FALL 2014 Pacific South Coast Chapter
MS Connection Newsletter Pedaling for a cure at Bike MS Page 15
INSIDE 03 THIS ISSUE
Learn more about how Workplace giving helps
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mark your calendars for upcoming events
Focusing on progressive MS
NOVEMBER IS National Family caregiver month
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MS connection: FALL 2014
letter FROM THE CHAPTER PRESIDENT
“How wonderful it is that nobody need wait a single moment before starting to improve the world.”
TAKE ACTION THIS FALL Hello! In the words of Cyndi Zagieboylo, President & CEO of the National MS Society, “People with MS have access to more life changing services now than ever before.” We can attribute this success to our generous donors, remarkable fundraisers, passionate volunteers, brilliant researchers and committed staff. We are excited about the lively fall season ahead and hope to see many of you out there at our events!
- Anne Frank
Read through this issue to learn about the many opportunities to get involved with the Pacific South Coast Chapter and help create a meaningful impact in our community. Attend our events as a participant and encourage your friends and family to experience the journey together (page 15). Other avenues of participation include volunteering inside the office and at our programs and events (page 17). If you are unable to volunteer or participate, workplace giving is an easy alternative (page 3).
Connect with us online:
Please take action and spread MS awareness by getting involved today!
MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific
On the Cover: Bike MS is this October! Sign up today at biketofinishMS.com. Read more about an incredible bike participant on page 15.
Gratefully,
Richard V. Israel Chapter President
(pictured on right with Barbara and Glen Bowen, Challenge Walk MS crew members. Learn more about volunteering at the Challenge by visiting myMSchallenge.com.)
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
WORKPLACE GIVING
Do you participate in your company’s workplace giving campaign? It’s an easy way to make a tax-deductible donation to the chapter through payroll deductions. Ask your employer if they currently have a workplace giving campaign or encourage them to start one today! Your employer can invite an MS Ambassador to your company’s campaign kick-off to learn more about supporting the Society’s movement to create a world free of multiple sclerosis. There are a number of ways to join:
members of the U.S. Military Forces can support the Society through the CFC by designating their contribution to #36706.
• United Way Campaigns: United Way focuses on specific objectives such as education, income, health, and housing. Designate your gift to the Pacific South Coast Chapter, #95549.
• California State Employees Charitable Campaign (CSECC): In Orange County use #14139 and in San Diego County, use #24185.
• Combined Federal Campaigns (CFC): Federal government employees and
For more information contact Denise at 714-689-9607 or denise.voss@nmss.org.
National Multiple Sclerosis Society
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.
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 Volunteer Associate Editor: Leslie Roach © 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter
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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LIVING WITH MS
THE DIAGNOSIS By Katie Jennings
Unbelievably, it’s been three months since I was diagnosed with multiple sclerosis. Time flies when you’re busy and confused. These months have been a whirlwind of appointments and reading and exploration. I would not presume to give advice to people who have years of MS under their belts. But I would like to share my perspective about the bad and the good of being newly diagnosed, beyond just the physical symptoms. The bad: I have no idea what’s going on. I’m a person who prefers the specifics. I like plans. I like goals. I once ran a marathon largely because I printed out a schedule and refused to deviate from it for five months. Since my diagnosis, I’ve spent a lot of time coming to terms with the fact that not everything is black and white. In January and February, I visited three different MS specialists, and each gave me a different diagnosis (relapsing-remitting, primaryprogressive, and finally progressive-relapsing). Each doctor – well-meaning and concerned – gave me a completely different sense of what the coming years may have in store. Maybe I’m standing on the edge of a cliff. Or maybe I’m just looking out at some rolling hills.
“These months have been a whirlwind of appointments and reading and exploration.”
If anything has “There’s a clarity about my become clear to me, it’s that priorities now that I may nothing is clear. To be told, “You never have gained without a big kick in the pants.” have MS,” does not actually tell you very much. Each of us will have a unique experience, and our experiences will evolve and unfold at a pace largely outside of our control. For a planner like me, that’s very, very frustrating. The good: I know exactly what I need to know. I have a six- year-old child, a full-time job, friends whom I never have time to see, and a family that lives too far away. Like many of you, I consider it a good day if I can return even half of the messages on my list. Life doesn’t leave a lot of time for considering the big picture. But learning that I have MS has crystallized one thing for me. As hokey as it sounds, the things that matter are the people I love. If everything else is stripped away (and it might be), those relationships will still be the things that matter. That’s not to say that I’ve given up on more trivial matters. I still care about whether my skinny jeans fit and where I’ll go on vacation this summer. But there’s a clarity about my priorities now that I may never have gained without a big kick in the pants. MS is nothing if not a big kick in the pants.
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nationalmssociety.org | 1-800-344-4867
Making treatment and lifestyle decisions I’ve chosen to be very public about my diagnosis. In the past three months, I’ve heard from many, many friends – and some strangers – with messages of love and support. And however difficult the reason for them, I won’t overlook what a gift those messages have been for me. I’m lucky despite it all, and I’m grateful. I hope you all have days that remind you of that as well. Katie Jennings keeps busy juggling a son, a husband, a job, an old house, and a bossy cat. She was diagnosed with progressive relapsing MS in December 2012. Read more of her journey on Katie’s blog at steadyshegoes.com.
Originally published at MSconnection.org/blog
Connect with other people newly diagnosed with MS and share your experiences at MSconnection.org/groups/ newlydiagnosed
People living with multiple sclerosis and their families now have more tools available to them than ever before, including 10 diseasemodifying treatments, many symptom-management strategies and a spectrum of lifestyle-related options that can improve their quality of life. However, making choices about which tools to pursue can be a complicated and an emotional process and it’s never the same for any two people. Learn about the factors you should consider when making your own treatment and lifestyle decisions. Call 1-800-344-4867 (1-800-FIGHT-MS) to request the DVD and companion book, Making Treatment and Lifestyle Decisions: Thinking Clearly About Benefits and Risks, now available in Spanish and English through the Society’s North American Education Program. For more information online, visit MSpacific.org or nationalMSsociety.org.
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CHAPTER NEWS
JOIN US FOR AN OPEN HOUSE AT OUR NEW OFFICE! We moved! Join us for the celebration of our new Orange County office, on Wednesday, November 12, 2014 from 4:00pm – 7:00pm located at 1221 E. Dyer Rd., Ste. 140, Santa Ana, CA 92705. Come and tour our new office and learn more about the wonderful ways to get involved with the Society. Enjoy a meet and greet atmosphere while connecting with staff, community leaders, supporters and others living with MS. Participate in fun activities, music and refreshments. Let’s celebrate the movement to create a world free of MS! For more information, please contact Denise at 714-689-9607 or denise.voss@nmss.org.
connect with financial resources every connection counts I called the National MS Society and spoke with an MS Navigator to get some information about going back to work. They gave me a number I could call for vocational rehab. It felt good that I could talk to somebody that could give me the information that I always needed. It guided me in the right direction. Carlos, diagnosed in 2001
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nationalmssociety.org | 1-800-344-4867
Mark your calendar
local events
Unless otherwise indicated, to register for any of the listed events, please visit http://calendar.MSpacific.org and select the date of the event, or call (800) 344-4867 (800-FIGHT-MS).
Scripps Fall Lecture Series
Join neurologist Charles Smith, MD in partnership with the chapter for a series of seminars that will offer valuable information to individuals who want to better manage their MS symptoms and improve quality of life.
Below the Belt: Bladder, Bowel, and Sexual Dysfunction in MS Wednesday, September 17 6:30pm – 8:30pm
Managing Cognitive Challenges
Moving Forward: Program for the Newly Diagnosed Saturday, October 4 8:30am – 12:00pm Embassy Suites Santa Ana If you have been diagnosed with MS in the last three years, this program is designed for you. Learn about treatment options, the emotional and physical aspects of MS from community experts in their respective fields. This is also a great opportunity to meet others living with a new diagnosis.
Wednesday, October 8 6:30pm – 8:30pm Register today by calling: 1-800-SCRIPPS (1-800-727-4777)
Family Fun Day at Knott’s Berry Farm
Boys’ Night Out – Movie Night Wednesday, September 17 6:00pm – 9:00pm The Elks Garden Grove All men living with MS are invited to come be a part of this fun movie night! Come make new friends, eat a delicious dinner, and have some engaging conversations.
Saturday October 11, 2014 8:00am – 11:00am Gather your family and join us for a day of fun at “America’s 1st Theme Park,” Knott’s Berry Farm. Enjoy a fabulous buffet breakfast including Mrs. Knott’s famous chicken, scrambled eggs, and other breakfast favorites. Further details regarding this event will be included in the invite to be mailed in September. See more upcoming events on page 11.
8 CONNECTION GROUPS
We have long recognized our responsibility to respond to the emotional needs and challenges that MS imposes on individuals and their families. Experience and research has revealed that group support is an effective strategy to help people face matters related to change and loss, achieve personal insight, foster new hope, build selfesteem and facilitate behavioral changes. We offer 29 Connection Groups covering an array of topics. These connection groups bring together people who share a common life experience for support, education and mutual aid.
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 Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday, 1:30 - 3:30pm Sherri Brash 714-846-2064 Sherri1022@gmail.com
MS connection: FALL 2014 Dana Point: Early MS 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 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.com Bonnie Richmond 949-677-4272 sambon@pacbell.net Irvine: Survive & Thrive Men’s Group Only 3rd Tuesday, 11am-12:30pm Bill Bisch 949-218-5020 bisch@cox.net Bob Verbarg 714-466-0724 bverbarg@cox.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 Cathy Varela 949-842-2296 David Corich 949-470-9020 Midway City 1st & 3rd Tuesdays 9:30am - 11:30am Pat Howard 714-968-0277 Linda Logan 714-374-0430 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 Santa Ana: Man to Man 1st Wednesday, 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Jack Santos 949-786-3421 jackandlinda1948@gmail.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
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nationalmssociety.org | 1-800-344-4867
SAN DIEGO
Chula Vista St. Marks Lutheran Church 850 Hilltop Dr. 3rd Wednesday, 11am - 1pm Yosel Tarnofsky 619-516-0411 yosel.tarnofsky@yahoo.com 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 csrohan@crohan.com San Diego (Clairemont/La Jolla) Denny’s Restaurant 4280 Clairemont Mesa Blvd. 1st Thursday, 9:30 - 11:30am Alicia Ring 858-456-8766/ 858-229-6600 aring24@san.rr.com San Diego: Men’s Group Kaiser Education Center San Diego 10990 San Diego Mission Road 1st Tuesday, 5:30pm Mike Kolender 858-274-7114 Marcus Brown 619-248-2667 Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Angela Kretschmar 619-303-7806 gela0726@gmail.com
professionally-led CONNECTION groups Support Group for People Experiencing Progressing MS Symptoms 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Center 1845 Park Avenue Costa Mesa, CA 92627 714-689-9613 Women’s Caregiver Group 2nd Wednesday of Every Month 6:30 - 8:00pm Facilitator: Deborah LeFevre, MFT 714-689-9613 National MS Society Santa Ana Office 1221 E Dyer Road, Suite 140 Santa Ana, CA 92705 Caregiver Support Group 3rd Thursday of Every Month 6:30-8:00pm Facilitator: Seraphina Galante, MSW, Family Consultant Southern Caregiver Resource Center 3675 Ruffin Road, Suite 230 San Diego, CA 92123 (858) 268-4432, ext. 112
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HEALTH & WELLNESS CLASSES yoga
Aquatics
Costa Mesa Yoga Works 1835 Newport Blvd, #A208 Mondays, 1:00 - 2:00pm
Carlsbad: Indoor Waterworks Aquatics 2704 Gateway Road Tues & Thurs 11:45am - 12:45pm
Dana Point Dana Point Community Center 34052 Del Obispo Road Wednesdays, 8:00 - 9:15am Fullerton Friends in Christ Lutheran Church 2311 E. Chapman Avenue Wednesdays, 10:30 - 11:30am Huntington Beach Yoga Works 301 Main Street Wednesdays, 1:00 - 2:00pm Santa Ana Goodwill Fitness Center 1601 E. St. Andrew Place Fridays, 9:30-10:30am San Diego Addie’s Personal Training Studio 4440 Ingraham St. Sundays, 10-11am $5 per session
Balance & strength 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
Chula Vista: Outdoor Loma Verde Pool 1420 Loma Lane Thursdays, 12 - 1pm El Cajon: Outdoor/Indoor St. Madeline Sophie’s Center 2119 East Madison Avenue Mon, Wed & Fri 11:30am - 12:30pm Irvine: Indoor Arthritis Foundation Approved Class Waterworks Aquatics 25 Waterworks Way Tues & Thurs 10:30 - 11:15am
To attend any of the listed classes, a waiver is required. Please contact 800-344-4867 to request a waiver today.
in your neighborhood Carlsbad: Peace, Love, and Yoga 2588 El Camino Real, Suite O Thurs. 1:30-2:30pm Fee based Class. For more info please call 760-720-0619 or email ms@juliachenyoga.com Fullerton: Indoor Aquatics North Orange County YMCA 2000 Youth Way Mon, Wed & Fri, 9 - 10am $6 per session La Jolla: Yoga Scripps Memorial Hospital 9888 Genesee Avenue Thursdays, 9 - 10am $10 monthly fee Cardiac Rehab 858-626-6493 San Diego: MS FITT Addie’s Personal Training Studio 4440 Ingraham Street Fee-based class. Call 858-483-2711 for more information. San Diego: Pilates Comprehensive Therapy Service Inc. 5677 Oberlin Dr. Suite 106 Mandy Johnston 858-457-8419 $10 per class
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nationalmssociety.org | 1-800-344-4867
Mark your calendar
local events
Unless otherwise indicated, to register for any of the listed events, please visit http://calendar.MSpacific.org and select the date of the event, or call (800) 344-4867 (800-FIGHT-MS).
Kaiser MS Symposium
Annual SYCUAN Family Holiday Party
Saturday, November 1 Carlsbad Sheraton Resort and Spa Join Dr. Liz Spier and other MS professionals who will be discussing treatments and ways to maintain overall wellness. More information will be mailed in October!
Saturday, December 13 Golden Hall, San Diego Save the date for our annual holiday family gathering! Guests will be treated to a delicious catered buffet and enjoy a fabulous performance by a local high school song and dance group. More details will be included in the invite to be mailed in November.
UC Irvine Lunch and Learn: MS Care and Research Lunch and Learn Wednesday, November 19 11:00am – 1:00pm Join neurologist and researcher Michael Demetriou MD, PhD and Ardith Courtney, DO in partnership with the chapter for a lunch and learn. Meet the UC Irvine multiple sclerosis team and hear about the latest research outcomes. More details will be sent in October.
Turkey Delivery
On October 20th, we will begin accepting requests for turkey dinners or grocery gifts cards to registered persons with MS and their families who are either in financial need or have difficulty preparing a holiday meal. Thank you to Disney VoluntEARS for supporting this program.
Educational Scholarships APPLICATIONS WILL BE AVAILABLE SOON!
Enrollment for the 2015 National MS Society Scholarship program will open online between October 1, 2014 and January 15, 2015 for all qualified individuals who have MS, or have a parent with MS, and will be attending an accredited post-secondary school, for any year of undergraduate study. Special thanks to the generosity of the Volunteers In MS (VIMS), OL Halsell, the Walter and Betty Zable Foundation, and the Bob and Carol Memorial Scholarship Fund, who fund this valuable program.
For more information on the awards and criteria to apply, please visit nationalMSsociety.org/scholarship or call us at 1-800-344-4867 and press “1”.
12 RESEARCH
Focusing on progressive MS The achievements of Dr. Barry G.W. Arnason, the 2014 recipient of the Dystel Prize for Multiple Sclerosis Research, are many, and include such significant contributions as laying the groundwork for the development of immune-directed therapies and understanding how the different components of the immune system work in MS. However, some of his discoveries hold particular significance for people with progressive forms of MS.
Understanding progressive MS
Much MS research has focused on the role of T cells, which are a specific type of white blood cell that somehow become turn on the central nervous system and produce damaging inflammation. However, “I don’t think T cells have much to do with progressive MS,” said Dr. Arnason. “I think the problem is activation within the central nervous system of microglial cells, and that activation is the key to potential treatments of progressive MS.” Dr. Arnason made these comments in the opening lecture at the 2012 Annual Meeting of the Consortium of MS Centers in San Diego, while emphasizing that MS research focus more on progressive MS. Dr. Arnason’s research into progressive MS has also helped to uncover evidence that damage to the spinal cord leads to
MS connection: FALL 2014
the increased activity of certain docking sites on immune cells, suggesting a vicious cycle of immune changes, damage and increased immune activation. Along the way, he also contributed to the better understanding of other disorders such as Guillain-Barré syndrome and myasthenia gravis.
Training the future
Dr. Arnason is also planting the seeds for high-quality MS care in the future. His institution, the University of Chicago Medical Center, at which he is the James Nelson & Anna Louise Raymond Professor of Neurology, recently received an Institutional Clinician Training Award from the Society. These awards provide five years of funding to support the establishment of a world-class training program, thereby attracting the best MS clinicians over multiple years. The Dystel Prize is awarded awarded jointly by the National MS Society and the American Academy of Neurology. The award is made possible through a special fund established in 1994 by the late Society National Board member Oscar Dystel and his late wife Marion in honor of their son John Jay, an attorney whose promising career was cut short by progressive disability from MS. To learn more about Dr. Arnason and past Dystel recipients, visit nationalMSsociety.org/dystel.
nationalmssociety.org | 1-800-344-4867
AGENTS of change MISSION:
ELIMINATE MULTIPLE SCLEROSIS
Enjoy San Diego’s largest charity auction with over 700 live and silent items. Don’t miss out on this exclusive event with a gourmet dinner, live music and dancing! November 22, 2014 Loews Coronado Bay Resort MSdinnerauction.com
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DO-IT-YOURSELF FUNDRAISING
SWIMMING WITH THE SHARKS BY MEGAN O’NEAL, VOLUNTEER WRITER
It’s no secret that the National MS Society is a driving force of the change we have seen in research and treatments for MS over the years. The Society didn’t do this alone. Each year approximately 15,000 passionate individuals volunteer their time (and wallets) at events across the country to help stomp out MS. But did you know you can also create a Do-ItYourself fundraising event for the cause? This summer, devoted husband, Keith Padien, did just that! “My wife Christina was diagnosed with MS shortly after our honeymoon in November of 2008,” Keith explains. “We got involved with the Society after that, and participated in the Challenge Walk MS in 2009 and 2011. However, this year I wanted to splash things up a bit.” Already an avid swimmer with experience racing in several swim competitions, it was an easy decision combining his love of swimming and passion for MS advocacy. This past June, Keith raced against 228 other Sharkfest participants in a 1.6 mile swim under the Golden Gate Bridge, and he raised over $32,000 in the process!
Many event participants lament that raising funds is the biggest obstacle they face; and for these people, Keith shares a few insider secrets: • Fundraising is a “contact sport”-- the more touches/contacts you make, the more likely you are to raise money. Email everyone. • Send your email(s) at a time when the most people will be in front of their computers, that way they don’t read it from their phone and forget to donate later (mid-to-late Monday mornings seems to work best). • Thank everyone (non-donors included) with a final email after the event, and include your total fund-raising results and pictures showing how the event went. Keith encourages anyone who wants to raise money or awareness for multiple sclerosis to find a way to get involved. “Follow your passions,” he proclaims. “ If walking or biking for MS doesn’t get your heart pumping, join us DIY folks and create your own event! Your enthusiasm will be infectious, and I find people always seem happy to give to a good cause.” If you have a creative event to help raise money to fight MS, reach out to Krystal at krystal. thompson@nmss.org or 760-448-8434.
nationalmssociety.org | 1-800-344-4867
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WAYS TO GIVE
RIDING WITH HOPE BY MARLEIGH BROWN
When I was diagnosed with multiple sclerosis four years ago, I cried. I cried a lot. Not in public, and not in front of my three young children. But I cried privately, mourning the loss of the woman I once was. I was distraught and angry, and everything in between. Most of all, I was scared. Scared that MS was taking my healthy body and mind, and with them, my hopes and dreams. Yet today, in spite of those emotions, I also feel lucky. Lucky, because I have hope. To truly understand hope, I need to tell you a story about a special woman named Ida. I participate in Bike MS with her photo in my pocket. It was taken in April 1937 when she was just 23 years old–a beautiful girl, vibrant and alive. She had been spring skiing at Tuckerman’s Ravine, and is leaning on a clunker of a car facing into the sun. She’s wearing a halter top and shorts, and black boots with dark socks, which accentuate her strong muscular legs. She had an unruly mane of dark curly hair in those days. A talented painter, Ida had a funky style all her own. She smiled like a lady, but had her hand on her hip and her chin lifted, giving the camera a bit of attitude. This woman is my grandmother, but not the grandmother I knew. The picture was taken six months before she married and went on to become a mother of six. It was taken a whole decade before MS turned her life upside down, chiseling away at her hopes and dreams. Piece by piece. Attack by attack. With nothing to stand in its way. Ida’s diagnosis took a while without MRIs and the understanding of the disease we have today. At first, she didn’t tell anyone. But soon, she wasn’t able to hide her symptoms. Why did she choose to say nothing, to do nothing about her MS? Because there was nothing she could do. Because back then, there was nothing anyone could do.Back then, there was no hope.
A Million Reasons to Ride Become a 150 Club member by ranking among the top fundraisers with Bike MS and enjoy perks throughout the event including access to the VIP Luxury Lounge, commemorative 150 Club prizes and apparel, and much more! Our 2014 top five club members; Al Basso, Doug Peterson, John G. Most, Paul Dechary and Rona Kay have challenged club members to raise $1 million for this year’s event. To reach this goal, the leading fundraisers are asking that each individual commit to raising 10% more than they did in 2013. We are excited to see them hit this incredible milestone! Learn more about the 150 Club and their 1 Million Dollar Challenge at biketofinishMS.com.
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WAYS TO GIVE: Riding with hope (Continued) This is the grandmother I knew, the MS I knew. And the line was so blurred that they were one and the same. I even remember asking my father, if I was going to get MS someday. I don’t remember his exact words, but here we are today, thirty-something years later. I was diagnosed with MS at age 36—the very same age as Ida. The similarities in our stories are unnerving, but I focus on the differences in our stories instead. I am lucky that my doctors caught my MS early with the help of today’s This gives me hope that someday MRIs. And I am grateful for choices— soon we will find a way to end MS for the wide selection forever and repair the damage of medications available already done. With this hope, we to slow progression may all be scripting a different by injection, infusion, even oral pill, and also ending to our stories. for the drugs to manage symptoms and attacks. All of these treatments were only discovered in the last two decades, and over half were discovered in the last decade alone. This gives me hope that someday soon we will find a way to end MS forever and repair the damage already done. With this hope, we may all be scripting a different ending to our stories. When one of my children raises that dreaded question, “Mommy, am I going to get MS?” I hope to answer with conviction, “No. Absolutely not.” Hope is a beautiful thing. And today we have hope. Hope that my grandmother didn’t have. And hope that all of our children will know a world free of MS. These Opening Remarks were delivered by Marleigh Brown at the 2013 Bike MS Cape Cod Getaway. To get involved at Bike MS this October 18 & 19, call us at 800-486-6762 or visit biketofinishMS.com.
TOUR OF CHAMPIONS hosted by La Casa del Zorro March 20-22, 2015
We are excited to announce our Tour of Champions date and location! Bike MS participants raising $10,000 or more earn an exclusive cycling adventure! Many thanks to our sponsor, La Casa del Zorro, for underwriting the accommodations to allow us to host this event! You can learn more in person at the Bike Tour in October or by visiting biketofinishMS.com.
VOLUNTEERS NEEDED!
It’s not too late to get involved as a volunteer at Bike MS! We have positions available from Irvine to San Diego all weekend! Sign up at biketofinishMS.com or contact Linda at 760-448-8416 or linda.ingram@nmss.org.
nationalmssociety.org | 1-800-344-4867
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SUPPORTING THE MISSION
ANGELS ON EARTH The Angel Visitation Program provides emotional support and companionship to those living with MS. Angels are friendly, kind-hearted volunteers who generously dedicate their time and effort by bringing cheer to people living with MS. Individuals are matched up with a friendly volunteer who will visit once a month. Some activities enjoyed with the Angels may include reading, visiting, arts and crafts, or a leisurely walk. If you would like more information on becoming an Angel Volunteer, or would like an Angel to visit you, please contact Katie Freiert at 714-689-9601 or katie.freiert@nmss.org.
DONATE YOUR TIME
BE A PART OF OUR VOLUNTEER CALL TEAM (All from the comfort of your home!) With a goal to create an exceptional customer service experience for our members, event participants, donors and everyone involved in the Society we are developing a Volunteer Customer Service Call Team. If you have a friendly phone voice, want to work from home or at the office, are available for training, and enjoy talking to people, we want YOU to join the team! Our goal for the Volunteer Customer Service Call Team is to make phone calls to our supporters to thank them for their donation, ask if they will participate in an upcoming event, inquire about their volunteer interest or confirm their attendance at one of our upcoming events. We will not be making cold calls or asking for donations, as each individual being contacted has had prior participation with our chapter and the MS cause. For more information please contact Linda at linda.ingram@nmss.org or 760-448-8416.
Office volunteer, Isabelle Norconk.
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MS connection: FALL 2014
LIVING WITH MS
November is national family caregiver month! We recognize the loving efforts of family caregivers all year long; however, 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.
Family Respite Care Program As a family caregiver it is important to take good care of yourself. We partner with local Caregiver Resource Centers to offer the gift of time to family caregivers to do just that. Through our Family Respite Care Program, 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 costs, on a first-come, firstserve basis. This program may be just what you need to help improve the health of your whole family. For more information, call 1-800-344-4867 and press “1.�
If you or someone you know is caring for a loved one with MS, here are some resources you should know about: 1. Caregiver Resource Centers: Your local Caregiver Resource Center offers various types of support from educational workshops to legal or financial consultation, all to support the various needs of the family caregiver. 2. Connection Groups: Engage in the opportunity to share and learn with others in a family caregiver role by participating in a MS caregiver connection group. The chapter offers professionally-led support groups designed to provide emotional support and resources for those caring for a loved one with MS. See page 8-9 for dates, times and information. 3. Online Resources for Support: Learn, share and connect with other people affected by MS at our online community by visiting MSconnection.org.
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
WE DID IT! $1.6 million RAISED AT WALK MS! Thank you to all of our 2014 event participants for reaching our fundraising goal! We are so proud of everything our walkers, virtual walkers, sponsors and volunteers did through the campaign to reach our goal. Check out our incredible top teams and fundraisers who helped make this happen! TOP FUNDRAISERS BY SITE Dick & Lynn Gordon - $73,400 (Carlsbad) Bill & Kristi Bisch - $31,760 (Irvine) Paul & Mary Smigliani - $20,700 (San Diego) OVERALL TOP TEAMS Mission Possible ($25,000+) Team Dick Gordon - $73,400 (Carlsbad) Team Momentum - $35,015 (Irvine) Uncle Phil’s Feat with UltraStar Cinemas - $29,266 (San Diego)
SAVE THE DATE FOR WALK MS 2015! April 4: University of California, Irvine April 25: NTC Park, San Diego TBD: LEGOLAND® California Resort Registration for Walk MS will open November 1, 2014 at MSwalk.com.
DIVISION WINNERS Division 1 (100+ team members) SDG&E/Sempra - $23,092 Team SDCCU - $14,334 Turkey and Friends - $1,098 Division 2 (50-99 team members) Team Receptos: Changing Lives One Step at a Time - $21,361 Sunrise Strides - $10,007 Fullerton Neurology MS Walkers - $5,704 Division 3 (26-49 team members) Team Momentum - $35,015 Team Evans - $18,450 UCSD MS Center - $11,783 Division 4 (11-25 members) Uncle Phil’s Feat with UltraStar Cinemas - $29,266 American Flyers for MS - $20,739 Natashas Superstars - $10,081 Division 5 (4-10 team members) Team Dick Gordon - $73,400 Team Smig - $20,771 Pam’s Pearls - $7,912
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MS connection: FALL 2014
ADVOCACY
Join the MS Activist Network In recent months, MS activists across the nation persistently urged Congress to increase funding for the MS Congressionally Directed Medical Research Program (CDMRP). More than 7,000 emails were sent to Capitol Hill, MS Activists met with more than 300 congressional offices and thousands of tweets were sent about the importance of the MS CDMRP. These efforts made a huge difference and resulted in the U.S. House of Representatives approving a record $10 million for the MS CDMRP. Every August, members of Congress return to their home states and hold town hall meetings with constituents. MS activists take this opportunity to build relationships with their U.S. Senators and Representatives. This year, MS Activists in Orange and San Diego counties urged their members of Congress to continue funding for the National Institutes of Health (NIH) and Multiple Sclerosis Congressionally Directed Medical Research Program (CDMRP) to help prevent, treat and find a cure for MS, as well as ensure that the U.S. Food and Drug Administration (FDA) has enough resources to meet its goals of protecting the public’s health. Representatives were also urged to pass the Ensuring Access to Quality Complex Rehabilitation Technology Act (S. 948/H.R. 942) that would create a separate benefit category under Medicare for complex rehabilitation technology (CRT), protecting access to these customized products
so that people with significant disabilities can have their medical needs addressed while remaining independent. You can be an MS activist too! Join the MS Activist Network to receive updates on policy affecting people and families with MS. We’ll email you when policy or legislation calls for your immediate action – usually an easy email to your public officials. Every action and connection counts and can facilitate positive change. To join the MS Activist Network contact Aarushi at aarushi.malhotra@nmss.org or 714-689-9613.
TWEET! TWEET!
Follow MS advocacy on Twitter @CA_MSactivists!
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nationalmssociety.org | 1-800-344-4867
Have you ever dreamed about running/walking a marathon or half marathon? What about a relay with some friends? We can help you make it happen! Join the MS Rockstars at the San Diego Rock ‘n’ Roll Marathon on May 31, 2015.
Learn more by visiting MSrockstars.com Become A Member Of
CONNECT WITH US ONLINE! facebook.com/MSpacific instagram.com/pacsouthcoastMS youtube.com/MSpacific
Watch Our Video At www.fredd.info
Learn how “FREDD” can save your life! * E-mail your medical and contact information.
Download the free “FREDD” app MS Society Promo Code MSSC
Contact Us Ph: 760-585-7060
www.fredd.info
PA I D ADVERT I SE M ENT
* Contact your doctor or pharmacy with a simple tap.
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PA I D ADVERTI SE M ENT PAID ADVERTISEMENT
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PA I D ADV ERTI SE M ENT
Pregnant and have Multiple Sclerosis? A few questions you may have... Will MS affect my developing baby? Is my MS medication o.k. to take during pregnancy or while breastfeeding? MotherToBaby counselors provide up-to-date, evidence-based information for no charge about: • Prescription and over-the-counter medications. • Infections and diseases, like MS, and more... Help us help you learn even more about MS during pregnancy. The Autoimmune Diseases in Pregnancy Research Study needs pregnant volunteers today to help provide answers for tomorrow. To get your questions answered about MS medications during pregnancy or to learn about volunteering for an observational study, call toll-FREE (877) 311-8972 or visit PregnancyStudies.org. MotherToBaby Pregnancy Studies are conducted by the Organization of Teratology Information Specialists (OTIS). OTIS and MotherToBaby are suggested resources by many agencies including the Centers for Disease Control and Prevention (CDC).
Find us on: @MotherToBaby
Friday, September 26, 2014 6:00 PM Pacific
Bellefleur Restaurant 5610 Paseo Del Norte Carlsbad, CA 92008
TR267468 (1164477)
Revere Kinkel, MD Director of the MS Program, UCSD San Diego, CA MS Ambassador
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 5-7: 17: 17: 27:
Challenge Walk MS Scripps Lecture Series: Below the Belt Boy’s Night Out San Diego Office Volunteer Day
October 4: 8: 11: 18-19:
Moving Forward: Program for the Newly Diagnosed Scripps Lecture Series: Managing Cognitive Challenges Family Fun Day at Knott’s Berry Farm Bike MS Bay to Bay Tour
November 1: Kaiser MS Symposium 12: Orange County Office Open House 18: Teleconference: Tips for People with MS & Their Partners “Planning for the Future” 19: UCI Lunch & Learn 20: Teleconference: Tips for People with MS & Their Partners “Planning for the Future” 22: MS Dinner Auction
December 13:
Annual Sycuan Family Holiday Party