WINTER 2016 Pacific South Coast Chapter
MS Connection Newsletter GET INVOLVED IN ANY NUMBER OF WAYS!
INSIDE 03 THIS ISSUE
The challenge of a lifetime
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mark your calendars for upcoming events
have a voice in MS research
donate today for a year-end tax deduction
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MS connection: WINTER 2016
letter from the President
a year to celebrate As the year comes to a close, We’d like to take some time to reflect on the remarkable accomplishments we made together:
Farmers insurance open We are seeking volunteers for the 2016 Farmers Insurance Open Golf Tournament to work at concession stands January 27 - 31, 2016 at Torrey Pines Golf Course! Partial proceeds benefit the Pacific South Coast Chapter for research, programs and services. Sign up to volunteer today! Mark Mahigian mark.mahigian@nmss.org
Connect with us online: MSpacific.org Like us: facebook.com/MSpacific Watch us: youtube.com/MSpacific On the Cover: You can get involved in so many ways at the chapter! Keep reading this quarter’s edition to learn more about how you can use your talents and passions to help further our mission.
• Thousands connected and raised funds at special events throughout the year. Together, we walked, cycled, danced, and trudged through an obstacle course of muck with a common goal...to change the world for people affected by MS. • MS Navigators continued to connect more than 200,000 people across the country with answers and critical resources needed to ensure each person with MS can live their best life. • Your support of the NOW MS Research Campaign accelerated vital progress unlike any other time in history towards stopping MS, restoring lost function and ending MS. This progress is essential to changing the world for everyone living with MS and will continue in 2016 with a bigger, bolder funding platform that will drive our entire mission. • More than 75,000 activists across the country united and shared their collective voice to make impactful policy changes, secure crucial government research funding, and drive change wherever it is needed. Congratulations and thank you for your countless contributions. Together, we will ensure that people are surrounded with the resources and support they need to move forward and be more powerful than the challenges of MS. Together, we are stronger! Warm wishes this holiday season,
Richard V. Israel, Chapter President Cynthia Perazzo, Board Chair
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nationalmssociety.org | 1-800-344-4867 challenge walk
FUNDING THE MISSION
the challenge of a lifetime
Nearly 200 supporters joined us at Challenge Walk MS. This amazing group raised over $650,000 for MS while creating awareness over their 3-day journey.
Challenge Walk MS is the perfect way to connect with others in our community who are passionate about ending MS. Join us in 2016. Learn more at myMSchallenge.com or call 800-486-6762. n
Congratulations to the teams that raised over $25,000 this year: Gold Team ($50,000-$74,999) Hurt SO Good! $61,688.83 Silver Teams ($25,000-$49,999) Aye, Aye Captain $44,695.50 Team Momentum $41,635 Tough Kitties $40,229.12 NorCal Streetwalkers $34,876 w/ Good Carma Check out our Elite Feet Top Fundraisers, each raising over $10,000! Anne Allen $25,490 Jeanne Woodard $17,600 Brian Grey $13,283 Joyce Savage $10,420
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: Christine Wiley Associate Editor: Leslie Roach Associate Designer: Nare Ovsepian © 2015 National Multiple Sclerosis Society, Pacific South Coast Chapter
Joyce (pictured center in orange shirt with her team -- the “Amen Sisters”) was diagnosed with primary progressive MS in 1994. In 2008 she did her first Challenge Walk. When people ask why she walks 50 miles, she replies “In the words of Mother Teresa, “Life is a challenge, meet it.” I walk for those friends of mine who can’t.” Joyce and her team have raised $100,878 to date.
Thank you to our 2015 Sponsors! BRAND DEVELOPMENT ADVERTISING
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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 2016
FUNDING THE MISSION
La Fete de la Cure is a Big Success! Nearly 650 people attended the 29th Annual MS Dinner Auction “La Fete de la Cure” sponsored by Mitsubishi Motors on November 21 at the Loews Coronado Bay Resort. Over $500,000 was raised to support the National MS Society’s Mission! This ritzy affair included a delicious four-course dinner, Parisian themed entertainment, dancing to band favorites The Heroes and dazzling attire. Over 600 auction packages were featured including luxury cruises, trips to Costa Rica and Puerto Rico, domestic vacations to Hawaii and Florida, entertainment packages, a beautiful collection of jewelry by Leo Hamel Fine Jewelers, lavish wine experiences, memorabilia and so much more. An incredible video was shown during the evening featuring long-time member and supporter, Negar Niazi, and her life with multiple sclerosis. The video also highlighted the incredible MS research occurring throughout the world to stop disease progression, restore lost function and ultimately end multiple sclerosis forever. The audience was incredibly moved by this
presentation as they honored Negar with a standing ovation followed by pledges to continue to support those affected by the disease and continued research to find a cure. Thank you to all who attended and supported this incredible evening. Merci Beaucoup! Visit MSdinnerauction.com to see pictures from the event. Don’t forget to follow us yearlong on Facebook at www.facebook.com/ MSDinnerAuction to get updates, auction item previews and much more! Are you interested in getting involved with this event in 2016? Consider joining the Auction committee, sponsoring the event, or purchasing a table. For more information, contact Heather Dean at 760-448-8417 or heather.dean@nmss.org. n
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nationalmssociety.org | 1-800-344-4867
funding the mission
SAVE THE DATE for Walk MS 2016! Irvine 2016
Saturday, SPONSORED BY April 16, 2016 Armada Drive Carlsbad, CA
Saturday, April 30, 2016 University of California Irvine, CA SPONSORED BY
THE NIGHT WALK IS BACK! Join us for an evening stroll starting at a 5pm on Armada Drive to enjoy the sunset over the Flower Fields. Saturday, April 23, 2016 NTC Park at Liberty Station San Diego, CA
Not only is San Diego County Credit Union the title sponsor for the San Diego and Carlsbad events, their Walk team took a stand against MS at Walk MS 2015 with 121 team members raising $11,503! San Diego County Credit Union was founded on the principle that people come first and profits second. This forward-thinking approach in the banking industry has propelled SDCCU to become San Diego’s BEST Credit Union and largest locally-owned financial institution. We can’t wait San to have them back for Walk MS 2016! Diego/Carlsbad 2016
Join us in welcoming back Fish & Tsang, our Walk MS Irvine title sponsor. Fish & Tsang is a premier intellectual property law firm. In their first year as a team, they walked with nearly 40 members and were a Top Fundraising team! In addition to Walk MS, Fish & Tsang teams participated in Bike MS and MuckFest MS. We are thrilled to have them back and look forward to seeing team Fish & Tsang at the 2016 Walk!
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MS connection: WINTER 2016
Living with ms
Stories of a father By Theresa Moore
Fraser Robinson III never let multiple sclerosis get in the way of living a full and meaningful life. That attitude is part of the legacy he left to his two children, ESPN broadcaster Craig Robinson and First Lady Michelle Obama. “People ask me all the time, ‘What did your parents do?’ and they look at my sister Michelle, and they look at me. I tell them our parents never held us back. They never let MS hold us back.” Robinson told this story to 700 guests at a fundraising luncheon for the National MS Society that raised $350,000 for research, programs and services for people affected by MS. The elder Robinson was diagnosed with MS when Craig and Michelle were very young. Although their father walked with a pronounced limp that progressed over the years, they never thought of him as being anything less than fully able to work, play and enjoy life. Regaling the crowd with anecdotes of growing up with Michelle - “a health nut, even back then” - Robinson recalled that his dad never missed more than a few days working the swing shift at the Chicago Water Department and was always there as a steady presence in his
Craig and Michelle with their parents, Fraser and Marian family’s lives. “I do not know where I would be if I hadn’t seen my dad battle this disease with such courage and with such grace. I don’t know who I would be,” he said. “In a funny way, MS has had a profoundly positive effect on my life.” n Theresa Moore is a regular volunteer for the Society. Originally published in Greater Northwest’s MS Connection newsletter. The National MS Society’s Family Matters group at www.MSconnection.org is an online community for everyone - children, brothers, sisters, parents or other relatives of people with MS - who are affected by life with the disease. Visit www.nationalMSsociety.org and search for “Family Matters,” or call 1-800-344-4867, to access videos, care partners guides, and a range of materials for children and teenagers affected by MS.
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).
Mark your calendar
local events together we are stronger: Annual Meeting of Members Saturday, January 30 Laguna Cliffs Marriott 25135 Park Lantern Dana Point, CA 92629 See page 11 for more information.
Moving Forward: Program for the Newly Diagnosed Saturday, February 20 8:30am–1:00pm Embassy Suites 1325 E. Dyer Road Santa Ana, CA 92705 If you have been diagnosed with MS in the last three years, this is a program designed for you. Learn about treatment options and the emotional and physical aspects of MS from community experts in the respective fields.
The Annual san diego MS Symposium Saturday, March 5 Doubletree Mission Valley 7450 Hazard Center Drive San Diego, CA 92108 Dr. Jody Corey-Bloom from UCSD and Dr. Regina Berkovich from USC will share the latest information about symptom management, MS treatment and research.
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Online Programs Online Newly Diagnosed Program Every other month starting in January from 6:00-7:00pm Web & Teleconference http://quickconnected.com/web/index.html A diagnosis of MS can create many unexpected emotions that leave you with a strong need to understand the changes you are facing. This web based program will be conducted by Dr. Elizabeth Crabtree, Assistant Clinical Professor of Neurology at UCSF and Director of Patient Program Development at UCSF’s MS Center. A phone and computer with internet access will be necessary to join this program. To register, please call 1-800-344-4867 (1-800-FIGHT-MS) and press “1”. Can Do Multiple Sclerosis Webinar Series Can Do Multiple Sclerosis Webinar Series teaches people with MS to focus on what they ‘can do’ in life instead of what they cannot, empowering them to live fuller, more productive lives. This unique opportunity offers interaction with a team of Can Do MS consultants to ask questions and learn how to adopt healthy lifestyle behaviors, actively comanage your MS and live you best life. To register, view upcoming monthly webinars, or see archived webinars, log on to www.mscando.org.
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MS connection: WINTER 2016
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 self-esteem 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 EspaĂąol Familiares y amigos bienvenidos. La segunda martes de cada mes. Anaheim Adventist Church 900 S. Sunkist St, 6:30 - 8:00pm Rosa Ferreras 714-758-0829 rosam58@me.com Susana PĂŠrez 714-235-7570 sueperezg@yahoo.com Brea 1st Friday, 10:00am - 12:00pm Jim Langdon 714-392-2052 langdon.james1942@gmail.com Lisa Seifert 714-757-8492 mcbryde99@hotmail.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 Irvine: Walkers & Rollers 2nd Wednesday, 10am - 12pm Bonnie Richmond 949-677-4272 sambon@pacbell.net
San Juan Capistrano Caregivers Only Group 1st Tuesday, 6pm-7:30pm Gloria Poteete 949-291-2007 glori77@cox.net
Laguna Hills 1st Tuesday, 10am - 12pm Francine Grasso 949-278-6935 frannydo@gmail.com Karen Harlas 949-498-9583
Corona Del Mar: Minimal Symptoms/Newly Diagnosed 3rd Wednesday, 1:30 - 3:30pm Sherri Brash 714-846-2064 Sherri1022@gmail.com
Lake Forest: MS with Christ 3rd Monday, 6:30 - 8:00pm Cathy Varela 949-842-2296 David Corich 949-470-9020
Dana Point: Early MS 4th Thursday, 10:00am - 12:00pm Jerry Dowd 949-584-4619 gtdowd@gmail.com Susan Watson 949-493-1299 susanwatson2010@gmail.com
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 hap.bruce@aol.com Santa Ana: Man to Man 1st Wednesday, 10am-12pm Mike Milne 949-215-8502 mcmilne@cox.net Stanton 1st Tuesday, 12:30 - 2:30pm Rosa Ferreras 714-758-0829 rosam58@me.com Yorba Linda: Family & Friends Welcome 2nd Monday & 4th Friday, 10:00am - 12:00pm Kathy Kelby 714-525-0686 kkacacia@aol.com Rob Lammers 714-528-8404 robert.retired@hotmail.com Young Adult Group: Young and Strong Together 2nd Wednesday, 6:00pm-7:30pm Ashlee Gallard 805-914-8434 abg_1193@yahoo.com Christy Horning 760-485-3174 christy.horning@yahoo.com
nationalmssociety.org | 1-800-344-4867
SAN DIEGO
Chula Vista St. Marks Lutheran Church 580 Hilltop Dr. 3rd Wednesday, 11am - 1pm Adriana Flores 619-656-8098 font.ra@gmail.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 Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido Joslyn Senior Center, Room 5 210 Park Avenue 3rd Wednesday, 1 - 3pm Michele Easterling 760-805-6390 m.easterling68@gmail.com Escondido: Christian Group HopeKeepers Escondido 4th Saturday, 11am - 1pm Cross Connection Church 1675 Seven Oakes Rd. Room 4 Jim Johnston 619-933-6523 hopekeeperjim@gmail.com Oceanside Oceanside Library 3861 Mission Avenue 2nd Wednesday, 12 - 2pm Juanita Hamilton 760-754-1911 juanita.h@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, 6:00pm Mike Kolender 858-274-7114 Marcus Brown 619-248-2667 San Diego (Mid-City) Kaiser Education Center San Diego 10990 San Diego Mission Road 4th Monday, 2:00 - 3:30pm Jane Schnabel 619-758-9470 jane.schnabel@sbcglobal.net Linda Knapp 858-273-7835 chemobrain@san.rr.com
Meet a Connection Group Leader: lisa seifert
9 Spring Valley New Seasons Church 2300 Bancroft Drive 2nd Saturday, 12:30 - 2pm Angela Kretschmar 619-303-7806 gela0726@gmail.com Young Adult Group - San Diego San Diego Young Adults #SDYAMS Mission Valley Library (Seminar Room A) 2123 Fenton Pkwy 2nd Wednesday, 6:30 - 8:00 pm Austin Aaro 760-443-5845 austin1472a@gmail.com Jessica Ford 301-775-0253 jess_534@yahoo.com
professionally-led CONNECTION groups Where Do I Go From Here... A Group for Sharing & Learning 2nd Tuesday of Every Month 10:00am - 12:00pm Facilitator: Debbie Hornstein, MSW Neighborhood Community Ctr 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
Lisa was diagnosed with MS in 1999 and continued to teach full-time until 2006. She was given an opportunity to become a co-leader for the Brea Connection Group and continued to teach others with MS. In 2014 she started Team Snowflake, in addition to the Brea Connection Group to participate in Walk MS and raise money to end MS forever. Lisa enjoys attending chapter programs and events, and she does not miss any opportunity to share MS resources and information with others.
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MS connection: WINTER 2016
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
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
living well with ms
Resources for the holiday season The holidays can be a festive time to celebrate with your loved ones but to some with limited income, the holidays can be filled with stress. If you or someone you care about is in need of help around the holidays, reach out to your local 2-1-1 resource and information center to get connected to holiday assistance programs available in your area. Services including holiday meals, gift baskets and even toys for children may be available to individuals and families in need. 2-1-1 is a resource and information center that connects people with their community
health and disaster services through a free, 24/7 phone service and online database. It’s a valuable community resource for the holidays and much more. See below for an office that serves you: San Diego County 858-300-1300 www.211sandiego.org Orange County 949-646-4357 www.211oc.org
save the date
Annual meeting of members Saturday, January 30 Laguna Cliffs Marriott, 25135 Park Lantern, Dana Point, CA 92629 As a member of the chapter, you are invited to participate in our Annual Meeting of Members. This year, our theme is “Together We are Stronger.” This statement describes what the MS movement is about. All of us coming together—sharing experiences and knowledge and contributing all that we can. We will recognize outstanding volunteers, elect our Board of Trustees, review our annual report, and learn from a panel of local MS experts about their work leading us towards a world free of MS. Panelists include Dr. Corey-Bloom from UCSD, Dr. Barbara Ranscht from the Sanford Burnham Prebys Medical Discovery Institute, Dr. Ardith Courtney and Dr. Craig Walsh, both from UCI. Learn more, register or submit your proxy vote at http://annualmeeting.MSpacific.org. n
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MS connection: WINTER 2016
RESEARCH
Have a voice in MS research Today, there are more options than ever before for people with multiple sclerosis to help drive MS research. They can choose to participate in clinical trials, donate DNA through blood samples, or complete health surveys. No matter where they live, what their background is, or what stage of the disease they are in, people with MS are at the heart of MS research. Here are some of the ways you can make your voice count.
Participate in clinical trials From testing a potential new therapy for MS to trying an exercise program to help manage symptoms of fatigue or spasticity, people with MS who participate in clinical trials make it possible to bring new medications and symptom-management strategies from the lab to their doctor’s office.
Who knows more about MS and its diverse impacts on life than people who live with this disease every day?
“The willingness of people with MS to participate in research studies and clinical trials is vital to understanding the complexities of the disease and to developing better treatments,” says Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society. “They are the experts - who else knows more about MS and its diverse impacts on life than people who live with this disease every day?” In fact, researchers are increasingly looking at “patient-reported outcomes,” gathering information directly from individuals participating in studies to better capture how a treatment makes people feel. For more information on how to participate in current clinical trials, visit www. nationalMSsociety.org/clinicaltrials or search www.clinicaltrials.gov for ongoing MS research.
nationalmssociety.org | 1-800-344-4867
NARCOMS: Data that counts Participating in the North American Research Committee on Multiple Sclerosis, or NARCOMS, is another way people with MS can express their willingness to participate in MS research. Since its founding in 1993, more than 37,500 people with MS across the globe have joined its registry and more than 80 papers with research results utilizing data provided by participants have been published. Anyone with a diagnosis of MS can participate in NARCOMS. Visit www.narcoms.org to learn more.
iConquerMS™: Ask those with MS “If you want to know what it is like to live with MS, or how different lifestyle choices impact a person’s quality of life, or what questions people with MS are most interested in exploring, you ask those living with the disease,” says Lisa Emrich, a Washington, DC-based writer and blogger who was diagnosed with MS in 2005. Emrich is one of the first to sign up to participate in a new initiative, iConquerMS™, a unique patient-centered data collection system that allows people with MS to safely and securely share their health information and ideas for MS research with MS researchers nationwide.
13 If you want to know what it is like to live with MS, you ask those living with the disease. Through its online portal at www.iConquerMS. org, people with MS can share their health information and ideas about research. MS researchers can then use this shared data to find patterns in the disease that may not be visible otherwise, opening the potential to identify causes of MS, determine who will respond best to what therapy, and find new improved treatments for the disease. iConquerMS™ is focused on research topics driven by people with MS, and governed by people with MS at every step of the process. As part of a larger nationwide research network called PCORnet, iConquerMS™ contributes health data to many research efforts, while also providing MS researchers access to data from millions of people across the country. n To learn more about the many ways you can help drive MS research forward, visit www.nationalMSsociety.org/Research/ Participate-in-Research-Studies or call us at 1-800-344-4867.
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Transportation options By Myra Gray, MSW, LSW
Don’t let multiple sclerosis keep you from getting where you need to go, whether to a medical appointment, the grocery store or a restaurant for a dinner with friends. If you no longer drive because of MS symptoms such as vision issues or spasticity, there are other options for transportation if you know where to look.
Reach out The first place many people with MS look for help with transportation is their own social network. Don’t be afraid to ask friends and family members for a ride: often they are happy for a chance to help out and spend time with you. And they can always say no if it’s inconvenient for them at the time. (In which case, try rescheduling!) If an appointment is ongoing—a weekly visit to a physical therapist for instance—you might arrange a regular trip with a friend or family member. Sweeten the deal with an offer to pay or split the cost of gasoline, for instance. Even treating the driver to a cup of coffee can help. Other opportunities to access a ride or joining a carpool may exist in your community, including places of worship, community centers and service organizations. Ask your healthcare providers if they might know of other patients who drive or a carpool that can help get you to their offices.
MS connection: WINTER 2016
Go public Typically, the most affordable way to get around is public transportation, which can include bus routes, subways or light rail services. A good place to start Explore your area’s accessible exploring your city public transportation options. or county’s public transit system and its accessibility options is www. publictransportation.org. Here, you can search by state for what’s available near you. Or you can visit the American Public Transportation Association’s website at www.apta.com/resources/ links for a list of public transit websites for all 50 states, Washington D.C., and Puerto Rico. The Americans with Disabilities Act (ADA) requires that any transportation provided to the general public must be available to people with disabilities. The ADA also requires all public transit agencies to provide paratransit services to people who cannot use fixed-route public transportation because of their disability. The Easter Seals Project Action project, a partnership with the U.S. Department of Transportation, Federal Transit Administration, was commissioned in 1988 to improve access to public transportation for people with disabilities. Their website at www. projectaction.org offers a wealth of information on how people with disabilities can use public transit systems confidently and safely.
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nationalmssociety.org | 1-800-344-4867
More options Some health insurance companies may provide transportation or cover costs of transportation to and from medical appointments. Check with your health insurance company to see what they offer. In addition, most individuals enrolled in Medicaid (Medi-Cal in California) are eligible for transportation to and from medical care. Learn more at www.medicaid.gov. In general, before you call to arrange transportation through your insurance company or Medicaid, follow these tips: • Have your member ID number ready • Have the address for pick up and the address of your destination ready • Know the time and date of the appointment • Specify if you will need a lift or if you need a cab • Specify if you’re bringing someone with you If you don’t get the answer you are looking for, ask who else you can contact. This goes for any service you’re inquiring about. Often times, agencies can offer additional information even if they can’t provide the specific service. Visit www.disability.gov/resource/disabilitygovs-guide-transportation for additional transportation resources and to learn your transportation rights as a person with a disability. The National MS Society may be able to help connect you with transportation-related resources, as well. Call an MS Navigator at 1-800-344-4867. n
Myra Gray, MSW, LSW, is an outreach specialist for the National MS Society. Originally published in Ohio Buckeye’s MS Connection newsletter. If you are someone who has a disability and is unable to use the bus or rail services in your community without assistance, you may qualify to use the ADA paratransit services. In order to access these services, you must apply and become certified. It may take up to 21 days to complete the eligibility process for ADA paratransit. For more information or to fill out an application, please contact the transportation authority listed below in your area.
San Diego County
(LIFT operated by North County Transit District/MTS Access operated by Metropolitan Transit System) 1-877-232-7433 or online at www.adaride.com
Orange County (Access operated by Orange County Transit Authority) 714-560-5956 or online at www.octa.net Eligible members with MS may qualify for financial assistance through the chapter to obtain transportation voucher booklets (10 trips) every 30 days. Call 1-800-344-4867 option ‘1’ for more information.
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MS connection: WINTER 2016
Advocacy
Having a say By Brent Kirkhart
After my diagnosis with multiple sclerosis in 1997, I knew that I would be faced with obstacles, but didn’t know when they would occur or what they would be. I was a schoolteacher and coach, a former college athlete and father of two daughters. In my mind, I was still invincible.
your family — a home that can help you live your best life despite MS.
Your best life — despite MS
A home for us
In 1999, my son was born and, like most fathers, I dreamed of the day I would get to run alongside him while teaching him how to ride his bike. That day came four years later. I placed my hand on his back and together we took off down the street ready for his first ride, or so I thought. My legs simply would not move. My son fell over on his bike and I could not run to help him. That was the moment I realized that MS was going to affect me more than I had anticipated. It had slowed me down and tainted a moment that I had looked forward to for years.
For years, we lived in a California style split-level ranch house that had four flights of stairs. We loved our home, but it was not a safe space for me to navigate. The doorways were not large enough for my chair, the stairs were difficult to climb and falls were frequent and dangerous. I was limited to life on the first floor.
My son is now 15 and all he’s ever known is a dad who has MS. He and his sisters, along with my wife, have grown into MS advocates who have attended State Action Day in Kansas as well as Walk MS events for almost two decades. Having the support of your family at home is important, but so is physically having a home that can support
Brent Kirkhart advocates for positive change.
We bid adieu to our family home last year and prepared to make memories in a new space. Upon arriving, I found out that my family and church had pitched in to build a small ramp at the entrance of our home so that I could cross the threshold in my chair with ease. In addition, we installed handrails on the shower, replaced the tub with a walk-in shower, installed a larger stool and widened the door to the master bathroom so that my chair could fit through the door. I didn’t think we would fall in love with a house like we loved our last home, but we did! For the first time in several years, I could finally move around to every corner of our home without relying on assistance.
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nationalmssociety.org | 1-800-344-4867
A way to take action Knowing my story, the National MS Society reached out to me about moving forward with a home modification tax credit bill known as the Kansas Disabled Access Tax Credit. Last year, I was asked to speak and tell my story at Kansas MS Action Day. Not only did I get to speak in front of fellow MS activists, but I was invited to speak in front of the Senate State Tax Committee. As I spoke, I looked around the room and was overwhelmed by the concern and “want to help” expressions on the faces of committee members. The president of the committee took the floor and said, “We don’t usually do this, but I want to move this bill forward and vote right now to move this out of committee.” The group voted unanimously to do so.
Staying the course Sadly, the bill did not move to the House before the session ended that year. During the interim time, I made it my mission to get to know the state representative of my previous home’s district. As the new legislative session began, he and his colleagues made sure to get the bill moving and made it retroactive so that people who made modifications in 2013 could benefit as well. It was passed in 2014 through both houses and signed into law by the governor. It was exhilarating! It’s common knowledge that home modifications serve people living with disabilities — but home modifications
also serve their families. Being able to make these modifications has given my family the comfort of knowing that I am safe. They know that together we can live in this house longer — as a family. n Originally published on MSconnection.org/blog. Brent Kirkhart was diagnosed with MS in 1997 and is a member of the Society’s Government Relations Committee for the Mid America Chapter. California MS Activists are exploring the feasibility of introducing or advocating for a Home Modification tax credit here in California but given the Governor vetoed nine tax credit bills passed by the Legislature in the 2015 Legislative session; therefore, we are exploring other means of helping home modification assistance for those in need. In just a few clicks, you can also email your public officials about why an issue is important to you and drive change by joining the MS Activist Network. If you are interested in becoming a member of the Government Relations Committee in California, please contact Aarushi Malhotra at 714-689-9613 or aarushi.malhotra@nmss.org. Learn how to have your say and become an MS activist at www.nationalMSsociety.org/ advocacy.
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MS connection: WINTER 2016
FUNDING THE MISSION
Help us reach our $2.5 million goal for bike ms! Over 1,800 cyclists and 500 volunteers joined us on October 17 & 18 for the Bike MS Bay to Bay Tour, presented by Hansen Beverage Company and sponsored by KTLA 5 and Fox 5 San Diego. Participants have raised more than $2 million thus far and are well on their way toward reaching our $2.5 million goal! You can help us achieve this incredible goal by donating at www. biketofinishMS.com! This is why we ride: Meet Derek Chalmers Every year, we honor someone living with MS who participates in Bike MS as the Lloyd von Sprecken Most Inspirational Rider. The Lloyd von Sprecken Most Inspirational Rider Award was created in honor of Lloyd and his family’s determination to create a world free of MS. Lloyd, who lives with MS, and his son Todd rode a tandem to be a part of the event. This year, there were more than 60 people who live with MS and rode 25, 100, 125 or 150 miles. Derek’s Story It was 2003 in London, England. In one week,
I went from working 50+ hours to not being able to walk by weeks end. After weeks in the hospital and many tests, I was told I have multiple sclerosis. I was devastated. Words from Noelle Chalmers, Derek’s wife Our love with Bike MS started back in 2008. I participated in the Pasadena Walk MS 5K and noticed information for Challenge Walk MS 2008 so I signed up. Although Derek was unable to walk with me, he helped me raise money and became my personal cheerleader and SAG. After the Challenge Walk, we were encouraged to do more so Derek bought and trained on a recumbent trike before completing his first Bike MS in 2009, riding 160 miles with me as his cheerleader and also his own SAG. Since his first solo Bike MS in 2009, Derek has participated in five Bike MS events and one BP MS 150 event. Derek has taught me how to ride with gears, how to train and how to push myself more than I ever have. His ability to be without MS while on his trike is an amazing thing to see. His pain is gone, his smile contagious and his story inspires. “If I can stop one person from going through the hell of MS through my riding, I will ride. I may not be able to walk great distances due to what MS has taken from me, but I can ride my trike! Thank you for the support, all of us who are affected by MS are eternally grateful for your help in creating a WORLD FREE OF MS!’ —Derek Chalmers n
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funding THe MISSION
donate today for a year-end tax deduction! Over the past year, the chapter has helped thousands of individuals affected by multiple sclerosis. This assistance and support would not be possible without the generosity of people like you. Think about how much each dollar helps those in need:
• $50 allows us to provide a family meal for Thanksgiving. We helped Joanne, a busy single mother of two who lives with the impact of MS, provide her family a pre-cooked meal. This allowed her to conserve her limited energy and enjoy the holiday with her family.
• $5,000 helps support over 100 individuals with transportation vouchers, including Jerry, who takes the bus home each night from his care facility to have dinner with his wife.
Please allow us to continue our support of these individuals and families affected by MS. Consider making a year-end, tax-deductible gift to the Society today.
• $2,500 let us help Carol, who is her husband’s care provider. She works full time to support their family and was feeling the pressure of expenses in addition to caring for her husband. With support of our community partners, a professional care agency now provides in-home respite care to give Carol the time she needed to take care of herself.
To make a contribution visit MSpacific.org or contact Erich Foeckler at erich.foeckler@nmss.org or 760-448-8412.
• $500 allowed us to provide a portable air conditioner to Melinda who was experiencing MS exacerbations during the summer heat waves. Melinda is just one of 15 members who received this assistance this year. • $250 let us provide a ramp for Pamela, so she could safely access her home on her own.
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MS connection: WINTER 2016
supporting THe MISSION
volunteers make it happen! We simply could not make a difference in the lives of people affected by MS without the help of thousands of volunteers each year! Within that special group are individuals who go above and beyond in the giving of their time to volunteer. This past November, we honored four outstanding volunteer leaders in our community whose service earned them recognition at our National Conference in Fort Worth, Texas. Congratulations to our incredible National Volunteer Award Winners!
Lifetime Achievement Award: Barbara Katz When Barbara was diagnosed with MS over 40 years ago, she decided that she had to do something to help others. As a volunteer for the National Capital Chapter, she and late husband Bob Katz, who was a board member, served on the chapters Services Committee and were responsible for creating the highly successful speaker series, “MS Education Nights.” As a pioneer for creating programming for MS, Barbara did marketing, found the best speakers, arranged for space, and most of all, touched people’s lives. As a fundraiser, Barbara is fearless; she belongs to our $10,000 Mission Possible annual giving club and has personally contributed nearly $300,000. She’s served on the Board of Trustees and event committees, led Women’s MS Support Groups and traveled to Washington and Sacramento as an MS Advocate numerous times.
Scientific Researcher Honoree: Dr. Craig Walsh Dr. Walsh obtained his Ph.D. in Immunology at the UCLA School of Molecular, Cellular and Developmental Biology, followed by postdoctoral work at UCSD in La Jolla, CA in the Division of Molecular Biology. Dr. Walsh joined the faculty in the School of Biological Science in 2001 and is now a Professor in the Department of Molecular Biology & Biochemistry and a Co-Director of the UCI Institute for Immunology. His research focuses on two key aspects related to the pathogenesis of MS: 1) how to control T cell responses in autoimmunity and establish T cell tolerance toward myelin; and 2) how to promote myelin regeneration using stem cell transplantation. Dr. Walsh has served for three years as a grant reviewer for the National MS Society and frequently contributes to grant reviews in the area of immune tolerance for the National Institutes of Health.
Circle of Distinction Honoree: John G. Most John Most became involved with the Society in the 90’s prior to his first wife Debbie being diagnosed. Even after Debbie’s passing, John and his wife Jodi continue to inspire
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others. For over 20 years John has served as a Chapter Trustee, Bike MS Committee Chair, and created campaign design and marketing materials. In 1997, John started his Bike MS team, MOST Team Top of the Hill. John leads his team by example by being a top ten fundraiser every year and inspires each team member to raise more than $2,000 individually. Over the years, John’s team has raised more than $500,000. In addition to his outstanding Bike fundraising, John gives significantly to the MS Dinner Auction, Board Campaign and Walk MS.
Circle of Distinction Honoree: Blake von Sprecken Blake von Sprecken, joined the movement in 1999 after his father was diagnosed with MS. He began his legacy as a participant in Bike MS eventually leading the team, Lloyd’s Lagers to raise $900,000! Blake joined the Board of Trustees and at that time, he and his brother organized and led an annual Golf Tournament in Orange County recruiting friends, family and sponsors, raising hundreds of thousands of dollars. If you ask Blake why he does what he does, he will always reply; “We need to find a cure”. He doesn’t plan on stopping until we do. Want to get involved as a volunteer? Contact Linda Ingram at linda.ingram@nmss.org or 760-448-8416. Or, you can fill out our online application at http://volunteer.MSpacific.org. n
funding the mission
Bubbles and Brunch to End MS, a sparkling success! The 2nd Annual Bubbles & Brunch to End MS event sponsored by Biogen on August 29 at the Balboa Bay Club was an incredible success that raised over $100,000 for the Society. 250 guests enjoyed a beautiful bay front reception with over 70 silent auction items along with an opportunity to win a diamond necklace from Winston’s Crown Jewelers. Keynote speaker, Kate Milliken passionately told her story of living with MS as a wife, mother, and producer. The success of this event would not have been possible without a passionate committee who care deeply about the Society.
Thank you to our 2015 Bubbles & Brunch Committee: Angela Caspary, Gina Clarke, Amy Dechary Jennifer Gaydos, Hilary Kaye, Nan Luke Addie Martini, Jodi Most, Cynthia Perazzo Charmaine Rood, Anna Strenger Annaliese Train and Committee Chair Cindy Locke If you want to get more involved with the event in 2016 and become a sponsor, purchase a table, or serve on the committee, contact Heather Dean at heather.dean@nmss.org or 760-448-8417. n
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INCREDIBLE foundation SUPPORT IN 2015 Many thanks to the following foundations & trusts who provided $149,940 in grants in 2015. With their support, we were able to serve 51,500 people affected by MS in Orange, San Diego and Imperial Counties and the Hawaiian Islands. • • • • • • • • • • • •
Beckman Coulter Foundation Covidien Cares Cushman Foundation CSA San Diego Unified School District Disneyland VoluntEARS Community Fund Dr. Seuss Foundation Edison International Enterprise Holdings Employees Community Fund of Boeing California Samuel I. and John Henry Fox Foundation Friends of Hawaii Charities, Inc. O.L. Halsell Foundation
• • • • • • • • • • •
HMSA Foundation Insperity Judy Zankel Fund McGrory Family Fund at the Jewish Community Foundation Morgan Stanley National Charity League SDG&E Softchoice Cares Sunwest Bank Charitable Foundation Women of St. James Walter J. and Betty C. Zable Foundation
PA I D A D VE R T I S E M E N T
Want to try a different option for MS stiffness and spasms? A local clinical research study for people with MS is enrolling now. Qualify and you may receive at no cost: ¥ Investigational medication for muscle spasms and stiffness ¥ Study-related medical care ¥ Compensation for study-related travel
Call: 619-294-4302
or info@prnsd.com
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PA I D ADVE RTI S E M E NT
SUPPORT FOR YOUR MS IS LOOKING UP The Above MS™ program from Biogen™ is here for you with tips, tools, and inspiration for your multiple sclerosis (MS)—and so much more. There are many benefits to joining the Above MS program. As a member, you’ll get extra help from those who understand MS, including: • One-on-one MS support over the phone • A community of peers • Tips from people living with MS who are also experts in a relevant field, like cooking and exercise • Information about Biogen relapsing MS treatment options • Financial and insurance support, if eligible • 24/7 support from Nurse Educators Please keep in mind that your doctor is always your primary resource when it comes to your MS and your treatment.
Get extra support from the Above MS program. Sign up now at AboveMS.com or call 1-800-456-2255.
© 2015 Biogen. All rights reserved. 07/15 FCH-US-0890
12121 Scripps Summit Drive, Suite 190 San Diego, CA 92131
mark your
calendars JANUARY 14:
30:
Online Newly Diagnosed Program Annual Meeting of Members
FEBRUARY 20:
Moving Forward: Program for the Newly Dagnosed
MARCH 5: 7-13: 10:
San Diego MS Symposium MS Awareness Week Online Newly Diagnosed Program
April 16: 23: 30:
San Diego County Credit Union Walk MS: Carlsbad San Diego County Credit Union Walk MS: San Diego Walk MS: Irvine Sponsored by Fish & Tsang LLP
To learn more about any of these events, or to register, visit http://calendar.MSpacific.org.