WINTER 2013 Pacific South Coast Chapter
MS Connection Newsletter CHANGING LIVES Page 5
INSIDE 04 THIS ISSUE
It’s time for Walk MS
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mark your calendars for upcoming events
VITAMIN D AND YOU
Pregnancy and ms therapies
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MS connection: WINTER 2013
A NOTE FROM THE CHAPTER PRESIDENT & BOARD CHAIR
GIVING & THANKS
It’s the season of giving and thanks, and we’re thankful for the ways you’ve helped us support people affected by MS. Just a few weeks ago, the chapter provided 138 Thanksgiving meals to families in need. There’s plenty of time to get involved with the chapter this year and more ways to give: • Consider a planned gift through the Lawry Circle (page 3).
“From what we get, we can make a living; what we give, however, makes a life.”
- Arthur Ashe
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific
On the Cover: Pam & Jerry Mabry. Learn more about this couple and how the Society helped them on page 5.
• Start planning for taxes with a year-end donation to the chapter (page 5). • Be a part of Walk MS by registering to start a team, volunteer, or walk as an individual. If you start a team and make a selfdonation before the new year, you’ll earn a special Team Captain Jacket (page 4). • Give your time as a volunteer. We have many ways to get involved using your unique talents and skills (page 14). We hope you enjoy a special holiday season with loved ones and we look forward to another great year working together to create a world free of multiple sclerosis. Cheers,
Rich Israel Chapter President
Cynthia Perazzo Board Chair Rich and Cynthia at the National Leadership Conference in Denver
nationalmssociety.org | 1-800-344-4867
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FUNDING THE MISSION
LEAVING BEHIND A LEGACY For the past 47 years, we have received an annual gift from the Vencill Family, a pioneer family of the Imperial Valley, from Holtville, California. These gifts over the years have totalled nearly $100,000 in support of the National MS Society’s mission to create a world free of MS. This year, the Vencill Family made the final distribution of their planned giving, gifting the chapter with over $750,000. Their many years of giving shows their incredible generosity and support. By contributing through the Lawry Circle, our planned giving club, the Vencill Family has left a lasting legacy that will positively impact
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 Š 2013 National Multiple Sclerosis Society, Pacific South Coast Chapter
many thousands of people living with MS and their families. From services to cutting edge research, this gift offers more hope and help for those who need it most.
For more information on how to make your planned gift and join the Lawry Circle, contact Erich at (760) 448-8412 or erich.foeckler@nmss.org
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: WINTER 2013
SUPPORTING THE MISSION
THIS IS WHY WE WALK On September 25, 2009, Laura woke up with numbness on the entire right side of her body. Four months later, she was diagnosed with multiple sclerosis. Laura was 42 years old. The last four years have been a roller coaster ride for her – balancing work and living with MS has been challenging. Laura has constant foot pain, which reminds her daily of the disease.
Registration is open for Walk MS! Saturday, April 5: University of California, Irvine Saturday, April 26: NTC Park at Liberty Station, San Diego Sunday, April 27: LEGOLAND® California Resort, Carlsbad Sign up today by visiting MSwalk.com or calling (800) 486-6762.
Laura shows off her Top Fundraiser mile marker
Laura participates in Walk MS every year because she wants to do something for everyone who has been diagnosed with MS. She also wants to bring awareness to this disease. This year, Laura’s Walk MS team, Team God’s Daughter, raised $3,560, and Laura was voted Most Inspirational Walker at the Carlsbad walk. Having MS has given Laura a deeper understanding and compassion for those living with a chronic disease, especially those whose symptoms are invisible, as hers are. The National MS Society has helped Laura through her journey in many ways, including providing classes for the newly diagnosed, support groups, seminars and educational materials. Thank you for walking and helping to keep people like Laura moving.
‘Tis the season for being thankful and we want to express our deepest gratitude to San Diego County Credit Union. This year, Team SDCCU raised $19,223, recruited 113 members, and was the Top Corporate Team and Top Division Winner in San Diego. And if that wasn’t enough, they also surpassed the $1 million mark for support through sponsorship and fundraising. A BIG thank you to San Diego County Credit Union for their continued support as Title Sponsor of Walk MS in San Diego and Carlsbad. We look forward to another great year partnering together in 2014!
nationalmssociety.org | 1-800-344-4867
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SUPPORTING THE MISSION
CHANGING LIVES On November 23, at the 27th Annual MS Dinner Auction sponsored by Pacific Wealth Management, a video was shown featuring Jerry and Pam Mabry that truly moved the audience and brought them to a standing ovation for this incredible couple. In 2010, the Society began to work with Jerry who has a progressive form of MS and no longer has the use of his arms or legs. Recently, the Society was able to provide a specialized power wheelchair for Jerry that allows him to control his chair with a head motion device. When Jerry received this amazing chair he shared:
“Controlling my chair with my neck? Technology is amazing! I think that one of the most difficult things about having this disease is the complete loss of independence. In just about every phase of my life, I have to ask someone for assistance. From something as simple as scratching my nose to everyday personal hygiene, I am at the complete dependence of others. I appreciate their kindness and commitment to my well-being, but nonetheless, it is a humbling experience. This simple device, in a way I do not expect you to understand, has exponentially improved the quality of my life.”
Pam & Jerry Mabry at the MS Dinner Auction
Jerry now lives in an assisted living facility, but thanks to bus vouchers provided by the Society, he is able to visit his wife Pam for dinner each week. At the Auction, over $490,000 was raised to support the Society’s mission of helping those affected by MS like Jerry. You also can help ensure individuals like Jerry receive the support they need and continue vital research toward a world free of MS by making a donation. Gifts are 100% taxdeductible and can be made in a variety of ways, including cash, check, credit card, or stock transfer. For more information or to make a gift, call (800) 486-6762 or visit MSpacific.org and click “Donate.”
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MS connection: WINTER 2013
BIKE MS
IT’S MORE THAN A RIDE
Dee Folse started riding in Bike MS 13 years ago, the past 5 leading Team Shoebacca (pictured above). He is passionate about the mission of the National MS Society and Bike MS, as he describes on his team fundraising page, “Riding bikes and helping those in need, how can that not be a great thing?!” Team Shoebacca was 38 members strong this past October, raising nearly $40,000. Towards the end of Day 1, Team Shoebacca came upon a Bike MS rider who was sitting on the side of the road with her bike. The rider lives with MS and was experiencing cramping in her legs. She needed a break before the final three miles uphill to the finish line, but was determined to finish the ride, no matter how long it took. Instead of continuing on their way, Team Shoebacca told the rider to get back on her bike and they’d push her, as a team, up the hill. As Dee describes, “She was not going to have to walk to the finish on our watch!” Crossing
the finish line was a moment the entire group will never forget. Bike MS is more than a ride — it is anticipation, camaraderie, personal accomplishment, and the knowledge that you’re changing lives… making every mile that much sweeter. As a great personal challenge and achievement that any rider can experience, Bike MS is both a weekend-long and lifelong opportunity to make a difference in your own life, and in the world. It’s more than a ride — it’s Bike MS.
YOU CAN STILL SUPPORT BIKE MS! On October 19 and 20, 1,900 cyclists and more than 500 volunteers participated in the Bike MS Bay to Bay Tour, presented by Hansen Beverage Company, KTLA 5 and Fox 5 San Diego. Participants have raised more than $1.9 million so far. You can help us reach our $2.2 million goal by donating at biketofinishMS.com.
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 and select the date of the event or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”
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Mark your calendar
local events MOVING FORWARD: PROGRAM FOR THE NEWLY DIAGNOSED Saturday, February 8 8:30am – 12:00m DoubleTree by Hilton San Diego Mission Valley 7450 Hazard Center Drive San Diego, CA 92108 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.
SAVE THE DATE! 14th annual UCSD MS SYmposium Saturday, March 15 8:30am – 12:30pm Mission Valley Marriott 8757 Rio San Diego Drive San Diego, CA 92108 Dr. Corey-Bloom and other leading experts in the area of MS will share the latest about symptom management, stem cell research and more.
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 langdon.james1942@gmail.com Lisa Seifert 714-826-6393 mcbryde99@hotmail.com Shelley Bower 714-404-3468 shelleyb.ms@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 Wednesday 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@gmail.net Dana Point: Early MS 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 714-773-4332 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 2nd 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 9:30am - 11:30am Pat Howard 714-968-0277 Linda Logan 714-374-0430 lindajohnson6735@yahoo.com Carolyn Cassell 714-846-0598 carolyncassell7@yahoo.com
Mission Viejo: Early MS 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 1st 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 Yosel Tarnofsky 619-516-0411 yosel.tarnofsky@yahoo.com
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nationalmssociety.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 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 Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@cox.net Poway Weingart Center 13094 Civic Centre Drive 1st Thursday, 6:30pm Peggy Green 858-748-4009 pegjean@cox.net 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 Support Group for People csrohan@crohan.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: Alicia Ring Debbie Hornstein, MSW 858-456-8766/ 858-229-6600 Neighborhood aring24@san.rr.com Community Center 1845 Park Avenue San Diego: Men’s Group Costa Mesa, CA 92627 Kaiser Education Center 714-689-9613 San Diego
professionally-led support groups in Orange & San Diego Counties
10990 San Diego Mission Road 1st Tuesday, 6:30pm Mike Kolender 858-274-7114 Marcus Brown 619-248-2667
Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT 714-689-9613
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
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
Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Debbie Centeno 619-460-4123 dcentdeb@yahoo.com
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MS connection: WINTER 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 - 11:15am 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 Educational Scholarships
Highly qualified high-school seniors and first-time 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 now! 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.”
REGISTER TODAY!
MAKE EVERY CONNECTION COUNT: ANNUAL MEETING OF MEMBERS Saturday, January 25 Laguna Cliffs Marriott Resort 25135 Park Lantern Dana Point, CA 92629 As a member of the chapter, you are invited to participate in our Annual Meeting of Members. We will recognize outstanding volunteers, elect our Board of Trustees, review our annual report, and hear about MS research updates from Dr. Sergio Baranzini. Learn more, register, or submit your proxy vote at http://annualmeeting.MSpacific.org.
Learn more or register for upcoming events by visiting http://calendar.MSpacific.org or call (800) 344-4867 and press “1.”
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MS connection: WINTER 2013
LIVING WITH MS
VITAMIN D & YOU During the Society’s webcast, Living Well with MS: Lifestyle, Diet and Complementary Therapies (watch it at nationalMSsociety.org/webcasts), we received a number of questions about vitamin D. We sat down with Dr. Brenda Banwell, who is the division chief of Neurology and professor of Pediatrics Neurology at Children’s Hospital of Philadelphia and the University of Pennsylvania, to get answers to the most popular questions you submitted. How much vitamin D should a person with multiple sclerosis take? If you are living with MS, I would recommend that you work with your healthcare provider to obtain your vitamin D blood levels (also called a 25-hydroxy vitamin D), which is a measurement of the circulating vitamin D in the body. Many people with MS will require much higher doses than is recommended for the general population in order to bring their blood levels up, particularly in the winter. Under the care of a physician, it wouldn’t be unusual for a person with MS to take 3,000 to 5,000 IUs per day. But, if you are taking vitamin D in doses beyond what is recommended, you will want to make sure you are being monitored by a doctor, as too much vitamin D can potentially be toxic.
Is it better to get vitamin D through nutrition or sunlight? The most effective way of obtaining vitamin D is through sunlight acting on the skin – particularly for people with lighter skin. People with darker skin absorb less vitamin D. If we weren’t worried about the negative effects of sunlight, then it would be a very good way (in the sunnier months) of obtaining vitamin D – but of course we have to balance the risks. We live in a world where there are harmful effects of ultraviolet (UV) radiation and skin cancer is a very real concern. Therefore, sunblock has become a major health initiative, but if you wear sunblock, you also block vitamin D production pretty dramatically. I advocate for the safer route of wearing sunscreen and taking oral supplements in order to obtain vitamin D.
nationalmssociety.org | 1-800-344-4867
13 who had higher levels of vitamin D at the time of the routine screening were much less likely to be diagnosed with MS in the 5 to 10 years following the screening than those with lower levels. What that suggests is that if you have robust vitamin D during childhood and teenage years, it could be one of the factors that reduces your MS risk.
People with darker skin absorb less vitamin D.
Can vitamin D help prevent MS in family members of people with MS? It would be very difficult to assume that vitamin D alone would be sufficient to prevent MS. However, the data at this point would suggest that there may be a connection between vitamin D levels and MS risk. One study looked at military recruits in the US who were sampled as part of routine blood screening when they entered the military. This study found a fairly strong relationship between levels of vitamin D and MS. Those
Having healthy vitamin D levels and nutrition during childhood and teenage years is also important for bone health, and may also help reduce the risk for other autoimmune diseases. I would suggest that anyone living in places where we get little sunlight during half of the year take steps to maintain their vitamin D nutrition. And, for family members who have an increased risk of MS, I think it would be a really wise investment to have your vitamin D levels tested and take vitamin D supplements if your levels are low. Read more about the latest research on vitamin D and MS at nationalmssociety. org/vitaminD. Originally published at MSconnection.org/blog.
Discuss your own experiences with vitamin D with other people affected by the disease and hear experts’ opinions on other topics related to living well with MS at MSconnection.org.
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MS connection: WINTER 2013
VOLUNTEERS MAKE IT HAPPEN
SHARE YOUR TALENT with us! WOW! What a year! Our volunteers were everywhere engaging the public, building awareness, and helping event participants. With 2014 just around the corner, consider making your voice heard by joining one of our volunteer teams. There’s a ton of different ways to get involved. Here are just a few:
Have a sparkling personality? Help us provide awesome customer support to our event participants and members. This is a great way to help from home.
Bike MS Crew Team
The Challenge Crew Team makes sure the walkers had an exceptional experience. Consider being on the Challenge Crew Team next year and have the experience of your life!
Join other volunteer leaders to help us plan every volunteer aspect of Bike MS. We’re looking for people throughout Orange and San Diego county. You don’t need to be a cyclist, just passionate about helping out!
Call Team
Challenge Crew Team
Medical Crew
We always need medical support at our events. We’re looking for a strong leader to recruit and organize the medical volunteers for events throughout the year.
Office Volunteers
Over 75 volunteers helped us at the chapter offices this year. Join the group fun of helping out with mailings, assembling packets and goody bags, phone calls, wrapping gifts, and anything else that pops up! It’s something different every day. Volunteers enjoy cheering at all of our events!
Walk MS Volunteers
Over 1,200 volunteers rocked the walk sites last year, helping with everything from medical, rest stops, check-in, setup, breakdown, cheering and selling merchandise. Everyone had an awesome time. Join the fun in 2014 by registering today at MSwalk.com!
Data Entry & Analysis
Hone your analytic skills or learn the important role of data entry by volunteering with our Information Systems department.
VOLUNTEER TODAY! You can apply to volunteer at http://volunteer.MSpacific.org or by contacting Linda January 2013
at (760) 448-8416 or linda.ingram@nmss.org.
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nationalmssociety.org | 1-800-344-4867
SUPPORTING THE MISSION
MISSION POSSIBLE: JOHN & JODI MOST The Mission Possible Club is committed to the cause, care, and cure for MS, recognizing annual gifts and fundraising totaling $10,000 or more each calendar year. In 2012, Mission Possible members raised or donated over $1.4 million! Meet John & Jodi Most, one of 62 Mission Possible Members.
Team MOST: Top of the Hill at Bike MS. John is 4th from left, Jodi is on the far right.
Last year, John & Jodi raised $32,132. John is a 17-year veteran of Bike MS, and Jodi also participates. They fundraise and donate to the MS Rockstars, Walk MS, and Challenge Walk MS. In addition, John and Jodi give their time and talents. John, is a member of the Board of Trustees, Bike MS Committee Chairman, and offers services for events through ad campaigns developed by his company, MOST Brand Development + Advertising. Jodi chaired our Dream Home committee, serves on the Orange County MS Salon Committee and volunteers her time to almost every event. These two help in every way they can and we’re thankful for their support!
BE AN MS ROCKSTAR! It’s not too late to be a part of the rip-roaring group that is the MS Rockstars! If you’re ready to go big, you can train for a half marathon, or if you’d like to just dip your feet in the water, consider the mini marathon (5.2 miles). You can even recruit a friend and do a relay together! No matter which option you choose, you’ll have an amazing time and feel good, both by getting healthier and by raising money and awareness for multiple sclerosis. Learn more or register today by visiting MSrockstars.com or calling (800) 486-6762. What are you waiting for? Join the shenanigans today and kick start your New Year’s resolution. MS Rockstars team celebrates at the finish line.
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MS connection: WINTER 2013
FUNDING THE MISSION
TAKING THE CHALLENGE ON! MEET AN ELITE FEET Meet Kathy Kirk, #4 Top Fundraiser and Team Captain for the Romona Roadrunners (pictured 3rd from left on the right and below). She shares why she walks: I registered for Challenge Walk MS because I have MS and I want to do something for myself and my dear friend David, who has been living with MS for years. David is 42 years-old, uses a wheelchair, and cannot walk. I CAN walk and as long as I can walk, I will. Raising MS awareness through walking and talking, has been rewarding, since you meet people who share their experiences, their triumphs and their stories, it is inspirational. I think one of the best outcomes is getting to know my team so well after weeks of walking, talking, sharing, sweating, and blistering. But I do have to say how supportive everyone was who donated. Without their giving, I would not have achieved Elite Feet without them, they were the elite; I was the feet!
Thank you to our 2013 sponsors!
Over 200 Walkers enjoyed Challenge Walk MS this past September raising over $750,000 for MS! This 3-day 50-mile journey from Carlsbad to downtown San Diego is a truly life changing experience. You can join us for this inspiring event next year September 5-7. Learn more at myMSchallenge.com. Congratulations to our Elite Feet Top Fundraisers, raising $10,000 or more each! 1. Allen Anne - $43,325 2. Jeanne Woodard - $14,700 3. Brian Grey - $12,288 4. Kathy Kirk - $10,490 Congratulations to our top teams! Mission Possible Team ($75,000+) Hurt SO Good!! - $83,840 Gold Award Team ($50,000-$74,999) NorCal StreetWalkers w/ Good Carma - $66,015 Silver Award Teams ($25,000-$49,999) Aye, Aye Captain - $48,738 Team Momentum - $46,272 RAMONA ROADRUNNERS - $26,375
BRAND DEVELOPMENT ADVERTISING
速 速
Bronze Award Team ($10,000-$24,999) Heart and Sole Sisters - $23,833
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nationalmssociety.org | 1-800-344-4867
SPIRIT OF THE MISSION
RICHARD HAUSMAN, SR. RECEIVES LIFETIME ACHIEVEMENT AWARD From November 7-9, leaders from across the MS movement gathered together to celebrate progress, learn from each other, and strengthen commitments to make an even greater impact in the coming year at the National MS Leadership Conference in Denver. This annual conference also acknowledges our many supportive donors and researchers with great opportunities to connect, be recognized, and learn more about the National MS Society. We are pleased to announce that during the conference, Mr. Richard Hausman, Sr. was presented with a Lifetime Achievement Award for his outstanding commitment. The Lifetime Achievement Award is presented to volunteers with thirty-five (35) or more years of service who have steadfastly given of themselves in the movement toward a world free of MS. Richard Hausman’s involvement with the National MS Society began over 40 years ago, when he was diagnosed with MS. Since then, his personal journey with MS and his larger than life personality have inspired his family and friends to get involved with the National MS Society. Among his many accomplishments as Chair of the former Orange County Chapter, were an initial fundraising effort hosted by Ara Parsegian, Notre Dame Football coach and longtime supporter of the Society, and an annual Roger’s Gardens party soiree. In the late 1970’s, Mr. Hausman was nominated the “MS Man of the Year,” and a highlight in the chapter’s history was founding an MS clinic at the University of California, Irvine. Mr. Hausman and the Hausman Family Foundation continue to support the Pacific South Coast Chapter and he is a true inspiration to us all.
Richard Hausman, pictured above and below center with Frank Gifford and Howard Cosell.
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MS connection: WINTER 2013
RESEARCH
Pregnancy & MS THERAPIES
None of the disease-modifying therapies (DMTs) for treating multiple sclerosis have been approved for use during pregnancy. But because MS primarily affects women of childbearing age, women may accidentally become pregnant while still taking medication. In 2002, the U.S. Food and Drug Administration issued guidelines requiring the manufacturers of DMTs to develop pregnancy registries to monitor women who have taken one of the medications within a week of becoming pregnant and/or while they are pregnant. Data on the older DMTs to date suggest no effects on pregnancy outcomes, but reviews are not all complete. See the chart to the right for results and information on signing up for currently running registries.
MEDICATION RESULTS Avonex - Completed Review of data from 75% of outcomes suggested no effect of Avonex on pregnancy outcomes. Reported in Neurology (April 26, 2012). Betaseron - Completed No patterns emerged to suggest increased negative outcomes with Betaseron. But because the sample size was relatively small, definitive conclusions could not be drawn and continued monitoring is recommended. Reported at the Consortium of Multiple Sclerosis Centers Annual Meeting, May 29–June 1, 2013. Rebif - Completed The rates of spontaneous abortion and major congenital anomalies in live births among the women exposed to Rebif during pregnancy were in line with those seen in the general population. Reported in Multiple Sclerosis Journal, April 2011. Tysabri - Completed Present data do not suggest any effect of Tysabri exposure on pregnancy outcomes. Additional data are required before definite conclusions can be made. Reported in Neurology, February 12, 2013. Aubagio - Ongoing Call 1-800-745-4447, option 2, or ask your healthcare provider about enrollment. Gilenya - Ongoing Call 1-877-598-7237 or visit gilenyapregnancyregistry.com. Tecfidera - Ongoing Call 1-800-456-2255 or ask your healthcare provider about enrollment.
Some women with MS may accidentally become pregnant while still on their medications.
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nationalmssociety.org | 1-800-344-4867
money matters
Making health insurance choices Starting October 1, most people who don’t already have health insurance will have new options for coverage when the Health Insurance Marketplace—a component of the Affordable Care Act—begins enrollment for coverage to begin January 1, 2014. The web-based Health Insurance Marketplaces, (sometimes called “exchanges”) are a new way of shopping for health insurance coverage, allowing people to compare plans, get tax credits and other cost help. The program also includes government-certified “navigators,” who are expert health insurance counselors funded by the marketplaces to provide unbiased information, education and enrollment help to consumers at no cost. Coverage through marketplace plans is guaranteed regardless of pre-existing conditions, such as multiple sclerosis, and covers preventive and needed care, such as doctor’s visits, hospitalizations, maternity leave, emergency room care and prescriptions. All plans that participate in the marketplace have to show costs and what is covered in simple, understandable language that allows people to make “apples to apples” comparisons between plans. Enrollment begins October 1st at healthcare.gov. Call the Society at 1-800344-4867 or visit nationalMSsociety.org/ ACAkickin for more information.
FUNDING THE MISSION
SAVE THE DATE FOR GOLF MS Join Honorary Chair and former Mayor of San Diego, Jerry Sanders, for the 20th Annual MS Golf Invitational on Monday, May 5, 2014 at La Jolla Country Club. This esteemed event features golf on an exclusive private course, silent and live auctions, player awards, premier tee prizes, gourmet dinner, and much more. Last year over 110 golfers raised more than $125,000 toward a world free of MS. Come join Jerry for a great day of golf and activities to help support the National MS Society’s mission! Reserve your foursome at MSgolf.org or contact 800-486-6762 for more information about tickets, sponsorship or donating an auction item.
Jerry Sanders
20 money matters
FINANCES AS A FAMILY We share many things with our immediate families – daily routines, closely guarded secrets, vacations, holidays and life milestones. However, many families don’t share one key element of their lives with one another—finances. Whether it’s one spouse who handles the responsibility or parents not including their children in financial discussions, it’s rare for the entire family to discuss financial matters. This could be for any number of reasons, including feeling insecure about finances, not wanting to burden others with financial issues, the belief that such topics are not enjoyable to share, or the limited discussions we had growing up within our own families. However, a collective understanding of financial matters among all members of the family is beneficial on many fronts. Discussing these topics in an open and honest fashion can increase knowledge, lower fear and encourage positive actions. Here are some Do’s and Don’ts when it comes to making financial matters a family affair. DON’T treat it as a taboo subject Bring financial topics up in day-to-day conversation, discuss issues in front of your family, ask them for their input and advice on financial decisions you are facing, and share financial articles or books you’ve read. Work to keep the lines of communication open, and with time, such discussions will become second nature.
MS connection: WINTER 2013
DO teach children of all ages about finances Start at an early age by discussing age-appropriate financial concepts, such as how to save money in a piggy bank. Build upon these concepts as your children grow. With older children, you can help them open a bank account and begin discussing compound interest and investing. Other great financial topics to talk about with children include careers and income, budgeting and credit. DO share your money journey – the good and the bad When discussing your financial history with your partner, spouse or children, it is easy to omit the less-than-favorable parts. Perhaps you misused credit in the past or you haven’t maximized your retirement savings. But don’t leave these out – every portion of your money journey presents a teachable moment. Stay open and honest and encourage other family members to learn from the full range of your experiences. DO involve the family in philanthropic efforts For many of us, charitable giving is an important element of our financial lives. No matter the size or scale, donating to causes we care about holds great significance and personal meaning. Involvement of the family in this process can help illustrate how money can be used as a tool to make the world a better place. Consider asking your spouse and/or children to research a charity they would like to support. Encourage your children to save their own money to donate to a cause. Share any letters of appreciation and stories you receive with your family.
nationalmssociety.org | 1-800-344-4867
DON’T avoid difficult topics There’s no doubt that discussions about estate planning and wealth transfer can be challenging. Nonetheless, sharing key financial information with spouses, children and/or elderly parents will serve to reduce fear and uncertainty for all involved. More importantly, it will save significant confusion, stress and worry in the future should the unthinkable occur. Possible information to discuss includes: • Names and contact information for your key tax, legal and financial advisors • Personal data (social security numbers, account numbers, passwords for financial websites) • The location of important records and documents • A summary of your cash and investment accounts • Any legal arrangements, such as wills, and who you have designated to carry out key legal and financial tasks • Directives (medical and/or financial powers of attorney)
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DON’T hesitate to seek professional advice If you feel uncertain about how much you know about financial topics such as budgeting, retirement goals and investments, reach out to an advisor who can help you understand better, and whose insights you can then share with your family. Consider having family members join you for these meetings. They will be able to ask any questions they may have and feel like active participants. The Society’s Financial Education Partners program offers pro bono financial planning and education to people with special health or financial circumstances. Call 1-800-344-4867 to learn more, or visit www. nationalMSsociety.org/financialplanning. Pam Evason, CFA, CPA is Managing Director at Windermere Wealth Advisors, LLC, an investment advisory firm located in Milwaukee, Wis., and a member of the Wisconsin Chapter’s board of trustees. This article is for informational purposes only. It is not a substitute for professional guidance and assistance in planning your financial future. The matters discussed here are provided as a starting point for further discussions with an investment professional familiar with your specific situation.
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: Jack Florin, MD January 15, 2014 at 9:00AM The Broken Yolk 101 S. Las Posas Road San Marcos, CA 92078 February 12, 2014 at 6:00PM Tio Leo’s Mexican Restaurant 3510 Valley Centre Drive Del Mar, CA 92130 ___________________________
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PAID ADVERTISEMENT
An Oral Treatment Option for Relapsing Forms of Multiple Sclerosis (MS) An informative event for people living with MS and their caregivers. Dr. Barry Hendon, Dr. Lori Hendon Travis & a Patient Ambassador
Thursday, January 23, 2013 at 6:00 PM Pacific Fogo Da Chao, Brazilian Chuhascaria 668 6th Avenue, San Diego, CA 91210
Space is limited. A light meal will be served. To RSVP, please call 1-866-703-6293 or e-mail MSrsvp@ahmdirect.com. MS.US.PO1497.0313
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Know Your Options: Exploring an FDA-approved treatment for MS relapses
If you’re looking to learn about a different option for treating your MS relapses, you are invited to join a free online educational session where an MS healthcare professional will discuss:
Register today by phone at 1-877-219-0410
• 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 • An available treatment option for MS relapses • Insights shared by a person living with MS
Online program date:
Remember: All MS relapse therapy decisions should be made under the guidance of your healthcare professional. ©2013 Questcor Pharmaceuticals, Inc. PM-01-01-0234 10/13
or by visiting www.msrelapseprogram.com Use program ID# QP13-9363
Tuesday, January 21, 2014, at 6:30 pm PT
Presented by:
Special Guest:
Christopher LaGanke, MD North Central Neurology Associates, P.C. Cullman, Alabama
Paul P. Acthar Ambassador
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
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mark your
calendars December 14:
Sycuan Annual Family Holiday Party
January
18-19: MS Rockstars 25: Annual Meeting of Members
February 8:
Moving Forward: Program for the Newly Diagnosed
March 3-9: 15: 25:
MS Awareness Week UCSD MS Symposium Boy’s Night Out
See more events and programs at http://calendar.MSpacific.org.
Play a part in making a world free of MS through your continued support of Workplace Giving! Set-up automatic payroll deduction through the United Way or Combined Federal campaign and designate your gift to the National MS Society Pacific South Coast Chapter! United Way #95549 Combined Federal #63706