WINTER 2014 Pacific South Coast Chapter - HAWAII
MS Connection Newsletter GET INVOLVED IN ANY NUMBER OF WAYS!
INSIDE 04 THIS ISSUE
The latest On pregnancy and MS
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Choose your own DIY adventure
make a year-end gift today
UPCOMING PROGRAMS AND EVENTS
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MS connection: WINTER 2014
“How wonderful it is that nobody need wait a single moment before starting to improve the world.” - Anne Frank
Connect with us online: MShawaii.org Like us: facebook.com/ NationalMSSociety HawaiiDivision 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.
SUPPORTING THE MISSION
WORKPLACE GIVING HELPS US END MS! 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: 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 #93976. For more information, contact Candice at Candice.Schwalbach@nmss.org or 808-532-0806.
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
WALK MS REGISTRATION IS OPEN! Join us at one of our amazing Walk MS locations! Help us make positive movements in the lives of over 800 ohana living with multiple sclerosis on our islands. Sign up as an individual or even better, create a team! Then, send out information to friends and family. Be sure to make a self-donation to kick off your personal campaign against MS. We have all kinds of great ideas to help you fundraise! For more information, visit walkMShawaii.org or contact Candice at Candice.Schwalbach@nmss.org or 808-532-0806.
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 Editor & Design: Jessica Ishikawa Hawaii Director: Candice Schwalbach © 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter, Hawaii
April 4 - Kauai Kapa’a Beach Park & Bike Path
April 25 - Oahu Aloha Starium, Honolulu
May 2 - Hawai’i Edith Kanakaole Tennis Stadium, Hilo
TBD - Maui Check-in: 4:00pm Start: 5:00pm
walkMShawaii.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 2014
RESEARCH
The latest on pregnancy and MS By Julie Stachowiak, PHD
I was thrilled to attend the teaching course on pregnancy and multiple sclerosis during the 2014 Joint meeting of the Americas and European Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS-ECTRIMS). When I conceived my twins nine years ago, there were fewer therapies available and some doctors were still recommending that women with MS not have children. While today there are still no concrete guidelines on how a woman with MS should be guided through pregnancy, enough data has been gathered that the following recommendations were presented:
Before trying to conceive: • It is important to discuss with your doctor and your family the impact that MS will have on your ability to parent and the support system that you can call on. In addition, many people are very anxious that they may pass MS along to their children. To clarify this risk: If just one parent has MS, the risk is still very low (about 1-2 percent) that the child will develop MS. • If you are on a disease-modifying therapy, ask your doctor what the recommended “wash
Dr. Julie Stachowiak out” period (a period of time without active treatment) is for your medication. Based on data, many doctors are recommending a very short amount of time before trying to get pregnant. Importantly, it is recommended that men on mitoxantrone and teriflunomide also stop these meds before trying to father a child. NOTE: Please talk to your doctor about when to stop your meds, as different medications carry different recommendations. • If you are having relapses, it is recommended to try to stabilize them for 6 to 12 months before trying to conceive. Your doc may want to put you on Tysabri for that time (although this may increase your risk that you will have a relapse when you stop). Other approaches are pulse steroid therapy, where a woman is given Solu-medrol when she is menstruating (knowing she won’t conceive during this time), then trying to conceive during the following month.
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nationalmssociety.org | 1-800-344-4867
FUNDING THE MISSION
CHOOSE YOUR OWN ADVENTURE WITH DIY FUNDRAISING In 2014, Do It Yourself (DIY) Fundraising raised over $5,000 to support the Hawaii office. DIY is the opportunity for individuals and corporations in the community to support the Society through unique and creative fundraising methods. It allows anyone to support a world free of MS! This past year several individuals hosted their own events in the community for the Society. These ranged from teams in the Annual Great Aloha Run and the creation of a cookbook on Kauai, to zombies roaming around Maui, all in the name of MS. Here are just a few examples of how one little idea can brew into something big to support people affected by MS: • Team Out Run MS is a group of families that came together to raise awareness for the MS society during the annual Great Aloha Run event! This year, they raised over $1000! • The Society was chosen as the beneficiary of the Obstacle Z event held in November (pictured above). Zombies slowly roamed over parts of Keopuolani Park in Maui.
• The society has amazing supporters and ohana living on Kauai. For the last few years, Cynthia Edralin has been working diligently to gather amazing recipes to go into her annual cookbook. If you would like to snatch one up, they are $15 and all proceeds go to the chapter. These are just a few of the remarkable examples of how those passionate about finding a cure for MS can help support the Society in a number of ways. Whether championing for the Society to be the beneficiary of a current event, asking a company to start a fundraiser, or creating a new event based on your interests, there is a way for everyone to join the movement in creating a world free of multiple sclerosis. To learn more about DIY, start your event or get involved in one of the events listed, visit MSHawaii.org or contact Candice at Candice.Schwalbach@nmss.org or (808) 532-0805.
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MS connection: WINTER 2014
Money Matters
Managing your money with MS Gloria Dady had envisioned spending the rest of her working life taking care of people. She never expected that, in her 50s, multiple sclerosis would force her to start drawing on her retirement nest egg. It was unsettling — until she reached out for help from the National MS Society. Through the Society’s partnership with the Society of Financial Service Professionals, people affected by MS can get free financial counseling from trained professionals through the Financial Education Partners (FEP) program. Doug Head, CLU, ChFC, a financial advisor with Edward Jones in Tukwila, Wash., is one such volunteer. Head helps people plan for a life with MS by talking about basic budgeting, different ways to save, how to maximize health insurance benefits and more. But he lends more than his number-crunching know-how. He and other FEP volunteers also offer hope that any financial challenge can be tackled with patience and planning. “Dealing with the challenges of MS often leaves people feeling that their finances have gotten away from them,” Head says. “The first thing I ask is, ‘What are your two or three major financial concerns?’ This helps us focus on what’s really important to them.”
Gloria Dady with her grandchildren
Dady appreciated talking to a finance professional who could explain everything clearly and compassionately. Head discussed strategies to lower her tax payments and keep her retirement savings intact, even as she drew on it for income. Over the past four years, Head has offered free financial advice to more than 100 people who have been referred to him by the Society. “The people I’ve met are wonderful,” Head says. “I’ve been inspired by their journeys.”
Financial planning for a life with MS can be difficult. We provide financial counseling through the National Financial Education Partners Program to registered members of our chapter. This program is designed to help you prepare and plan for the financial impact of MS related issues. If you are interested in connecting with a local financial advisor, call 1-800-344-4867 and press “1”.
nationalmssociety.org | 1-800-344-4867
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MAKING A DIFFERENCE
YOUR YEAR-END GIVING MAKES AN IMPACT By the 5th day we felt desperate, so we called the National MS Society on Oahu, and asked if there was any way they could help. The Hawaii Director, Candice, sprang into action immediately! She made numerous calls looking for a generator, but as you can imagine generators were hard to come by. But she never gave up! Thankfully, the staff at the Hilo Home Depot knew how desperate we were, and they quickly stashed a generator away and called the MS office. The Society hustled to find volunteers to pick it up, fill it with gas, and drive it 18 miles out to our home in Hawaiian Beaches.
On August 7, 2014, we were hit by Tropical Storm Iselle. It felt like a hurricane and was truly horrifying. As the sun rose the next day, there was a feeling of overwhelming gratitude as truckloads of food, water, ice, and supplies were delivered throughout the neighborhood. Having been born and raised here, we have never known the TRUE meaning of ALOHA, as we that day. The force of Iselle brought down huge Albizia trees, knocked out power lines and damaged many homes. While our home only sustained minor damage, the loss of electricity was concerning. Triggers for MS exacerbations vary from person to person, but for my husband, Jast, heat causes debilitation and sometimes hospitalization. Hawaii has not had a summer this hot since 1940 and our fears quickly became reality as Jast’s health rapidly declined.
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. Aloha and Mahalo nui loa! With all our love - Jast and Vynn Hegerfeldt!
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 like Jast and Vynn. Donate today by visiting MShawaii.org or calling 808-532-0805.
418 Kuwili Street, #105 Honolulu, HI 96817
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
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calendars Oahu Windward Talk Story 3rd Wednesday of each month, 6pm – 7:30 pm St. John Vianney Parish 920 Keolu Dr, Kailua ( Oahu) Parish Building Milton McAngus, Group Facilitator 808-728-0200 Kauai Caregivers Talk Story This group meets based on participant availability and communicates regularly via email thread. For more info about this group, please contact the MS office 808-532-0805
Kauai Talk Story Group 1st Wednesdays of each month, 5:30pm-7:00 pm This group travels to different parts of the island. Please call Joy for more info : 808-635-8065 Joy Ortiz-Zimmer and Laurie Weber, Co-Facilitators Maui Talk Story Group THIS GROUP IS ON HOLIDAY BREAK UNTIL JAN 2015 3rd Thursday of each month, 5:30 pm Kaunoa Senior Center Citizens Center 410 Alakapa Pl, Paia Please contact Ellen for more info : 808-250-4630 Ellen Lundquist and Joyce MacDougall, Co- Facilitators