MSConnection Louisiana Summer 2012

Prepping for a wedding can always be exciting -- everything from the makeup to the dress selection -- there is nothing like anticipating where the night will go and the fun to be had; but in Erin Hulin’ case, she was getting ready for more than just a wedding; 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 battle between her brain and body was now a constant in her life, and she refused to let it take over. She was now on a personal mission, which also turned into a work mission – it was all about getting the word out.

It was when the company she works for, Peoples Health, stepped up and became her biggest advocate in her long journey and fight against MS that Hulin knew this was

her way of spreading the word about the symptoms and reality in living with MS.

“I’ve worked here for about five years,” Hulin said, “and there is something of an organizational culture where service is an expectation, filtering down from the top

administrators to all departments.”Peoples Health is headquartered in

Metairie and employs over 700 people, servicing throughout Southeast Louisiana. The company has always been a supporter and advocate of many non-profits in New Orleans and continues to sponsor several events for the MS Society.

Summer 2012 Louisiana

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

A Company’s Initiative for an Employee’s Future

- continued on page three

by KIM KEEL

Peoples Health “Our Hope” Team – WALK MS New Orleans 2012

The MS CONNECTION is a publicationof the National Multiple SclerosisSociety, Louisiana, and is publishedthree times a year.

4613 Fairfield StreetMetairie, La. 70006phone: 1-800-344-4867, Option 1or 504-832-4013, Option 1www.mslouisiana.org

Nationwide MS Hotline:1-800-344-4867, Option 1NMSS 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 | JOIN THE MOVEMENT: nationalMSsociety.org

ATTENTIONHelp us “GO GREEN” by signing up to receive this

newsletter by email. If interested call1-800-344-4867, Option 2, Ext 3787.

LouisianaRegional Executive Vice PresidentMark Neagli

Vice President of Development, LouisianaRebecca Pennington, Ph.D, CFRE

Director of Programs & ServicesCrystal Smith, bA, MSCIR, MSSMC

Coordinator, Programs & ServicesAnna Moss, bSW

Development ManagerJessica Aubin, bS

Office ManagerSusan McCarthy

This Summer, Volunteer to Make a Difference

Volunteering is always in season at the National Multiple Sclerosis Society. Volun-teer opportunities are available for a wide range of talents and skills, and for both one-time 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 vol-unteer with the Society as a team-building experience.

For information on volunteer opportu-nities near you, visit volunteerMS.org or contact the National MS Society directly at 1-800-344-4867.

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Cover STory — continued

“We were able to accommodate Erin’s schedule due to her diagnosis,” said Colin Hulin, Chief Information Officer at Peoples Health and Erin’s father. “I asked myself ‘What do we need to do to accommodate not only her schedule, but any employee diagnosed with MS?’”

Peoples Health has become Hulin’ outlet, where she can share information with her colleagues whom had never confided in anyone about what they were dealing with. Hulin’ drive and ambition to advocate for MS motivates those around her to get involved with MS and other diseases, whom some may be fearful of discussing.

“In this company, we are compassionate – it’s part of our culture,” Hulin said. “It is his/her personal choice to expose any health issue, but here, there is an emphasis to not be scared to talk and that we are here to support and listen.”

Now the MS liaison for Peoples Health, Hulin is looking forward to the increasing support and programs that will be available for all employees of Peoples Health, as well as their family members and friends.

“We continue to host Lunch & Learns at the office so any employee is welcome to learn about the disease,” Hulin said. “We’ve had great turnouts and I see that more and more people continue to show up in support.”

Hulin and her family and friends participated in the bike MS 2011 and Walk MS 2012 events where they established a

team of volunteers and supporters. Erin’s bike MS team raised $4,245.00 of the $795,000 grand total raised this year. Hulin and Peoples Health – “Our Hope” team raised a total of $15,351 of the $224,800 grand total raised this year by the three WALKS in Louisiana combined. Hulin personally raised $6,085

for her team. Due to Hulin’s marketing efforts, over 95 Peoples Health employees showed up to the walk in April in support of the cause.

“At the end of the day, my company and I together have raised a significant amount,” Hulin mentioned, “and we plan to raise more this year.”

Hulin’s plans continue well beyond participating in this year’s MS walk and bike tour. Some of these plans include promoting important initiatives at Public Policy Day in baton Rouge and becoming highly active in the MS Society. She is also pursuing her master’s of healthcare management at University of New Orleans in the fall while continuing to communicate her story through her blog posts at www.erinhulin.com.

“I want to continue spreading the word while making a career for myself,” she said, “I want to increase the company’s efforts including: multiple donations, establish weekend retreats, schedule educational series and continue building the tools and resources to help all of the employees and their loved ones – in hopes that this will one day help eradicate the disease.”

Erin and Roi-Lynne Hulin model team shirt “Our Hope is to end MS Forever”

SELF-HELP GROUPSALEXANDRIAHealthSouth, Conference Room on first floor104 N. Third StreetSecond Tuesday, 6 p.m.For more information:Tarra Babin andShada Brown, Co-Leaders318-374-0058

AMITE/HAMMONDFirst Tuesday, 5:30 p.m.Tangipahoa Police Sub-station15475 Club Delux Rd., Meeting RoomHammondBill and Judy Perkins, Leaders985-878-6313Stephanie Carter,Co-Leader985-542-2705

BATON ROUGEThird Tuesday, 12 NoonFamily Road ofGreater baton Rouge323 E. Airport(directions: 225-201 -8888)Joyce Smith andDonna Hildebrandt,Co-Leaders

HOUMAFirst Thursday,7 to 8:30 p.m.Terrebonne GeneralMedical CenterOutreach Center,Southland Mall5953 Park Ave, Suite 3003Fran LeBlanc, LeaderPenny Gilton, Co-Leader

LAFAYETTEFirst Tuesday,5:30 p.m.Lafayette Physical Rehabilitation Hospital307 Polly LaneDawn Abbott, LeaderAngela Trahan, Co-Leader

TRI-PARISHES SELF-HELP GROUP * (see note)ON HOLDSt. John the baptistParish Library2920 Hwy. 51LaPlace, La. 70068985-652-6857(for directions to library)Leader/Co-Leader needed

MANDEVILLESecond Tuesday,7 p.m.St. Timothy Methodist ChurchEducational bIdg.335 Asbury DriveSusan Scott andPeggy Cartier, Co-Leaders Leader/Co-Leader needed

METAIRIE * (see note)New - Third Thursday, 7 p.m.Starting March 2012No February Meeting504-322-3781Maureen Ardoin, Co-LeaderLeader/Co-Leader needed1000 W. Esplanade Ave.Metairie, La. 70005(Library # for directions.)504-838-4375

MONROELast Thursday, 12 NoonGlenwood Med. Mall, Community Room102 Thomas Road West MonroeLynn Armet, Leader

NEW ORLEANSWest bank JestersFirst Friday of each monthat 10:30 a.m.Gretna Community Center1700 Monroe St.Gretna, La. 70053Diane Orlesh, Leader,504-394-5623Kim Maloz, Co-Leader,504-394-2274First time visitors shouldcall Diane or Kimto confirm location.

MID-CITY NEW ORLEANSNewly Diagnosed GroupOchsner – baptist Campus4429 Clara St.New Orleans, La. 70115Conference Room – Krew Room 310Second Monday6 to 7:30 p.m. starting September 12thMimi Jalenak, Leader504-861-0859For directions callOchsner Dept. of Neurology 504-842-3980(M– F, 8 a.m. – 5 p.m.)Mid-City New Orleans SHG and the LSU MS Clinic SHG will be merging to offer


SuPPORT GROuPS

breakout groups to clients and their caregivers. More details will be out soon. Please contact Anna Moss with any questions [email protected] or504-322-3781.

SHREVEPORT * (see note)ON HOLDWillis-Knighton HospitalSteen Hall Eye Institute2611 Greenwood Rd.(corner of Greenwood and

Hearne Ave.)Linda Galloway, LeaderLeader/Co-Leader needed

THIBODAUX(starting in Sept.)Thibodaux Regional Medical Center602 North Acadia Road Thibodaux, La. 70301Second Tuesday6:30 p.m. For more information please callAnna Moss at 504-322-3781

VINTONKnights of Columbus1424 Grace AvenueVinton, La. 70668Second Saturday10 a.m. – 11:30 a.m.Elaine Briggs, Leader337-309-5124* 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.

SuPPORT GROuPS


Self-Help Groups Offer Both In-Person and Phone Supportby 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.

To find a group that meets in-person near

you, call the National MS Society at 1-800-344-4867.

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:Susan LaCombe is Programs and Services Manager in the Society’s Dallas office. She can be reached at [email protected].

Phone Group Name Meeting Day/Time Call-In NumberHome is Your Range First Wednesday of each

month1 p.m. CST

1-888-346-3659 (enter code 1073 when prompted)

MS and CancerGroup contact,Margaret [email protected]

Fourth Wednesday of each month3 p.m. CST

1-888-346-3659 (enter code 1073 when prompted)

Cafe con Leche: Conversations and Support for People Living with MS Monthly telephone group in Spanish

Stay at Home Support for those living with MS for five years or more

Tuesdays1 to 2:30 p.m. CST

Third Wednesday of each month11 a.m. CST

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

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

ALExANDRIA – MS AquATICSyMCA-Alexandria, 1831 Turner St.Call Emmy Partain, program coordinator, for details at 318-445-8261. BATON ROuGE – MS CHAIR AEROBICSbaton Rouge Self Help Group Meetings on occasions with Donna Hildebrandt. COVINGTON – MS YOGAStar Fitness Center in Covington. MS participants can participate without being members of center at a cost of $5 per class. LAFAYETTE – MS CHAIR YOGAOur 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 AquATICSOur 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 AquATICSEast 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 AquATICSWillis-Knighton Wellness Center, Greenwood location. Classes meet Wednesdays 3:30 to 4:30 p.m., $5 per monthCall Holly biernet, program facilitator, for details at 318-212-4475.

Wellness Program reminders!


LOuISIANA PROGRAMS

Get Connected and Raise Awareness with New Online Community

What if everyone living with mul-tiple 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 connec-tions a reality.

you can join the Society’s new MS Con-nection online community and make mean-ingful connections when, where and how

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, up-dated 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 commu-nity at MSconnection.org today.

ADvoCACy

TOLL FREE NUMBER 1 800 344 4867 | 7

Hundreds of MS activists from Chapters across the United States were On the Frontline at the National MS Society’s 2012 Public Policy Conference (PPC). Once again, strong and vibrant MS activists learned about federal policy issues important to people affected by MS and proactively carried our messages to their U.S. Congressmen and Senators on Capitol Hill, raising awareness about MS and to urge support on critical issues.

This year, the Louisiana delegation was stronger than ever with a record of five MS Activists in attendance. We are thankful to Walter and Lisa Chaisson, Paul Chaisson and Erin Hulin for their enthusiasm and hard work over a packed 3 days at the conference. Together, we had 7 meetings with Louisiana legislators. The meetings were engaging, impactful and meaningful to all. Our group was well prepared and were well-spoken. The team shared their amazing, extremely relevant tories, which aligned with our 2012 priorities.

It was my honor and pleasure for the opportunity to bring this group of MS Activists to D.C. and we look forward to continuing to work closely with all on these and future priorities.

See the following fact sheets for the 2012 priorities and take action.

UPDATES: Congressman Rodney Alexander and Congressman bill Cassidy have both joined the MS Caucus since our meetings with them in D.C.!

Please take a moment to thank them if you live in their districts.

We’d like to point out the excellent news that the House Appropriations Committee just approved $5 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP). The House passed its Defense Appropriations bill containing this funding on May 18, 2012. There are many more steps before Congress reaches a final budget agreement, but in the interim—great work, everyone! We could not have achieved this success without the advocacy conducted at the Public Policy Conference, the efforts securing signatures on the Dear Colleague letter, and the more than 5,700 emails that activists sent to Capitol Hill through our alert system.Contact Crystal at [email protected] for more information. To take action in advocacy efforts complete the MS Activist sign-up form in this issue and mail, fax or email to Crystal at the Society office in Louisiana.

( from left) Erin Hulin, Lisa and Walter Chaisson, Paul Chaisson and Crystal Smith

MS Activists on the Frontline at Capitol Hill

Congressman Rodney Alexander with Louisiana Delegation


ADvoCACy

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MS GeTAwAy

MS GetawayThe 2012 MS Getaway was a successful

event thanks to everyone who participated! The MS Getaway was held at The Wesley Cen-ter 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 Well-ness. 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 Ful-ly, Live Well” where they learned more about how to cope with symptoms of MS, dieting regulations, exercising techniques and trav-eling 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 individu-als with MS. Some of the workshops included yoga, sit or stand exercising, writing/journal-ing, couples discussion, caregiver discussion, “Free from Falls” program, “Working for Me” progressive MS program, life with MS discus-sion, arts and crafts and massage sessions for those with MS!

The entire MS Getaway group gathered outdoors following dinner to enjoy t-shirt tie-dying, lawn games, making s’mores, dancing and eating some delicious watermelon! We ‘beat the heat’ for sure!

The weekend ended on Sunday morn-ing following a meditation session and a fun, group photo! We hope to see everyone again next year! Thank you everyone who attended!


MS reSeArCh

Research Round-UpHotter 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 im-prove the design of future clinical trials.

Warmer weather tends to worsen many people’s neurological symptoms of MS. Re-search 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 be-tween outside temperature and the ability of people with MS to perform various men-tal 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 record-ed. 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 re-gardless 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 mentally-challenging college course in the summer or winter. The results also suggest that clini-cal trials involving people with MS should take temperature into consideration when designing the study and interpreting the results, especially when cognitive testing is

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 col-leagues 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 ef-fects of an exercise program involving bal-ance and eye movement training – or “ves-tibular 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 medi-cal 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 vari-ous muscles. The vestibular rehabilitation program included balance exercises on vari-ous surfaces, arm movements while kneeling, head movements on a trampoline and while fixating on different objects, and ball catch-ing while walking; the program also included

TOLL FREE NUMbER 1 800 344 4867 | 13

three types of eye movement exercises. Ex-ercise programs were performed for 60 min-utes 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, de-pression, 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 dizzi-ness or disequilibrium. Depression and walk-ing ability were minimally improved. Four weeks after the exercise program ended, those in the vestibular rehabilitation pro-gram group continued to show benefit.

based on these preliminary results, bal-ance and eye movement training may help people with MS who are experiencing fa-tigue and balance problems. Those wishing to explore this option should consult with their neurologists, local rehabilitation facili-ties or hospitals to see whether this type of training is available.

Local MS Clinics Provide Specialized Care

The National MS Society has 15 MS cen-ters and clinics in Texas, located throughout the Austin, Dallas, Houston and San Antonio areas. Each provides specialized care and services for persons living with MS. The inter-disciplinary teams of physicians, nurses and other health professionals in these centers and clinics have significant experience and expertise in multiple sclerosis. To locate an MS clinic near you, call the Society at 1-800-344-4867.

Study Provides Intriguing Lead on Immune Attack Factor

A study by Dr. Magdalena Laska and col-leagues at Denmark’s Aarhuis University suggests that components of a virus called HERV-Fc1 (for human endogenous retrovi-rus) – 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 pro-vides 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 de-termine environmental and genetic risk fac-tors that make children susceptible to devel-oping MS. The study, funded by the National Institutes of Health, leverages the National MS Society’s support of the Promise: 2010 Pediatric Network of Centers of Excellence.

Findings from the study should help re-searchers understand more about how MS be-gins in children; this better understanding can eventually be applied to adult forms of MS.

Those under age 18 who had disease onset (MS or CIS) in the last two years may enroll in this study with the consent of their parents. Children without MS or CIS can en-roll if they are 19 or younger and don’t have a demyelinating disease or an autoimmune disorder (except asthma).

Texas sites that are enrolling participants

MS reSeArCh

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 1-800-344-4867.

MS reSeArCh


include the MS Clinic for Pediatric Neurology at Texas Children’s Hospital in Houston and The University of Texas Southwestern Pediat-ric Demyelinating Disease at Children’s Hos-pital in Dallas.

For further information on this study, con-

tact Janace Hart with the University of Cali-fornia – 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 Re-search tab.

Wheelchair Van for Sale - $18,9002002 Dodge Grand Caravan Sport, 4 Door, Wheelchair Conversion, Tan, Excellent Condition, 55,000 miles. Michelin tires. Rear entry ramp, lowered floor, power kneel, new battery, holds two wheel chairs. Auto Check available.

Contact: George at 504 283 6820

COURTESY ADVERTISEMENT LISTING

TOLL FREE NUMbER 1 800 344 4867 | 15

COME MIX & MINGLEwith 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****

SAve The DATe

TAKe ACTIoN

National MS SocietyNational Multiple Sclerosis Society - Louisiana4613 Fairfield St.Metairie, LA 70006

FORWARDING SERVICE REQUESTED

NON-PROFIT ORG.U.S. Postage

PAIDMetairie, LAPermit # 242

For more information, contact us at 504.322.3790 or [email protected].

MSConnection Louisiana Summer 2012

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