louisiana msconnection fall 2012

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Fall 2012 Louisiana MOVING TOWARD A WORLD FREE OF MS Society Awards Scholarships to 7 College-Bound Students In 2012, the National MS Society: South Central was able to offer 48 scholarships to high school seniors. In Louisiana, 6 students were awarded scholarships. These Society-funded scholarships not only ease the financial burden of college for families impacted by multiple sclerosis, but they also invest in the future of talented, dedicated students. Five of the 6 Louisiana recipients plan to go into medical occupations to make a difference in the lives of those living with disabilities. Congratulations to all of our 2012 recipients as they begin their college careers this fall: Kevin Kurten Sulphur, Louisiana A graduate of Sulphur High School, Kevin plans to attend McNeese State University in Lake Charles, LA. In high school, he participated in 4-H, Junior Leaders, Key Club, Leo Club, and Spanish Club. He is also an Eagle Scout with 5 Eagle Palms and is very active as a community volunteer. Kevin plans to major in Criminal Justice and pursue a career in Criminal Justice / Homeland Security. Samantha Robicheaux Berwick, Louisiana A graduate of Berwick High School, Samantha plans to attend Louisiana State University and A&M College in Baton Rouge, LA. In high school, she participated on the Softball, Tennis and Basketball teams. She also was in the Drama and Foreign Language Clubs. Samantha plans to apply to the Pharmaceutical College at the University of Louisiana, Monroe Campus so that she can someday help others with their medications. Amber Robinson Slidell, Louisiana A graduate of Salmen High School, Amber plans to attend Delgado Community College in New Orleans, LA. In high school, she participated in Family, Career and Community Leaders of America, and she was an active volunteer in her community. Amber plans to attend the Community College for her first two years before transferring to a university to pursue a career as a nurse practitioner. Kirstin Swain Bastrop, Louisiana A graduate of Prairie View Academy, Kirstin plans to attend The University of (continued on page 3)

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Fall 2012 edition of MSConnection, a quarterly newsletter from the National MS Society for persons in Louisiana impacted by multiple sclerosis

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Page 1: Louisiana MSConnection Fall 2012

Fall 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

Society Awards Scholarships to7 College-Bound Students

In 2012, the National MS Society: South Central was able to offer 48 scholarships to high school seniors. In Louisiana, 6 students were awarded scholarships. These Society-funded scholarships not only ease the financial burden of college for families impacted by multiple sclerosis, but they also invest in the future of talented, dedicated students. Five of the 6 Louisiana recipients plan to go into medical occupations to make a difference in the lives of those living with disabilities.

Congratulations to all of our 2012 recipients as they begin their college careers this fall:

Kevin KurtenSulphur, Louisiana

A graduate of Sulphur High School, Kevin plans to attend McNeese State University in Lake Charles, LA. In high school, he participated in 4-H, Junior Leaders, Key Club, Leo Club, and Spanish Club. He is also an Eagle Scout with 5 Eagle Palms and is very active as a community volunteer. Kevin plans to major in Criminal Justice and pursue a career in Criminal Justice / Homeland Security.

Samantha RobicheauxBerwick, Louisiana

A graduate of Berwick High School, Samantha plans to attend Louisiana State University and A&M College in Baton Rouge, LA. In high school, she participated on the Softball, Tennis and Basketball teams. She also was in the Drama and Foreign Language Clubs. Samantha plans to apply to the Pharmaceutical College at the University of Louisiana, Monroe Campus so that she can someday help others with their medications.

Amber RobinsonSlidell, Louisiana

A graduate of Salmen High School, Amber plans to attend Delgado Community College in New Orleans, LA. In high school, she participated in Family, Career and Community Leaders of America, and she was an active volunteer in her community. Amber plans to attend the Community College for her first two years before transferring to a university to pursue a career as a nurse practitioner.

Kirstin SwainBastrop, Louisiana

A graduate of Prairie View Academy, Kirstin plans to attend The University of

(continued on page 3)

Page 2: Louisiana MSConnection Fall 2012

The MS CONNECTION is a publicationof the National Multiple SclerosisSociety, Louisiana, and is publishedfour 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

Development ManagerJennifer Simon, BA

Office ManagerSusan McCarthy

Offices clOsed fOrUpcOming HOlidays

National MS Societyoffices will be closed

on the following days:

ThANKSGIVINGWednesday, Nov. 21 (half-day closure); Thursday, Nov. 22; and Friday, Nov. 23

ChRISTMAS:Friday, Dec. 21 (half-day closure)

Monday, Dec. 24 —Wednesday, Dec. 26

Page 3: Louisiana MSConnection Fall 2012

TOLL FREE NUMBER 1 800 344 4867 | 3

Cover STory — continued

Scholarship - (continued from page one) Louisiana, Monroe Campus. In high school, she participated on the Varsity Softball,Basketball and Track teams. She also participated in Fellowship of Christian Students, Student Council, National Honor Society, and on the Yearbook staff. As a participant in AHEC, she completed 90 hours of community service and earned many awards. Kirstin plans to pursue a career as a radiologist.

Elizabeth VenableIndependence, Louisiana

A graduate of Albany High School, Elizabeth plans to attend The University of Louisiana, Monroe Campus. In high school, she participated on the Albany High School Stingerz Dance Team, as well as in the BETA Club. Elizabeth plans to pursue a career as a pharmacist.

Chelsea WynderNatchitoches, Louisiana

A graduate of Natchitoches Central High School, Chelsea plans to attend Northwestern State University in Natchitoches, LA. In high school, she participated on the Natchitoches Central Maroon Line Dance Team, in Student Government, PBIS, Students Against Destructive Decisions, Key

Club, Future Business Leaders of America, and Freshman Mentors. She is also an active volunteer in her community. Chelsea plans to major in Nursing, and upon completion of her BSN, she plans to become a nurse practitioner specializing in pediatrics.

2013 Scholarship Applications Available Online

The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning 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.

Starting Oct. 1, 2012, 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 mid-January 2013.

For guidelines and applications, visit nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1).

The Society’s website also has information on additional scholarship opportunities, including federal assistance and other financial aid resources.

Page 4: Louisiana MSConnection Fall 2012

SELF-HELP GROUPSALEXANDRIASecond Tuesday, 6 p.m.HealthSouth, Conference Room on first floor104 N. Third StreetFor 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

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

MANDEVILLESecond Tuesday, 7 p.m.St. Timothy Methodist ChurchEducational BIdg.335 Asbury DriveSusan Scott andPeggy Cartier, Co-Leaders Leaders needed for 2013

METAIRIEThird Thursday, 7 p.m.1000 W. Esplanade AveMetairie, LA 70005504-838-4375(for directions to library), Maureen Ardoin, Co-Leader504-322-3781

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 ORLEANSSecond Monday6 to 7:30 p.mOchsner – Baptist Campus4429 Clara St.New Orleans, La. 70115Conference Room – Krew Room 310Mimi 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 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.

4 | JOIN THE MOVEMENT: nationalMSsociety.org

SuPPORT GROuPS

Page 5: Louisiana MSConnection Fall 2012

SHREVEPORTMeetings Resume in November Date & Time TBDPlease contact Anna Mossfor details at [email protected] or 504-322-3781. Willis-Knighton HospitalSteen Hall Eye Institute2611 Greenwood Rd.(corner of Greenwood and Hearne Ave.)Wayne holloway - Co-LeaderAllen Lawrence-Co - Leader

THIBODAUXSecond Tuesday6:30 p.m.Thibodaux Regional Medical Center602 North Acadia RoadThibodaux, La. 70301Ann howell - Co-LeaderNicki Boudreaux - Co-Leader

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

SuPPORT GROuPS

TOLL FREE NUMBER 1 800 344 4867 | 5

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)

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].

Page 6: Louisiana MSConnection Fall 2012

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. FOLSOM - NEW hEIGhTS ThERAPEuTIC RIDINGParticipants with multiple sclerosis receive a 10% discount on classes. Additional financial support available.www.newheightstherapy.org.

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!

6 | JOIN THE MOVEMENT: nationalMSsociety.org

LOuISIANA PROGRAMS

Nominees for Board of Trustees Now Being AcceptedIndividuals interested in being considered for nomination to the Board of Trustees

should submit a letter of interest and a biography, along with full name, mailing address, email address and phone number.

Nominees will be notified of board member expectations, responsibilities, and fiduciary and time commitments. Final candidates will be interviewed by a member of the Governance Committee.

Nominations for the Board of Trustees must be submitted by Nov. 15, 2012 to:Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054

Page 7: Louisiana MSConnection Fall 2012

LeADerSHIP

TOLL FREE NUMBER 1 800 344 4867 | 7

National Multiple Sclerosis SocietyLouisiana Leadership Council Members

Mike PalamoneChairNew Orleans

Jane HeidingsfelderVice ChairNew Orleans

Dr. Bridget BagertNew Orleans

John P. Laborde, Sr.New Orleans

Amparo (Amy)Gutierrez, M.D.

New Orleans

Scott DugginsNew Orleans

Jimmy FahrenholtzNew Orleans

Jamie BeemanBaton Rouge

Mark PrestonNew Orleans

Thomas G. KrentelNew Orleans

Robert Howson New Orleans

Austin J. Sumner, M.D.New Orleans

David TaborThibodaux

Peggy WilsonNew Orleans

Robert J. Whann, IIINew Orleans

Scott GalanteNew Orleans

Colin HulinNew Orleans

Page 8: Louisiana MSConnection Fall 2012

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ADvoCACy

MS Activists Connect Legislators to the Cause in 2012An MS Activist is someone who is

willing to talk with their representatives in government, tell their personal story of how they are affected by MS, and discuss the legislative issues that are priorities to them. Those who are willing to take on this role can play a critical part in supporting legislation that creates positive change for those living with chronic illnesses.  Their input can give lawmakers valuable perspective on how public policy will impact their ability to cope with MS and live full and independent lives. 

This past year, our MS Activists have been active in Louisiana. Some of the highlights include:

Taking Action at the 2012 Louisiana Public Policy Conference• 39 individuals impacted by MS met at

the capitol for a day-long conference, including both training workshops and real life experience, as each volunteer met with their state representatives to tell their story.

• MS Activists thanked their legislators for support on the Continuity of Prescription Drug bill, passed during the previous 2011 legislative session. This bill requires insurance companies to maintain the cost of prescription drugs throughout the life of the contract, and to provide advance notice of any cost changes prior to the end of the contract year.

August Recess Visits• Seven “August Recess meetings were

conducted in Louisiana with a total of 15 MS Activists participating. These meetings, held while federal legislators and their staff were back in their home districts during

the month of August, were an opportunity for MS activists to tell their stories and ask for support of our 2012 federal priorities. Lawmakers want and need to hear from their constituents during this time, and our volunteers were able to make an impact by educating lawmakers on the daily challenges of living with MS.

• MS Activists asked congressional leaders to join the Congressional MS Caucus, invest in federally funded MS Research, and support legislation that would continue federal programs that help families and loved ones who care for persons living with chronic illnesses.

• Congressmen Bill Cassidy, Rodney Alexander, and Steve Scalise joined the MS Caucus this year.

Taking Action on State Issues• MS Activists worked in partnership with

the Louisiana Advocacy Center to advocate for state funding to reduce the state’s wait list for Community Choice Waivers. This funding, if approved, would help Louisianans living with MS have access

MS Activists Roi-Lynne Hulin, Crystal Smith, Brenda Moore, Liz Taylor, Shannon Brooks and Chuck Fontenot met with Brenda Moore, Grants Coordinator in Senator David Vitter’s office.

Page 9: Louisiana MSConnection Fall 2012

to the health services they need to stay in their own homes and avoid entry into a nursing facility.

• MS Activists responded to action alerts by emailing and calling their representatives to encourage them to approve the funding. At the time the funding was being considered, there were more than 25,000 Louisianans, many living with MS, on the waiting list, but our coalition was successful in securing the funding for an additional 500 slots in the program.

Louisiana honors 2011 Legislative Champions at Reception hosted by Ochsner health System During MS Awareness Week• Former State Senator Joel Chaisson and

former State Representative Juan LaFonta were presented with the 2011 National MS Society Legislative Champion Award

for their work in the passage of the

continuity of prescription drug legislation in the Louisiana Legislature in 2011.

To learn more about MS advocacy efforts, including information on local, state and federal priorities and opportunities, please visit www.nationalmssociety.org/

Former Senate President Senator Joel Chaisson, Crystal Smith, and Former Representative Juan LaFonta at the Legislative Champions Reception.

TOLL FREE NUMBER 1 800 344 4867 | 9

ADvoCACy

MS Activism volunteers Tonya Lied (left) and Kathy Lied (middle), along with National MS Society Staff Crystal Smith (right), met with Congressman Rodney Alexander.

MS Activists Shannon Brooks, Erin Hulin, Megan Bel, Crystal Smith, Liz Taylor and Jimmy Fahrenholtz met with Megan Bel, Legislative Director for Congressman Scalise.

Page 10: Louisiana MSConnection Fall 2012

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MS reSeArCH

researcH rOUnd-UpClinical Trial Shows Promise for New Therapy for Relapsing MS

In a clinical trial involving 1,169 people with relapsing-remitting multiple sclerosis, oral teriflunomide reduced relapses compared with placebo over at least 48 weeks. Of two different doses tested, the higher dose also slowed progression of disability. This is the third completed of five phase III studies involving teriflunomide in multiple sclerosis. An application for marketing approval of teriflunomide was accepted for review by the U.S. Food and Drug Administration last fall.

These and results from additional studies should help define the short-term safety and promise of teriflunomide as a potential new therapy for relapsing MS.New MS Drug Application Filed for FDA Review

In June, Genzyme announced that it had submitted a new drug application to the FDA for approval to market alemtuzumab – under the proposed name Lemtrada – for treatment of relapsing MS. The application was based on positive results from several clinical trials involving people with relaps-ing-remitting MS. Alemtuzumab is given by a cycle of IV infusions only once per year. The FDA review process generally takes from six to 10 months.

“People with MS need more treatment options.  If the FDA agrees to file this appli-cation and its review finds alemtuzumab to be safe and effective, it would represent a significant new treatment advance,” said Dr. Timothy Coetzee, Chief Research Officer of the National MS Society.

Botox Research Moves to Reduce Arm Tremors

Botox significantly reduced arm tremor, and improved arm and fine hand movements and function, in a small study of people with MS. If confirmed in a larger study, this research may yield a new strategy to address this common and disabling symptom of MS, which is often resistant to treatment.Italian Study Finds Therapies Reduce Risk of Disease Progression

Researchers who studied outcomes for 1,178 people with multiple sclerosis from three MS centers in Italy have concluded that using disease-modifying therapies significantly reduced the risk of progressing from relapsing-remitting to secondary-progressive MS. This study adds to the body of evidence suggesting that MS therapies improve future outcomes for people with MS, having a positive effect not only on inflammation but also on the damage to nerve tissues that causes progression of disability over time. The study requires further confirmation, but it indicates the value of pursuing every novel avenue to answer questions posed by MS.Protein May hold Key to Immune Attacks

According to a new study published in The New England Journal of Medicine, researchers have identified a protein that may be a target of the immune attack in some people with MS. An immune response to this protein – called KIR4.1, which is found on several types of brain cells – was observed in the serum of 47 percent of people with MS who were tested.

Page 11: Louisiana MSConnection Fall 2012

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MS reSeArCH

Further research is needed to confirm these findings, and to fully understand what the role of this protein may play in MS and its potential for developing new treatments. This international study was supported by grants from the German Ministry for Education and Research and the National MS Society, among others.Scientists Probe Effects of Stress Management on MS Activity

In a recent study, a 24-week stress man-agement program reduced disease activ-ity on MRI scans significantly more than in a control group. However, the benefits seemed to disappear after the weekly in-per-son stress management sessions were com-pleted. Future studies should provide more clarity for optimizing the potential benefits of stress management in people with mul-tiple sclerosis.

The authors are continuing to examine these results. They also suggest that the use of telephone, Internet and mobile phone interventions may help sustain the results of stress management programs after the program stops, since long-term standard be-havioral intervention can be burdensome for patients who must make weekly office visits.

Christoph Heesen, M.D., and Stefan Gold, Ph.D., with the University Medical Center Eppendorf in Hamburg, Germany, noted that this study may provide the first direct evidence “for a causal link between stress and inflammatory activity in these patients.” They also suggested that the study shows that science needs to be more mindful of “a biopsychosocial model of disease.” This model acknowledges that biological and psychological factors contribute to diseases such as MS.

Immune B Cells May harm Myelin-Making Cells

Researchers have found evidence that immune cells known as B cells from people with MS may produce toxic factors that harm brain cells, in particular, cells that make myelin, the key substance needed for nerve transmission. If these factors can be identified and confirmed to play a role in MS disease progression, it may serve as an important target for developing new MS therapies. In the future, it may also become possible to stimulate B cells to turn off the production of this toxic factor in people with MS.FDA update Addresses Seizure Risk for Those Taking Ampyra

On July 23, the U.S. Food and Drug Administration (FDA) released a Drug Safety Communication to address the risk of seizures in people with MS who are starting Ampyra (dalfampridine, Acorda Therapeutics). Ampyra was approved in January 2010 to improve walking in people with multiple sclerosis. Seizures are a known side effect of Ampyra and seizure risk increases with higher blood levels of the drug.

Based on its evaluation of post-marketing reports of seizures occurring in people with MS on the therapy, the FDA is updating prescribing information for Ampyra. The update advises that kidney function should be checked before starting Ampyra and monitored at least annually, because impaired kidney function can result in high blood levels of the drug.

The FDA also emphasized that patients who miss a dose should not take extra doses, since an extra dose of Ampyra can

Page 12: Louisiana MSConnection Fall 2012

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MS reSeArCH

increase seizure risk. In an evaluation of adverse event reports, most of the seizures happened within days to weeks after starting the recommended dose and occurred in patients having no history of seizures. Most of those who experienced seizure were at least 50 years old and were at risk for mild,

age-related kidney impairment.The FDA communication noted that

“potential benefits of Ampyra treatment must therefore be carefully considered against the potential risk of seizures before using Ampyra in patients with mild renal impairment.”

Stuff Our Stocking for the holidays and BeyondMany people have

holiday wish lists at this time of year. At the National MS Society, our wish list is in season year-round.

Financial gifts provide the Society with the most flexibility in delivering programs and services to everyone affected by multiple sclerosis. However, we recognize that many people have resources and

connections to a variety of needed products and services that can also help us reach our goals.

If you would like to donate any of the items listed below or know someone who can, please contact Taylor Mallia with Strategic Philanthropy by calling 1-800-344-4867 or via email at [email protected].

Thank you for making the holidays – and the entire year – bright with your support.

• Airlinetickets• Artandsportingevent

tickets• Audio/visualequipment

and services• Bannersandsigns• Beverages• Catering• Children’sactivities• Eventsupplies,suchas

tents, tables and chairs• Floristservices• Food• Giftcertificatesorgift

cards to any store• Giveawayitems• Homemodification

equipment or services• Hotelaccommodations• Ice• Officesupplies,including

paper, mailing labels and toner

• Professionalphotographyservices

• Professionalprintingservices for postcards, posters, brochures and

newsletters• Plaquesandawards• Plasticandpaper

products• Portabletoiletsat

fundraising events• Postage• Rentalandrefrigerated

trucks• Restaurantspaceand

usage for receptions• Walkers• Wheelchairs

Page 13: Louisiana MSConnection Fall 2012

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SUPPorT

Sharing a Parent’s Diagnosis with Childrenby Yavonda Chase

A diagnosis of multiple sclerosis usually comes with as many questions as the disease has symptoms. What does this mean? Am I going to become disabled? Am I going to be in a wheelchair? How do I tell my loved ones? Should I tell my employer? Will I have to quit working?

For parents, there are additional questions: What do I tell my children? When do I tell my children? 

Garry Teeter, a licensed professional counselor, National Board certified counselor and certified brain injury specialist and trainer in Bryant, Ark., understands growing up in an MS family.

His dad, Charles Teeter, was diagnosed with the disease in 1954. Garry Teeter and his twin brother were born in 1955. MS was just part of life for them.

Now, Teeter works to help other families deal with MS.

Teeter recommends that parents have a clear understanding of what they are facing and try to get a grip on their emotions before telling their children about multiple sclerosis. He cautions that if the parents haven’t addressed the emotional aspect of the diagnosis, the child will pick up on the emotions instead of what is being said.

Children often internalize what they don’t understand, Teeter said. Parents need to be careful to ensure a child doesn’t internalize

the diagnosis and believe MS is his fault — that he caused it and that he can fix it.

He recommends giving very concrete descriptions when discussing the disease with children. 

For example, ask a child questions such as, “Have you noticed that mom or dad has had difficulty standing or been really tired lately?”  Then, help the child understand that the reason for these symptoms is something called MS.

Children find their safety and security in

their parents, Teeter said, so if mom and dad are OK with this, the children will be as well.

Teeter’s parents used an analogy of a lamp and its electric cord to explain the disease. 

A lamp that has lost some of the protective coating on the cord will work, but the light may flicker or short out sometimes. Teeter said his parents told him and his brothers that repairs needed to be made to the cord and things had to be done to take care of the lamp.

“Don’t over-communicate too much information that they can’t process or understand,” Teeter said.

Also, be aware of teaching moments, he said. When an MS symptom occurs is a good time to sit down with the child and explain it. However, a good frame of mind at the time is key. If a child senses anger, then he may

Page 14: Louisiana MSConnection Fall 2012

SUPPorT

14 | JOIN THE MOVEMENT: nationalMSsociety.org

believe the parent is mad at him, not the disease.

Teeter also recommends that if a child wants to help, work with him to find areas to contribute. However, be careful not to overload the child and let him sacrifice too much.

While most parents with MS are dealing with younger children, some people are being diagnosed with MS at an older age. These cases offer the potential for the child to become the caregiver, so parents need to allow time for the child to process that thought. Teeter said it is a good idea to reassure the child that this conversation is about giving them information and not necessarily about asking them to shoulder responsibility.

Teeter recommended counseling as an option for helping a family to develop a long-range care plan, as well as aiding a child who feels burdened or obligated by a parent’s diagnosis.

Yavonda Chase is a contribut-ing writer from Little Rock.

Dear National MS Society and all of those who support the Society,

I want to send a heart-felt thank you for the financial assistance you provided me last year. Because of your generosity, I was able to install hand controls in my ve-hicle. Your assistance has greatly improved my life!

Due to MS, I had not been able to drive since De-cember 2009. I live alone, and felt very isolated and dependent upon others to provide the things I need and, of course, for transportation. Unable to work and having limited resources, the prospect of being able to install hand controls and become more independent seemed unlikely.

When I learned of possible assistance through the National MS Society, I regained hope and made a phone call. Everyone was so nice, and the process went so smoothly, quickly and efficiently. I would especially like to thank Marcia Stephens, Information Resource Specialist, and Jessica Fisher, Coordinator of Programs and Services. Both were extremely knowledgeable and helpful. Within a very short timeframe, my vendor was paid, the controls were installed and I began to drive again!

I have regained some independence and it has made a significant difference in my quality of life. Thank you so very much for your assistance. I am very grateful to the National MS Society and all they do, and so appreciate the contributions made by so many.

With gratitude and appreciation,Kim Dixon

Page 15: Louisiana MSConnection Fall 2012

TOLL FREE NUMBER 1 800 344 4867 | 15

JOIN THE MOVEMENT. CREATE CHANGE.

BE AN MS ACTIVIST.

We are all activists. An MS Activist:• Stays informed and learns about critical policies

affecting people living with MS.• Shares their personal story.• Boldlyaskspublicofficialsforsupport.• Joins with other MS activists in the community.

The National Multiple Sclerosis Society relentlessly advocatesforlocal,stateandfederalpoliciestobenefitpeople impacted by MS.

Online and on the ground, thousands of grassroots MS activists are getting involved and taking action.

Fill out this form and sign up today!

Coming Next Spring: Louisiana Public Policy ConferenceShare your story and help educate your state representatives in this full-day conference. Training provided. Register as an MS Activist to receive notice once registration opens.

Your voice, your story, your action can be the catalyst for change. Make a difference by registering to be an MS Activist. You will receive

emails about MS issues and opportunities to get involved.

Name:

Address:

City:

State: Zip:

Phone:

Email:

Contact Us To Learn More:

Crystal Smith

[email protected]

504-832-4013, 800-344-4867

www.nationalMSsociety.org/advocacy

SAve THe DATe

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

Page 16: Louisiana MSConnection Fall 2012

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

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PAIDMetairie, LAPermit # 242

But together, we cango farther, raise more money,and do more to help everyoneliving with multiple sclerosis.

Thank you for your support ofBike MS: Louisiana 2012!

No single one of us can beatMS alone in our community.