M O V I N G TO WA R D A W O R L D F R E E O F M S Spring 2012
Louisiana
Public Policy Day The 2012 Louisiana Public Policy Conference took place on Wednesday, April 11, 2012, and was a huge success. This day will be remembered by participants for a long time to come. The day was long but the energy was high as MS Activists from many areas of Louisiana gathered at the State Capitol to advocate for priorities important to people with MS and all disabilities. Our day kicked off with an amazing MS Activism Training Workshop led by Joe Gagen, a nationally recognized advocacy expert. By participating in this training, MS Activists gained
the knowledge needed to take action at the Capitol with legislative visits. In this fun, interactive workshop Joe Gagen explained how to communicate more effectively with public policy makers, gave valuable information on the process and the environment in which public policy is made, and shared his insight on the key elements needed in effective legislative advocacy communications. After the training, a delicious hot lunch was served and then MS Activists gathered at the steps of the Capitol for a group picture before heading into the Rotunda for their legislative visits. As everyone saw that day, legislators wanted and needed to hear from their constituents! As a person with MS, a caregiver, or a leader in the MS movement, your personal stories are powerful tools and they can shape public policy to make a real difference in the lives of persons living with - continued on page three
Louisiana The MS CONNECTION is a publication of the National Multiple Sclerosis Society, Louisiana, and is published three times a year. 4613 Fairfield Street Metairie, La. 70006 phone: 1-800-344-4867, Option 1 or 504-832-4013, Option 1 www.mslouisiana.org Nationwide MS Hotline: 1-800-344-4867, Option 1 NMSS website: http://www.nationalMSsociety.org
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear solely because they are considered valuable information. The National MS Society assumes no liability for the use of contents of any product or service mentioned. 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 MS Society recommends that all questions and information be discussed with a personal physician. The National MS Society is dedicated to ending the devastating effects of MS. 2
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Regional Executive Vice President Mark Neagli Vice President of Development, Louisiana Rebecca Pennington, Ph.D, CFRE Director of Programs & Services Crystal Smith, BA, MSCIR, MSSMC Coordinator, Programs & Services Anna Moss, BSW Development Manager Jessica Aubin, BS Office Manager Susan McCarthy
ATTENTION
Please let us know if you would like to receive this newsletter by e-mail. We would appreciate this very much as you help us to go green! Thank you! Call 1-800-344-4867, Option 2, Ext 3787.
Public Policy Day - continued from page one MS. Developing a relationship with your elected officials and having good communication with them is the key to legislative success. For those who participated this year, please remember to send follow up thank you notes to your representatives and senators. Prior to 2012, Louisianans – including those with comprehensive coverage – were subject to health insurance policies that allowed health plans to make changes to prescription drug coverage at any time during the contract year. This included increases in co-pays, moving a brand name medication from a lower tier to a higher cost sharing tier and removing a prescription drug from a plan’s formulary. Thanks to the hard work of MS Activists, we were successful in getting HB 345, now Act 350, Continuity of Prescription Drug Coverage passed in the 2011 Legislative Session. This current legislation is implemented as of January 1, 2012. Louisianans who depend on prescription medications can now rely on their health insurance and the insurer’s drug formulary, for the life of the insurance contract. Just as important to continuity of coverage, Act 350 requires written notification of important changes 60 days prior to reenrollment. Providing this consistency and ability to plan for out of pocket health care costs are important safeguards to maintaining access to vital and often life-saving medicines. During the 2012 Legislative Session, MS Activists are currently engaged in imple-
Louisiana Activism
mentation of Act 350 and Regulation 100 at the Department of Insurance. The Louisiana Register published Regulation 100 on April 20th. MS Activists continue to work with legislators to ensure that people with MS and other chronic diseases have access to affordable and accessible prescription drugs.
TOLL FREE NUMBER 1 800 344 4867
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support groups
SELF-HELP GROUPS ALEXANDRIA HealthSouth, Conference Room on first floor 104 N. Third Street Second Tuesday, 6 p.m. For more information: Tarra Babin and Shada Brown, Co-Leaders 318-374-0058 AMITE/HAMMOND First Tuesday, 5:30 p.m. Tangipahoa Police Sub-station 15475 Club Delux Rd., Meeting Room Hammond Bill and Judy Perkins, Leaders 985-878-6313 Stephanie Carter, Co-Leader 985-542-2705 BATON ROUGE Third Tuesday, 12 Noon Family Road of Greater Baton Rouge 323 E. Airport (directions: 225-201 -8888) Joyce Smith and Donna Hildebrandt, Co-Leaders HOUMA First Thursday, 7 to 8:30 p.m. Terrebonne General Medical Center Outreach Center, Southland Mall 5953 Park Ave, Suite 3003 Fran LeBlanc, Leader Penny Gilton, Co-Leader 4
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LAFAYETTE First Tuesday, 5:30 p.m. Lafayette Physical Rehabilitation Hospital 307 Polly Lane Dawn Abbott, Leader Angela Trahan, Co-Leader Tri-Parishes Self-Help Group * (see note) ON HOLD St. John the Baptist Parish Library 2920 Hwy. 51 LaPlace, La. 70068 985-652-6857 (for directions to library) Joan Ory, Leader jory@rtconline.com MANDEVILLE Second Tuesday, 7 p.m. St. Timothy Methodist Church Educational BIdg. 335 Asbury Drive Susan Scott and Peggy Cartier, Co-Leaders METAIRIE * (see note) New - Third Thursday, 7 p.m. Starting March 2012 No February Meeting 504-322-3781 Janice Naquin, Leader 1000 W. Esplanade Ave. Metairie, La. 70005 (Library # for directions.) 504-838-4375
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MONROE Last Thursday, 12 Noon Glenwood Med. Mall, Community Room 102 Thomas Road West Monroe Lynn Armet, Leader NEW ORLEANS West Bank Jesters First Friday of each month at 10:30 a.m. Gretna Community Center 1700 Monroe St. Gretna, La. 70053 Diane Orlesh, Leader, 504-394-5623 Kim Maloz, Co-Leader, 504-394-2274 First time visitors should call Diane or Kim to confirm location. Mid-City New Orleans Newly Diagnosed Group Ochsner – Baptist Campus 4429 Clara St. New Orleans, La. 70115 Conference Room – Krew Room 310 Second Monday 6 to 7:30 p.m. starting September 12th Mimi Jalenak, Leader 504-861-0859 For directions call Ochsner Dept. of Neurology 504-842-3980 (M– F, 8 a.m. – 5 p.m.)
support groups
SHREVEPORT * (see note) ON HOLD Willis-Knighton Hospital Steen Hall Eye Institute 2611 Greenwood Rd. (corner of Greenwood and Hearne Ave.) Linda Galloway, Leader
* PLEASE NOTE Shreveport SHG and the Tri-Parishes SHG meetings are on hold until further notice. We are actively seeking new leaders and co-leaders to assist with these groups.
Vinton Knights of Columbus 1424 Grace Avenue Vinton, La. 70668 Second Saturday 10 a.m. – 11:30 a.m. Elaine Briggs, Leader 337-309-5124
Metairie SHG seeking Co-Leader
Self-Help Groups Offer Both In-Person and Phone Support by Susan La Combe
Self-Help Groups offer opportunities to make new friends and share with others how you experience life with MS. Meetings provide settings to share common concerns, give and receive emotional support and receive MS-related information from peers and guest speakers. Self-Help Groups are facilitated by trained volunteers with personal experiences with MS. Phone Group Name Home is Your Range MS and Cancer Group contact, Margaret Barney margaret@msplus.org
To find a group that meets in-person near you, call the National MS Society at 1-800344-4867. The Society also offers several Self-Help Groups that meet by phone, giving you the opportunity to join in from the comfort of your own home:
Meeting Day/Time First Wednesday of each month 1 p.m. CST Fourth Wednesday of each month 3 p.m. CST
Cafe con Leche: Conversations and Tuesdays Support for People Living with MS 1 to 2:30 p.m. CST Monthly telephone group in Spanish Stay at Home Support for those living with MS for five years or more
Third Wednesday of each month 11 a.m. CST
Susan LaCombe is Programs and Services Manager in the Society’s Dallas office. She can be reached 1-888-346-3659 (enter code 64552 at susan. when prompted) lacombe@ nmss.org. 1-888-346-3659 (enter code 64552 when prompted) Call-In Number 1-888-346-3659 (enter code 1073 when prompted) 1-888-346-3659 (enter code 1073 when prompted)
TOLL FREE NUMBER 1 800 344 4867
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LOUISIANA programs
Wellness Program Reminders! Alexandria – MS Aquatics YMCA-Alexandria, 1831 Turner St. Call Emmy Partain, program coordinator, for details at 318-445-8261. Baton Rouge – MS Chair Aerobics Baton Rouge Self Help Group Meetings on occasions with Donna Hildebrandt. Covington – MS YOGA Star Fitness Center in Covington. MS participants can participate without being members of center at a cost of $5 per class. Lafayette – MS Chair YOGA Our Lady of Lourdes Fitness Center every Monday and Wednesday from 5:30 p.m. to 6:15 p.m. $1 per class.
The National MS Society is laying out the checkered blankets and turning on the grills! Join us for this year’s MS Getaway: Life’s a Picnic at the beautiful, serene wooded setting of the Wesley Center Retreat in Woodworth, LA (10 miles south of Alexandria) on June 1-3, 2012! You and one guest are invited to participate in a weekend of support, relaxation, education and social activities. Space is limited and reservations are taken on a first-come basis. The cost is $40/person; this covers a two-night stay, activities and meals. Upon receipt of your registration and payment, a confirmation will be sent to you with complete details. Questions? Please contact Anna Moss at 504-322-3781. 6
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Lake Charles – MS Aquatics Our Lady Queen of Heaven Family Life Community Center, 3939 Msgr. deBlanc Place. Contact Denise Ackley, program facilitator, for details at 337-474-6814. Metairie – MS Aquatics East Jefferson Wellness Center on Tuesdays and Thursdays, 12:30 to 1:15 p.m. Contact Amy Berthelot, program facilitator, for details at 504-849-6815. Shreveport – MS Aquatics Willis-Knighton Wellness Center, Greenwood location. Classes meet Wednesdays 3:30 to 4:30 p.m., $5 per month Call Holly Biernet, program facilitator, for details at 318-212-4475.
Development
Walk MS 2012 Events The Louisiana Multiple Sclerosis Society held its annual Walks in Shreveport, New Orleans and Baton Rouge throughout the month of March. The Walks are held each year to drive awareness and support for the work the National MS Society does throughout the year. This year, collectively, the Walks saw an increase in attendance and raised more than $224,785. We could not have done it without the volunteers who gave of their time and work, to the sponsors – especially BlueCross BlueShield of Louisiana and People’s Health – and to all of the walkers who come out with their families and friends in honor of those with MS. It is with all of you, working together, that we will have a day without MS. Please keep an eye out for the dates for the 2013 Walks in Baton Rouge, New Orleans, and Shreveport. We’ll see you there!
TOLL FREE NUMBER 1 800 344 4867
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Development
Bike MS 2012…Don’t Just Ride, Bike MS! There are many ways to get involved with Bike MS… find the right fit for you and Join the Movement! Although the event isn’t until October 6-7 it will definitely be here before we know it. So make plans to be a part of the largest fundraiser for the National Multiple Sclerosis Society in Louisiana. Last year Bike MS raised nearly $800,000 for those affected by multiple sclerosis in Louisiana. Whether you like to ride or volunteer we would love to see you on event weekend. However if you are unable to do either you can still make a difference. Just spread the word. We work hard to spread the word about Bike MS but we know there are people that we don’t reach. So the next time you are out, talking on the phone, or are just with family and friends talk to them 8 |
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about Bike MS. You never know who may want to get involved. If you are living with MS and would like to be a part of the event please join us on Sunday October 7, 2012 at Southeastern Louisiana University in Hammond, La. at our BUBBLE BISTRO. This is a tent for clients to relax and stay cool under while they cheer on participants making it to the finish line after 150 miles of cycling. This is an opportunity for those living with MS to thank those participants for their hard work and dedication to the MS Society. It is also a chance for cyclists to meet someone living with multiple sclerosis and see the difference their hard work is truly making in someone’s life. October is just around the corner and we are looking forward to Bike MS 2012…Join the Movement and help us create a world free of MS! For more information about this event or ways that you can participate please visit our website at www. bikemslouisiana.org or call our office at (504) 322-3790 or 1-800-344-4867.