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M O V I N G TO WA R D A W O R L D F R E E O F M S Summer 2012

Louisiana

A Company’s Initiative for an Employee’s Future by Kim Keel Prepping for a wedding can always be her way of spreading the word about the exciting -- everything from the makeup to symptoms and reality in living with MS. the dress selection -- there is nothing like “I’ve worked here for about five years,” anticipating where the night will go and the Hulin said, “and there is something of an fun to be had; but in Erin Hulin’ case, she was organizational culture where service is an getting ready for more than just a wedding; expectation, filtering down from the top she was about to find out her entire life was changing. “I was getting ready to go to a friend’s wedding and I thought the tingling was from wearing heels all week,” Hulin said, “because it was a stressful week at work, I guess I just didn’t think it was a big deal, up until it started in my hip.” After being diagnosed with multiple sclerosis at the age of 22, Hulin knew there was no time to feel sorrow or anger – she knew her internal Peoples Health “Our Hope” Team – WALK MS New Orleans 2012 battle between her brain and body was now a constant in her life, and she administrators to all departments.” refused to let it take over. She was now on a Peoples Health is headquartered in personal mission, which also turned into a Metairie and employs over 700 people, work mission – it was all about getting the servicing throughout Southeast Louisiana. word out. The company has always been a supporter It was when the company she works for, and advocate of many non-profits in New Peoples Health, stepped up and became her Orleans and continues to sponsor several biggest advocate in her long journey and events for the MS Society. - continued on page three fight against MS that Hulin knew this was

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

This Summer, Volunteer to Make a Difference

Volunteering is always in season at the National Multiple Sclerosis Society. Volunteer opportunities are available for a wide range of talents and skills, and for both onetime and ongoing activities. Volunteering with the Society is a great summer activity for individuals and families, as well as groups from schools, churches and companies. Many corporations and organizations volunteer with the Society as a team-building experience. For information on volunteer opportunities near you, visit volunteerMS.org or contact the National MS Society directly at 1-800-344-4867.

ATTENTION

Help us “GO GREEN� by signing up to receive this newsletter by email. If interested call 1-800-344-4867, Option 2, Ext 3787.

Cover STory — continued

“We were able to team of volunteers and accommodate Erin’s supporters. Erin’s Bike MS schedule due to her team raised $4,245.00 of diagnosis,” said Colin the $795,000 grand total Hulin, Chief Information raised this year. Hulin and Officer at Peoples Health Peoples Health – “Our and Erin’s father. “I asked Hope” team raised a total myself ‘What do we need of $15,351 of the $224,800 to do to accommodate grand total raised this year Erin and Roi-Lynne Hulin model team not only her schedule, but by the three WALKS in any employee diagnosed shirt “Our Hope is to end MS Forever” Louisiana combined. Hulin with MS?’” personally raised $6,085 Peoples Health has become Hulin’ outlet, for her team. Due to Hulin’s marketing where she can share information with her efforts, over 95 Peoples Health employees colleagues whom had never confided in showed up to the walk in April in support of anyone about what they were dealing with. the cause. Hulin’ drive and ambition to advocate for MS “At the end of the day, my company and motivates those around her to get involved I together have raised a significant amount,” with MS and other diseases, whom some Hulin mentioned, “and we plan to raise more may be fearful of discussing. this year.” “In this company, we are compassionate Hulin’s plans continue well beyond – it’s part of our culture,” Hulin said. “It is his/ participating in this year’s MS walk and bike her personal choice to expose any health tour. Some of these plans include promoting issue, but here, there is an emphasis to not important initiatives at Public Policy Day in be scared to talk and that we are here to Baton Rouge and becoming highly active support and listen.” in the MS Society. She is also pursuing her Now the MS liaison for Peoples Health, master’s of healthcare management at Hulin is looking forward to the increasing University of New Orleans in the fall while support and programs that will be available continuing to communicate her story for all employees of Peoples Health, as well through her blog posts at www.erinhulin. as their family members and friends. com. “We continue to host Lunch & Learns at “I want to continue spreading the word the office so any employee is welcome to while making a career for myself,” she said, learn about the disease,” Hulin said. “We’ve “I want to increase the company’s efforts had great turnouts and I see that more including: multiple donations, establish and more people continue to show up in weekend retreats, schedule educational support.” series and continue building the tools and Hulin and her family and friends resources to help all of the employees and participated in the Bike MS 2011 and Walk their loved ones – in hopes that this will one MS 2012 events where they established a day help eradicate the disease.” 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) Leader/Co-Leader needed MANDEVILLE Second Tuesday, 7 p.m. St. Timothy Methodist Church Educational BIdg. 335 Asbury Drive Susan Scott and Peggy Cartier, Co-Leaders Leader/Co-Leader needed

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 METAIRIE * (see note) 6 to 7:30 p.m. starting New - Third Thursday, 7 p.m. September 12th Starting March 2012 Mimi Jalenak, Leader No February Meeting 504-861-0859 504-322-3781 For directions call Maureen Ardoin, Co-Leader Ochsner Dept. of Neurology Leader/Co-Leader needed 504-842-3980 1000 W. Esplanade Ave. (M– F, 8 a.m. – 5 p.m.) Mid-City New Orleans Metairie, La. 70005 SHG and the LSU MS Clinic (Library # for directions.) SHG will be merging to offer 504-838-4375

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support groups

breakout groups to clients and their caregivers. More details will be out soon. Please contact Anna Moss with any questions at anna.moss@nmss.org or 504-322-3781. SHREVEPORT * (see note) ON HOLD Willis-Knighton Hospital Steen Hall Eye Institute 2611 Greenwood Rd. (corner of Greenwood and

Hearne Ave.) Linda Galloway, Leader Leader/Co-Leader needed THIBODAUX (starting in Sept.) Thibodaux Regional Medical Center 602 North Acadia Road Thibodaux, La. 70301 Second Tuesday 6:30 p.m. For more information please call Anna Moss at 504-322-3781

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 * 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.

Self-Help Groups Offer Both In-Person and Phone Support by Susan La Combe you, call the National MS Society at 1-800Self-Help Groups offer opportunities to 344-4867. make new friends and share with others The Society also offers several Self-Help how you experience life with MS. Meetings provide settings to share common concerns, Groups that meet by phone, giving you the give and receive emotional support and opportunity to join in from the comfort of your own home: receive MS-related information from peers and guest speakers. Self-Help Groups Susan LaCombe is Programs and Services Manager in the Society’s Dallas office. She can are facilitated by trained volunteers with personal experiences with MS. be reached at susan.lacombe@nmss.org. To find a group that meets in-person near Phone Group Name Meeting Day/Time Call-In Number Home is Your Range First Wednesday of each 1-888-346-3659 month (enter code 1073 when prompted) 1 p.m. CST Fourth Wednesday of 1-888-346-3659 MS and Cancer each month (enter code 1073 Group contact, 3 p.m. CST when prompted) Margaret Barney margaret@msplus.org 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

1-888-346-3659 (enter code 64552 when prompted) 1-888-346-3659 (enter code 64552 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.

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.

Get Connected and Raise Awareness with New Online Community

W

hat if everyone living with multiple sclerosis could connect with one another, with those who care for someone living with MS, or with those who research ways to stop, restore or end the disease? The National MS Society is virtually making those connections a reality. You can join the Society’s new MS Connection online community and make meaningful connections when, where and how 6

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you want. Best of all, you can connect with free, easy access to the best content and resources the MS community can bring you, including photos, group discussions, updated blogs, videos and more. You’ll learn about topics that are most important to you, connect with others, and have expert MS information and opinions right at your fingertips. Check out this new connected community at MSconnection.org today.

ADVOCACY

MS Activists on the Frontline at Capitol Hill

Hundreds of MS activists from Chapters across the United States were On the Frontline at the National MS Society’s 2012 Public Congressman Rodney Alexander Policy Conference (PPC). with Louisiana Delegation Once again, strong and vibrant MS activists Updates: Congressman ( from left) Erin Hulin, Lisa and Rodney Alexander and learned about federal Walter Chaisson, Paul Chaisson Congressman Bill Cassidy have policy issues important to people affected by MS and Crystal Smith both joined the MS Caucus since and proactively carried our meetings with them in D.C.! our messages to their U.S. Congressmen and Please take a moment to thank them if you Senators on Capitol Hill, raising awareness live in their districts. about MS and to urge support on critical We’d like to point out the excellent news issues. that the House Appropriations Committee This year, the Louisiana delegation was just approved $5 million for MS research stronger than ever with a record of five MS in the Congressionally Directed Medical Activists in attendance. We are thankful to Research Programs (CDMRP). The House Walter and Lisa Chaisson, Paul Chaisson and passed its Defense Appropriations bill Erin Hulin for their enthusiasm and hard containing this funding on May 18, 2012. work over a packed 3 days at the conference. There are many more steps before Congress Together, we had 7 meetings with Louisiana reaches a final budget agreement, but in the legislators. The meetings were engaging, interim—great work, everyone! We could impactful and meaningful to all. Our group not have achieved this success without the was well prepared and were well-spoken. advocacy conducted at the Public Policy The team shared their amazing, extremely Conference, the efforts securing signatures relevant tories, which aligned with our 2012 on the Dear Colleague letter, and the more priorities. than 5,700 emails that activists sent to It was my honor and pleasure for the Capitol Hill through our alert system. opportunity to bring this group of MS Contact Crystal at Crystal.Smith@nmss.org for Activists to D.C. and we look forward to more information. To take action in advocacy continuing to work closely with all on these efforts complete the MS Activist sign-up form and future priorities. in this issue and mail, fax or email to Crystal See the following fact sheets for the 2012 at the Society office in Louisiana. priorities and take action. TOLL FREE NUMBER 1 800 344 4867

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ADVOCACY

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ADVOCACY

TOLL FREE NUMBER 1 800 344 4867

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ADVOCACY

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MS Getaway

MS Getaway

The 2012 MS Getaway was a successful event thanks to everyone who participated! The MS Getaway was held at The Wesley Center in Woodworth, La., June 1-3, 2012, and was themed “Life’s a Picnic!” The MS Getaway was filled with participants from around the state and everyone came together to focus on Wellness. BINGO was played Friday evening with prizes donated by participants and the MS Society. Saturday participants came together to watch an educational program titled “Live Fully, Live Well” where they learned more about how to cope with symptoms of MS, dieting regulations, exercising techniques and traveling accommodations. Following the “Live Fully, Live Well” program, participants, staff and volunteers offered various workshops centered around MS and Wellness. Several workshops were planned and led by individuals with MS. Some of the workshops included yoga, sit or stand exercising, writing/journaling, couples discussion, caregiver discussion, “Free from Falls” program, “Working for Me” progressive MS program, life with MS discussion, arts and crafts and massage sessions for those with MS! The entire MS Getaway group gathered outdoors following dinner to enjoy t-shirt tiedying, lawn games, making s’mores, dancing and eating some delicious watermelon! We ‘beat the heat’ for sure! The weekend ended on Sunday morning following a meditation session and a fun, group photo! We hope to see everyone again next year! Thank you everyone who attended!

TOLL FREE NUMBER 1 800 344 4867

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MS Research

Research Round-Up Hotter Days May Worsen Mental Task Ability

People with multiple sclerosis often report worse symptoms when the weather is hot. A recent study concludes that hot weather may also worsen the ability to perform mental tasks in some people with MS. The research may help people plan activities and may improve the design of future clinical trials. Warmer weather tends to worsen many people’s neurological symptoms of MS. Research also suggests that relapses are more likely to occur in warmer months; some people may have more MRI-detected active MS brain lesions during these months. This study examined a possible link between outside temperature and the ability of people with MS to perform various mental tasks. Researchers compared 40 people with MS and 40 people without MS or any other condition that might have affected the results. Each participant was tested for the ability to process a mental task and for learning and memory. The average outside temperature on the testing day was recorded. The results showed that people with MS tended to perform worse when the weather was hotter than when it was cooler. People without MS performed equally as well regardless of the outside temperature. This study has several implications. Awareness of heat-related problems with mental tasks may impact lifestyle decisions; for example, whether to take a mentallychallenging college course in the summer or winter. The results also suggest that clinical trials involving people with MS should take temperature into consideration when designing the study and interpreting the results, especially when cognitive testing is 12 |

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used as a treatment outcome measure.

Eye Movement Training Focuses on Improved Balance

A controlled study suggests that a six-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability because of dizziness or disequilibrium in a group of people with MS. The effects lasted for at least four weeks following supervised training. Larger and longer studies are needed to determine how long the benefits last, and which people with MS would be most likely to respond to the program. The study by Jeffrey Hebert and colleagues at the University of Colorado, Aurora was partially funded by a pilot research grant from the National MS Society. This study is the first to examine the effects of an exercise program involving balance and eye movement training – or “vestibular rehabilitation” -- in people with MS to see if it improves both fatigue and balance. For this controlled study, 38 people with MS were divided into three groups: one group did not participate in an exercise program and only received normal MS medical care; one group participated in a general exercise program involving endurance and stretching; and one group participated in the vestibular rehabilitation program specifically designed to improve balance. The endurance and stretching exercises included bicycle riding and exercise designed to stretch various muscles. The vestibular rehabilitation program included balance exercises on various surfaces, arm movements while kneeling, head movements on a trampoline and while fixating on different objects, and ball catching while walking; the program also included

MS Research

three types of eye movement  exercises. Exercise programs were performed for 60 minutes twice a week in the clinic; a daily home exercise program, consisting of a subset of exercises performed in the clinic, was also assigned to each participant. The exercise training programs lasted for six weeks. Effects on balance, fatigue, dizziness, depression, and walking ability were examined at the end of the six-week program and then four weeks after the program had ended. At the end of the six-week period, the group that underwent the vestibular rehabilitation program showed improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium. Depression and walking ability were minimally improved. Four weeks after the exercise program ended, those in the vestibular rehabilitation program group continued to show benefit. Based on these preliminary results, balance and eye movement training may help people with MS who are experiencing fatigue and balance problems. Those wishing to explore this option should consult with their neurologists, local rehabilitation facilities or hospitals to see whether this type of training is available.

Study Provides Intriguing Lead on Immune Attack Factor

A study by Dr. Magdalena Laska and colleagues at Denmark’s Aarhuis University suggests that components of a virus called HERV-Fc1 (for human endogenous retrovirus) – which are derived from genes normally found in the DNA of all humans – are present at higher levels in plasma and on immune cells in people with active MS. The study provides an intriguing lead to a factor that may either cause or result from immune attacks in MS or other disorders. Further research will be needed to better define the unknown role of this factor and its possible implications for people with multiple sclerosis.

Dallas and Houston Researchers Examine MS Triggers in Kids

Investigators nationwide are recruiting children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms), and children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. The study, funded by the National Institutes of Health, leverages the National MS Society’s support of the Promise: 2010 Local MS Clinics Provide Specialized Pediatric Network of Centers of Excellence. Care Findings from the study should help reThe National MS Society has 15 MS censearchers understand more about how MS beters and clinics in Texas, located throughout gins in children; this better understanding can the Austin, Dallas, Houston and San Antonio eventually be applied to adult forms of MS. areas. Each provides specialized care and Those under age 18 who had disease services for persons living with MS.  The inter- onset (MS or CIS) in the last two years may disciplinary teams of physicians, nurses and enroll in this study with the consent of their other health professionals in these centers parents. Children without MS or CIS can enand clinics have significant experience and roll if they are 19 or younger and don’t have expertise in multiple sclerosis. To locate an a demyelinating disease or an autoimmune MS clinic near you, call the Society at 1-800disorder (except asthma). 344-4867. Texas sites that are enrolling participants TOLL FREE NUMBER 1 800 344 4867

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MS RESEARCH

include the MS Clinic for Pediatric Neurology at Texas Children’s Hospital in Houston and The University of Texas Southwestern Pediatric Demyelinating Disease at Children’s Hospital in Dallas. For further information on this study, con-

tact Janace Hart with the University of California – San Francisco at 415-514-2476. For more information on these and other MS research advances, visit the Society online at nationalMSsociety.org and click the Research tab.

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 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 1-800-3444867.

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SAVE THE DATE

COME MIX & MINGLE

with members of our Bike, Walk, & Renaissance Event Committee Members and our Event Top Fundraisers WHEN: Thursday, August 23 WHERE: Clearview Room inside of Clearview Mall, Metairie, La. TIME: 6 p.m. RSVP – 1-800-344-4867, Option 1 ****FOOD FROM ZEA’s WILL BE PROVIDED**** TAKE ACTION

TOLL FREE NUMBER 1 800 344 4867

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NON-PROFIT ORG. U.S. Postage PAID Metairie, LA Permit # 242

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National Multiple Sclerosis Society - Louisiana 4613 Fairfield St. Metairie, LA 70006 FORWARDING SERVICE REQUESTED

For more information, contact us at 504.322.3790 or rebecca.pennington@nmss.org.


MSConnection Louisiana Summer 2012