MSCONNECTION MOVING TOWARD A WORLD FREE OF MS • WINTER 2013
Meet our volunteer hall of fame inductees Each year, local volunteers are nominated to receive national recognition for for their outstanding service to to the National MS Society. Congratulations to the South Central volunteers inducted into the Society’s Volunteer Hall of Fame for 2012. Advocacy Champion: Patti Barker Since daughter Channing’s MS diagnosis at the age of 16 in 2006, Patti has been a driving force of the Society’s South Central MS movement. Patti chairs the Oklahoma Government Relations Committee; she also serves on the Oklahoma Leadership Council and the South Central Board of Trustees. As she has told legislators, “With your support, one day MS will equal ‘Mystery Solved.’ ” Funding the Mission Champion: Gerald Merfish Gerald Merfish, owner of Merfish Pipe & Supply, has been active with the Society since 2000 and is the fifth highest-cumulative fundraiser for South Central Bike MS events. For nine years, he has been a member of the Board of Trustees, where he has served as Board Secretary and Chairman of the Finance Committee. He is credited with forming a budget panel to review allocation of funds for programs and services.
Health Professionals Champion: Dr. Amy Gutierrez Dr. Amy Gutierrez became involved with the Society nine years ago and remains actively engaged in numerous areas of the MS mission. She has served on the South Central Board of Trustees and Leadership Council since 2008, and the Clinical Advisory Committee since 2004. She speaks at numerous programs – such as Annual Meetings, North American Education Programs and Golden Circle Events – and supports the Society’s advocacy efforts. Additionally, Dr. Gutierrez rides in the annual Bike MS: Louisiana and participates in Walk MS: New Orleans. Programs and Services Champion: Jinjer LeVan In 2009, Jinjer LeVan was awarded the Kanaly Trust Foundation MS Entrepreneur Grant to develop an MS Symptom Experience Kit, helping educate the public about living with multiple sclerosis. She is an MS Ambassador, guest speaker at Self-Help Groups, state advocate, MS Awareness Week Public Speaker, and a Walk MS Team Captain and committee member.
03 06 08 10 ANTONIO SABATO JR
BIKE MS RECAP
RESEARCH ROUND UP
NATIONAL MS SOCIETY 4613 Fairfield Street Metairie, LA 70006 Tel +1 800 344 4867 Tel +1 504 832 4013 Fax +1 504 831 7188 www.mslouisiana.org facebook/nmsslouisiana
STAFF & LEADERSHIP Mark Neagli Regional Executive Vice President Rebecca Pennington, PhD, CFRE Vice President of Development, Louisiana Crystal Smith, MSCIR, MSSMC Director of Programs & Services Anna Moss Coordinator, Programs & Services Jessica Aubin, Development Manager Jennifer Simon, Development Manager Susan McCarthy, Office Manager
Deadline is Jan. 15 for Scholarship Applications The National MS Society offers a scholarship program for students with multiple sclerosis or who have a parent with MS. Applicants must plan to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered. Scholarship applications for 2013 are available on the Society’s website. There is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by Jan. 15, 2013. For guidelines and applications, visit www.nationalMSsociety. org/scholarship or call the Society at 1-800-344-4867 (press 1).
Kelly Tullberg, Editor
Closed For The Holidays
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear hear solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.
The National MS Society offices will be closed for the following holidays: • New Year’s Day - January 1 • Martin Luther King Day - January 21 • Mardi Gras - February 11-12
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.
If you or someone you know has MS ...
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Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage MS and about current research that may one day reveal a cure.
LIVING WITH MS
ACTOR Adds Muscle to the MS Movement Actor and model Antonio Sabato Jr. helped pump up MS awareness during a recent visit to Tulsa, Ok. An avid fitness enthusiast, the star of TV shows such as “General Hospital” and “The Bold and the Beautiful” came to Tulsa in October to open his first weight loss center and fitness gym called iNutrition. Because he has a friend with MS, Antonio expressed an interest in getting involved with the National MS Society’s mission. To show his support, he and Brandi Moore, the Society’s South Central Regional Communications and PR Manager, appeared on Tulsa’s Channel 8 “Good Day Tulsa” program. Antonio and Brandi discussed multiple sclerosis, the Society and the benefits of a healthy lifestyle in managing MS symptoms.
Mason Hoffman, Antonio Sabato Jr. and Aimie Dwyer Later, Antonio met with Aimie Dwyer and Mason Hoffman, two young Oklahomans who shared their experiences about living with the daily challenges of multiple sclerosis.
National ms society - louisiana leadership council Mike Palamone* Chair New Orleans Jane Heidingsfelder* Vice Chair New Orleans Dr. Bridget Bagert New Orleans Jamie Beeman Baton Rouge
Scott Duggins* New Orleans
Colin Hulin New Orleans
David Tabor* Thibodaux
Jimmy Fahrenholtz New Orleans
Thomas G. Krentel* New Orleans
Robert J. Whann, III New Orleans
Scott Galante* New Orleans
John P. Laborde, Sr. New Orleans
Peggy Wilson New Orleans
Dr. Amy Gutierrez* New Orleans
Mark Preston New Orleans
Robert Howson New Orleans
Dr. Austin J. Sumner* New Orleans
*Leadership Council Members who also serve on the South Central Region Board of Trustees.
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LIVING WITH MS
SELF HELP GROUPS ALEXANDRIA
MID CITY NEW ORLEANS
Second Tuesday, 6 pm HealthSouth Conference Room 104 N. Third Street, 1st Floor Tarra Babin, Co-Leader Shada Brown, Co-Leader 318-374-0058
Second Tuesday, 7 pm St. Timothy Methodist Church Educational Bldg., 335 Asbury Drive Susan Scott, Co-Leader Peggy Cartier, Co-Leader LEADERS NEEDED FOR 2013
Second Monday, 6 pm Ochsner - Baptist Campus Conference Room - Krew Room 310 4429 Clara St, New Orleans For directions, call Ochsner Dept. of Neurology 504-842-3980 (M-F, 8am - 5 pm) Mimi Jalenak, Leader 504-861-0859 *Mid-City New Orleans SHG and the LSU MS Clinic SHG will be merging to offer breakout groups to clients and their caregivers. Contact Anna Moss with any questions at 504-322-3781 or firstname.lastname@example.org.
First Tuesday, 5:30 pm Tangipahoa Police Sub-station 15475 Club Delux Rd Hammond Meeting Room Bill and Judy Perkins, Leaders 985-878-6313 Stephanie Carter, Co-Leader 985-542-2705
BATON ROUGE Third Tuesday, Noon Family Road of Gretaer Baton Rouge 323 E. Airport For directions, call 225-201-8888 Joyce Smith, Co-Leader Donna Hildebrandt, Co-Leader
LAFAYETTE First Tuesday, 5:30 pm Layfayette Physical Rehabilitation Hospital 307 Polly Lane Dawn Abbott, Co-Leader Angela Trahan, Co-Leader
Third Thursday, 7 pm Lakeshore Library 1000 W. Esplenade Ave For directions, call 504-838-4375 NEW LEADER TBA
MONROE Last Thursday, Noon Glenwood Med. Mall Community Room 102 Thomas Road, West Monroe Lynn Armet, Leader
NEW ORLEANS First Friday, 10:30 am West Bank Jesters Gretna Community Center 1700 Monroe St, Gretna Diane Orlesh, Co-Leader 504-394-5623 Kim Maloz, Co-Leader 504-394-2274 First time visitors please call to confirm location.
SHREVEPORT Date and Time TBD Willis-Knighton Hospital Steen Hall Eye Institute 2611 Greenwood Rd (corner of Greenwood and Hearne Ave) Wayne Holloway, Co-Leader Allen Lawrence, Co-Leader
THIBODAUX Second Tuesday, 6:30 pm Thibodaux Regional Medical Center 602 North Acadia Rd Ann Howell, Co-Leader Nicki Boudreaux, Co-Leader
Questions about Self Help Groups? Please contact Anna Moss | 504-322-3781 | email@example.com
Self Help Groups can also be found on our website: www.mslouisiana.org. 4 | JOIN THE MOVEMENT: nationalMSsociety.org
LIVING WITH MS
VINTON Second Saturday, 10 am Knights of Columbus 1424 Grace Avenue Elaine Briggs, Leader 337-309-5124
In addition to In Person Self Help Groups, the Society also offers Self Help Groups that meet by phone, giving you the opportunity to join the conversation and gain support and knowledge from any location.
MS AND CANCER Fourth Wednesday, 3 pm CST Group Contact: Margaret Barney firstname.lastname@example.org Call in Number 1-888-346-3659 Enter code 1073 when prompted
WELCOME NEW SELF HELP GROUP CO-LEADERS! We are proud to announce two new leaders for the Shreveport Self Help Group, which resumes meetings in January. Wayne Holloway, the group leader, is a retired nurse who was diagnosed with MS in 1999. After first working in medical surgery, he went on to work in a Psychiatry and Drug Rehab Hospital for 12 years, before retiring in 2006. Allen Lawrence co-leads the group. He is a retired minister who worked as a hospital chaplain for 20 years while working as a pastor for 5 churches since 1980. Allen met Wayne in 1982 at one of the hospitals and has been his caregiver ever since. They are excited to lead the Shreveport Self Help Group and are passionate about serving the community and finding a cure for MS.
Cafe Con Leche Every Tuesday, 1 pm CST Monthly telephone group in Spanish, Conversations and Support for People Living with MS Call in Number 1-888-346-3659 Enter code 64552 when prompted
STAY AT HOME Third Wednesday, 11 am CST Support for those living with MS for five years or more Call in Number 1-888-346-3659 Enter code 64552 when prompted
Finding answers and making decisions relies on having the right information at the right time. MS Navigator速 provides answers to your questions and access to information about all of the options available to you. Contact an MS Navigator today at 1-800-344-4867, or email email@example.com.
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LIVING WITH MS
Mattress Firm Helps Provide Good Night’s Rest for Person in Need by STACY SMITH Society employees recently teamed up with a generous company to make one woman’s house a real home. After spending days in an unfamiliar hospital, most people look forward to the basic things that make their home a welcoming place: their couch where they can sit and rest, their favorite meal to cook, or their own comfortable bed. For one South Central resident with MS, continuing her recuperation at home on her worn 15-year-old mattress was far from a comfortable prospect. Within the last few months, she experienced a relapse that worsened her MS symptoms and placed her in the
hospital. After being released, the woman went home for much-needed rest, though she was unable to replace her uncomfortable, disintegrating mattress due to tight finances. After Society staff members told the woman’s story to Mattress Firm representatives, the company agreed to help by donating a new bed equipped with rails, along with a new bed for her daughter. Through dedication and teamwork, Mattress Firm and Society employees ensured one family would have a good night’s rest. Stacy Smith is the volunteer coordinator with the Society’s Tulsa office.
“It’s hard for me to keep track of all of the things going on in my life. I choose to face this disease with strength, dignity and lots of sticky notes. ” — Fotini, diagnosed in 2007
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JOIN THE MOVEMENT®. Create a World Free of Multiple Sclerosis.
ADVOCACY Coming This Spring
2013 LOUISIANA PUBLIC POLICY CONFERENCE National Multiple Sclerosis Society
Spring 2013 Baton Rouge, La
Make a Connection. Make a Difference. Join Louisianians Impacted by MS! You are invited to make a difference in the lives of people living with multiple sclerosis by sharing your story with your state legislators at the 2013 Louisiana Public Policy Conference. This one-day event held at the Capitol (date to be announced in January) is a great way to educate lawmakers about the importance of supporting legislation that can make a difference in the lives of Louisianians impacted by MS. Never been to the Capitol? Don’t know your elected officials? Don’t worry - experienced MS Activists and National MS Society staff will be your partners every step of the way! Sign up for the MS Action Network on our website today, and we will email you when registration opens for this important event. One voice connecting with one legislator can make a huge difference for thousands of individuals living with chronic illness. www.nationalMSsociety.org/advocacy Crystal Smith | 504-322-3787 | firstname.lastname@example.org
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mission is center as cyclists ride in 2012 In February 2009, Lauren began feeling tingling and numbness in her right leg, a symptom her family assumed was due to overtraining for triathlons. When the neurologist confirmed that her symptoms were actually due to multiple sclerosis, Lauren replied, “So how do we fix that?” Nearly four years later, Team Lauren Rocks is Start Line at Southeastern Louisiana University in Hammond on October 6, 2012. riding each year in Bike MS: Louisiana. The opportunity for individuals living with MS in team is captained by Susan Rolston, Lauren’s mother. Louisiana. They can gather for a finish line celebration MS hasn’t stopped Lauren; she rides, too, along with that includes a cool tent, refreshments, and fun, as twenty-six other team members who are doing their they meet others impacted by MS and cheer on the part to “fix” this for Lauren other others living with MS. champions raising funds for a world free of MS. Bike MS: Louisiana 2012 took place Oct. 6-7, with 1,200 registered cyclists raising more than $800,000 for families living with MS in Louisiana. This year marked the 29th Anniversary of the 150-mile ride. The event began with a kick-off on Friday, Oct. 5 at Southeastern Louisiana University in Hammond. Chef John Folse and Company provided delicious food, and music helped welcome participants for the weekend’s journey. On Saturday, Oct. 6, participants rode 75 miles to Percy Quin State Park in McComb, Mississippi. They made the return trip home on Sunday, welcomed by friends and family. The Bubble Bistro set up at the finish line for the third year in a row. This popular tent is a connection 8 | JOIN THE MOVEMENT: nationalMSsociety.org
This year’s event couldn’t happen without the support of hundreds of volunteers, as well as our amazing sponsors. Special thanks to Presenting Sponsor: BP; Diamond Spokes: Sam’s Club; Platinum Spokes: Pfizer; Gold Spokes: People’s Health and Toyota; Silver Spokes: Shell; Aluminum Spokes: Chevron Fast Pharmacy, Lakeview Regional Medical Center, and Otto Candies; and Media Sponsors: Bayou 95.7, WYNK 101.5, 96.1 The River, WFMF 102.5, WLTV, WRNO 99.5, Hallelujah 1210AM, and 101.1 WNOE. Registration for Bike MS: Louisiana 2013, set for Oct. 5-6, is in full swing. You may register as a cyclist or a volunteer - both are essential in making the 30th Anniversary event great and bring us closer to a world free of MS. Visit www.bikemslouisiana.org, or call Jessica Aubin at 504-322-3789.
AN EVENING FOR MS highlighted by the arts The Peoples Health 2012 Renaissance Party was again a success under the leadership of co-chairs Adrienne Casbarian, Logan Howcott, and Chad Graci. About 400 guests enjoyed the evening of entertainment, featuring the band “Louisiana Spice” along with great food and incredible silent and live auction items. “Local artwork is always one of the most popular draws for the event, and dozens of local artists were featured in the year’s art auction,” said Rebecca Pennington, Vice President of Development for Louisiana. Live auction packages included fishing and hunting trips, exclusive beach getaways, fine jewelry, and New Orleans Saints memorabilia. Top: Adrienne Casbarian, Chad Graci and Logan Howcott served as co-chairs for the 2013 Renaissance Party. Bottom: Dr. Bridget Bagert, MS neurologist and member of the Louisiana Leadership Council, visits with Rebecca Pennington, Vice President of Development for the Louisiana office of the National MS Society.
NEW ORLEANS Audubon Park February 23, 2013 SHREVEPORT-BOSSIER CITY Louisiana Boardwalk April 6, 2013 BATON ROUGE Perkins Rowe April 13, 2013
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RESEARCH ROUND UP were individualized to meet individuals’ differences in fitness and to accommodate day-to-day variability in fatigue.
FDA Approves Second Oral Drug for MS In September, the U.S. Food and Drug Administration approved teriflunomide once-daily pills to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. “We are greatly encouraged to see a new oral therapeutic option become available to people living with MS,” said Bruce A. Cohen, M.D., Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and incoming Chair of the National MS Society’s National Medical Advisory Committee. “As with any new therapy, the longterm safety of Aubagio will need to be carefully monitored.” Dr. Timothy Coetzee, Chief Research Officer at the Society said, “With the collaborative research
underway around the world today, this is an extremely hopeful time for anyone who is diagnosed with MS.”
Weight Training Improves Walking and Quality of Life for Women with MS Women participating in a small study of progressive resistance weight training improved significantly in walking, and reported improvements in quality of life as well. The study, funded by the National MS Society, used standard measures to evaluate the effects of the program, along with in-depth interviews of the participants to determine the full effects on quality of life. During the training period, participants performed three supervised exercise sessions per week in a university-based fitness center using conventional weightlifting machines. Trainers had previous experience working with people with MS. Training protocols
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Walking performance improved by more than 13 percent. All participants reported enhanced muscle endurance or delayed muscle fatigue, as well as strength. These experiences impacted performance of a variety of daily life tasks. “I have not used any of those electrical carts in any of the big stores in a long time now,” said one participant. Another noted, “Since I’ve been doing this, I’ve been having stuff [to do] every single day of the week. In the past, I would do something one day and then rest the next day.” Six participants reported improved physical capabilities that impacted daily tasks such as yard work, shopping and chores around the house. Seven perceived a social impact, including making new friends, camaraderie with the other participants and research staff, being less of a burden on caregivers, and the development of a support network. Six claimed they had positive emotional responses due to the exercise program that included pride of accomplishment and a better mood. “I smile a lot more and that’s good,” noted one woman.
Testosterone Prevents Nerve Impairments in MS Study Researchers funded by the National MS Society have shown that the male sex hormone testosterone prevented or restored impairments in nerve impulse transmission in mice with EAE, an MS-like disease. The improvements specifically occurred in an area of the brain associated with cognitive function, lending evidence to the potential for the future use of sex hormones to treat this MS symptom. This team is currently conducting clinical trials to determine whether estriol (another sex hormone, added on to standard therapies) improves disease activity and cognition in women with MS.
Genes May Help Categorize Disease Course and Response to Therapy A team led by Philip L. De Jager, M.D., a Harry Weaver Scholar of the National MS Society from
Harvard’s Brigham and Women’s Hospital in Boston, has discovered that differences in active genes – detectable in blood samples – have the potential to be used to group people with MS into categories that predict disease course and response to therapy. Further research is needed to refine this approach before it becomes a tool that can benefit treatment decisions made by people with MS and their health care providers.
New Innovation Prize Created to Spur Research Progress A new $100,000 annual cash prize has been established to recognize scientists whose inventive work is propelling measurable MS research progress. The Barancik Prize for Innovation in MS Research recognizes an exceptional scientist or team whose work in MS research has demonstrated outstanding innovation and originality. The prize is made possible by the generosity of the Charles and
Margery Barancik SO Foundation, and is administered through the National Multiple Sclerosis Society. “We are proud to steward the new Barancik Prize, the largest ever established to spur progress toward stopping MS, restoring function and ending MS forever,” said Cyndi Zagieboylo, President and CEO of the National MS Society. “This is the latest in a long history of generous support for MS research provided by Charles and Margery Barancik, and it reflects their wish to speed this vital work.” The first prize will be given in May 2013. Nominations are accepted until Jan. 31, 2012. A selection committee comprised of leaders in science, medicine and MS advocacy will review nominees for their exceptional innovation and originality, impact and potential of the research to lead to pathways for the treatment and cure for MS, and accomplishments that merit recognition as a future leader in MS research.
We are making a bold commitment to do more now: more money to fuel MS research, more research into progressive forms of the disease, and more scientists conducting MS research. Join us. Become a champion today by visiting:
www.nationalmssociety.org/research/now-champion NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.
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NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Metairie, LA Permit # 242
National MS Society - Louisiana 4613 Fairfield Street Metairie, LA 70006
On your tax returnâ€Ś make your mark to help create a world free of MS. This year, people in Louisiana can make a mark to create a world free of MS. While doing your 2012 income taxes, please simply check a box on line 41 of your state tax return form to make a charitable contribution to the National Multiple Sclerosis Society. Each contribution will go directly toward MS research, programs and services that support the 400,000 people in the U.S. living with MS. A small mark will make a big difference in the movement toward a world free of MS. Take this ad to your tax preparer, or contact the National MS Society, Louisiana Chapter, for more information.
nationalMSsociety.org | 1.800.344.4867
MSConnection, a quarterly local publication from the National MS Society