WINTER 2016 Pacific South Coast Chapter - HAWAII
MS Connection Newsletter Mahalo Zippy’s!
INSIDE 03 THIS ISSUE
jOIN US AT wALK ms 2016
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have a voice in MS RESEARCH
make a year-end gift today
UPCOMING PROGRAMS AND EVENTS
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MS connection: WINTER 2016
Our promise is daunting and so powerful. People affected by MS can live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. Connect with us online: MShawaii.org Like us: facebook.com/ NationalMSSociety HawaiiDivision Watch us: youtube.com/MSpacific On the Cover: Mahalo to Zippy’s 24 locations across the islands for raising over $41,000 for MS research and to provide programs and services to more than 1,200 ohana living with MS.
SUPPORTING THE MISSION
WORKPLACE GIVINg & ACH Charity Match 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! A great way to kick-off a campaign is by inviting an MS Ambassador to your company to share information about the National MS Society’s mission to create a world free of multiple sclerosis and to provide examples of how supporting the movement changes lives. There are multiple ways to join: • Aloha 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: #70380. • Combined Federal Campaigns (CFC): Federal government employees and members of the U.S. Military Forces can support the Society through the CFC by designating their contribution to #63706. • You can also donate to the Society through friendsofHawaii.org. As a Friends of Hawaii Charities charitable grant recipient, we are honored to participate in this annual fundraising opportunity, called “Aloha for Hawaii Charities,” offered in conjunction with the Sony Open PGA TOUR tournament. Visit friendsofhawaii. org, select Aloha for Hawaii Charities icon, and select National MS Society, Hawaii to make your contribution. For more information contact Candice Schwalbach via email at Candice.Schwalbach@nmss.org
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
join us at walk ms! Not only is Walk MS tons of fun (no matter which island you participate on), but by participating in the event you are also taking an active role in: • Funding cutting-edge research aimed at finding the cause of MS, developing more treatments, and ultimately ending the disease forever • Providing resources and information about a variety of issues for people living with MS through newsletters, publications, education seminars and conferences, and at-home teleconferences • Providing direct support and financial assistance for FDA-approved medications, medical equipment, counseling services, respite, care management, college scholarships, and emergency assistance Join us at Walk MS in 2016 and help us make positive changes in the lives of over 800 Ohana on our islands living with multiple sclerosis. Getting involved is super easy! Just go online or call the office to sign up as an individual or as a team! Once
National Multiple Sclerosis Society Pacific South Coast Chapter Hawaii Office 950 Kamehameha Hwy, Box 822291 Pearl City, HI 96782 808-532-0806 Chapter President: Richard V. Israel Hawaii Director: Candice Schwalbach Editor & Design: Christine Wiley Associate Editor: Jenna Tucker Associate Designer: Nare Ovsepian © 2015 National Multiple Sclerosis Society, Pacific South Coast Chapter, Hawaii
you are registered, use your Participant Center to recruit team members and send donation requests to friends and family via email, Facebook, and other outlets. You can even kick-off your fundraising by making a self-donation! We have plenty of resources to help you reach your fundraising and participation goals. Every step you take helps support those living with MS, and we will support you every step of the way. What are you waiting for? Register for a Walk MS event today!
We’re stron
ger
TOGETHER
March 26 - Sunset Stroll May 7 - E Ola Kapa’a (Kauai) Hilo (Hawai’i) Kapa’a Beach Park & Edith Kanakaole Tennis Bike Path Stadium April 2 - Field Day Honolulu (Oahu) Aloha Stadium
TBD - Maui
walkMS.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 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.
05 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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PA I D A D VE R T I S E M E N T
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
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nationalmssociety.org | 1-800-344-4867
MAKING A DIFFERENCE
YOUR YEAR-END GIVING MAKES AN IMPACT
At the beginning of 2015, my husband, Makoa, had an exacerbation unlike any before. It was one that changed our family’s routine more than normal. I realized Makoa needed someone at home more frequently to help. My job was understanding and let me work part time from home on a short term basis. We knew finances would be tough, but we didn’t plan for a summer as hot as this past one. As the heat on the Leeward side became more and more intense, Makoa’s MS symptoms did as well. We had the air conditioners running constantly to keep Makoa cool to avoid MS complications - the expenses were out of control. We did what we could to cut costs in the home, yet it wasn’t enough. In late August, we had fallen behind in our bills, and a notice to turn off our electricity came in the mail. I was in a panic. This is when I thought to contact the National MS Society. I called and explained the situation at hand. Immediately I knew I had
found the right place. The Hawaii staff sprang into action immediately and let us know the Society was there to help. There are no words to describe the overwhelming feeling of gratitude we have in our hearts for such kindness and willingness to help strangers under these difficult conditions. We are so grateful and consider ourselves truly blessed by the help and assistance provided by the National MS Society, Hawaii! On behalf of ourselves and the thousands of other Hawaii ohana’s affected by MS, Mahalo, your gifts make a tremendous difference.
The Golden Circle is for people who truly want to make their mark on MS by giving an annual gift of $1,000 or more. Your gift through the Golden Circle directly supports the Hawaii MS community and amazing people. Please join me and put your compassion to work. Mahalo!
Candice Schwalbach Director, Hawaii
950 Kamehameha Hwy Box 822291 Pearl City, HI 96782
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
mark your
calendars Please call for more information: 808-532-0508 or 800-344-4867 Oahu Windward Talk Story Group 3rd Wednesday of each month, 6pm – 7:30 pm St. John Vianney Parish 920 Keolu Dr, Kailua ( Oahu) Parish Building David Burton, Group Facilitator Kauai Caregivers Talk Story Group This group meets based on participant availability and communicates regularly via email thread. For more info about this group, please call 800-344-4867
Kauai Talk Story Group 1st Wednesdays of each month, 5:30pm-7:00 pm This group travels to different parts of the island. Mary Kay Hertog and Laurie Weber, Co-Facilitators New! Kona Talk Story Group Details coming soon! Please contact our office to register and get more information. Hosted by The Club.
Aloha United Way 2-1-1 is a free and confidential service offered statewide for people who need help finding and gaining access to health and human service resources. Dial 3-digit 2-1-1 number or visit the website at www.auw211.org.