office in Orange County!
• Join us at an upcoming Walk MS event (page 4)! Join a community coming together to support those affected by MS. It’s a wonderful day of family-friendly fun, and so much more.
• Get connected with other people affected by MS at MSconnection.org. You can share why you connect to create a world free of MS with a super cool app!
Whatever you decide to do, know that it really makes a difference! Keep reading to learn more about how you can get involved today!
Cheers,
Richard V. Israel Cynthia Perazzo Chapter President Chair, Board of Trustees
Eat out on Thursday, March 6 at one
of our participating restaurants & a
portion of the proceeds will go back
to the chapter! For more information
visit tinyurl.com/MSfoodies.
coNNect wIth uS oNlINe:MSpacific.org
Like us: facebook.com/MSpacific
Watch us: youtube.com/MSpacific
On the Cover: There are so many ways to get involved with Walk MS! Learn more about how you can join the Walk MS fun on page 4!
FOODIESAGAINST MS
dine out. 3.6.14
03nationalmssociety.org | 1-800-344-4867
NatIoNal MultIPle ScleRoSIS SocIetYPacific South Coast Chapter 12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131 1-800-344-4867
Board Chair: Cynthia Perazzo Chapter President: Richard V. Israel Editor & Design: Jessica Ishikawa Associate Editor: Leslie Roach
© 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter
Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.
The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
connect with the information you needevery connection counts
Darren, diagnosed in 2002
Find resources. Get connected! 1-800-FIGHT-MS (344-4867) nationalMSsociety.org/CalServices
• Ask an MS Navigator for help to navigate the challenges of MS. Find personalized answers to your unique needs, up-to-date information, referrals and practical resources.
• Check out MS Learn Online--educational webcasts and podcasts available anytime.
• Attend a local educational event or workshop to learn about wellness, symptom management, research and more.
• Join discussions, share experiences and learn from others at MSConnection.org.
04 MS connection: SPRinG 2014
fuNDING the MISSIoN
chooSe a waY to JoIN walk MSThere’s more than one way to join the fun of Walk MS! No matter how you choose to join us, we promise you won’t regret doing your part to help people living with MS.
Ted and Kathy (on the left) ham it up as rest stop volunteers.
Volunteers Make It Happen Meet power couple Kathy and Ted Currie! These two dynamos have been volunteering and raising money for the Society for many years now. The Currie’s have been avid participants in numerous MS events, some of which include the Irvine Walk and volunteer crew members all three days at Challenge Walk MS in September. They were out on route and at rest stops supporting the mighty walkers as they journeyed down the coast. These two didn’t stop there! Kathy and Ted were on the Bike MS committee and trained all year so they could endure the two-day Bike MS Bay to Bay Tour in October riding from Irvine to San Diego. This April, Kathy and Ted will be site captains at the San Diego Walk and rest stop captains at the Carlsbad Walk. Come volunteer with this amazing couple at Walk MS and you’ll be glad you did!
Team Up to End MS Erin Oleno participates in Walk MS as team captain of Mom’s Angels. This year will be Mom’s Angels 11th year walking and fundraising. Mom’s Angels exists to honor the lives of Erin’s mother and sister, who lived with MS. “To return every year and see people like you and your team fighting this disease together is what keeps me going” Erin explains. Her mom and sister’s story has given her the courage to step up and do all that she can to help those living with MS and their families. Being team captain of Mom’s Angels has been the most incredible experience of Erin’s life.
“The Pacific South Coast Chapter has been there for me
the entire time and has gone above and beyond in helping
me get my team up and walking – and they will be there
for you every step of the way.” -Erin Oleno
Erin (center) with her team at Walk MS
05nationalmssociety.org | 1-800-344-4867
Join Us For a Walk in the Water Splish splash for MS! You can join us at one (or both) of our Water Walks! Each Water Walk boasts a fun hour in the pool with pizza and more! Chrissy Newman, team captain of the OC Water Walkers and recent 2013 Volunteer of the Year honoree is holding the 3rd Annual Water Walk on Friday, April 4 in the beautiful outdoor pool at Waterworks Aquatics in Irvine. San Diego Water Walkers can join us at the Plunge at the Wave House in Mission Beach on Friday, April 18.
Be a Virtual Walker Julie-Ann Skalko is a lifelong advocate for MS. A resident of San Diego since 1985, she has been involved because multiple family members live with MS, including her
grandmother, two sisters, and a niece. Julie-Ann typically participates in Walk MS, but her work prevented her from being present at last year’s event. That didn’t stop her from continuing to fundraise. Julie-Ann was a Virtual Walker last year, and was in San Diego in spirit. She raised $6,932, and earned herself a spot in the Elite Feet fundraising club. She is participating in this year’s walk and looks forward to meeting others in their commitment to ending MS. If you can’t join us this year, consider being a Virtual Walker!
JoIN walk MS oNe of theSe waYS toDaY!
Visit MSwalk.com or call (800) 486-6762.
Water Walkers wave from the pool
06 MS connection: SPRinG 2014
MaRk YouR caleNDaR
local eveNtS
ucSD MS SYMPoSIuM Saturday, March 15 8:30am – 12:30pm San Diego Listen to Dr. Jody Corey-Bloom discuss emerging therapies and Dr. Larry Goldstein discuss stem cell research. To register, call 800-344-4867 and press “1” or email your name, address, phone number and number of attendees to [email protected].
BoYS’ NIGht out Thursday, March 20 6:00pm – 8:00pm Irvine We invite all men living with MS to come be a part of this fun get together! This is an exciting program where new friends are made, delicious dinners are enjoyed, and interesting conversations are had. To register, please email Aarushi at [email protected] or call 714-689-9613.
RelatIoNShIP MatteRS: a PRofeSSIoNallY leD GRouP foR couPleS Starting April 1st in both Santa Ana and San Diego, this is a program specifically designed to help couples navigate and manage living with multiple sclerosis. Whether you are dating and newly diagnosed or married and have been living with MS for 20-50 years, couples learn to communicate better, solve problems, resolve conflicts, and stay connected as they face life with MS together. Limited space is available. For more information, please email Aarushi at [email protected] or call at 714-689-9613.
telecoNfeReNce: BlaDDeR aND Bowel ISSueS IN MS Thursday, April 3 6:30 – 7:30pm Listen in as nurse practitioner Pat Kennedy discusses dysfunctions that can occur related to MS that can disrupt normal bowel and bladder function. Participants will learn how to explore these issues with their health care providers for solutions that will lessen the impact on their overall quality of life. To register, call 1-800-344-4867 and press “1.”
07
aNNual DaY at the BaY Saturday, May 10 11:00am - 2:00pm Mission Bay, San Diego Join other families affected by MS for a day of fun in the sun. Enjoy adaptive sailing on the bay, a delicious BBQ and other fun activities. More information will be coming soon!
MovING foRwaRD: PRoGRaM foR the NewlY DIaGNoSeD Saturday, May 17 8:30am – 12:00pm Irvine If you have been diagnosed with MS in the last three years, this is a program designed for you. Learn about treatment options, the emotional and physical aspects of MS from community experts in the respective fields. This is also a great opportunity to meet others living with a new diagnosis.
ReSeaRch IN MultIPle ScleRoSIS luNch aND leaRN: PRoMISING ReSeaRch oN the hoRIzoN Wednesday, May 21 11:00am – 1:00pm Irvine Join neurologist and researcher Michael Demetriou MD, PhD and Ardith Courtney, DO in partnership with the chapter, for a free lunch and learn that will offer exciting details about emerging therapies and progress in MS research. Complimentary lunch and parking will be included. More information coming soon!
08
oRaNGe couNtY Anaheim: En Español Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30 - 8pm Rosa Ferreras 714-758-0829 [email protected] Susana Pérez 714-235-7570 [email protected]
Brea 1st Friday, 10am - 12pm Jim Langdon 714-392-2052 [email protected] Lisa Seifert 714-826-6393 [email protected]
Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 [email protected]
Santa Ana: Man to Man 1st Wednesday 10am-12pm Mike Milne 949-215-8502 [email protected] Jack Santos 949-786-3421 [email protected]
Dana Point: Early MS 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 [email protected] Susan Watson 949-493-1299 [email protected]
Fullerton: Christian MS Support Group 2nd Tuesday, 7:00pm - 8:30pm Sara Minton 714-773-4332 [email protected]
Huntington Beach: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 [email protected] Priscilla Wolz 714-846-6526 [email protected]
Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Laurie Cable 714-969-8298 [email protected] Karen Patterson 714-377-4006
Irvine: Walkers & Rollers 2nd Wednesday 10am - 12pm Jack Santos 949-786-3421 [email protected] Bonnie Richmond 949-677-4272 [email protected]
Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 [email protected] Karen Harlas 949-498-9583
Lake Forest: MS with Christ 3rd Monday, 6:30 - 8pm Cathy Varela 949-842-2296 David Corich 949-470-9020
Midway City 1st & 3rd Tuesdays 9:30am - 11:30am Pat Howard 714-968-0277 Linda Logan 714-374-0430 [email protected] Carolyn Cassell 714-846-0598 [email protected]
Mission Viejo: Early MS 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 [email protected] Susan Watson 949-493-1299 [email protected]
Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 [email protected]
Stanton 1st Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 [email protected]
Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 [email protected] Rob Lammers 714-528-8404 [email protected]
SaN DIeGoCarlsbad: Newly Diagnosed 1st & 3rd Saturday, 12 - 1pm [email protected] 760-448-8403
Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Yosel Tarnofsky 619-516-0411 [email protected]
If You woulD lIke MoRe INfoRMatIoN aBout SuPPoRt GRouPS IN YouR aRea, call 1-800-344-4867, aND PReSS ‘1’ oR coNtact a lISteD leaDeR.
Self-helP GRouPS
09NatIoNalMSSocIetY.oRG | 1-800-344-4867
Encinitas San Diego County Credit Union Community Room 501 North El Camino Real Last Friday, 6 - 8pm Melinda Brizendine 760-944-4549 [email protected]
Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 [email protected] Michele Easterling 760-805-6390 [email protected]
Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Escondido 1675 Seven Oakes Rd. Room 4 Jim Johnston 760-746-4279 [email protected]
Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 [email protected]
Poway Weingart Center 13094 Civic Centre Drive 1st Thursday, 6:30pm Peggy Green 858-748-4009 [email protected]
Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129
San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st & 3rd Wednesday, 11am - 12:30pm Carol Rohan 858-755-2440 [email protected]
San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Alicia Ring 858-456-8766/ 858-229-6600 [email protected]
San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 5:30pm Mike Kolender 858-274-7114 Marcus Brown 619-248-2667
San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 [email protected]
Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Angela Kretschmar 619-303-7806 [email protected]
PRofeSSIoNallY-leD SuPPoRt GRouPS IN oRaNGe & SaN DIeGo couNtIeS
Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 714-689-9613
Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT 714-689-9613 National MS Society Santa Ana Office 1221 E Dyer Road, Suite 140 Santa Ana, CA 92705
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
10
YoGaCosta Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 1:00 - 2:00pm
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, 1:00 - 2:00pm
Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:30-10:30am
San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session
BalaNce & StReNGth tRaININGLa 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, 10:30 - 11:30am
health & wellNeSS claSSeS
to atteND aNY of the lISteD claSSeS, a waIveR IS RequIReD. PleaSe coNtact 1-800-344-4867 to RequeSt a waIveR toDaY.
Carlsbad Peace and Love Yoga 2588 El Camino Real, Suite O Thurs. 1:30-2:30pm Fee based Class. For more info please call 760-720-0619 or email [email protected]
Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mon, Wed & Fri, 9 - 10am $6 per session
La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493
San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Fee-based class. Call 858-483-2711 for more information.
IN YouR NeIGhBoRhooD
San Diego: Outdoor Aquatics Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session
San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mandy Johnston 858-457-8419 $10 per class
San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Tuesdays, 10am Diana Dean-Naú 760-809-9176 $5 per class
aquatIcSCarlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tues & Thurs, 11:45am - 12:45pm
Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Thursdays, 12 - 1pm
El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mon, Wed & Fri, 11:30am - 12:30pm
Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tues & Thurs, 10:30 - 11:15am
San Diego: Indoor Wavehouse 3115 Ocean Front Walk Mon, Wed, & Fri 10:30 - 11:30am
11NatIoNalMSSocIetY.oRG | 1-800-344-4867
DIY fuNDRaISING
hIt aN ace foR MS!On Sunday, November 17, 2013, the first annual “Hit an Ace for MS” Ladies Tennis Tournament was held at Omni La Costa Resort and raised over $3,800 for the National MS Society. Host, Tricia Bothmer organized the event in honor of her sister Tracy Ziegler for her strength and courage since being diagnosed with MS 13 years ago.
The sold-out event even included a tennis player living with MS and many other players that have a loved one or friend affected by the disease. Tricia is already excited about planning this event again in 2014 to raise even more funds to support the Society.
StaRt YouR owN DIY eveNt! You can plan your own Do It Yourself Fundraising event
too! We have all the tools to help you, including the ability to set up your very own fundraising website where people
can donate online. All you need is some creativity and passion! Learn more by visiting events.MSpacific.org
or calling Krystal at 760-448-8434.
The participants of Hit an Ace for MS pose for a group shot.
12 MS coNNectIoN: SPRING 2014
SuPPoRtING the MISSIoN
coNGRatS to ouR voluNteeRS of the YeaR! Bike MS Volunteer
of the Year David Slaton (read more about David on page 15)
City Partner of the Year City of San Diego
Community Excellence Award GEICO
Community Excellence Award SDG&E
Foundation of the Year Change a Life Foundation
At our Annual Meeting of Members breakfast in January, we honored extraordinary volunteers who go the extra mile. We couldn’t do it without the incredible support of these individuals and community partners.
Chapter Star Volunteers of the Year Tim & Jackie Oates
Bike MS Corporate Partner of the Year Hansen Beverage Company
Bike MS Cycling Partner of the Year Rock N’ Road Cyclery
Golf MS Invitational Volunteer of the Year Josh Muse
Healthcare Partner of the Year Scripps Healthcare
Legislator of the Year Loretta Sanchez
Media Partner of the Year Steven Luke
MS Activist of the Year Mara Elliott
Organizational Alliance Award 24 Hour Fitness
Outstanding Partnership Award United Airlines
Passion for the Mission Award Janice Donaldson
Self Help-Group Leader of the Year Debbie Centeno
Strategic Philanthropy Corporate Partner of the Year Loews Coronado Bay Resort
Walk MS Sponsor of the Year Papa John’s
Wellness Partner of the Year Chrissy Newman
eXcItING voluNteeR oPPoRtuNItIeSJoin our Volunteer Customer Service Team! We are now accepting volunteers to help the chapter provide excellent customer service to our event participants! Some of your duties will include calling event participants or calling to thank individuals for raising funds to end MS forever. We need volunteers who have a pleasant and friendly phone voice, like to talk to people and would love to volunteer but can only volunteer from home.
You can also volunteer at our Santa Ana and San Diego offices! We are thrilled with our new location in Santa Ana, which provides plenty of space for more office volunteers. If you have a few hours to spare each week and want to provide your skills, we need your help! We can utilize you for data entry and/or general office duties at both offices.
If you are interested in volunteering, please contact Linda at [email protected] or 760-448-8416.
nationalmssociety.org | 1-800-344-4867 13lIvING wIth MS
ReSouRceS foR couPleS lIvING wIth MSHaving a successful relationship is hard work even in the best of times. Living with multiple sclerosis can make it even more challenging. Couples dealing with MS often find it difficult to balance the many aspects of life with the unpredictability of the disease. Here are some opportunities that might benefit you and your relationship:
Relationship Matters is a professionally-led group that is designed to strengthen your relationship and minimize the impact that MS has on your life together. This 6-week series starting April 1st in both Orange and San Diego Counties is a great opportunity to improve communication and problem solving skills, have greater fulfillment in your relationship, manage MS as a team, and help your relationship thrive. Space is limited so call soon!
Individual or couples therapy is also a way for couples to focus on staying connected with one another. The chapter’s counseling program may allow you up to ten sessions of counseling if it is not provided by your insurance provider.
Self-help groups are a great opportunity for individuals to find reassurance and support from others with similar life experiences. Groups for care partners are also available. Please check the list of self-help groups in this newsletter to find a group in your area.
If you’re looking for support online, visit MSconnection.org for additional resources. It’s a new website designed to connect people living with MS through their interests, questions, and life experiences. There are blogs, online discussions, and other great connection opportunities right at your fingertips!
leaRN MoRe For more information or to sign up for the
Relationship Matters program, please contact Aarushi at [email protected] or 714-689-9613.
14 MS coNNectIoN: SPRING 2014
fuNDING the MISSIoN
thIRtY-oNe YeaRS of BIke MS
The Bike MS Bay to Bay Tour celebrated its 31st year this past October, with 1,900 cyclists of all levels raising $2.2 million. The cyclists enjoyed a 15, 25, 100 or 150-mile ride down the
picturesque coastlines of Orange and San Diego Counties. We are especially proud and would like to take the time to recognize our corporate partnerships, top fundraisers and top teams.
PReSeNtING SPoNSoRS
toP teaMS Mission Possible Award Level ($100,000+) Howard’s Team - $172,681.44 Team Disney - $118,426.87 Team Basso - $101,813.50
Diamond Award Level ($50,000 - $99,999) Team Wescom - $88,538 Still Kicking For Gordo - $70,280 Power Peddlers - $65,799.01 Team Intuit - $58,727.25 KPMG ALL STARS - $56,470.98 HD Supply - $54,063 Team Hansen’s - $51,779 MOST: Team Top of the Hill - $50,506
Gold Award Level ($25,000-$49,999) Annie’s Gang - $42,530 Team SHOEBACCA - $39,195 OutSpokin’ for a Cure - $36,230 Team Crash - $35,782.25 Pratt & Whitney Power Spinners - $30,160.26 24 Hour Fitness - $29,553.66 Bill’s Biker Backers - $27,322 Team Tiki Ha Ha - $26,432.39 Mitsubishi Motors - $25,435.95
Silver Award Level ($15,000-$24,999) Team Beckman Coulter - $24,862.16 Love 4 Lisa - $22,790 Team SeriousCycling - $20,347 JANUS et Cie Velo - $20,048.02 Team Davey - $19,669 SchoolsFirst FCU - $18,865.42 A RAD Racing Team - $18,281.04 Terry’s Team - $18,008.02 KTLA - $16,715 teaMSeaside - $16,190 Good Carma - $16,164 Wells Fargo - $15,703 Team LAPD and Friends - $15,098
est.1935
PlatINuM SPoNSoR
DIaMoND SPoNSoRS
15NatIoNalMSSocIetY.oRG | 1-800-344-4867
ReGISteR to RIDe oR voluNteeR toDaY!
Bike MS Bay to Bay Tour registration is open! Join us October 18 & 19 for 25, 100, or 150 miles over 1 or 2 days. Learn more at biketofinishMS.com.
$10,000+ toP fuNDRaISeRS Al Basso - $50,426.50 Douglas Peterson - $34,100 John G. Most - $32,456 Paul Dechary - $24,075 Rona Kay - $23,000 Wayne Hickey - $20,100 Glenn Arnold - $20,050 Kenneth Tudhope - $17,875 Joshua Lesser - $14,727 Jack Babbitt - $13,205 Ken McKinley - $11,820 Jay McCabe - $11,300 Bryon Barnes - $11,275 Christopher Steiger - $11,155 Arthur Rosten - $11,142 Dan Fischer - $10,875 Jeff Walsworth - $10,700 Bob Moore - $10,303 Jamie Sutherland - $10,250 Monique Lafleur - $10,223 Mark Neilson - $10,180 Tim Salmon - $10,040 James Heaton - $10,035 Alexi Varanko - $10,000
Meet DavID, BIke MS voluNteeR of the YeaR David is a dedicated member of the Bike MS Planning Committee, and helps out at other events to help promote the Tour. He shares that he volunteers for two reasons: because it makes an important impact to those living with the disease and because it’s a way to honor his friend who lives with a progressive form of MS.
David tells us one of his favorite memories was after he finished the ride and went to get his medal. If you’ve never been to the event, we invite our MS Champions to hand out medals to our participants, so they can see who they are helping directly. On this day, Madeline thanked David as he picked up his medal. He said it was a moment that meant a lot to him and one he’ll never forget.
16 MS coNNectIoN: SPRING 2014
ReSeaRch
the PRoMISe of MYelIN RePaIRBY BRUCE BEBO, PHD
When I started as a laboratory immunologist more than 20 years ago, the major focus in MS research was searching for ways to turn off destructive immune attacks, which resulted in immune-based therapies that can help control relapsing forms of the disease for many people.
While researchers continue to look for ways to improve the treatment of relapsing MS, the focus in MS research is shifting to finding strategies that stop MS progression and repair the damage that causes disability. This is relevant to people with all types of MS, but especially to people with progressive forms of the disease.
DReaM to RealItYPeople are excited by the possibility, once only a dream, that we will find a way to repair damaged myelin. This would be important for restoring function, and many believe that re-establishing the protective myelin coating on axons may even shield them from further harm. Bruce Trapp, PhD, and his team at Cleveland Clinic have been working hard to advance the field of nervous system repair. They have
shown that new MS lesions undergo natural repair much better than older (“chronic”) ones. They also reported that the problem is not a lack of cells capable of making new myelin in old lesions, but their inability to produce new myelin. Work is now underway to figure out what the impediment is and how to jump-start the repair process. What makes this work on MS lesions intriguing is that it straddles two different parts of the brain – the so-called white matter and gray matter. The team found that chronic lesions in the white matter don’t remyelinate. But chronic lesions in the gray matter show robust remyelination – even in people living with MS into their 70s. This opens up opportunities to compare differences in the two regions and figure out how to make white matter repair itself like gray matter.
In related research, Larry Sherman, PhD, and colleagues at the Oregon Health & Science University found that fragments of a molecule
17NatIoNalMSSocIetY.oRG | 1-800-344-4867
called hyaluronic acid (HA for short) accumulate in chronic white matter lesions and could be at least partially responsible for the stalled remyelination. They have identified an enzyme that chews the HA into fragments and have shown that inhibitors of this enzyme promote remyelination. They are now trying to figure out exactly how this works, in hopes of developing treatments that promote remyelination.
MoRe PoSSIBIlItIeSIncreasing evidence suggests that female sex hormones might be neuroprotective and/or promote repair of myelin. I saw two very interesting presentations last October at ECTRIMS, the world’s largest gathering of researchers, which reported that different estrogen-like molecules could stimulate production of new myelin. Both of these projects are supported by the Society. Another strategy to repair myelin in MS is to introduce new repair cells into the system via transplantation. Of note was a presentation by investigators from Milan, Italy, who used mouse skin stem cells and forced them to become myelin-making cells. After these cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE. The team found that these cells didn’t actually make myelin themselves, and are starting to identify the growth factors they release that stimulate natural repair and also reduce inflammation. More work is needed, but
this type of research gives hope that this strategy may eventually help restore lost function.
Updates on two repair therapies already being tested in human clinical trials were also presented. The first is called anti-LINGO. LINGO is seen in neurons and myelin-producing oligodendrocytes, and blockading this protein with anti-LINGO has been shown to promote remyelination in animal models. An investigative team from Biogen Idec reported that anti-LINGO was well tolerated in people and that no negative effects were seen. This means the company will likely keep pursuing clinical development of this promising repair candidate. In other news, investigators from the Mayo Clinic are developing an agent called rHIgM22 that has been shown to promote extensive remyelination in several different animal models of MS. This agent is now in early clinical trial testing in MS. We’re not there yet, but recent and ongoing research holds the promise of uncovering new targets for stopping progression and stimulating repair.
Bruce Bebo, PhD, is the associate vice president of Discovery Research at the National MS Society.
Originally published at MSconnection.org/blog.
18 MS coNNectIoN: SPRING 2014
lIvING wIth MS
MakING faMIlY coNNectIoNS
Multiple sclerosis affects the entire family. The Society is committed to serving as a resource for families to connect with other families who are also facing the challenges of living with MS.
Connection events like our Sycuan Family Holiday Party is one of the various ways families connect in our community. On December 14, 2013 families impacted by MS from across the chapter joined together to meet up with old friends and make new ones. This festive chapter tradition, graciously sponsored by Sycuan Band of the Kumeyaay Nation, hosted almost 800 people and featured a full buffet lunch. Lively entertainment set the holiday mood and a special visitor from the North Pole took time from his busy schedule to meet, greet and share gifts with the children in attendance.
Special thanks to Sycuan, Dr. Seuss Foundation, Ace Parking, Mitchell 1, Boy Scout Troop 45, Raphael’s Party Rentals, Geni Cavitt, John Butcher, Mitch Murphy Photography, and Music Machine of Bonita Vista High School
fRoM a MeMBeR... “It was so nice to have this party to look forward to! Living with MS is hard and can be devastating on a daily basis but when you can see and feel like people care about you and go through the efforts of putting on such a large event for you and your family to enjoy. It makes your heart smile and your worries disappear. It means so much to me to see and meet people who go through similar struggles and who can actually relate is a huge benefit.”
Looking for ways for your family to connect? Here are some upcoming opportunities:
• April 5: Walk MS Irvine
• April 26: Walk MS San Diego
• April 27: Walk MS Carlsbad
• May 10: Day at the Bay
Learn more at MSpacific.org for upcoming programs and events.
19NatIoNalMSSocIetY.oRG | 1-800-344-4867
challeNGe walk MS
Meet BRIaNMeet Sole Survivor Brian Grey, joining the event all the way from Northern California!
A childhood friend asked Brian to join the inaugural Challenge Walk MS event
in San Francisco in 2000. Brian signed up and hasn’t turned back since.
We asked Brian what keeps him coming back to make his mark on MS each year. “It is the shared commitment with the other participants and new friends. I walk with a group that came together in the first years of the Challenge in San Francisco. We have joined together in our shared mission and have taken our ‘show’ on the road to Southern California. I am honored to walk with my sisters and brothers of the Nor Cal Street Walkers.”
Brian has been a huge part in the success of Challenge Walk MS Southern California by raising $150,000 and creating awareness to help cure this disease. With Brian’s help and continued commitment to those affected by MS, Challenge Walk MS Southern California has raised over $10,000,000. Brian has achieved Elite Feet and Mission Possible Club status for raising over $10,000 multiple years.
Brian shares, “the Challenge Walk experience has certainly been a very important one to me. The people I’ve met over the years have become as close as family.”
JoIN the challeNGe walk MS faMIlY IN 2014!
In its 13th year, Challenge Walk MS Southern California will be held September 5-7, 2014. It is a 3-day, 50-
mile experience that tests your strength and your spirit, and makes an extraordinary difference in the lives of
people living with MS. Participate by walking, crewing, or volunteering. Learn more at myMSchallenge.com or
by calling 800-486-6762.
Brian, on the left, at Challenge Walk MS with a fellow participant
20 MS coNNectIoN: SPRING 2014
aDvocacY
the PolItIcal PoweR of YouR PeRSoNalItY We need your help as we embark on a busy political season. There is no shortage of issues MS Activists are seeking to address from timely access to affordable and comprehensive care to the cost of prescription drugs to greater home and community based long term care services. We have the data and facts we need to make effective presentations to key decision makers; however, we need to personalize our approach.
Our job as MS Activists is not simply to relay facts and figures about the disease, but rather, to make MS and its effects real for the legislator or policy maker. That goal can be achieved by telling a personal story. Legislators can and will get all the facts, figures, and statistics from briefing documents but compelling personal stories have the ability to grab and hold the policy maker’s attention, creating an emotional connection. Statistics will help legislators understand the substance of an issue, but the stories about how particular policies affect people living with MS are tangible, meaningful and are the heart of our mission.
With your consent, we can re-tell your story as part of crucial testimony to support during key legislative hearings in Sacramento. As a constituent, you can also send them to your members of congress and/or the state legislators who represent you depending on the particular
issue. We also reach out to media outlets to help amplify our positions on compelling issues facing the MS Community at large. Your stories will help us help you!
Send Us Your Story Do you have an issue you need resolved? You are the face of MS and we need your stories to make the unmet needs of people living with MS “real” to elected officials. We are particularly looking for stories related to:
1. Any difficulties enrolling in the Affordable Care Act (“Obamacare”).
2. If you have Medicare and are having problems accessing specialized durable medical equipment such as customized wheelchairs and scooters.
3. Affording or accessing your MS therapies.
4. If you are on Medi-Cal and are having difficulty locating a neurologist or primary care physician.
5. A lack of public information on the price of healthcare services, the paperwork required to attain care, and insufficient notification of benefit changes.
6. Difficulty gaining access to the medical providers you require to address your varying needs.
take actIoN Please send your personal story, in a few paragraphs to Aarushi at [email protected].
NatIoNalMSSocIetY.oRG | 1-800-344-4867 21
Join Honorary Invitational Chair, President & CEO of the San Diego Regional Chamber of Commerce, Jerry Sanders for the 20th Annual MS Golf Invitational sponsored by Torrey Pines Bank at the exclusive La Jolla Country Club on Monday, May 5, 2014. As longtime board member of the National MS Society, Jerry is dedicated to the mission of creating a world free of MS. Jerry has always been committed to the citizens of San Diego and keeping philanthropy the center of focus in our community. Join him and many more for an exciting afternoon on the course supporting our mission.
For more information or to register for the event please visit golfMS.org or call 760-448-8434.
fuNDING the MISSIoN
Golf “foRe” MS
SPONSORED BY
An Oral Treatment Optionfor Relapsing Forms ofMultiple Sclerosis (MS)
An informative event for peopleliving with MS and their caregivers.
Space is limited. A light meal will be served.
To RSVP, please call 1-866-703-6293or e-mail [email protected]. Event code: TR242181 (1117520) MS.US.PO1497.0313
Speaker: Staley Brod MD Thursday, March 20, 2014 at 6:30 PM Central
Fogo de Chão 668 6th Avenue San Diego, CA 92101
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You’re invited to join us at aNovartis MS Education Link Event
Hear a medical specialist share information aboutmultiple sclerosis (MS), learn about a prescription treatment option,
and connect with people in your community living with MS.
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Tell or bring a friend! Accessible to people with disabilities.
Light meal served. Parking will be validated.
Novartis Pharmaceuticals CorporationEast Hanover, New Jersey 07936-1080 © 2013 Novartis 1/13 T-XMG-1234311
Jay Rosenberg, MD
4/1/14 at 12:00PM 4/7/14 at 12;00PM
El Torito The Old Spaghetti Factory
2020 E Ball Road 111 N Twin Oaks Valley Road
Anaheim, CA 92806 San Marcos, CA 92069
Benjamin Frishberg, MD
4/17/14 at 5:00PM 5/13/14 at 6:00PM
Nonno's Ristorante Tio Leo's Mexican Restaurant
40711 Murrieta Hot Springs Road 3510 Valley Centre Drive
Murrieta, CA 92562 Del Mar, CA 92130
PAID ADVERTISEMENTPregnant and have Multiple Sclerosis?
MotherToBaby counselors provide up-to-date, evidence-based information for no charge about:• Prescriptionandover-the-countermedications.• Infectionsanddiseases,likeMS,andmore...
HelpushelpyoulearnevenmoreaboutMSduringpregnancy.TheAutoimmuneDiseasesinPregnancyResearchStudyneedspregnantvolunteerstodaytohelpprovideanswersfortomorrow.TogetyourquestionsansweredaboutMSmedicationsduringpregnancy or to learn about volunteering for an observational study, call toll-FREE (877) 311-8972 or visit PregnancyStudies.org.
MotherToBaby Pregnancy Studies are conducted by the Organization of Teratology Information Specialists (OTIS).OTISandMotherToBabyaresuggestedresourcesbymanyagenciesincludingtheCentersforDiseaseControlandPrevention(CDC).
Find us on:@MotherToBaby
A few questions you may have...Will MS affect my developing baby?Is my MS medication o.k. to take during pregnancy or while breastfeeding?
You’reinvited!
©2013 Questcor Pharmaceuticals, Inc. PM-863-00 02/13
Remember: You and a guest are welcome at this FREE educational session.All MS relapse therapy decisions should be made under the guidance of your healthcare professional.
Visit www.msrelapseprogram.comor call 1-877-219-0410
to learn about a local live program near you. Complimentary meal and parking will be provided.
If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friendare invited to this FREE educational session where MS healthcare professionals will discuss:
Know Your Options: Exploring an FDA-approved treatment for MS relapses
• The difference between MS relapses and pseudo-relapses
• The importance of treating your MS relapses
• How to talk about your MS relapses with your healthcare provider
• Available treatment options for MS relapses
• Insights shared by others living with MS
NON-PROFITORGANIZATION
U.S. POSTAGEPAID
San Diego, CAPermit # 451
12121 Scripps Summit Drive, Suite 190San Diego, CA 92131
MaRk YouR
caleNDaRSMarch 3-9: MS Awareness Week 15: UCSD MS Symposium 20: Boys’ Night Out
April 5: Walk MS Irvine 26: Walk MS San Diego 27: Walk MS Carlsbad
May 5: Golf MS Invitational 10: Day at the Bay 17: Moving Forward: Program for the Newly Diagnosed 21: UCI Research in MS Lunch & Learn
claSSIfIeDA quality and affordable independent living residence, offering a shared supportive housing solution for people living with MS. Home is located in the heart of downtown La Mesa, close to shopping, dining, community swimming pool, parks and trolley. Shared and private rooms available. For information, please call 619-729-6462 or [email protected].