FALL 2013 Pacific South Coast Chapter
MS Connection Newsletter Cycling for a cure at Bike MS Page 5
INSIDE 03 THIS ISSUE
Society scholar learns from ms
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mark your calendars for upcoming events
Rockin’ and running for mom
ms research updates
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MS connection: FALL 2013
A MESSAGE FROM the CHAPTER PRESIDENT
Different ways to give Hello! It’s hard to believe that summer is over and we’re heading into fall. We hope you enjoyed the beautiful Southern California weather and stayed cool during those heat waves! We’re looking forward to an exciting fall season, with inspiring events and exciting programs for people who care about multiple sclerosis. If you’re not able to join us at an upcoming event or program, please think about giving in a different way.
take your involvement to the next level. Join in as an event participant, volunteer, or donor!
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific
Consider playing a part in creating a world free of MS through workplace giving! You can designate a gift to the chapter by setting up automatic payroll deductions through the United Way or the Combined Federal Campaign. Talk to your payroll department to set it up and use the code #95549 for United Way or #63706 for the Combined Federal Campaign. Giving has never been easier! You can double your gift with matching funds! Many employers will match charitable contributions made by their employees. To find out if your company has a matching gift policy, visit http://tinyurl.com/MS-matching-gifts. Thanks for your continued support! Please keep reading to learn more about what we have in store for you in the coming months! Cheers,
Watch us: youtube.com/MSpacific
Rich Israel Chapter President On the Cover: Ted and Kathy Currie prepare for Bike MS by participating in the Bike MS Rally training ride! Learn more about this fun event on page 4.
nationalmssociety.org | 1-800-344-4867
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LIVING WITH MS
SOCIETY SCHOLAR LEARNS FROM MS Multiple sclerosis shouldn’t stand in the way of an education, which is why the National MS Society’s scholarship program helps qualified students with MS or who have a parent with MS achieve their dreams of going to college. In 2013, nearly $1.2 million was awarded to 679 scholars. An exceptional student selected from the Pacific South Coast region is Alexander Salazar, a high-school senior from La Mesa. At age six, he moved from Columbia to the United States with his mother. In 2009, Alexander’s mother was diagnosed with MS. Although MS has meant changes at home for Alexander, he said having a family member with MS has helped him grow. In his scholarship application, he emphasized the compassion he has for his mother and for others living with MS, the patience he must show on a daily basis and his responsibility to believe in himself and his family.
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 Roach © 2013 National Multiple Sclerosis Society, Pacific South Coast Chapter
“She sacrificed a great deal of her life in order to give me opportunities she never received. It’s the reason I have so much ambition to be successful.” Alexander will be using his Society scholarship to attend Chapman University in Orange, California this fall.
Scholarship applications will be available on October 1, with a deadline of January 15, 2014. For information, call 1-800-344-4867 or visit www.nationalMSsociety.org/scholarships. 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: FALL 2013
a personal challenge
Cycling for a cure BY KATHY CURRIE
A few years ago, I, along with my family and friends, decided to volunteer for Bike MS. My husband, Ted, and I directed riders to the finish line, and managed car and foot traffic. We were inspired by the groups of riders who crossed the finish line in the rain, covered in mud, some exhausted, young and old, and on all types of bikes. I said to him, “We can do this ride.” He said, “What? Well, ok.” I thought all we had to do was get in shape and find a tandem bike. We found a used tandem on Craigslist and gradually changed the bike’s dynamics to work for us. I love what my husband has done for me with everything; helping with the bike, the team and volunteering. And, without him, I couldn’t ride Bike MS. My MS prevents me from riding long distances, so being on a tandem has a lot more benefits for me. Plus, it’s something we do together to help in finding a cause and cure for MS. I had a bad accident last year during training and spent two weeks in the hospital with pelvic fractures, a fracture in my sacral spine area, a bruised lung and ribs, a concussion
and other injuries, and also had a MS Relapse while in the hospital. After my release, I spent five weeks in a hospital bed in our living room, but with just three weeks to train, I rode Bike MS 2012 (with a broken pelvis and spine and concussion). I did it for a cure for this disease, and I’d do it all over again. This year, Team Currie is ready for another go. In the summer our 6-8 member team meets on weekends at about 6 a.m., because the gradual heat of the day wreaks havoc on my MS. We look forward to our practice sessions every week. We enjoy riding together, then
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nationalmssociety.org | 1-800-344-4867
What are you waiting for?
having lunch and talking about how our week was, or the morning’s ride. We have bicycled in other events for different charities to help team members with their rides, but we always wear our “Team Currie Riding for MS” jerseys so that we continue to spread MS awareness. Team Currie has recently added a few more members who will be with us on this year’s journey for Bike MS 2013!
Join people like Ted & Kathy at Bike MS TOday!
Ted, team member Liz, and I joined the Bike MS Committee this year so that we can be more involved with fundraising and events, and draw more people into an awareness of multiple sclerosis. We wanted to bring more MS awareness into the community. As we attend other events to promote Bike MS, we draw attention to the chapter, its many events and to this unpredictable disease, multiple sclerosis. It’s so important to reach smaller communities that don’t get a chance to hear about these things. So many people have visited our booth because they were interested in an event, or wanted to talk to us about someone they know who has MS, or to make a donation, or volunteer. Even though we have done what we set out to do, we need to reach many more. We will keep doing this even well past the time I can’t walk or ride.
Register, donate or volunteer by visiting biketofinishMS.com or call 1-800-486-6762.
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MS connection: FALL 2013
FUNDING THE MISSION
“DO IT YOURSELF” FUNDRAISING GETS CREATIVE with CORPORATE GIVING The Conrad Companies, a group of companies headquartered in San Diego begins each holiday season with a corporate giving fundraiser. They host the Conrad Annual Charity Drive, and it has become a fun and rewarding tradition. Beginning on November 1 of every year, Keith Richenbacher, President of the Conrad Companies, offers “casual dress” tickets to the employees during the holiday season. The company policy entitles employees to casual dress every Friday; however, at the start of the drive, they are suspended until the New Year. During this time employees may purchase Casual Day Stickers for $3 per day for any day of the week. Employees may also choose to purchase a month long Casual Dress Day Badge for $50. All proceeds are donated to the National Multiple Sclerosis Society. Conrad Companies has been hosting the fundraiser for over fifteen years now with nearly 100% participation from its employees.
Over the years, the Conrad Companies has raised anywhere from $1,000 - $2,000 each year with their corporate giving fundraiser. It is individuals like Keith and the employees at Conrad Companies that make us one step closer to finding a cure. Keith and the employees of Conrad Companies show a great example of one of the many ways to creatively fundraise using "DIY" Fundraising!
Learn more about DIY fundraising by visiting http://communityevents.MSpacific.org or contact Heather at (760) 448-8417 or heather.dean@nmss.org.
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.”
Mark your calendar
local events
Regional Teleconferences
Moving Forward: The Newly Diagnosed Seminar
Thursday, December 5 Nutrition and MS
Saturday, October 5 8:30am – 12:30pm Orange County Moving Forward is an educational seminar offered at no cost to you. The program is designed for individuals who have been diagnosed with MS within the past three years. Our objective is to provide you with information about the diagnosis of MS, treatment options, and the emotional aspects of MS.
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Thursday, October 3 Information on the Affordable Care Act
Scripps Fall Lecture Series FA L L L E CTU RE S E RIE S 2013 O N M ULT I PL E S CL E R O SI S IN COLLABORATION WITH SCRIPPS CLINIC ScrippS MeMorial HoSpital ScHaetzel center, Great Hall, 9888 GeneSee ave, la Jolla ca 92037
Cost is FREE. spaCE is limitEd . Call 1-800-sCRipps to REgistER.
Creating Your MS Treatment Plan: Which MS Therapy is Right for You?
The Future of MS Care: A Look at the Latest MS Research
Ask the MS Expert: An Open Forum for People with MS
Disease modifying therapies: strengths & weaknesses
Treatments on the horizon
Addressing your unanswered questions
Wednesday, September 18
Your treatment plan When it’s time to explore new options
Wednesday, October 16
Restoring neurologic function
Wednesday, November 6
Clinical trials & lab research
Join neurologist Charles Smith, MD for a free series of seminars that will offer valuable information to people who want to better manage their MS symptoms and improve their quality of life. Each lecture is from 6:30-8:30pm. Register by calling 1-800-SCRIPPS (1-800-727-4777).
Family Fun Day at Knott’s Berry Farm Saturday, October 26 Gather your family and join us for a day of fun at “America’s 1st Theme Park!” Enjoy a fabulous buffet breakfast including Mrs. Knott’s famous chicken, scrambled eggs, French toast and other breakfast favorites. More details will be mailed in September. For more information, email Katie Freiert at katie.freiert@nmss.org.
Wednesday, September 18 Creating Your Multiple Sclerosis Treatment Plan: Which MS Therapy is Right for You? Wednesday, October 16 The Future of Multiple Sclerosis Care: A Look at the Latest MS Research Wednesday, November 6 Ask the MS Expert: An Open Forum for People with Multiple Sclerosis
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 Brea 1st Friday, 10am - 12pm Jim Langdon 714-392-2052 langdonjim1942@gmail.com Lisa Seifert 714-826-6393 mcbryde99@hotmail.com Shelley Bower 714-404-3468 shelleyb@gmail.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
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. 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 pfwolz@aol.com 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 4th Wednesday 10am - 12pm Jack Santos 949-786-3421 jackandlinda1948@gmail.net Bonnie Richmond 949-677-4272 sambon@pacbell.net 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 714-916-7296 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 714-528-8404 robert.retired@hotmail.com
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 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 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: I Can’t Remember Group National MS Society 12121 Scripps Summit Drive 1st & 3rd Wednesday, 11am 12:30pm David Ries 619-997-3483 Support Group for People dkries@gmail.com Experiencing Progressing San Diego (Clairemont/La Jolla) MS Symptoms Denny’s Restaurant 2nd Tuesday of Every Month 4280 Clairemont Mesa Blvd. 10:00am - 12:00pm 1st Thursday, 9:30 - 11:30am Facilitator: Aarushi Malhotra 714-689-9613 Debbie Hornstein, MSW aarushi.malhotra@nmss.org Neighborhood Community Center San Diego: Men’s Group 1845 Park Avenue Kaiser Education Center Costa Mesa, CA 92627 San Diego 714-689-9602 10990 San Diego
professionally-led support groups in Orange & San Diego Counties
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
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: FALL 2013
HEALTH & WELLNESS CLASSES yoga 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, 1:00 - 2:00pm 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 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 San Diego: Indoor Wavehouse 3115 Ocean Front Walk Mondays, Wednesdays, & Fridays 10:30 - 11:30am
Balance & strength Training
La Jolla Ability Rehab Specialists 737 Pearl St, #108 1st, 2nd, 3rd Tuesdays, 6 - 6:45pm Costa Mesa Healthy Balance 1599 Superior Avenue, Suite B Thursdays, 10:30 - 11:30am
To attend any of the listed classes, a waiver is required. Please contact 1-800-344-4867 to request a waiver today.
in your neighborhood
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 San Marcos: Lebed Method Meadow Lark Community Church 1918 Redwing St. Tuesdays, 10am Diana Dean-Naú 760-809-9176 $5 per class
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nationalmssociety.org | 1-800-344-4867
Mark your calendar
UPCOMING OPPORTUNITIES Annual Family Holiday Party Saturday, December 14 Join us for our Annual Family Holiday Party sponsored by the Sycuan Band of the Kumeyaay Nation. With over 650 attendees, this is one of the largest member programs of the year! This year’s event will be held at San Diego’s historical Golden Hall in the San Diego Concourse. Guests will be treated to a delicious catered buffet and families will enjoy a fabulous performance by a favorite local high school song and dance group. The Annual Holiday Party is an event that families look forward to year after year. This is not only an opportunity to celebrate the holidays with friends and family, but a positive way to interact with others affected by MS. More details and information on how to register will be mailed in November.
Turkey Delivery
In the spirit of the Thanksgiving holiday, the chapter will be providing turkey dinners or grocery gift cards to registered members with MS and their families who are either in financial need or have difficulty preparing a holiday meal. Dinners and gift cards are limited. Requests will be accepted beginning October 1 through November 18 or until supplies last. For more information or to make a request, call 1-800-344-4867 and press “1”.
Educational Scholarships
Highly qualified high-school seniors and firsttime college freshman (of any age) who have been diagnosed with MS or who have a parent with MS can submit applications for the 2014 National MS Society Scholarship Program beginning October 1. Deadline to apply is January 15, 2014. We are pleased to be able to offer this opportunity again this year thanks to the generosity of the Volunteers In MS (VIMS) and the McGrory Family Foundation who fund this fantastic program. Awards range from $1,000 - $3,000 and a small number of four-year awards are offered. Additional criteria include financial need, academic record, participation in school or community activities, letters of recommendation and an essay (written by the applicant) on the impact of MS on their life. For more info, visit nationalMSsociety.org/ scholarship or call us at 1-800-344-4867 and press “1”.
Learn more at MSdinnerauction.com
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FUNDING THE MISSION
ROCKIN’ and RUNNING FOR MOM As a third year participant of MS Rockstars, a half-marathon and marathon training program, Tim Gendler gets to run for a purpose; he gets to run for his mom. Tim’s mother, Kathy Gendler was diagnosed with MS twenty-five years ago. With several Bike MS events under his belt, he heard about the MS Rockstar program and had to give it a go! “I liked running before I started training for my first marathon and I LOVE running now,” says Tim. The program allows Tim to meet amazing people who share his experiences with MS and it’s an event he looks forward to year after year. Living across the country from his mom (pictured below), Tim is not able to see her too often but always thinks of her when running. “I don’t always feel great when I’m running. Heck, sometimes I feel downright awful but I know that when I run, I am helping.”
By participating in the MS Rockstars program through the National MS Society, Tim is ultimately supporting his mom and knows that he can help make a difference in her life and many others. “MS Rockstars is the program that motivates me to help my mom.” As a fellow MS Rockstar participant once said, “you don’t have to be a runner to be a Rockstar” and we encourage you to come join us in the MS Rockstar program for an experience you will never forget. To learn more or register for this year’s event, visit MSrockstars.com or call 1-800-344-4867.
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MS connection: FALL 2013
CAREGIVER SUPPORT
NOVEMBER IS NATIONAL FAMILY CAREGIVER MONTH! We recognize the loving efforts of family caregivers all year long, but National Family Caregiver Month, designated in November, is a special time to educate and raise awareness around caregiver issues as well as increase support for the vital role they play. Four Sources of Support for Family Caregivers You Might Not Know About: 1. Caregiver Resource Centers offer various types of support from educational workshops to legal or financial consultation, all to support the various needs of the family caregiver. Contact the center in your area: Orange County: Orange Caregiver Resource Center 130 W. Bastanchury Rd. Fullerton, CA 92835 714-543-8312 www.caregiveroc.org San Diego County Southern Caregiver Resource Center 3675 Ruffin Rd. Ste. 230 San Diego, CA 92123 858-268-4432 www.caregivercenter.org 2. The chapter offers professionally-led support groups, specifically to support family caregivers. See page 9 for times, dates, and information.
January 2013
3. Learn, share and connect with other people affected by MS at our online community by visiting MSconnection.org.
4. The chapter offers a Family Respite Care Program. We partner with local Caregiver Resource Centers to offer the gift of time to family caregivers to care for themselves. Family caregivers are linked to a family consultant who can help assess and arrange for in-home respite hours with a licensed home health agency. Short-term grants are offered to eligible families in need at no cost on a first-come first serve basis. This program may be just what you need to improve the health of your whole family. For more information, call 1-800-344-4867 and press “1.” Special thanks to the Employees Community Fund of Boeing California and the Zankel Family Fund for supporting this program.
FREE GIFT FOR FAMILY CAREGIVERS! Receive “The Comfort of Home,” a guide for every caregiving stage. This guide offers insight on making the decision to provide home care, preparing the home for comfort and safety, assisting with activities of daily living, and strategies to avoid caregiver burnout. Call Janell Marshall at (760) 448-8407 to get your copy while supplies last.
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Funding the mission
Gift your stocks as a donation and join the Golden Circle! Meet Ms. Phyllis Yates, a Golden Circle member of the National MS Society for many years now. The Golden Circle is the Society’s membership program acknowledging the support of important individuals who make their mark against MS with an annual gift of $1,000 or more. Her long-term commitment to create a world free of MS is in support of a family member who lives with the disease. “This is a fabulous organization and I feel it’s important to do all I can”, says Phyllis. Phyllis chooses to donate stock each year to the National MS Society. She has found that giving
stock, instead of cash, as a donation is greatly beneficial to both parties. If the stock has increased in value from the time of purchase, Phyllis can avoid paying the capital gains tax by donating the security and receiving a tax deduction for the full amount. Since taxation is avoided on the stock donation and the Society is able to avoid brokerage fees, Phyllis is actually able to make a larger donation than if she gave cash or cashed out the stock herself. This is one way to get creative when finding ways to support the Society. To learn more about donating through gifts of stock and becoming a Golden Circle member like Phyllis, contact Erich Foeckler, our Donor Relations Officer, at (760) 448-8412 or erich.foeckler@nmss.org.
CALLING ALL VOLUNTEERS!
We still need help at Challenge Walk MS, September 27-29. Are you willing and available? Come enjoy an inspirational event, and have a blast helping us set up, cheer, and any number of other opportunities. Visit myMSchallenge.com, call 760-448-8416, or email linda.ingram@nmss.org for more information or to register.
16 research Focus on Ms research research Focus on MS research
A joint joint meeting meeting held held May May 29 29 to to June June 11 by by A the Consortium Consortium of of Multiple Multiple Sclerosis Sclerosis Centers Centers the (CMSC) and and the the Americas Americas Committee Committee on on (CMSC) Treatment and and Research Research in in Multiple Multiple Sclerosis Sclerosis Treatment (ACTRIMS) showcased showcased the the latest latest directions directions in in (ACTRIMS) MS research. research. MS Here isisa selection fromfrom more more than 200 presenHere a selection than 200 tations on research seeking to stop MS in its presentations on research seeking to stop MS tracks, restorerestore functionfunction to those to who havewho MS in its tracks, those and to end thetodisease have MS and end theforever. disease forever.
stop MS Ms Stop
Researchers at at the the Colorado Colorado Blood BloodCancer Cancer InInstitute in Denver reported two-year resultson stitute in Denver reported two-year results on a study following people with highly a study following 24 24 people with highly active active relapsing-remitting MSwere who treated were with relapsing-remitting MS who treated with bone marrow transplantation. bone marrow transplantation. Both relapses Both relapses and disease activity and disease activity observed onobserved MRI scans on MRI scans were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events
MS connection: FALL 2013 were significantly reduced; however, there was significant loss of brain volume the first year, which then stabilized, and one person died. Other adverse events included excessive levels of uric acid and liver enzymes, and decreased potassium levels. Participants are being followed for a total of five years, and additional research is needed to determine the risks and included excessive of uric acidexperimenand liver benefits for peoplelevels with MS of this enzymes, and decreased potassium levels. tal procedure. Participants are being followed for a total of A study theadditional University of California, five years,atand research is needed Los Angeles, tested andfor female to determine thewhether risks andmale benefits peoplesex chromosomes the procedure. response of the with MS of thisinfluence experimental nervous system to injury. In female mice geAnetically study at the University of California, Los engineered to express the male (XY) Angeles, whether male female or female tested (XX) chromosome, XY and mice experisex chromosomes the response of enced a more severeinfluence MS-like disease. However, the nervous systemdid to not injury. In female mice immune responses differ. If confirmed genetically engineered to express the to male in further studies, such findings may help ex(XY) or female (XX) chromosome, plain why MS progression occurs fasterXY in mice men, experienced severe MS-like disease. even though aMSmore is more common in women. However, immune responses did not differ. If confirmed in further studies, such findings restore: rehabilitation may help to explain why MS progression occurs faster in studies men, even though MS isonmore Three separate reported results fallcommon ing issues.in women. • Debra Frankel, vice president, Programs,
Restore: ServicesRehabilitation and Clinical Care at the Society, re-
Three separate studies reported results on ported that participants in the Society’s Free falling issues. from Falls program improved in balance and walking,Frankel, and thatvice the president, psychological impact • Debra Programs, of falls was after Services andreduced, Clinical even Caresixat months the Society, the program. (For more on how to particreported that participants in the Society’s ipate in the from improved Falls program, call Free from FallsFree program in balance 1-800-344-4867, and walking, and or thatvisit the www.national psychological MSsociety.org/freefromfalls.) impact of falls was reduced, even six months after the program. (For more on how to participate in the Free from Falls program, call 1-800-344-4867, or visit www.national MSsociety.org/freefromfalls.)
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• At the University of Illinois at UrbanaChampaign, researchers found that fall risk decreased significantly and balance improved in 10 people with MS who participated in a 12-week, home-based exercise program, compared with 12 people who did not participate. The Society is funding a continuation of the study to determine how exercise can be used to prevent falls in people with MS. • Researchers at the Oregon Health and Science University in Portland found that in 53 people with MS taking a range of medications, those taking no medications had a 27% risk of falls and that the risk of a fall increased 33% with each additional medication. Larger studies are needed to confirm how medications might affect the risk of falling, so that clinicians can consider this important aspect of MS management. A Society-funded study at the University of Illinois at Urbana-Champaign found that video-chat sessions with a behavior change coach improved results of a six-month physical activity program among participants. The results also showed reduced fatigue, depression and anxiety.
Restore: Repair
Investigators at Endece, LLC reported that the molecule NDC-1308 reduced cell death in the spinal cord of mice with an MS-like disease and activated genes important in the development of myelin-making cells. The company is supporting preclinical research to develop NDC-1308 as a possible future treatment for repairing damage in MS.
End MS
A Society-funded study at University of Miami found that 287 Hispanic/Latinos with MS were more likely to experience symptoms of motor weakness, ataxia (problems with muscle control) and bladder problems, when compared to 275 non-Hispanic whites with MS. Hispanic/Latinos also responded more favorably to interferon treatments. For MS resources in Spanish and information about Hispanic/Latinos living with MS, visit mueveteMS.org. A study at University of Utah, Salt Lake City, using a new technique called “deep sequencing,” found that the activities of genes that instruct retroviruses was significantly increased in 14 people with primary-progressive MS. Further studies in larger numbers of people to determine the significance of these findings are about to get underway with Society funding. Data collected from the Sonya Slifka Longitudinal MS Study, established by the Society in 2000 to study demographic and disease characteristics, use and cost of health services, access to care, quality of life, treatment and much more, is being made available to qualified investigators for studies on the direct and indirect costs of MS. These include the financial impact of out-of-pocket costs, informal caregiving, pregnancy and mental health treatment. To read more about the joint meeting and other recent MS research, visit www.national MSsociety.org/research or sign up at www. nationalMSsociety.org/signup to have MS eNEWS delivered monthly to your inbox.
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MS connection: FALL 2013
A COMMUNITY COMING TOGETHER
Congratulations Walk MS Top teams and fundraisers Big kudos to our incredible teams and top fundraisers who made Walk MS 2013 a success! We are so proud of these amazing groups and individuals!
Overall Top Fundraisers Carlsbad: Lynn & Dick Gordon - $80,836.96 Irvine: Kristi & Bill Bisch - $30,405 (pictured right) San Diego: Mary & Paul Smigliani - $26,792 Overall Top Teams Carlsbad: Team Dick Gordon - $85,242 Irvine: Team Momentum - $32,670 San Diego: Uncle Phil’s Feat with UltraStar Cinemas - $30,691 Additional Top Team Division Winners Team Smig - $27,550 Dawn Trekkers - $26,915 Team SDCCU - $19,223 Team Evans - $18,325 Susie’s Stars - $10,436 UCSD MS Center - $9,370 All for One, One for All - $9,000 Orange County Parrot Head Club - $8,365 Sunshine Walkers - $4,298 Registration for Walk MS 2014 will open soon! Visit MSwalk.com to see next year’s dates!
Bill and Kristi Bisch are longtime supporters of the chapter. Their family participates in every chapter event that is offered! Bill shares, “fundraising events are a great excuse to enjoy team spirit and raise money for much-needed MS research. My family has participated in Walk MS for over a decade.” This year also marks a fundraising milestone for the team. They, along with co-captain Chris Serocke, have raised over $1 million for the Society and will be recognized at this year’s National Conference in Denver in November. Congrats Bill & Kristi!
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nationalmssociety.org | 1-800-344-4867
ADVOCACY
Be a digital MS activist In 2012, MS activists sent tens of thousands of emails, placed hundreds of phone calls, and made hundreds of in-person visits to members of Congress asking for their support on issues important to people with multiple sclerosis and their families. And now there are more ways for MS activists to connect—online.
Driving change
Digital MS activists—like all MS activists— want to drive change and do so by amplifying their voice and connecting with elected officials over social media. At www.nationalMSsociety.org/digiMSactivist, learn how to share your story, connect with other MS activists and build relationships through social media and email. The webpage includes ways to: • Get informed. Become part of the MS Activist Network. Receive e-newsletters and Action Alerts about important pieces of legislation. Send emails with a few clicks of your mouse. • Rise up. Learn where your elected officials stand. Speak out on issues important to you as a person affected by MS. • Take Action. Build relationships with elected officials by posting on and liking their
social media pages and by thanking them on Facebook or Twitter for their supportive actions. • Recruit. Encourage others to join the movement by directing them to our video at ntl. ms/YouCanBeAnMSActivist, or to www. nationalMSsociety.org/digiMSactivist. Become a digital MS activist and help shape the conversations today that will drive change tomorrow—we promise you, people will listen!
Dear Colleague
“Dear Colleagues” are important tools in supporting legislation that impacts people with multiple sclerosis. They are letters sent by one or two members of Congress to fellow members, usually asking for co-sponsors on a new bill or seeking to influence recipients’ votes on a particular issue. The Society often helps compose letters that support legislation important to people with MS. MS Activists help gain signers through Action Alert emails. This spring, Dear Colleagues were circulated in Congress to support $10 million in funding for the MS Congressionally Directed Medical Research Program, $32 billion for the National Institutes of Health, and $2.5 million for the Lifespan Respite Program. The Congressional MS Caucus and MS activists are working in coalition with other groups to preserve these funding levels for FY 2014. To join the effort, go to www.nationalMSsociety.org/MSActivist.
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MS connection: FALL 2013
SUPPORTING THE MISSION
THE FACES OF VOLUNTEERING
Did you know there’s an assortment of volunteer opportunities with our chapter? We’ve got something for everyone, whether you want to come into our office, work from home, or come out to an event. Check it out!
Rocking the Rest Stop at Challenge Walk MS
Robert Manroe and his group of Castle Park High School students (pictured above) really know how to host a great rest stop! They organize and manage Rest Stop #20 at Challenge Walk MS, setting up and greeting walkers with enthusiasm and zest! Robert says, “In order to become contributing members of a community, students must be introduced to positive events like the Challenge Walk. The unique experience of supporting the walkers within the environment of the Challenge Walk is two-fold – it is the event that day and the realization that such events exist. Teenagers may be unaware that such fulfilling opportunities exist and that they can make a
profound impact. They can see how MS affects people differently. That is commitment to a cause.”
Intern Rockstar
Can you imagine giving up your precious time during the summer months to help at the chapter? Our amazing intern, Scott Wookey, did just that, coming into the office every day from 9-5! Talk about a slice of the real world. Scott tells us, “Not only is this a great cause, but the atmosphere and employees are very positive and welcoming. I have learned a lot about the inner-workings of an office and the way in which a non-profit organization operates. So far, it has been a summer well spent. It is a great feeling to come into work every day and know that you are helping make a difference in peoples’ lives.”
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nationalmssociety.org | 1-800-344-4867
Are you ready to volunteer? Join us today! Contact Linda at linda.ingram@nmss.org or (760) 448-8416 to learn more about how we can utilize your talents!
Rocking out... literally!
The chapter also gets some pretty cool opportunities for our volunteers, including the chance to usher at concerts at the Valley View Casino Center. Our hunt for a leader to manage this fun series of events brought us to Marianne Dilworth. Marianne had already volunteered for the Society in Boston, and she took charge in organizing over 25 volunteers at each event! There are 3 more exciting concerts to go so if you are over 18 and want to be an usher contact marianne_dilworth@yahoo.com.
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PAID ADVERTISEMENT You’re invited to join us at a Novartis MS Education Link Event Hear Charles Smith, MD share information about multiple sclerosis (MS), learn about a prescription treatment option, and connect with people in your community living with MS.
September 12
6:30pm Bistro West 4960 Avenida Encinas Carlsbad, CA 92008
October 10
6:30pm The Godfather 7878 Clairemont Mesa Boulevard San Diego, CA 92111
November 12
6:30pm The Brigatine Restaurant 421 West Felicita Avenue Escondido, CA 92025
Tell or bring a friend!
Accessible to people with disabilities. Light meal served. Parking will be validated.
Space is limited. Please RSVP by calling (866) 682-7491
Novartis Pharmaceuticals Corporation East Hanover, New Jersey 07936-1080 Š 2013 Novartis 1/13 T-XMG-1234310
PAID ADVERTISEMENT
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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
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
mark your
calendars September
18: Scripps Lecture Series: Creating Your MS Treatment Plan 27-29: Challenge Walk MS
October 5: 16: 19-20: 26:
Moving Forward: The Newly Diagnosed Seminar Scripps Lecture Series: The Future of MS Care Bike MS Bay to Bay Tour Family Fun Day at Knott’s Berry Farm
November 6: 23:
Scripps Lecture Series: Ask the MS Expert MS Dinner Auction
December 14:
Annual Family Holiday Brunch
See more events and programs at http://calendar.MSpacific.org.