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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 Fall 2010

Louisiana

‘Tis the Season to Keep the Holidays from Stressing You Out by James Black

For anyone with MS, stress can make the holiday season anything but holly and jolly.

One of the first steps is recognizing your own stress signals. Physical signs can include rapid heartbeat, sweaty palms, stomachaches, muscle spasms, dry mouth, sleeping too much or too little, headaches and fatigue. Emotional signs of stress can include anxiety, worry, irritability, boredom, depression, nightmares and a feeling of being overwhelmed.

The impact of stressors varies from one person to the next, just as the effects of multiple sclerosis vary. Researchers agree, however, that it’s crucial for you to determine how to comfortably manage those things that cause Despite best intentions, individuals with MS you stress so they, in turn, do not exacerbate can add to their own stress: in an effort to pull your MS symptoms. off a perfect holiday and be seen as the host with the most, you might find yourself facing dizzying demands. Work, parties, shopping, baking, cleaning, caring for elderly parents or children on school break, and an annual avalanche of activities can individually and collectively take their toll. Holiday stress is often the result of three main trigger points. Understanding these triggers can help you plan on how to best handle them: • Relationships: Your personal and professional relationships can cause turmoil, conflict or stress at any time, but tensions intensify during the holidays. Family misunderstandings and conflicts can heighten, especially if you’re all thrust together for several days. Conflicts are bound to arise with so many different

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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, MSCIR Development Manager Jessica Tuite Program Coordinator Brenda Brown Development Coordinator Jennifer Guza Office Manager & Administrator 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 3773.


message from the regional executive vice president

As 2010 Draws to a Close, We Keep Moving to Help Others in 2011 As we wrap up another busy and productive year at the National MS Society, it’s time to reflect on how each of us has made an impact on the world around us, as well as how much we must continue to do in the new year.

We generate much-needed funds through our annual fundraisers, such as the popular Bike MS and Walk MS events; through Strategic Philanthropy, including grants, individual gifts, major giving and workplace giving; from third-party and leadership events, such as our Dinners of Champions and On the Move Luncheons; and from funds from our Society Everyone at the Society headquarters through its direct marketing works to ensure that efforts, campaigns and general donations. the spirit of goodwill and helping others Every dollar makes a difference and every Regional Executive thrives year-round. We contribution helps someone who must face Vice President Mark do it by making sure the challenges of MS each day. You can Neagli the gifts we receive help through one-time or recurring monthly – through donations, donations; tributes and memorial gifts in fundraisers and other contributions – are honor of a loved one; pledges to a Bike MS wisely and efficiently used on behalf of the or Walk MS event participant; workplace people we serve. Persons giving; and planned-giving with MS – as well as their gifts through bequests, Every dollar makes a families, friends and health charitable gift annuities, care professionals – trust trusts or other estate plans. difference and every and count on us as good With your contributions, contribution helps stewards everyday, not just you’re a partner in our someone who must once a season. journey toward a world free of MS. We couldn’t do face the challenges of MS stops people from what we do without you. MS each day. moving, but we cannot stop in our movement to For information on how provide direct services and to fund research. you can help, I urge you to call us at 1-800We must work non-stop to raise funds to 344-4867. Thank you for your continued move us closer to an MS cure. The economic involvement in the MS movement. I wish you environment of the past two years has made and your loved ones a wonderful and joyful that mission more challenging, but it is a holiday season. challenge we must – and will – face with dedication and determination. TOLL FREE NUMBER 1 800 344 4867

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LOUISIANA programs

Wellness Program Reminders!

Alexandria – MS Aquatics YMCA-Alexandria, 1831 Turner S. 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.

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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 p.m. – 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 p.m. to 4:30 p.m., $5 per month. Call Holly Biernet, program facilitator for details at 318-2124475.


SAVE THE DATE A Special Program is coming to your area. The NAEP program entitled: “Who? Why? How? Searching for the Cause of MS”. This video program profiles discussions with leading medical researchers on the causes of MS and how these efforts may lead to treatments and even finding a cure. It will highlight specific studies in the areas of the causes of MS such as immunologic, environmental, infectious and genetic. It will examine the possible link between CCVSI and MS.

SPECIAL UPCOMING LOUISIANA programs

The program will be held in the following areas before the end of 2010: WEST MONROE, LA – Thursday, October 28, Noon – Glenwood Medical Mall Community Room, 102 Thomas Rd. HOUMA, LA – Thursday, Nov 4 - Terrebonne General Medical Center at Southland Mall, 5953 Park Avenue, Suite 3003 Our next newsletter will have the program dates and times for the locations for 2011: Shreveport, New Orleans, Alexandria, Amite/Hammond, Lafayette, Ruston, Metairie and Baton Rouge. Please call 800-344-4867, Option 1 to register for the above programs.

2011 Scholarship Applications Available Online Starting Oct. 1, 2010, National MS Society scholarship applications for 2011 are available online at nationalMSsociety.org/scholarship. Applications and supporting materials must be submitted by Jan. 14, 2011. Applicants must plan to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life.  One-year awards range from $1,000 to $3,000. A small number of four-year awards are also offered. TOLL FREE NUMBER 1 800 344 4867

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support groups

SELF-HELP GROUPS

METAIRIE Third Tuesday, 7 p.m. Louisiana MS office • 4613 Fairfield Street 504-322-3787 Janice Naquin, Leader

ALEXANDRIA Permanent Location to be announced For more information: Tarra Babin and Shada Brown, Co-Leaders MONROE 985-878-6313 318-374-0058 Last Thursday, 12 Noon Glenwood Med. Mall, Community Room AMITE/HAMMOND 102 Thomas Road • West Monroe First Tuesday, 5:30 p.m. Lynn Armet, Leader Tangipahoa Police Sub Station 15475 Club Delux Rd., Meeting Room NEW ORLEANS Hammond, LA West Bank Jesters Bill and Judy Perkins, Leaders First Friday of each month at 10:30 a.m. 985-878-6313 Gretna Community Center Stephanie, Co-Leader 1700 Monroe St. • Gretna, La. 70053 985-542-2705 Diane Orlesh, Leader, 504-394-5623 Kim Maloz, Co-Leader, 504-394-2274 BATON ROUGE First time visitors should call Diane or Kim Third Tuesday, 12:00 Noon to confirm location. Family Road of Greater Baton Rouge 323 E. Airport (directions: 225-201 -8888) RUSTON Joyce Smith Second Saturday, 10:30 a.m. to 12 Noon Donna Hildebrandt, Co-Leaders Health South Ezell Street (across from Green Clinic) HOUMA Barbara McIntyre, Leader, (318) 243-1858 First Thursday, 7 p.m. to 8:30 p.m. Sherry Lewis, Co-Leader Terrebonne General Medical Center Outreach Center, Southland Mall SHREVEPORT 5953 Park Ave, Suite 3003 First Tuesday, 6 p.m. Fran LeBlanc, Leader Willis-Knighton Hospital/Steen Hall Eye Institute Penny Gilton, Co-Leader 2611 Greenwood Rd. (corner of Greenwood and Hearne Ave.) LAFAYETTE Linda Galloway, Leader Lafayette Physical Rehabilitation Hospital 307 Polly Lane A new Self Help Support Group will start in January Dawn Abbott, Leader for the River Parishes: St. Charles, St. John and Angela Trahan, Co-Leader St. James. If you live in these areas and are interested in participating in a group in LaPlace MANDEVILLE please contact us. A volunteer is ready to lead Second Tuesday,7 p.m. the group. The group will start as soon as we have St. Timothy Methodist Church identified participants. Educational BIdg. • 335 Asbury Drive Call Brenda or Crystal at 504-832-4013. Susan Scott & Peggy Cartier (Co-Leaders) 6

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CHAPTER PROGRAMS

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

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 1 p.m. Central 1st Wednesday of each month 3 p.m. Central 4th Wednesday of each month 11 a.m. Central 3rd Wednesday of each month

Call-In Number 1-888-346-3659 (enter code 1073 when prompted) 1-888-346-3659 (enter code 1073 when prompted) 1-888-346-3659 (enter code 64552 when prompted)

Susan LaCombe is Programs and Services Manager in the Society’s Dallas office. She can be reached at susan. lacombe@ nmss.org.

Nominees for Board of Trustees Now Being Accepted

Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with name, mailing address, e-mail address and phone number.

interviewed by a member of the Governance Committee.

Nominations for the Board of Trustees must be submitted by Nov. 15, 2010 to: Mark Neagli Nominees will be notified of board member National MS Society expectations, responsibilities, fiduciary and 8111 N. Stadium Drive, Ste. 100 time commitments. Final candidates will be Houston, TX 77054 TOLL FREE NUMBER 1 800 344 4867

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LOUISIANA ACTIVISM

MS TAX CHECK OFF IS NOW ACT 217

The National MS Society, Louisiana hosted our first Town Hall Meeting in Shreveport on August 23, 2010 to promote the new MS Tax Check-off for Louisiana. Former Rep. Wayne Waddell of Shreveport, Dist. 5 and author of our Tax Check-off legislation joined us for a meet and great with members and to present us with a copy of our Bill, now Act 217, signed by Governor Jindal. Rep. Waddell was gracious enough to have it costumed framed as a gift to the Society. We are grateful to Rep. Waddell, his assistant Rodney Clements and to our GRC Chair, Ray Lauga Sr. and Chad Lauga of our Government Relations Committee who played significant roles in pursuing this legislation. Highlights of the program included a presentation on the new MS Tax Checkoff and how it will support programs and services in Louisiana and we heard about the latest MS research taking place at LSUHSC

Chad Lauga, Rodney Clements, Crystal Smith, Wayne Waddell and Ray Lauga Sr. – Shreveport by Dr. Ikuo Tsunoda. We were also privileged to have Tonya Lied Kidd who is the reining Mrs. America with us. Tonya was pleased to learn the information regarding the tax check-off and has taken on MS Awareness as her platform in her role as Mrs. America. Tonya has a close family member with MS and is grateful for the opportunity to stand up for a cause so near and dear to her heart.

Write On and Share Your Story We’re always seeking contributors for MSConnection, which reaches persons with multiple sclerosis, their families, health care professionals and others throughout Louisiana. What’s your personal story with MS? How has the movement toward a world free of MS touched you? What advice and insight can you offer others affected by MS? Your story has the power to inspire, motivate and move others. If interested in contributing for the next issue, contact MSConnection Editor Crystal Smith at csmith@nmsslouisiana.org.

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advocacy

TOLL FREE NUMBER 1 800 344 4867

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Holiday Stress - (continued from page one) personalities, needs and interests. On the other hand, if you’re facing the holidays without a loved one or on your own, you may find yourself especially lonely or sad. • Finances: Like relationships, your financial situation can cause stress at any time, especially when so many individuals and families are affected by the present economic situation. Holiday overspending on gifts, travel, food and entertainment can magnify stress as you try to make ends meet. • Physical demands: The strain of shopping, attending social gatherings and preparing holiday meals can wipe you out, especially when you’re dealing with the daily challenges of MS. Feeling exhausted increases your stress, creating a vicious cycle. High demands, lack of exercise, and overindulgence in food and drink are also volatile ingredients for holiday stress.

• • • • •

When stress is at its peak, it’s often difficult to stop and regroup. Being realistic, planning • and seeking support can help. Try to prevent stress and depression in the first place, especially if you know the holidays have taken an emotional toll in previous years. You may even wind up enjoying the holidays more • than you initially thought you would. Here are some practical tips for managing your stress during the holidays: • Ask for help when you need it. Make your requests as specific as possible: “Would you please help me by …” • Set realistic goals and learn to say “no.” 10

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You don’t have to do anything if you don’t have the time, energy or desire. People will understand if you can’t do certain projects or activities. If you say “yes” only to what you really want to do, you’ll avoid feeling resentful, bitter and overwhelmed. Realize that, as families change and grow, traditions and rituals often change as well. Hold on to those you can and want to retain, but accept that you may have to let go of others. For example, if your children, grandchildren or friends can’t all gather at your house as usual, find new ways to celebrate together from afar, such as sharing photos, e-mails or phone calls. Get extra sleep before family gatherings or important events. Give yourself extra time to get to where you’re going. Expect travel delays, especially if you’re flying. Do one thing at a time. Don’t feel pressured to do as much as possible. Schedule rest periods. Don’t abandon healthy habits. Some indulgence is OK, but overindulgence only adds to your stress and guilt. Learn to revise time schedules. If you told a friend that you’d meet at noon to go gift shopping and you’re running late, is there any reason you can’t meet at 1 or 2 p.m. instead? Seek support. If you feel isolated or down, seek out family members and friends, or community, religious or social services for support and companionship. Consider volunteering during the holidays with the National MS Society or at a community function. Getting involved and helping others can lift your spirits, broaden your friendships and ease your stress.


• Enlist support for organizing holiday gatherings, meals and cleanup. • If you’re feeling stressed, share your concerns and responsibilities with others to lighten your load practically and emotionally. It’s OK now and then to take time just to cry or express your feelings. You can’t force yourself to be happy just because it’s the holiday season. • Set differences aside. Try to accept family members and friends as they are. Be understanding if others get upset or distressed; chances are they’re feeling the effects of holiday stress, too. • Resolutions can set you up for failure if they’re unrealistic, so set smaller, more specific goals with a reasonable time frame. Choose only those resolutions that help you feel valuable and that provide more than only fleeting moments of happiness. • Seek professional help if you need it. Despite your best efforts, you may find yourself feeling persistently sad, anxious, unable to sleep or irritable. Talk to a health

care professional about your concerns or symptoms. A convenient online resource for finding therapists and mental health services is HelpPRO.com. In addition, the National MS Society has a variety of documents and Webcasts on identifying and managing stress, relaxation techniques and more. Accessing these resources is stress-free: They can be found online at nationalMSsociety.org; simply click the link for Living with MS, followed by the link for Healthy Living. You can also call the Society for information at 1-800-344-4867 (press 1). This year, take the right steps so stress doesn’t “Grinch” your holidays. Remember, this holiday season and year-round, you’re in control of your stress; your stress isn’t in control of you. James Black is the editor of MSConnection and Strategic Communications Specialist in the Society’s Houston office. He can be reached via e-mail at james.black@nmss.org or by calling 713-394-2964.

Multiple Sclerosis Comparator Study The MS Clinic at LSU Health Sciences Center in New Orleans is participating in a study to measure the effect of switching FDA approved medications for participants diagnosed with Relapsing Remitting Multiple Sclerosis. Study participants must be between 18 and 60 years of age, have had a diagnosis of RRMS and be actively treated with medication for at least 6 months. If you would like more information about this study, please e-mail Study Coordinator Ann McKendrick at the MS Clinic at LSU at msclinic@lsuhsc.edu. Drs. Amy Gutierrez, Principal Investigator, and Jesus Lovera staff the MS Clinic at 2820 Napoleon Ave., Suite 700, New Orleans, LA, and will be happy to answer any questions that you may have about this clinical trial. Study medication, study tests and study office visits will be covered by the study sponsor, Biogen Idec. Participation may last 2 or more years. TOLL FREE NUMBER 1 800 344 4867

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DEVELOPMENT

National Multiple Sclerosis Society: Louisiana Will Host Annual Peoples Health Renaissance Festival Friday, Nov. 19, 2010 NEW ORLEANS – Aug. 20, 2010 – The Louisiana office of the National Multiple Sclerosis Society will host its fifth annual Peoples Health Renaissance Festival at 7 p.m. Friday, Nov. 19, 2010, at the Renaissance Arts Hotel. “We are so excited about this year’s party,” Jane Heidingsfelder, chair person of the Renaissance Festival Planning Committee, said. “We invite everyone to experience an evening of fine food, drink, entertainment by the Bucktown All-Stars, artwork, and incredible auction packages as we mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.” Since 2006, the Renaissance Festival has raised more than $650,000 to support programs and services for the approximately 4,000 people in Louisiana who are affected 12

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by multiple sclerosis. “A large part of our success with the Renaissance Festival is due to the continued support of our presenting sponsor for the event, Peoples Health,” Rebecca Pennington, vice president of development for the Louisianan office, said. “Partnerships such as this are what allow the MS Society to provide programs and services to individuals and families affected by MS throughout Louisiana” Peoples Health supports many health and wellness initiatives throughout the New Orleans region, including our major sponsorship of the Renaissance Festival for the past three years. “We’re honored to continue our relationship with this important event,” says Mike Putiak, chief marketing officer for Peoples Health. “At the core of our organization is the goal to enhance the health and well-being of the community we serve.  And being a sponsor of the


DEVELOPMENT

Renaissance Festival is a wonderful way to support that goal.” For more information or to reserve tickets, contact Rebecca Pennington at 504-3223790 or rpennington@nmsslouisiana.org. About the National Multiple Sclerosis Society MS stops people from moving. The National MS Society exists to make sure it doesn’t.   The Society addresses the challenges of each person affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move their lives forward.  In 2009 alone, through its national office and 50-state network, the Society devoted over $132 million to programs that enhanced more than one million lives. To move us closer to a world free of MS, the Society also invested nearly $36 million to support 375 research projects around the world. The National MS Society, Louisiana serves more than 4,000 individuals and their families impacted by MS throughout the state. The Society is dedicated to achieving a world free of MS. Join the movement at MSLouisiana.org. Early and ongoing treatment with an FDAapproved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care

professional and contacting the National MS Society at nationalMSsociety.org or 1-800344-4867. About Peoples Health Established in 1994, Peoples Health is a Medicare Advantage organization serving Medicare beneficiaries in southeast Louisiana. The physician-owned company has over 500 employees that help administer and provide a unique approach to wellness, care coordination and support services for plan members. The company is a proud supporter of many social, cultural, athletic and health organizations and holds an accreditation by URAC. More information about Peoples Health can be obtained by visiting www.peopleshealth.com. About Multiple Sclerosis Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and over 2.1 million worldwide.

TOLL FREE NUMBER 1 800 344 4867

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development

Bike MS 2010 is in the Books!

T

he annual event, held this year on October 2-3, began Saturday morning at Southeastern Louisiana University and traveled 75 miles north to Percy Quin State Park in McComb, Miss. and back to Hammond on Sunday. The event was a GREAT success. The weekend was filled with blue skies, a cool breeze, and 1,000 cyclists and over 200 volunteers who wanted to do something about MS now. The meals were delicious as always and were given a special touch by Chef John Folse and Co. This year was also a milestone year for one of our great volunteer groups our HAM radio operators; they have been supporting the Bike MS Louisiana ride for 25 years. Without them we would all be lost in the countryside of Louisiana and Mississippi and we hope they are

with us for at least another 25 years. Here at the Louisiana Office of the National MS Society the boxes are unpacked and the office is getting back to “normal” but the fundraising for Bike MS 2010 continues. If you would like to support the event or if you would like to support someone you know who rode you still have time. Please feel free to contact our office at 504-322-9790 or 1-800344-4867.

Bike MS Louisiana 2011 is just around the corner so mark your calendar for the weekend of October 1-2 to either ride or volunteer, it doesn’t matter to us we just want to see you there.

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LOUISIANA WALK MS 2011 REGISTRATION FORM Complete this form and fax to 504-831-7188 or mail to: 2010 Louisiana Walk MS National MS Society • 4613 Fairfield Street • Metairie, LA 70006 PARTICIPANT TYPE:  WALKER  VOLUNTEER Would you like to self-pledge now to get your fundraising started? Donation: $_______________________ TOTAL ENCLOSED: $________________ CIRCLE PAYMENT METHOD: CHECK AMEX DISC MC VISA Make checks payable to NMSS. Please do not send cash in the mail. ________________________________________ Name on Credit Card ________________________________________ Billing Address ________________________________________ Credit Card Number ________________________________________ Expiration Date ________________________________________ Signature

SITE:  Baton Rouge (March 19, 2011)  New Orleans (March 26, 2011)  Shreveport (April 9, 2011)  Virtual Walker TEAM INFORMATION  Register me as an individual participant  Register me as part of a team: _______________________________  Register me as a team captain of a new team Team Name: _____________________________________________ Team Type (circle): Friends/Family Corporate School Organization Team Fundraising Goal (if new team): $_______________________ PARTICIPANT INFORMATION Name: ____________________________________________________ E-mail: ____________________________________________________ Address: ___________________________________________________ City, State Zip: ______________________________________________ Phone: ____________________________________________________ Date of Birth: ______/______/______ Gender: MALE FEMALE Were you referred by a friend? _________________________________ How many years have you participated in the Walk MS? ____________ Personal Fundraising Goal: $__________________________________ If you raise at least $100, you will qualify for an official event t-shirt. T-shirt Size: S M L XL XXL For more information on Louisiana Walk MS 2010 visit our website at www.mslouisiana.org. TOLL FREE NUMBER 1 800 344 4867

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development

Year-End Giving Helps Others in Need All Year Long by Kristen Stubbs

several disease-modifying oral medications. This breakthrough alone will transform It’s hard to believe that another year has countless lives, as many people living with come and gone – it seems that every year MS will be able to take a pill instead of using December comes sooner than the one before a needle when taking their MS medications. it! Because of gifts from many generous donors Each year, I take this opportunity to highlight and event participants, we were able to give some of the programs and services the $6.8 million to research in 2010 – research that will be instrumental in three areas of Society has provided to people living with focus: stopping MS progression, restoring MS, as well as a few of the advances in MS research. This article also is an opportunity myelin loss and ending MS altogether. to remind us all of the vast amounts of money that it takes to fund these programs With your year-end gift, the National MS and this extremely vital research. Society can continue to provide programs and services to thousands of people living With the economy slowly making its way with MS and we will be able to continue to back, the Society had the opportunity fund the research that is so vitally important. to move others through our vast array of Please consider making your tax-deductible programs and services. Thousands of people year-end gift today. took part in our wellness classes across the region and nearly 40 Self-Help Groups Kristen Stubbs is Vice provided support and fellowship. We were President of Strategic able to fund and renew more scholarships to Philanthropy. To make students whose lives have been impacted by a contribution to help MS. Nearly 500 volunteers in leadership roles families who need shared their talents to move our mission assistance, or should forward. you have any questions regarding how your gift is 2010 was also a big year in research used and ways in which efforts. The first oral medication for specific your gift can be directed, symptom management became available contact Kristen at 713-394-2991 or kristen. and the FDA has fast-tracked the review of stubbs@nmss.org.

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MS research

Medical Meetings in San Antonio Focus on Research Progress and Issues in MS Clinical Care

PML, a brain infection that has occurred in people taking the MS drug natalizumab.

Russell Katz, M.D., of the U.S. Food and Drug Administration reviewed how his agency monitors risk during the process of drug development. Early on, toxicity in preclinical studies is evaluated to determine whether Basic and clinical research issues were the an agent is relevant for human subjects and focus of the 15th annual meeting of the might preclude the possibility of human Americas Committee for Treatment and trials. When clinical trials are completed and Research in MS (ACTRIMS) in San Antonio this the sponsor files for approval, the agency summer. analyzes the trials’ information to evaluate effectiveness and to determine if the sponsor Held in conjunction with the annual meeting adequately defined and considered all of the Consortium of MS Centers (CMSC) and aspects of the risks. Finally, post-marketing the National MS Society’s Tykeson Fellowship studies are often mandated to determine Conference, ACTRIMS was chaired by Jerry longer-term risks and how known risks can S. Wolinsky, M.D., with The University of be managed. Texas Health Sciences Center at Houston and jointly sponsored by the National MS Society Strategies that may help physicians and patients weigh risks and benefits of and the University of Maryland School of treatments were the subject of several Medicine, in collaboration with the MS presentations. In a National MS SocietySociety of Canada.  supported study of information materials Seven invited lectures, along with 68 related to natalizumab and risks of PML, platform and poster presentations, were Sascha Köpke, Ph.D., and colleagues at the made at the ACTRIMS meeting; 20 cited University of Hamburg and other institutions funding from the National MS Society’s across Germany found that, after reading research programs.   the materials, patients were generally more tolerant of safety risks than neurologists. Following are highlights of select lectures The investigators pointed out the need for and presentations at ACTRIMS, with a unbiased information to facilitate informed, summary of the CMSC conference: shared decision-making between patients and their treating physicians. Managing Treatment Risks Treating Mental Health Problems ACTRIMS featured sessions on managing David Rintell, Ed.D., with Brigham and the apparent increase in treatment risk in Women’s Hospital in Boston and colleagues more potent available and experimental MS reported on a massive effort to understand treatments, such as the risk of developing mental health problems in persons living TOLL FREE NUMBER 1 800 344 4867

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MS research

with MS, funded by a Health Care Delivery and Policy contract from the National MS Society. Rintell’s team surveyed 3,300 people with MS and then queried 1,118 people who reported receiving mental health treatment about their experiences. Of these, 60 percent reported having mental health problems and 14 percent reported serious mental illness. Of those with serious mental illness, 44 percent received no mental health treatment. Of the 56 percent who did receive treatment, only half received it from mental health professionals; the others received mental health treatment from their primary care physicians, neurologists or nurses. The results show the need to improve strategies for identifying and treating mental health problems in people with MS. Oral Teriflunomide Results Mark Freedman, M.D., with the University of Ottawa and colleagues reported on phase II results of a study in which two different doses of an oral immune-modulating agent called teriflunomide, or placebo, were added to ongoing interferon beta-1a therapy in 116 people with relapsing-remitting MS for one year. Disease activity as observed on MRI scans was reduced by 86 percent over placebo in the lower dose group and by 82.8 percent over placebo in the higher dose group. The most frequently-reported adverse events were upper respiratory tract infections, headaches and gastrointestinal disorders. Liver enzyme elevation occurred, not 18

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exceeding three times the upper limit of normal. Larger-scale, phase III studies of teriflunomide are underway in relapsing MS and in people at high risk for MS. Report from CMSC Annual Meeting The Consortium of MS Centers focuses on the clinical care of people with MS. A session in June featured both ACTRIMS and CMSC papers, facilitating networking among basic and clinical researchers, neurologists, and allied health professionals who attended these meetings. Following is a sample of the CMSC meeting’s reports on research to improve the care of people with MS: Fatigue Fatigue is one of the most common symptoms of MS, occurring in about 80 percent of people living with multiple sclerosis. Marcia Finlayson, MSc, OTR, Ph.D., with the University of Illinois at Chicago and colleagues studied the effectiveness of a teleconference-delivered fatigue selfmanagement program in 190 people with MS. The program comprised six weeks of 70-minute, weekly sessions delivered by a licensed occupational therapist. Scores on a scale measuring fatigue and physical function improved significantly with the program. Improvements were maintained at six-month follow-up; mental health showed significant improvement at six-week follow-up.


MS research

Telephone-based interventions can be an important addition to the fatigue treatment spectrum for people with MS who have mobility issues. This presentation won the meeting’s Patient and Family Education Award for Best Platform Presentation.

to be weakness in the legs and fatigue. Further research is needed to test whether interventions for these symptoms improve community participation.

Bladder Dysfunction

Barbara G. Vickrey, M.D., MPH, with the University of California in Los Angeles was awarded a Health Care Delivery and Policy contract from the National MS Society to define what constitutes quality MS health care and how to measure it to establish better standards of care for people with MS. She led a team of MS specialists and social scientists to analyze medical literature. The team then submitted its findings to a group of 15 stakeholders in MS care, including people with MS, who rated each measure’s importance and impact.

Bladder dysfunction occurs in the majority of people with MS. Maria Lopes de Carvalho, M.D., Ph.D., and colleagues from the AISM Rehabilitation Centre with the Italian Multiple Sclerosis Society in Genova designed individualized, 12-session urinary rehabilitation programs for 62 people with MS. Urinary incontinence decreased significantly, as did urinary retention. Further study may show such efforts to be another addition to treatment options for people with bladder dysfunction in MS. This presentation received the Research Award for Best Platform presentation at CMSC. Community Participation

Measuring Quality Care

The most highly-rated indicators were appropriateness and timeliness of the diagnostic work-up, bladder dysfunction, cognition dysfunction, depression, diseasemodifying agent use, fatigue and spasticity. In the future, these indicators will be further explored in studies to test new ways of delivering high-quality MS care, as well as to help clinicians and health care systems in evaluating the quality of the MS care they provide.

Karon Cook, Ph.D., with the University of Washington and colleagues administered a questionnaire to 1,271 people with MS, asking them to rate how 15 items affected their community participation: heat sensitivity, numbness, bowel or bladder problems, imbalance, problems thinking, sexual dysfunction, slurred speech, spasticity, For additional information and to view the swallowing problems, tremor, vision loss, arm complete 2010 ACTRIMS program, visit actrims.org. weakness, leg weakness, fatigue, and pain. The strongest impediments were deemed

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MS Awareness

Hooping through MS Hello. My name is Babette GranoneRickard, 42 years old. Diagnosed with MS on 10/27/2001 Ever since I was a very young girl, I suffered bouts of undiagnosed of Optic Neuritis and strange events that could never be explained. Life before my MS diagnosis consisted of work, family and friends. I lived a very active life, but when the “mystery illness� hit me, shortly after 9/11/2001, I noticed a change. Within a three day time span, I had numbness in my legs up to my torso, preventing me from walking and feeling anything up to my chest area. This scared the living daylights out of me. After a battery of tests, I got my diagnosis, Multiple Sclerosis. Luckily, I regained my ability to walk (thanks to a massive 12 day dose of IV STEROIDS!) Living with MS for the last decade has brought many changes in my life, some good, and some bad. I chose to focus on the blessings it has given me. It has given me the opportunity to be there 20

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When I am in pain this is how I Grinn & Barret! (Cincinnati, Ohio) Hooping at the famous Sun Studio in Memphis! (Memphis, Tenn.)


MS Awareness

time. Hooping helps to keep me moving and keep on going. I hope you enjoy some of our hooping pictures we took along the way! Some of our highlights included Grinn and Barret intersection in Cincinnati, Ohio. Sun Records in Memphis, Tennessee. New Orleans Louisiana MS Society. Hoover Dam and Las Vegas, Nevada.

This is how we amuse ourselves as we keep moving! more for my son, my family and friends. Sure it has slowed me down a lot but it hasn’t stopped me. Once I was unable to work, unfortunately my mother was sick‌ but being off work, allowed me to be with her through her final days. I am so thankful for this. Recently I had another MS blessing. I had the chance to help a good friend move home to California from Pennsylvania. We took a ten day road trip across the country, stopping along the way to Hula hoop showing people how I KEEP MOVING all while trying to create MS awareness by HOOPING one day at a time. During our grand trip across the states I decided I wanted to see and meet others with MS so I gave the Louisiana MS Society a call. I spoke to Crystal and felt an immediate connection. We just had to stop in to say hello. Crystal and all the ladies at the New Orleans Louisiana MS Society office were very welcoming. We shared a few laughs and hooped together. We all had a great

Our visit to the Louisiana MS Society.

Go Crystal!

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MS Awareness

Stay Connected with Monthly Teleconference Series by Angela Wentink Learn about topics that affect your life from the comfort of your own home with the National MS Society’s monthly teleconference series. Each teleconference begins at 7 p.m. Central on the second Wednesday of each month. To register for each teleconference, call 1-800-344-4867 (press 1). Teleconferences for 2010 and 2011 are: Health Care Reform: Key Issues for People with MS Oct. 13, 2010 Learn how new reform legislation could affect you and your health care coverage.  Find out when major changes will take effect as the law is phased in over time. MS Advocacy Nov. 10, 2010 Hear about the Society’s legislative agenda and how you can get involved. Pillow Talk: MS and Intimacy Dec. 8, 2010 Discuss common sexual issues often associated with MS. Learn what individuals and couples can do to enhance intimacy.  Assistive Technology A-Z Jan. 12, 2011 22

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Benefit from an overview of available assistive technology in the marketplace to help you be more independent at home and more successful in the workplace. Financial Planning Feb. 9, 2011 Financial professionals will discuss the importance of developing an investment plan, including a highlight of investment options and vehicles. Bullets for Employment March 9, 2011 Arm yourself with knowledge of work incentive programs, strategies for returning to work and ways to hold onto health benefits. Mood, Cognition and Memory April 13, 2011 Get tips on coping with mood, cognition and memory symptoms. Learn about treatment options that could help you. MS 101 May 11, 2011 Get a comprehensive MS overview for people who are newly diagnosed.


MS Awareness

Managing Transitions June 8, 2011 MS can throw daily challenges your way in the form of new symptoms, employment issues, altering family dynamics and more. Learn to adjust, cope and adapt to change; discuss emotional responses like grief and loss; and discover resources to help you through these transitions.

can be deeply satisfying, but also physically and emotionally exhausting. This discussion will focus on preventing caregiver burnout. Participants will explore caregiving truths and misconceptions, plus the importance of coping skills and support systems.

Research and What It Means for You July 13, 2011 Learn about new MS research and what it could mean for you.

Website 101 Sept. 14, 2011 This hands-on seminar guides you through the National MS Society website. Learn to easily navigate this powerful tool to stay on top of the latest MS news, research, programs and events.

Caregiver Burnout Aug. 10, 2011 Caring for someone with a chronic illness

Copies of these teleconference programs will be made available upon request. For more information email Brenda.Brown@nmss.org.

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MS research

Society Awards $114,000 in 2010 Scholarships to Lone Star and Louisiana Students Affected by MS Shelbie Louviere, St. Martinville, La. $3,000 Lauren Lyssy, Pipe Creek, Texas $1,000 Ashlee McDonald, Burleson, Texas $3,000 Kimberly McMillian, New Orleans, La. $3,000 Daryl Melancon, Vidor, Texas $1,000 Ricardo Montemayor, The Society established its scholarship San Antonio, Texas $1,000 program in 2003. Samantha Navarro, Plano, Texas $1,000 In its first year, the Morgan Ray, Denton, Texas $3,000 program awarded Megan Sommerfield, Houston, Texas $3,000 36 scholarships for a $1,000 total of $68,000. Since Tyler Stitt, Houston, Texas Veronica Tawney, Beckville, Texas $3,000 then, this initiative Valonia Walker, Humble, Texas $1,000 has continued to Daniel Whiteside, Austin, Texas $1,000 grow; in 2010, nearly Matthew Willis, San Antonio, Texas $3,000 $1 million was Jacob Womack, Texarkana, Texas $1,000 awarded nationwide to 490 scholars. The National MS Society’s scholarship program helps qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college.

Locally, the National MS Society is pleased to announce the 2010 scholarship award recipients. This year, the Society was able to award 24 new college-bound students – up from 15 students in 2009 – with scholarships ranging from $1,000 to $3,000 each. The 2010 Lone Star and Louisiana scholars (in alphabetical order) and their scholarship amounts are: Elizabeth Blaiszik, Pantego, Texas $1,000 Brandi Brisco, New Orleans, La. $3,000 Erick Chaves, Houston, Texas $3,000 Lindsay Clark, Baytown, Texas $1,000 Ashlyn Garlanger, Round Rock, Texas $1,000 Ashley Gipson, Shreveport, La. $1,000 Blair Hoeffner, River Ridge, La. $1,000 Thomas Howe, Austin, Texas $3,000 Kayla Livingston, Saginaw, Texas $1,000 24

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The Society also renewed scholarships for 29 students awarded in 2009, up from 17 renewals for 2008 awards. 2010 scholarship renewal recipients are: Jillian Bean $3,000 Sharon Beard $3,000 Melisa Belvin $1,000 Joseph Calhoun III $3,000 Kyrie Cameron $1,000


MS research

Amy Carabes Kasey Childs Heather Dykes Kristin Fields Sharon Finn Jared Greenfield Callie Hill Cara Huggins Allison Hughes Kirstie Landry Naomi Lopez Machella Luna Matthew McVay Ashley Mitchell Justin Rascher Christopher Ratway Joseph Ratway Rebecca Roberts Scott Salisbury II Richelle Saluga Kelsi Stayart

$3,000 $3,000 $1,000 $3,000 $3,000 $3,000 $3,000 $3,000 $1,000 $2,000 $3,000 $3,000 $1,000 $1,000 $3,000 $2,500 $2,500 $3,000 $3,000 $2,000 $1,000

Alexandra Thomas Alexandria Vargas Mary Warren

$3,000 $3,000 $3,000

With these new 2010 awards and renewals, the National MS Society is locally providing $114,000 – up from $74,000 in 2009 – to fund Lone Star and Louisiana college scholars. The increase in scholarship funding reflects the Society’s ongoing commitment to supporting students affected by MS throughout their academic careers. Support comes from foundations, individual donors and the Society’s own employeegiving program.

Inspiring Concert

Walter Williams, MS Ambassador and lead singer of The O’Jays Band of the sixties, requested Biogenidec to provide two tickets for a client be his special guest at their Biloxi, Miss. concert earlier this summer. “The concert was phenomenal,” said Eric Sterling. “Walter Williams was performing like he does not have MS.” They talked about Walter’s challenges with MS being handled by his performing. Walter told Eric that he Picture from left: Eric and Carol refused to slow down. “As you can see in the photo,” Sterling with Walter Williams back Eric stated, “we were having the kind of fun that would stage at The O’Jays meet and greet make you think that we’ve been friends for years. concert this summer. That made our meeting them a lot more intimate, comfortable and because of MS, personal.” Eric and Walter shared a few of their MS experiences during their brief time together back stage and plan to remain in touch. Eric and Carol were amazed with Walter’s performing on such a high level. This was a night they will always remember. TOLL FREE NUMBER 1 800 344 4867

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farewell

Sad Farewell to Katie Chapman It is with much sadness and a heavy heart that I write this farewell to Katie Chapman. Many of you from North Louisiana and around the state had the opportunity to get to know and love Katie. She was involved with the National MS Society, Louisiana, for many years and was the Self Help Group Leader in Monroe for the past eight years. Additionally, Katie served on the National Programs Advisory Council for the past three years.

personal strength and making yourself valuable,” Danette Matthews, former coworker, said of Katie. “Katie didn’t just do her job, she was always looking for better ways to do things no matter what her job was.” Matthews also said that even when Katie had to move to a nursing home in Bastrop, she displayed a sign to help people with their taxes and offered to burn CDs for people. “Katie was an amazing person and she’ll be missed,” Matthews said. “It’s hard to think of Katie moving on, but I can just see her running through a meadow and then looking for ways to be productive. I have no doubt that she’ll be busy watching over her family and helping those who are discouraged here on Earth.”

Katie was truly an I have personally inspiration to others. She did not let the fact that she known Katie for She would often tell 10 years and was in a chair keep her from new members of accomplishing anything she have admired her the group, “Don’t be immensely. She spread afraid of me, of what wanted to do otherwise. a message of hope to you see….seeing me many and was a fine in a chair does not example of how people utilize creativity to mean this will happen to you…” She did not overcome adversity. Katie did not let that let the fact that she was in a chair keep her chair get in her way when she had a mission. from accomplishing anything she wanted to do otherwise. To Katie’s family and friends….please know that our thoughts and prayers are with you Katie was very savvy and worked on her during this time of grieving. Katie’s legacy computer with a voice activated system will live on forever with the National MS and continued to help people with their tax Society and our members who were blessed returns. She also created her own system by knowing her. of doing things and was very organized and prompt in completing any task that she Sincerely, undertook. “Katie has taught me many lessons about

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Crystal Smith and NMSS, Louisiana Staff


Louisiana Membership Children with MS

Annual membership to the National Multiple Sclerosis Society, Louisiana supports services for nearly 4,000 people living with MS and inclusive in a total of 9,600 lives affected by MS in 64 parishes, and contributes to the Society’s national research programs. Membership benefits include voting privileges at the Chapter Annual Meeting, a oneyear subscription to the National MS Society magazine, Momentum, invitations to Society programs and events, and the Louisiana newsletter, MS Connection. All contributions are tax deductible. Courtesy memberships are available. Louisiana is on a mission to identify members for participation in age specific programs. If you are, or if you have a child 18 years or younger diagnosed with MS……we need to know who you are to participate in family and children with MS programs. Please help us by completing this document and sending back to Louisiana Chapter, Attention Programs Dept. 4613 Fairfield St., Metairie, LA 70006 or by email at louisianachapter@ nmss.org. Name of child_________________________________________________________________ Gender:

Male _________

Female _________

Birthdate_______________________

Address______________________________________________________________________ City__________________________________ State _________ Zip Code _________________ Diagnosed with confirmed MS? Yes _____No ______Possible MS______ Date of diagnosis___________________ Other diagnosis if not MS________________ Parent/guardian information Name________________________________________________________________________ Relationship__________________________________________________________________ Address if different from above__________________________________________________ Phone Number’s_______________________ Email___________________________________ Please check all that apply q My child has MS or related condition, please add to membership list. q My Child does not have MS. Please remove from list. q My child does have MS but I do not want to receive information or services at this time. Please remove from list. National MS Society Louisiana, 4613 Fairfield St., Metairie, LA 70006 (504)832-4013, toll free (800) 344-4867.

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

National MS Society

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

It’s OK in 2011! National MS Society: South Central Region Conference and Annual Meeting Tulsa, OK February 2011 Details on this annual event will be posted online once finalized. Visit JointheMovementLoneStar.org for details or call 1-800-344-4867.


Louisiana MSConnection: Fall 2010  

Fall 2010 edition of MSConnection, published by the National MS Society: Louisiana

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