Spring 2013 Pacific South Coast Chapter
MS Connection Newsletter
MS Awareness Week is March 11-17 Learn about the ways to SPREAD AWARENESS AT WALK MS on Page 12
INSIDE 03 THIS ISSUE
an amazing gift to the chapter
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11
17
progress on ms therapies
victory in medicare settlement
welcome to our new board chair
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MS connection: Spring 2013
JOIN THE MOVEMENT
MS kills connection. connection kills ms. Anytime is a good time to help create awareness about multiple sclerosis, and we’re kicking off our efforts during MS Awareness Week from March 11-17. Do you know some of the ways you can get involved and get connected?
MS Awareness Week is March 11-17. What’s your connection? MSconnection.org
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific On the Cover: Top left: Karen Cooper, Ryan Lindley and another Water Walker enjoy the annual Water Walk. Top right: Jackie and Tim Oates. Bottom left: Dr. Liz Spier from Kaiser Permanente and Dr. Jody Corey-Bloom from UC San Diego. Bottom right: Erum Ahmed (2nd from left) and Team Hot Steppers.
Connect with MS activists on the frontline by signing up for federal updates and action alerts at http://ntl.ms/MSactivists. Learn more about our advocacy efforts on page 15. Walk MS connects people living with MS and those who care about them. When you participate in this community event, the funds you raise give hope to the more than 2.1 million people living with MS worldwide. See the different ways to get involved on pages 12 and 13. Be a part of our online community and get connected with people just like you! By connecting all of our knowledge, hope, and experience, we can gain new understanding of how to move forward. Share why you connect at MSconnection.org today. With so many ways to get involved, won’t you commit to taking at least one action toward helping us spread MS awareness? With your help we can continue to work towards creating a world free of multiple sclerosis! Most sincerely,
Rich Israel, Chapter President
Rich at Challenge Walk MS
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nationalmssociety.org | 1-800-344-4867
PLANNED GIVING
THE GIFT OF A HOME This past year, the chapter received an extraordinary gift from an amazing couple and long-time supporters of our organization, Bud and Cheryl Pry. Because she lived with MS, Cheryl and her husband Bud were frequent attendees to chapter events like Day at the Bay and the Annual Holiday Party. They also committed their time volunteering and fundraising for the Society. However, they didn’t stop there…
Rich Israel presents a thank you to Dennis and Janet Dix at the chapter’s Annual Meeting. Dennis is Cheryl’s brother and was the executor of the estate.
To learn about the many ways you can give to the Society, contact Angela at (760) 448-8434 or angela.northrup@nmss.org.
National Multiple Sclerosis Society Pacific 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 Christofferson © 2013 National Multiple Sclerosis Society, Pacific South Coast Chapter
Cheryl and Bud were so committed to seeing our mission grow that they included the chapter in their estate plans and donated their own home! After Bud and Cheryl’s passing, the Society worked alongside the estate executor and attorney and when the house sold, the chapter received $360,000. What an incredible and unforgettable gift! The Society is beyond grateful for such wonderful individuals so committed to creating a world free of MS. n 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.
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MS connection: Spring 2013
research
Progress on ms therapies by Megan Weigel, CNP, ARNP-C, MSCN
In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brand name Aubagio®) by the FDA in October, 2012, we now have nine diseasemodifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/ emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments. Research on potential treatments for progressive forms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments. Here are the therapies to keep an eye on as we move forward into 2013: BG-12 is an oral fumarate that has been used in Europe for over a decade to treat psoriasis. Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord.
Two large phase III studies (the DEFINE trial and the CONFIRM trial, respectively) found that BG-12 significantly reduced relapses and disease activity as detected by MRI. The most common side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year. Alemtuzumab, a monoclonal antibody that depletes circulating immune (T and B) cells thought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later. Genzyme applied to the FDA for approval of alemtuzumab to treat relapsing MS, based on positive results from several clinical trials, including one that showed a 55% decrease in relapses compared to interferon beta 1a (Rebif ); however, the FDA asked the company to resubmit its application, so a timeline has not yet been established. While this therapy is
nationalmssociety.org | 1-800-344-4867
powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ITP, a bleeding disorder), and autoimmune thyroid disorders. Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentrated liquid formulation of daclizumab is under study in relapsing-remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced disease activity on MRI scans in a study of 218 people with relapsingremitting MS. One person died due to brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety and benefits. Clinical trials of treatments for progressive forms of MS are currently underway: these include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.
Making choices When we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming convenience and perhaps superior efficacy of
05 newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimod on the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios. Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations. However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible. To follow progress on potential MS therapies, sign up for MS eNEWS at nationalMSsociety.org/signup, or visit nationalMSsociety.org/research. n Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.
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MS connection: Spring 2013
a personal challenge
Connect at challenge walk MS: a community of spirit & strength Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS forever. Challenge Walk MS is a personal challenge of spirit and strength that brings people together who commit to making a difference in the lives of people living with MS. We encourage you to be part of the most rewarding journey you’ll ever make. During this all-inclusive weekend, we will walk together for three days and 50 miles alongside a beautiful coastline route to continue our mission and to further pursue a cure for multiple sclerosis. Register now and start fundraising today by calling 800-486-6762 or visiting myMSchallenge.com. Be there. Because every connection you make and every dollar you raise supports the mission to create a world free of MS. n
“There are a number of reasons why I participate in Challenge Walk MS, but the most important is because I can! There are thousands of people who are not able to, and who have the same disease I was diagnosed with back in 2009. I have MS, MS does not have me, and I intend to continue walking every year. I walk to raise awareness. I walk to raise funds so researchers can find a cure! I walk so that assistance will be there for those who need it. There is no road map to show how this disease progresses, as each case is unique. I walk so that one day we won’t need a key for this map.” Keith Baker First Year Walker, Lifetime Member
to register for or get more information about any of the events listed, as well as learn about additional events, visit http://calendar.MSpacific.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”
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Mark your calendar
local events Teleconference: Important Decisions about Employment & Benefits When Living with MS Thursday, April 4, 2013 6:30-7:30pm Teleconference Unravel the myths and misconceptions about employment and benefits in this important presentation. Learn more about the facts and reality, to the world of opportunity for individuals and workers with disabilities.
Scripps Spring Lecture Series 6:30-8:30pm San Diego Join neurologist Charles Smith, MD and the National MS Society’s Pacific South Coast Chapter for a free series of seminars that will offer valuable information to people who want to better manage their MS symptoms and improve their quality of life. • Thursday, April 11: Rehabilitation in Multiple Sclerosis: How Can it Help My MS? • Thursday, May 9: Complementary & Alternative Treatments in MS: Is There a Role in My Multiple Sclerosis Treatment Plan? • Thursday, June 13: New Disease Modifying Therapies for MS: Where Do I Go From Here?
SAVE THE DATE! ANNUAL Day at the Bay Saturday, May 11 Mission Bay, San Diego Join other families affected by MS for a day of fun in the sun. Enjoy adaptive sailing on the bay and a festive luau. More information will be coming soon!
Moving Forward: A Seminar for the Newly Diagnosed Saturday, May 18 8:30am-12:30pm Costa Mesa Moving Forward is an educational seminar offered at no cost for individuals who have been diagnosed with MS within the past three years, and their family members. You will learn about the emotional aspects of MS and maintaining physical wellness, with the opportunity to listen to Dr. Jack Florin speak about understanding MS.
08 SELF-HELP GROUPS ORANGE COUNTY
Anaheim: En Español Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30 - 8pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana Pérez 714-235-7570 sueperezg@yahoo.com Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday 1:30 - 3:30pm Sherri Brash 714-846-2064 SherriB@socal.rr.com Santa Ana: Man to Man 1st & 3rd Wednesday 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@gmail.net Dana Point: Minimal Symptoms/Newly Diagnosed 4th Thursday, 10am - 12pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com Fullerton: Christian MS Support Group 2nd Tuesday, 7:00pm - 8:30pm Sara Minton irvinedrama@yahoo.com Huntington Beach: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 10am - 12pm Jeanne Archibald 714-842-7198 novajeanne2@yahoo.com Priscilla Wolz 714-846-6526
If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader. Huntington Beach: Working with MS 1st Tuesday, 6:30 - 8:30pm Laurie Cable 714-969-8298 lderble@aol.com Karen Patterson 714-377-4006 Irvine: Walkers & Rollers 2nd & 4th Wednesday 10am - 12pm Jack Santos 949-786-3421 jackandlinda1948@gmail.net Irvine: Girl Talk Contact Tabitha for date & time Tabitha Evans 714-669-5618 tab.evans@cox.net Maggie Finn 949-748-7591 magfinn@gmail.com Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Karen Harlas 949-498-9583 Lake Forest: MS with Christ 3rd Monday, 6:30 - 8pm Bill Bisch 949-218-5020 Cathy Varela 949-842-2296 Midway City 1st & 3rd Tuesdays 10am - 12pm Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-963-8624 carolyncassell7@yahoo.com Mission Viejo: Minimal Symptoms/Newly Diagnosed 2nd Wednesday, 6:30 - 8pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com
Newport Beach 3rd Sunday, 2 - 4pm Harriet Pavidis 714-839-5529 ppavidis@socal.rr.com Stanton/Los Alamitos 1st (Stanton) & 3rd (Los Alamitos) Tuesday 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10am - 12pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-990-2933 robert.retired@hotmail.com Yorba Linda 1st Friday of the month, 10am - 12pm Denise Kish 909-519-4410 dennydiego5@yahoo.com Jim Langdon 714-392-2052 jameslangdon@att.net
SAN DIEGO
Carlsbad: Newly Diagnosed 1st & 3rd Saturday, 12 - 1pm carlsbadselfhelpms@gmail.com 760-448-8403 Chula Vista: En Español Llame para más información. Fernando Palomino 619-691-7964 Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Susan Lipp 619-426-0930 sjlipp@yahoo.com Bonnie Kuhn 619-737-9262
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nationalmssociety.org | 1-800-344-4867 Encinitas San Diego County Credit Union Community Room 501 North El Camino Real 1st Thursday, 6 - 7:30pm Melinda Brizendine 760-944-4549 melindabrizendine@gmail.com
San Diego: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st & 3rd Wednesday, 11am 12:30pm David Ries 619-997-3483 dkries@gmail.com
Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Beth Bradsher 760-747-9096 sbbrad@cox.net Michele Easterling 760-805-6390 m.easterling68@gmail.com
San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Denise Kish 909-519-4410 dennydiego5@yahoo.com
Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Escondido 1675 Seven Oakes Rd. Room 4 Jim Johnston 760-746-4279 hopekeeperjim@gmail.com
San Diego: Mens Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 6:30pm Bill Homer 858-571-1867 wchomer@gmail.com
Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net
San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2 - 4pm Stephanie Russell 619-224-6156 garyptloma@cox.net
Poway Weingart Center 13094 Civic Centre Drive 1st Tuesday, 6:30pm Peggy Green 858-748-4009 pegjean@cox.net
Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Debbie Centeno 619-460-4123 dcentdeb@yahoo.com
Ramona 2nd Tuesday, 11am - 12pm Van Reeder 760-789-9129
professionally-led support groups in Orange & San Diego Counties Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 714-689-9602 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT National MS Society Costa Mesa Office 3000-C Airway Avenue, Suite 125 Costa Mesa, CA 92626 (714) 689-9602 Caregiver Support Group 3rd Thursday of Every Month 6:30-8:00pm Facilitator: Seraphina Galante, MSW, Family Consultant Southern Caregiver Resource Center 3675 Ruffin Road, Suite 230 San Diego, CA 92123 (858) 268-4432, ext. 112
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MS connection: WINTER 2012
HEALTH & WELLNESS CLASSES yoga & Pilates Aquatics Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 10:45 - 11:45am Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1 - 2pm Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:45-10:45am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session
Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tuesdays & Thursdays 11:45am - 12:45pm Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Tuesdays & Thursdays 12 - 1pm El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mondays, Wednesdays & Fridays 11:30am - 12:30pm Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tuesdays & Thursdays 10:30 - 11:30am No lift available at this time.
Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30 - 11:30am
Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mondays, Wednesdays & Fridays 9 - 10am $6 per session La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Tuesdays, 5:30pm Thursdays, 12:00pm Saturdays, 11:30am Fee-based class. Call 858-483-2711 for more information. San Diego: Outdoor Aquatics Peninsula Family YMCA 4390 Valeta Street Monday-Friday, 11am - 12pm $5 per session San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mondays, 12pm Thursdays, 5pm Mandy Johnston 858-457-8419 $10 per class
Balance & strength Training
La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm
in your neighborhood
To attend any of the listed classes, a waiver is required. Please contact 800-344-4867 to request a waiver today.
San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Tuesdays, 10am Diana Dean-Naú 760-809-9176 $5 per class
nationalmssociety.org | 1-800-344-4867
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Advocacy
Victory in Medicare Settlement By marcella durand
A settlement to end Medicare’s so-called “Improvement Standard,” which denied coverage of certain treatment services to people with multiple sclerosis and other diseases, was officially approved January 24th by Chief Judge Christina Reiss of the U.S. District Court in Vermont. The settlement to end the standard was reached in a nationwide lawsuit in which the National MS Society was a plaintiff. The Society had joined other organizations including the Parkinson’s Action Network, the Alzheimer’s Association, United Cerebral Palsy and Paralyzed Veterans of America in a class-action suit to challenge the Centers for Medicare and Medicaid Services (CMS) over the standard. The standard had denied Medicare coverage for services such as skilled nursing facilities, home health and outpatient therapy benefits like physical or occupational therapy to Medicare beneficiaries living with MS if they did not show improvement. However, these oftenexpensive services can be critical to prevent decline or maximize independence.
MS activists make change happen
The settlement’s approval effectively means that any denial citing the “improvement standard” can be appealed moving forward and even dating back to Jan 18, 2011 (the date the case was filed). CMS is now tasked with revising its Medicare Benefit Policy Manual and other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled services in home health, nursing home and outpatient settings. CMS must also develop and implement a nationwide education campaign to ensure beneficiaries with chronic conditions are not denied coverage for critical services. For more information, visit MSActivist.org. n Marcella Durand is the content planning and development manager for the Society.
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MS connection: SPRING 2013
A COMMUNITY COMING TOGETHER
The Many Faces of walk MS
Being a part of Walk MS isn’t only about walking. Learn about people who are making the walk their own.
Sixteen years ago, an aquatic therapy instructor had the idea to host a walk in the pool, allowing those who could not participate in Walk MS on land to do so in the water. Thus, Water Walk was born! Karen Cooper (pictured with former SDSU and current Arizona Cardinals quarterback, Ryan Lindley), a woman living with MS since 1984, was there from the beginning and helped to keep the event going through the years. She shares, “I feel good to be a part of Team Water Walkers and see so many people having a positive attitude, having a good time, and working toward beating this disease. It is a very fun and rewarding experience.” Anyone can join the Water Walkers on April 5 at Waterworks Aquatics in Irvine, or April 19 at The Wave House Athletic Club in Mission Beach. Jackie and Tim Oates are extraordinary volunteers who support Walk MS at all three sites! Jackie’s mother, Patricia Luther, lived with MS for over three decades, and was a long-time member of the chapter and the Brea & Yorba Linda support group. Jackie first got involved by joining the caregiver support group in 2007 and her involvement, as well as her husband’s, grew from there. They help by leading groups of volunteers as Captains, and Tim even sang the National Anthem the past two years! There’s nothing they won’t do to help create a world free of MS.
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nationalmssociety.org | 1-800-344-4867
When local neurologists and health care providers were asked to join a unique challenge at the Walk, they stepped up for people with MS! What began only a few years ago with 6 teams and 200 people raising $27,000 has grown to 10 teams recruiting over 400 people and raising over $50,000! Care providers from all over Orange and San Diego county participate, including Dr. Jody Corey-Bloom at UC San Diego (pictured 2nd on the right with Dr. Liz Spier), who has served people living with MS for more than 15 years. This year, the 4th Annual Physician’s Challenge will bring on more of the friendly competition. Do you want to walk with your care provider? Get them to start a team today! Team Captain Erum Ahmed (pictured 2nd from left) was unable to join her friends and family, Team Hot Steppers, at Walk MS 2012 when she had a sudden MS flare-up that landed her in the hospital for 5 days. With some ingenuity and technology, Erum, who was diagnosed in 2006, was able to attend the event as a virtual walker; her team streamed their walk through UC Irvine live to her computer! They also allowed the chapter to share the link with our Facebook fans, so they could be a part of the walk too!
Join us at one of our three amazing locations, in the water, or virtually; donate; or volunteer! Learn more at MSwalk.com. April 6: University of California, Irvine April 21: LEGOLANDÂŽ California Resort, Carlsbad April 27: NTC Park at Liberty Station, San Diego
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MS connection: Spring 2013
FUNDING THE MISSION
30 Years of BIKE MS The Bike MS Bay to Bay Tour celebrated its 30th year this past October, with 2,300 cyclists of all levels raising over $2.1 million. The cyclists enjoyed a 15, 30, 100 or 150-mile ride down the picturesque coastlines of Orange and San Diego counties. We are especially proud of our corporate partnerships, top fundraisers, and top teams, recognized here. Join us October 19 & 20 for the 2013 ride. Visit biketofinishMS.com to register and learn more! n
Special Thanks to These Sponsors Presenting Sponsors
est.1935
Diamond Sponsors
150 Club Top Fundraisers 1. Al Basso - $49,147 2. Doug Peterson - $31,543 3. John & Jodi Most - $29,247 4. Franklyn Gottbetter - $26,573 5. Paul Dechary - $25,218 6. Rona Kay - $22,205 7. Jack Babbitt - $12,100 8. Tim Salmon - $11,225 9. Daniel Abrams - $10, 895 10. David Lee - $10,820 11. Glenn Arnold - $10,312 12. Jim Heaton - $10,270 13. Kenneth Tudhope - $10,219 14. Dan Fischer - $10,200 15. Bob Moore - $10,140 16. Douglas Loreman - $10,091 17. Jay McCabe - $10,066 18. Mark Neilson - $10,050 19. Bryon Barnes - $10,025 20. Steve Malloy - $10,003 21. Tim Dolan - $9,650 22. Matthew Fein - $9,268 23. Benjamina Bambauer - $9,050 24. Mark Malbon - $8,895 25. Bob Ott - $8,340 26. Keith Sherwood - $8,054 27. Michael Verachtert - $7,900 28. Greg Ferree - $7,878 29. Sheila Aresh - $7,825 30. Mark Whittemore - $7,750 31. Tim Bockhold - $7,500 32. Peter Goemans - $7,385 33. Kimberly Roush - $7,225 34. Kirk Evans - $7,115 35. Roland Hoffman - $7,011 36. David Brooks - $6,871 37. Steven Seibert - $6,805 38. Wesley Fleming - $6,655 39. Debbi Kemp - $6,634 40. Ken McKinley - $6,500 41. Victoria Roberts - $6,417 42. Mary Storm - $6,341
43. Peter Albini - $6,240 44. Kevin Gaffney - $5,972 45. Hugh Neuharth - $5,780 46. Roger Waterman - $5,685 47. David Hopkins - $5,458 48. Phil Ohme - $5,420 49. Jeff Smith - $5,390 50. Jay Carr - $5,360 51. Leonard & Stephanie Wong $5,300 52. David Wright - $5,150 53. Vance McNeilly - $5,110 54. Mark Mahoney - $5,105 55. Richard Pesavento - $5,071 56. John Hampton - $4,750 57. Michael Stilwagner - $4,650 58. Joseph Monier - $4,649 59. Skypp Cabanas - $4,610 60. Kerry Fisher - $4,550 61. Robert Torres - $4,505 62. Roger Voet - $4,450 63. Christopher Paskach - $4,427 64. Che-Chyl Cortes - $4,305.98 65. Terri Gaydon - $4,305 66. Sharon Joy - $4,260 67. Jeffrey Parker - $4,245 68. Donna Beshgetoor - $4,243 69. Staci Beech - $4,230 70. Sheila Parker - $4,100 71. Donald Kolehmainen - $4,090 72. William Fischbeck - $4,040 73. Eric Dangott - $4,026 74. Susan Sevi - $4,020 75. Rick Solomon - $4,010 76. Amy Blase - $4,005 77. Gary Myers - $3,947 78. Lyle Sandlin - $3,865 79. Terry Krieger - $3,813 80. Bruce Kahn - $3,782 81. Alexi Varanko - $3,701 82. Bruce Strauss - $3,700 82. Kristin Zandbergen - $3,700
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nationalmssociety.org | 1-800-344-4867 TOP TEAMS 83. Roger Kays - $3,685 84. Joel Greiner - $3,680 85. Jim Horstman - $3,637 86. Joe Cucinotti - $3,635 87. Christopher Torres - $3,625 88. Sharon Virtue - $3,589 89. Peter Droog - $3,535 90. Arthur Rosten - $3,504 91. Chris Hillock - $3,440 92. Charles Nugent - $3,420 93. Mitch Rickard - $3,341 94. Anne Coleman - $3,325 95. Sean Callan - $3,315 96. Ken Trotman - $3,208 97. Annamaria Ferree - $3,205 98. Thomas Bloomer - $3,200 99. Julie Flaiz-Windham - $3,195 100. Mark Reden - $3,190 101. Lynn Pressey - $3,169 102. John Laino - $3,160 103. Travis Wasson - $3,100 104. Robert Fleming - $3,065 105. Steven Brown - $3,062 106. Thomas Obkircher - $3,053 107. Mike Mautner - $3,033 108. Ray Freiwirth - $3,020 109. Jerry Giovaniello - $3,000 110. Danna Kipnis - $2,985 111. Hee-Won Lim - $2,960 112. Hank Jones - $2,955 113. Andrew Stout - $2,930 114. Thomas Lilly - $2,915 115. Anthony Guiliani - $2,900 116. Scott Campbell - $2,871 117. Mike Malinick - $2,870 118. Clarence Schwab - $2,855 119. Craig Utterson - $2,850 120. Mark Firger - $2,838 121. Dave Alden - $2,835 122. Steven Noeldner - $2,825 123. Chris Lenkeit - $2,820 124. Charles Martinson - $2,802
125. John Rice - $2,800 126. Tim Zandbergen - $2,785 127. Stacie Treposkoufes - $2,780 128. Marty Kessell - $2,730 128. Anthony Naff- $2,730 129. Tony Montenegro - $2,728 130. Don Graham - $2,725 131. David Wade - $2,720 132. Bradley Pensak - $2,698 133. Sam Rubin - $2,696 134. Judy Simpson - $2,684 135. Charles Kennedy - $2,665 135. Scott Scheer - $2,665 136. Garrett Allen - $2,660 137. Gary Lynn - $2,650 138. Rhonda Angell - $2,630 139. Nicole Sweeney - $2,628 140. Daniel Moore - $2,625 141. Cynthia Tidball - $2,604 142. Bob Marmor - $2,600 143. Elizabeth Giovaniello - $2,585 144. Brian Driscoll - $2,575 144. Joel Eisenberg - $2,575 145. Melissa Friedman - $2,561 146. Kim Guse - $2,559 146. Lisa Jenkins - $2,559 147. Linda Hernandez - $2,533 148. Jim Caraccio - $2,529 149. Steve Louis - $2,500 149. Matthew Waller - $2,500 150. Ron Wilsie - $2,495
Mission Possible Award Level ($100,000+) Howard’s Team - $124,466 Team Disney - $112,310 Diamond Award Level ($50,000-$99,999) Team Basso - $95,259 Still Kicking for Gordo - $82,380 Power Peddlers - $65,856 24 Hour Fitness - $60,885 Team Intuit - $52,932 Gold Award Level ($25,000-$49,999) HD Supply Facilities Maintenance - $45,305 KPMG All Stars - $44,472 Team Crash - $40,059 OutSpokin’ For A Cure - $38,787 Team Hansen’s - $37,116 MOST: Team Top of the Hill - $36,812 Team Wescom - $36,020 NetApp - $33,177 Annie’s Gang - $31,639 Team Gottbetter GOTTARIDE! - $29,568 Team Beckman Coulter - $29,560 Terry’s Team - $27,868 HS Power Spinners - $27,587 DELOITTE - $25,122 Silver Award Level ($15,000-$24,999) Team SHOEBACCA.com - $24,738 Mitsubishi Motors - $24,458 Bill’s Biker Backers - $24,217 Saddle Soars - $24,025 KTLA - $22,438 SchoolsFirst FCU - $21,735 Team Tiki Ha Ha - $19,655 Anthem Blue Cross Rebels - $18,781 Team Trek Superstore - $18,635 Land Rover San Diego - $17,865 Health Advocate - $17,573 Team LAPD and Friends - $17,553 Clark Blue Coming Thru - $16,441 teaMSeaside - $15,723 Love 4 Lisa - $15,676 Wells Fargo - $15,508
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MS connection: SPRING 2013
SUPPORTING THE MISSION
OUR VOLUNTEERS ARE AMAZING!
Congratulations to our incredible Volunteers of the Year! We honored fantastic individuals, corporate, and community partners at the Annual Meeting this past January. Want to see your name here next year? Get involved as a volunteer today by contacting Linda at 760-448-8416 linda.ingram@nmss.org. Self-Help Group Leader of the Year: Jim Langdon Jim was diagnosed with MS at the age of 34. In 2001, he met Mike Milne, who led a Man 2 Man group. In 2004, Jim (pictured bottom center) became a co-facilitator of the Yorba Linda SelfHelp Group. He is always happy, positive and uplifting, which helps his group members feel comfortable and at home. He sees the good in any situation and is fully supportive of his friends with MS. In the words of his co-facilitator Denise Kish: “How blessed I am to volunteer with this wonderful man. My life is made better every day because he is in it.” Special Events Volunteer of the Year: Motorcycle Amateur Radio Club (MARC Special Events Volunteer of the Year: Coastal Amateur Radio Emergency Services (C.A.R.E.S.) Philanthropic Dedication Award: Boy Scouts of America, Troop 45 Bike MS Volunteer of the Year: Bruce Witt Wellness Provider of the Year: Water Works Aquatics Corporate Excellence Award: Pacific Ambulance
January 2013
Passion for the Mission Award: Charlotte Freifeld
Organizational Alliance Award: GMI Mentorship Partner of the Year: Sharon Griggs Corporate Champion of the Year: BJ’s Restaurant and Brewhouse MS Ambassador of the Year (In Memoriam): Gwen Rollins Corporate Partner of the Year: Sycuan Casino Media Partner of the Year: Sam Rubin Lifetime Commitment Award: Dr. William Hornstein & Mrs. Debbie Hornstein Chapter Star Volunteers of the Year: Linda and Rick Milson
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nationalmssociety.org | 1-800-344-4867
VOLUNTEERISM
WELCOME TO OUR NEW BOARD CHAIR! Cynthia Perazzo (pictured with her son Zachary at Walk MS) first got involved with the Society not because of a connection to MS, but because of her commitment to volunteerism, when, in 2001, she joined her company’s Walk MS team. Since then, she’s gotten to know many people and their families living with MS and it’s made the cause all the more personal. In 2007, Cynthia took her volunteerism to the next level by joining the chapter’s Board of Trustees, participating as the Chair of the Investment Committee and Board Secretary. This year, she begins her term as Board Chair, and she intends to keep her eye on the mission. Cynthia shares, “The cost of living with MS and providing programs continues to rise, regardless of what’s happening with the economy and we need to make a bigger
FUNDING THE MISSION
difference.” Cynthia knows we can accomplish this by embracing the National campaign around “MS Kills Connection. Connection Kills MS.” She declares, “We all need to be engaged and connected to each other if we’re going to be successful as an organization. We need to get re-inspired and re-engaged. And for those who are already engaged, we need them to be more engaged.”
GOLF WITH Dr. BROWN
NINETEENTH ANNUAL
Dr. Tom Brown was recently recognized as the Strategic Philanthropy Department Volunteer of the Year because of his dedication to ensuring the MS Golf Invitational is a success. As a member of La Jolla Country Club, Dr. Brown sponsors the chapter to use the course for the Invitational, in addition to hosting golf committee meetings and other small outings throughout the year. With his generosity, Dr. Brown donates auction items such as opportunities to play at the exclusive club to both our golf and auction events. Join Dr. Brown on Monday, May 6 at La Jolla Country Club and enjoy the incredible cocktail reception, gourmet dinner, and live auction after a wonderful day on the course with fellow supporters of the Society. To learn more about the MS Golf Invitational visit golfMS.org.
PAID ADVERTISEMENTS You’re
invited!
Know Your Options:
Exploring an FDA-approved treatment for MS relapses
If you’re looking to learn about different options for treating your MS relapses, you plus one caregiver or friend are invited to this FREE educational session where MS healthcare professionals will discuss:
• 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
Visit www.msrelapseprogram.com or call 1-877-219-0410 to learn about a local live program near you. Complimentary meal and parking will be provided.
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. ©2013 Questcor Pharmaceuticals, Inc. PM-863-00 02/13
Living with Relapsing MS? Attend a FREE educational program
If I Knew…
What My Health Care Team and I Should Expect from Each Other Program sponsored by
Thursday, April 11, 2013 Phil's BBQ Event Center 3750 Sports Arena Blvd. 6:15PM Registration Speaker: Daniel Bandari, MD Complimentary dinner provided
Register today! 1-877-969-1722 or
event.mslifelines.com/bos01 MS LifeLines is an educational support service for people living with MS and their families, and is sponsored by EMD Serono, Inc. and Pfizer Inc. MS LifeLines is a registered trademark of EMD Serono, Inc. or its affiliates. © 2012 EMD Serono, Inc. All rights reserved. 120625-095141
PAID ADVERTISEMENT You’re invited to join us at a Novartis MS Education Link Event Hear a medical specialist share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS.
Featured Specialist: Jay Rosenberg, MD 3/4/13 at 12:30pm
4/8/13 at 12:30pm
The Old Spaghetti Factory
Oggi's Pizza & Brewing Company
111 N. Twin Oaks Valley Road
23641 Vía Linda
San Marcos, CA 92069
Mission Viejo, CA 92691
Featured Specialist: Charles Smith, MD 4/25/13 at 6:30pm Brigantine Seafood Restaurant 13445 Poway Road Poway, CA 92064
Tell or bring a friend! Accessible to people with disabilities. Light meal served. Parking will be validated. Space is limited. Please RSVP by calling 1-866-682-7491.
Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080
© 2013 Novartis
1/13
T-XMG-123
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
mark your
calendars n n
Thursday, April 4: Important Decisions about Employment & Benefits Teleconference Saturday, April 6: Walk MS Irvine
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Thursday, April 11: Rehabilitation in MS (Scripps Lecture Series) Sunday, April 21: Walk MS Carlsbad
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Saturday, April 27: Walk MS San Diego
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Monday, May 6: MS Golf Invitational
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Thursday, May 9: Complimentary & Alternative Therapies (Scripps Lecture Series) Saturday, May 11: Day at the Bay
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Saturday, May 18: Moving Forward: Program for the Newly Diagnosed
See more events and programs at http://calendar.MSpacific.org.
GET CONNECTED
Visit MSconnection.org today to connect with other people affected by MS. Share you story. Share your connection.