SUMMER 2014 Pacific South Coast Chapter - HAWAII OFFICE
MS Connection Newsletter
JOIN THE FUN OF Bike MS Page 4
INSIDE 04 THIS ISSUE
BIKE MS: GO BIG OR GO HOME!
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GET INVOLVED AS A VOLUNTEER
AN UPDATE ON THERAPEUTICS
STRETCH YOUR WAY TO HEALTH
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MS connection: SUMMER 2014
JOIN THE MOVEMENT
walkers and teams raise the bar for walk ms!
MAHALO! Mahalo Nui Loa to everyone who came out to support those living with MS and their families ! With your Help, we raised over
$130,000! Top Teams: Friends of Laurie Weber $22,653
Connect with us online: MShawaii.org On the Cover: Bike MS participants enjoy the coast on the Big Island.
Hui Me Kapiliaoloha
$11,810
Sam’s Club Pearl City
$8,499
USS Jacksonville
$5,564
Perky’s Go Ge�ers!
$5,430
Trish the Party
$4,540
No MSing Around
$4,042
Maui MS Ohana
$3,238
Friends of Krystal Morinaka
$2,595
Team Joy
$2,515
nationalmssociety.org | 1-800-344-4867
EMOTIONAL SUPPORT
TALK STORY GROUPS The National Multiple Sclerosis Society’s self-help, otherwise known as Talk Story Meetings are groups for individuals with MS, their families, friends, and other care partners. Members gather regularly for the purposes of sharing common experiences and concerns, providing and receiving emotional support, and obtaining information on living and coping with MS. Oahu Windward Talk Story Meeting 3rd Wednesday, 6:00pm - 7:30pm St. John Vianney Parish Community, 920 Keolu Drive, Kailua (Oahu) Parish Office Building Milton McAngus, Group Facilitator 808-728-0200
National Multiple Sclerosis Society Pacific South Coast Chapter Hawaii Office 418 Kuwili Street, #105 Honolulu, HI 96817 808-532-0806 Chapter President: Richard V. Israel Editor & Design: Jessica Ishikawa Division Manager: Candice Schwalbach Š 2014 National Multiple Sclerosis Society, Pacific South Coast Chapter, Hawaii Division
03 Kauai Talk Story Meeting 1st Wednesday, 5:30 - 7:00pm This group travels to different areas of the island each month. Please call Joy for more information at 808 - 635-8065. Joy Ortiz-Zimmer and Laurie Weber, Co-Facilitators Kauai Caregivers The group meets at 5:30pm based on participant availability and communicates regularly through an email thread. Maui Self-Help Group Meeting 3rd Thursday of the month, 5:30pm Kaunoa Senior Citizens Center 401 Alakapa Pl, Paia, HI 96779 Please contact Ellen for more information at 808-250-4630. Ellen Lundquist and Joyce Macdougall, Co-Facilitators
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: SUMMER 2014
BIKE MS
GEARING UP THE END MS WITH MO’S MARAUDERS. HERE’S WHY THEY RIDE. she could still be of service.
By Chris Litwhiler First I have to start with why I ride. Maureen (Mo) and I (pictured left at the start line) first met in 1992 while she was attending the Officer Basic Course for the Army Signal Corps. Mo was commissioned in the US Army as a Signal Corps officer from Georgetown University. Although she will flatly deny the following statement, she is a wizard at making radios work on the Korean Peninsula. So as a good Army Officer I knew that if I were to succeed in life I had better marry her. We were married in 1999, and spent the next several years with her in Japan and me in Korea. Finally in 2003, the Army sent both of us to Portland, Oregon. Then Mo started stumbling. Her foot dragged while running, she had problems with balance and coordination while playing basketball. Over the course of the next year she had two more flare ups, a spinal tap and two MRIs before they determined that she had MS. She spent the next year convincing the Army that
For the next eight years, Mo and I lived in different cities and on different continents. It was not until we were both assigned to DC that I discovered the Bike MS rides and discovered the fun and joy of starting a team. In September of 2012, I was assigned to the PACOM (Pacific Command) Headquarters and we moved to Hawaii. Two months later Mo retired from the military. During the move, I realized I had friends and relatives who had served with Mo who wanted to show their support. I decided to see if we could get them to join Mo’s Marauders and ride in the Bike MS events in their states. A lot of great people signed up and in 2013, we had team members in four states (Arizona, Colorado, Hawaii and Texas) with virtual riders in two other states (Ohio and D.C.). All in all Mo’s Marauders has raised over $15,000 for the National MS Society with 30 riders. So what is next? I will continue to
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nationalmssociety.org | 1-800-344-4867
corrupt people to get out and ride whether it is with us as Mo’s Marauders or with another bike team. I have participated in multiple charity rides, and the BikeMS rides are by far my favorite ride. Join us!
JOIN BIKE MS!
Be a part of the fun on August 2 & 3! Visit bikeMShawaii.org to learn more! Low income home energy assistance program (LIHEAP) opens in june!
Volunteers make it happen
UPCOMING VOLUNTEER OPPORTUNITIES
Summer College Student Internships Available Gain some real-world experience with an internship! You’ll get to work side-by-side with chapter staff to learn what makes a non-profit organization tick! It’s a great resume builder! • Marketing and Public Relations • Health and Wellness • Fundraising and Development
LIHEAP assists low income households in meeting their home energy needs. LIHEAP is a federal program that provides crisis payments once a year or energy assistance. LIHEAP primarily assists households by applying an energy assistance grant directly to the energy provider on behalf of the eligible household. Applications accepted in June only.
Retirees Volunteer Club
Maui: 808-249-2970 Kauai: 808-245-4077 Oahu: 808-488-6834 Big Island: 808-969-6999
From set up crew to ticket takers, we need your help! Let us know if you belong to any organizations seeking volunteer hours including student clubs, military personnel, volunteer clubs, religious organizations, or any other groups that would like to volunteer. Our events require attending a pre-event volunteer meeting and will take place within a few weeks of the event.
The application period this year is June 2014. Please check with each office for exact dates of the application period and required application documents. An in-person interview is required and each office does conduct home interviews for people with major mobility issues. All applicants should receive a decision by November or December 2014.
Random Tuesday of the Month As Needed Volunteer slots available for retirees who would like to help with data entry and light office tasks. Available on a first come first serve basis as needed. Two positions are available now through August 2014.
CALLING ALL BIKE VOLUNTEERS!
Bike MS: Big Island (Waikoloa): August 2-3 Please contact us for more information on volunteering by calling (808) 532-0806 or email HIH@nmss.org.
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MS connection: SUMMER 2014
RESEARCH
AN UPDATE ON THERAPEUTICS Effective strategies are available to modify the disease course, treat exacerbations, manage symptoms, improve function and safety, and provide emotional support. Management of MS over the last 20 years has been substantially advanced by the growth of disease-modifying drugs and symptom management drugs, which helps reduce future disease activity and improve the quality of life for many individuals with relapsing forms of MS. Despite the availability of drugs, difficulty in obtaining MS treatments exist in Hawaii due to the lack of adequate information reaching primary care providers and general neurologists. Furthermore, there are only two neurologists who specialize in MS. As a result, people in Hawaii living with MS often seek out primary care providers for their health care, and may be receiving MS treatments at a significantly lower rate. Therefore, 32% of individuals are less likely to be taking a disease-modifying agent when their care is provided by a primary care physician or physician’s assistant. The ‘An Update on Therapuetics’ program, presented by Monique Canocio, DO, is designed to fill the healthcare gap. After each presentation, participants are encouraged to ask questions.
AUGUST & SEPTEMBER PROGRAMS SAVE THE DATES! • Thursday, August 21 Honolulu Update on Therapeutics • Thursday, August 28 Maui Update on Therapeutics • Friday, September 12 Kona Update on Therapeutics • Friday, September 12 Hilo Update on Therapeutics • Friday, September 19 Kauai Update on Therapeutics ABOUT THE SPEAKER Monique Canonico DO graduated from the Kansas City College of Medicine and Biosciences and was an active duty neurologist in the United States Army before coming to Kaiser Permanente. She is an Assistant Clinical Professor at the University of Hawaii John A Burns School of Medicine, with a special interest in MS.
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nationalmssociety.org | 1-800-344-4867
LIVING WITH MS
STRETCH YOUR WAY TO HEALTH Melanie Lee, RYT-200, holds an inspiring yoga class designed for people living with MS. The class welcomes all levels of ability, taking place in a seated position. Members of the society are welcome to attend with their families and caregivers. Participants benefit from poses that build flexibility, strength, endurance, balance, and coordination. Yoga helps participants focus on the needs of their own body. This class aims to relax the body, reduce mental tension, enhance mobility, and reduce spasticity.
Aikahi Studio 38 Kaneohe Bay Drive Kailua, HI 96734 (parking in the main lot for the Windward United Church of Christ Studio is in the WUCC complex.)
Melanie Lee, Yoga Instructor
Join us for a “Roaring Good Time� at the MS Auction on Saturday, September 20 at the swank Pacific Aviation Museum! We are putting on the ritz at this exclusive event where you can indulge in a selection of swell silent auction items, enjoy gourment food stations, and have a private experience at the mueseum with live music and more! Learn more or RSVP today at SATURDAY, SEPTEMBER 20, 2014 PACIFIC AVIATION MUSEUM
MSauctionhawaii.org
418 Kuwili Street, #105 Honolulu, HI 96817
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID San Diego, CA Permit # 451
mark your
calendars AUGUST 2 & 3: Waikoloa, Bike MS: Go BIG or Go Home Ride 21: Honolulu, Update on Therapeutics 28: Kahului, Update on Therapeutics
SEPTEMBER 12: 12: 19: 20:
Kona Update on Therapeutics Hilo Update on Therapeutics Lihue Update on Therapeutics Honolulu The Roaring 20’s Silent Auction
Every Wednesday at 3:45pm MS Yoga: Stretch Your Way To Health