FALL 2016 PACIFIC SOUTH COAST CHAPTER - HAWAII OFFICE
MS CONNECTION NEWSLETTER
3RD ANNUAL MS DINNER AUCTION
Saturday, September 24, 2016 HAWAII STATE ART MUSEUM MSAUCTIONHAWAII.ORG
INSIDE 02 THIS ISSUE
OPPORTUNITIES FOR CHANGE
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TALK STORY GROUPS & TELELEARNING SERIES
DO-IT-YOURSELF FUNDRAISING
INVESTING IN THE FUTURE
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MS CONNECTION: FALL 2016
A NOTE FROM THE DIRECTOR
OPPORTUNITIES FOR CHANGE
Change is a constant in life with MS. While some changes can be good, like a new diet or a more positive outlook on life, others can feel bad, like having to adapt to different physical abilities. Regardless of how change is perceived, it represents an opportunity to alter the course and pivot in a new direction. The National MS Society has the chance to create a more impactful organization. We are united in our collective power to do something about MS and end this disease forever. With change comes opportunity and we look forward to growing together as a community strengthened by our goal to change the world for people affected by MS. You are all leaders in the MS movement and your voice is powerful. Together, we raise funds and awareness, provide support and connections, and work relentlessly to fuel progress that will one day lead us to a cure. We appreciate your steadfast leadership and unstoppable drive in this movement that affects us all. We are excited about the lively fall season in Hawaii! Attend an event as a participant, in person or virtually, and encourage your friends and family to form a team or get dressed up to accomplish this journey together! Take action and spread MS awareness by getting involved today! Mahalo Nui Loa, Candice Schwalbach Hawaii Director
NATIONAL MULTIPLE SCLEROSIS SOCIETY Pacific South Coast Chapter - Hawaii 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 Designer: Sherin Tebbi Š 2016 National Multiple Sclerosis Society, Pacific South Coast Chapter, Hawaii
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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LOCAL SPONSORS
04 EMOTIONAL SUPPORT
TALK STORY GROUPS Self-help, otherwise known as Talk Story Meetings, are support 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 The Oahu Windward Talk Story Meeting is on summer break. For more information, please call 808-532-0805. Kauai Talk Story Meeting 1st Wednesday, 5:30 - 7:00pm The Kauai Talk Story Meeting travels to different areas of the island each month. Please call the Hawaii office for more information at 808-532-0806. Co-facilitated by Laurie Nakama and Mary Kay Hertog. Maui Self-Help Group Meeting The Maui Self-Help Group Meeting is on summer break. Please contact Ellen for more information at 808-250-4630. Co-facilitated by Ellen Lundquist and Joyce Macdougall. Kauai Caregivers The Kauai Caregivers meets at 5:30pm based on participant availability and communicates regularly through an email thread.
MS CONNECTION: FALL 2016
MS Self-Help Group, Kona 2nd Sunday, 3:00 - 4:30 p.m. Club Rehab, 75-5699 Kopiko Street Facilitated by John Moore. For more information, call 808-896-2609 or email jhm1313@gmail.com.
WEBINAR &
TELELEARNING SERIES The 2016 Webinar & Telelearning Series brings together a collaboration of MS experts — to help you learn strategies to live your best life with MS. Each free webinar & telelearning program features two presenters with time for Q&A. All recordings/materials are available afterwards if you're unable to attend live. To register for an upcoming telelearning opportunity or for more information, please call 1-800-344-4867 or visit nationalMSsociety.org/Telelearning.
UPCOMING OPPORTUNITIES: Tuesday, September 13, 2:00 p.m. Health Insurance: What Everyone Needs To Know Tuesday, October 11, 2:00 p.m. Together in MS: Supporting Family and Friends of People with MS Tuesday, November 8, 3:00 p.m. Diet and Multiple Sclerosis: A Neurologist's Perspective
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FUNDING THE
MISSION On Thursday, August 4 in Honolulu the National MS Society Chapter for Hawaii held a DIY event to end MS. The fundraiser, Painting With a Purpose, was a fun night of painting, sipping, and supporting. Attendees were given step-by-step instructions by Mike, a staff member at Painting with a Twist, on drawing a beautiful Lanikai beach sunset. The DIY event raised over $700 and all the proceeds went to the MS Society.
Sheraton Kauai General Manager Chip Bahout and resort associates presenting Candice Shwalbach, Mary Kay Hertog and Krystal Morinaka with a check for the Table 53 proceeds. Photo by Dennis Fujimoto/The Garden Island.
The Sheraton Kauai's "You Dine, We Donate" Table 53 program at the RumFire Poipu Beach restaurant donated nearly $3,000 to the National MS Society, Hawaii in August for those living in Kauai! Under the Table 53 Program, net proceeds for food and beverage for the month are donated to the designated nonprofit organization.
Board member Dr. Monique Canonico and her family channeling their inner Picasso's at the Painting with a Purpose event.
On Thursday, July 24, Charmed by Charity® hosted a soiree at Alex and Ani Moana Center. With more than 40 attendees and many telephone orders, 15% of all proceeds at the event were donated to the National MS Society, Hawaii! This event raised over $1,500 to help stop MS in its tracks and end MS forever!
Now it’s your turn! Raise awareness and critical funds to end Multiple Sclerosis by conducting fundraisers in new and innovative ways. With Do It Yourself Fundraising MS, you’re able to decide how to mobilize your supporters and design your own solution. Visit MSpacific.org to get started!
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MS CONNECTION: FALL 2016
RESEARCH
INVESTING IN THE FUTURE The National Multiple Sclerosis Society has committed $25.3 million to 60 new MS research projects that hold promise toward stopping MS, restoring lost function and ending MS forever. In addition, funding for one-year grants for 11 new pilot projects will allow MS researchers to investigate high-risk, high-potential strategies to understand, treat and manage MS. Studies that delve into genetic and environmental risk factors for MS include how vitamin D might protect individuals from developing the disease and how the influence of genes on immune cell activity might be a clue to stopping or preventing MS. Other studies are focusing on a range of strategies to stop MS progression or restore function. Following is a sampling of these promising projects.
THE WHY OF PROGRESSIVE MS Despite advances that have produced diseasemodifying therapies for relapsing forms of MS, treatments for progressive MS have remained elusive. To address that gap, the Society is supporting a large-scale study, SUMMIT (Serially Unified Multicenter Multiple Sclerosis Investigation), to leverage extensive information from long-term monitoring of more than 1,000 people with MS to understand factors that lead to progression.
THE NATIONAL MS SOCIETY HAS ALSO RENEWED ITS SUPPORT OF PEDIATRIC MS RESEARCH. The five-year study will bring together two MS Centers of Excellence, Harvard’s Brigham and Women’s Hospital and the University of California, San Francisco, to develop a database of invaluable information that will be open to researchers anywhere in the world. Another study, led by Dr. Claudia Lucchinetti and Charles Howe, PhD, at the Mayo Clinic and Foundation in Rochester, Minnesota, will conduct “metabolic profiling” of people with MS in order to better understand the role that metabolic stress, which spans a variety of problems in cells, including energy deficits and failure to recycle unneeded proteins, may play in MS progression. An interesting study at Washington University School of Medicine in St. Louis explores the role that sex differences may play in the transition of relapsing-remitting MS, the most common form of the disease in women, to secondary progressive MS. Researchers have found that the entry of harmful immune cells into the brain during MS is partially mediated by a molecule called S1PR2,
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which occurs in high levels in women with MS. Blocking S1PR2 in mice with an MS-like disease appears to improve disease severity in female, but not male, mice.
RESTORING LOSSES Research dedicated to restoring what’s been lost in MS focuses on understanding how nerves and their protective myelin coating normally work, how we can repair those critical tissues, and how restoring function may also include new strategies to manage common issues of MS. One study at John Hopkins University is focusing on a promising compound that may improve cognitive function in MS. The compound, a molecule called GCPII, was shown in mouse studies to improve cognitive performance, but only in very high doses administered via injection. Now, with the help of a drug discovery team with expertise in GCPII pharmacology, investigators are synthesizing and evaluating 20 to 30 new compounds to try to create an oral version. If they are successful, the compound could move to clinical trials to prove its safety and benefits. Another study at St. Joseph’s Hospital and Medical Center in Phoenix hopes to follow how a type of immune cell called a Natural Killer (NK) cell interacts with brain cells, possibly interfering with the repair process. These cells have been found to remain in the brains of people of MS and in mice with an MS-like disease; eliminating NK cells in the latter was found to significantly improve their recovery.
LIVING WITH MS Restoring function may also include new lifestyle and wellness approaches. Studies focusing on these areas include an international multicenter trial of an online program to reduce MS-related depression. While depression is a common symptom of MS, MS symptoms such as fatigue, cognitive challenges and mobility issues can make it difficult to attend in-person therapy sessions. The online program, called Deprexis, can be used in an individual’s home, eliminating the need for travel. Preliminary results have already indicated that the program may reduce depression in MS and researchers are now conducting a phase 3 trial at five MS centers in the U.S. and Germany in 400 people with MS. Recent research has also suggested that some individuals with MS have difficulty in “emotional processing” — specifically, recognizing emotions from people’s facial expressions. A team at Kessler Foundation Research Center in West Orange, New Jersey, is examining the effects of an intervention aimed at improving emotional processing. The intervention includes interactive training and a computer program to help improve facial affect recognition. To learn more about MS research and stay up to date on current studies, visit nationalMSsociety.org/ research. n
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MARK YOUR
CALENDARS September 13: 24:
Health Insurance Webinar* MS Dinner Auction: La Fete De La Cure
October
11: Together In MS Webinar* 29-30: Bike MS: Go BIG or Go HOME!
November 8:
Diet and Multiple Sclerosis Webinar*
*For details, visit the calendar at MShawaii.org.
Charmed by Charity® enjoying their evening getting charmed at the Alex and Ani Moana Center.
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