M O V I N G TO WA R D A W O R L D F R E E O F M S Summer 2011
Louisiana
Louisiana Public Policy Day 2011 Louisiana MS Activists spent the day at the Capitol on Monday, May 16th 2011 rally for support of HB 345 by Rep. Juan LaFonta of New Orleans. 50 MS Activists from many areas of the state gathered in the rotunda of the Louisiana state capitol building to meet and greet with our Louisiana Legislators. Everyone who participated was given an orange I Fight MS t-shirt. The rotunda was glowing in orange as we made quite a bright presence that day. We were an impressive group. We had presentations during the morning by staff and GRC (Government Relations Committee) volunteers to set the tone for the day and to get MS Activists fired up about the day’s events. We hosted a legislative luncheon and meet and greet for our legislators, their staff and our participants. MS Activists met with their legislators throughout the day in the rotunda, including an extended visit by Rep. Juan LaFonta of New Orleans who spoke to our group about HB 345 and gave tips on speaking to legislators. Rep. Steve Pugh of Ponchatoula also spent a good bit of time visiting our group and many activists from his district. We were also recognized in the House Chamber that afternoon by Rep. Katz of Monroe. A little about HB 345 THE ISSUE: Currently, insurers can increase the price of a medication any time during the contract (continued on page 2)
Group photo with Rep. Juan LaFonta and Rep. Steve Pugh
Rep. Juan LaFonta and Jimmy Fahrenholtz
Rep. Pugh with Ponchatoula, Hammond & Metairie Group
PUBLIC POLICY DAY
HEADING
Val DeLucca OTRL demonstarating equipment
year, often by moving a drug to a higher cost-sharing tier. An unexpected increase in cost can be very difficult for a family to absorb, often leaving no option but to cut back on a drug’s use or stop taking it altogether. House Bill 345, by Rep. Juan LaFonta, will put important protections into law: • It ensures that prescription drug coverage stays the same during a contract period. • It requires notice of changes to a prescription drug plan 60 days prior to the reenrollment period. This notice is for affected parties only. • The House Insurance Committee unanimously passed HB 345 with a 10 – 0 vote. • The House of Representatives passed HB 345 with an impressive vote of 81 – 5. • The Senate Insurance Committee unanimously passed HB 345 with an 8 – 0 vote. • The Senate passed HB 345 unanimously with an impressive 37 – 0 vote. Our most sincere thanks and appreciation goes out to Rep. Juan LaFonta for sponsoring HB 345 and bringing us victory in the House and to the Senate President, Senator Joel Chaisson, II for handling HB 345 in the senate and bringing us to victory.
Thank you for all your support of Walk MS 2011!
Tonya Leid Kidd and Cathy Leid greating Legislators
The 2011 Walk MS Louisiana presented by Pfizer is celebrating great success! Many thanks to all who helped make this year’s events so great. The Baton Rouge walk was held on March 19 at Pennington Biomedical Research Center and raised almost $20,000. The New Orleans Walk MS was held on March 26 at Audubon Park and raised an all time high of over $86,000 with another all time high of 1,115 participants. ShreveportBossier City Walk MS in its first year had almost 500 participants raising $30,000. The weather for all events was great and motivated all participants to really get involved. The funds raised will be used to support educational and society programs as well as research that will one day lead to a world free of MS. Top 5 Fundraising Teams- Baton Rouge Team Williams- $3,605 Make Something Happen- $3,533 Cracked Pots- $2,145 Beth’s Brigade- $1,415 Team Tracy- $1,300
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Top 5 Fundraising TeamsNew Orleans The A Team- $12,900 The Bayou Bazingas- $12,483 Mighty Sisters- $3,874 Team Alexis- $3,635 The Gumbo Pot- $3,113 Top 5 Fundraising TeamsShreveport-Bossier City Willis Wipe’n Out MS Warriors- $5,480 North Central LA MS Steppers- $1,730 Flying Pigs- $1,630 Walk for Allie- $1,380 Team Highland- $1,120 Thank you to our sponsors, donors, volunteers and participants. We could not do what we do without you, and we can’t wait to see you in 2012! TOLL FREE NUMBER 1 800 344 4867
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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. 4
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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, MSSMC Development Manager Jessica Tuite 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 3787.
MS AWARENESS
Make the Call to Live Better with Society’s Free Teleconference Series Learn about topics that affect your life from the comfort of your home with the National MS Society’s ongoing teleconference series. Each month’s teleconference is free and begins at 7 p.m. Central on the second Wednesday of each month. To register for a teleconference, call 1-800344-4867 (press 1 when asked). Upcoming teleconferences for July through September 2011 are:
Research and What It Means for You July 13, 2011 In July, we’re heating things up as we find out what’s hot in MS research. Call in to learn about exciting new frontiers in MS research and what this could mean for you and your loved ones.
Caregiver Burnout Aug. 10, 2011 Caring for someone with a chronic illness can be deeply satisfying, but also physically and emotionally exhausting. August’s teleconference will focus on preventing caregiver burnout. Participants will explore caregiving truths and misconceptions, plus the importance of coping skills and support systems. Website 101 Sept. 14, 2011 This hands-on seminar will guide you through the National MS Society’s website. Learn to easily navigate this powerful online tool to stay on top of the latest multiple sclerosis news, research, programs and events.
World MS Day 2011 took place on May 25th this year. Louisiana staff spent the day at the New Orleans Convention Center demonstrating MS with the Rotary International Convention. It was a great day! Partnering with Rotary International to spread MS Awareness with people from many areas of the world made for an exciting day. We networked with people from all over the world. We shared a booth with our friends from Australia (RAGMSA Rotarian Action Group of Multiple Sclerosis Awareness), Martin and Diana Taurins. We visited with many Rotarians throughout our time there and participated in a small group forum to educate on MS, facilitate the “Try On MS” Experience, take questions and learn how we can partner with Rotary International with MS Awareness and to ultimately End MS. We extend our heart-felt thanks to Martin and Diana Taurins and Rotary International for the opportunity to bring MS Awareness to Rotarians worldwide on this very special, World MS Day. TOLL FREE NUMBER 1 800 344 4867 | 5
SUPPORT GROUPS
SUPPORT GROUPS
SELF-HELP GROUPS ALEXANDRIA HealthSouth, Conference room on first floor 104 N. Third Street Second Tuesday, 6 p.m. For more information: Tarra Babin and Shada Brown, Co-Leaders 318-374-0058
LAFAYETTE Lafayette Physical Rehabilitation Hospital 307 Polly Lane Dawn Abbott, Leader Angela Trahan, Co-Leader
NEW GROUP!!!!! TRI-PARISHES SELF-HELP GROUP AMITE/HAMMOND Meet Last Wednesday of First Tuesday, 5:30 p.m. month, 7 p.m. Tangipahoa Police Sub-station St. John the Baptist 15475 Club Delux Rd., Parish Library Meeting Room 2920 Hwy. 51 Hammond LaPlace, La. 70068 Bill and Judy Perkins, 985-652-6857 Leaders (for directions to library) 985-878-6313 Joan Ory, Leader Stephanie, Co-Leader jory@rtconline.com 985-542-2705 BATON ROUGE Third Tuesday, 12 Noon Family Road of Greater Baton Rouge 323 E. Airport (directions: 225-201 -8888) Joyce Smith Donna Hildebrandt, Co-Leaders HOUMA First Thursday, 7 to 8:30 p.m. Terrebonne General Medical Center Outreach Center, Southland Mall 5953 Park Ave, Suite 3003 Fran LeBlanc, Leader Penny Gilton, Co-Leader 6
MANDEVILLE Second Tuesday, 7 p.m. St. Timothy Methodist Church Educational BIdg. 335 Asbury Drive Susan Scott & Peggy Cartier (Co-Leaders)
MONROE Last Thursday, 12 Noon Glenwood Med. Mall, Community Room 102 Thomas Road West Monroe Lynn Armet, Leader NEW ORLEANS West Bank Jesters First Friday of each month at 10:30 a.m. Gretna Community Center 1700 Monroe St. Gretna, La. 70053 Diane Orlesh, Leader, 504-394-5623 Kim Maloz, Co-Leader, 504-394-2274 First time visitors should call Diane or Kim to confirm location.
NEW GROUP MID-CITY NEW ORLEANS TO START IN SEPTEMBER Newly Diagnosed Group Ochsner – Baptist Campus 4429 Clara St. New Orleans, LA 70115 METAIRIE Conference Room – Krew Third Tuesday, 7 p.m. Room 310 Louisiana MS office 2nd Mondays 4613 Fairfield Street 6:00pm – 7:30pm starting 504-322-3787 September 12th Janice Naquin, Leader Mimi Jalenak, LCSW, BACS, CCH, Leader Co-Leader needed in Shreveport! 504-861-0859 Anyone interested in volunteering to For directions call help out with our Shreveport group, Ochsner Dept. of Neurology please call Crystal at 504-322-3787 or 504-842-3980 email at crystal.smith@nmss.org. (M– F, 8:00am – 5:00pm)
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RUSTON Second Saturday, 10:30 a.m. to 12 Noon Health South Ezell Street (across from Green Clinic) Barbara McIntyre, Leader, (318) 243-1858 Sherry Lewis, Co-Leader
SHREVEPORT First Tuesday, 6 p.m. Willis-Knighton Hospital Steen Hall Eye Institute 2611 Greenwood Rd. (corner of Greenwood and Hearne Ave.) Linda Galloway, Leader
NEW GROUP VINTON, LA Knights of Columbus 1424 Grace Avenue Vinton, LA 70668 2nd Sturday 10:00am – 11:30am Elaine Briggs, Leader 337-309-5124
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.
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:
Susan LaCombe is Programs and Services Manager in MS and Cancer the Society’s Group contact, Dallas office. Margaret Barney margaret@msplus.org She can be reached Cafe con Leche: Conversations and Tuesdays 1-888-346-3659 Support for People Living with MS 1:00 p,m. - 2:30 p.m. CST (enter code 64552 at susan. when prompted) lacombe@ Monthly telephone group in Spanish nmss.org. 3rd Wednesday of each 1-888-346-3659 Stay at Home (enter code 64552 Support for those living with MS month 11 a.m. CST when prompted) for five years or more Phone Group Name Home is Your Range
Meeting Day/Time 1st Wednesday of each month 1:00 pm CST 4th Wednesday of each month 3 p.m. CST
Call-In Number 1-888-346-3659 (enter code 1073 when prompted) 1-888-346-3659 (enter code 1073 when prompted)
TOLL FREE NUMBER 1 800 344 4867
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MS RESEARCH
Research Round-Up –
Society Funds $17.5 Million in New Research Projects This spring, the National MS Society announced its commitment of $17.5 million to support 50 new MS research projects as part of its comprehensive strategy to stop multiple sclerosis, restore function that has been lost and end the disease forever. This financial commitment is part of the Society’s nearly $40 million 2011 investment in cutting-edge research projects. The new projects support the comprehensive research goals outlined in the Society’s five-year Strategic Response, including an increased focus on understanding and stopping disease progression, supporting development of new therapies, identifying rehabilitation and other strategies to restore function, and getting more researchers and scientists focusing on MS. The projects include clinical trials testing whether vitamin D can stop MS activity; a clinical trial to evaluate whether a repurposed drug, phenytoin, can protect the nervous system from MS damage; investigations of mechanisms that may lead the immune system to turn against the nervous system; studies of natural molecules that may stimulate repair of the nervous system to restore function; studies exploring novel exercise programs to combat MS symptoms; and a study comparing the 8
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MS RESEARCH
activity of several viruses, including EpsteinBarr virus, that may be involved in triggering immune attacks in people with MS, which may lead to clues to ending MS through prevention. Research Progress Takes Center Stage at Annual Neurology Meeting This spring, more than 10,000 researchers and practicing neurologists from around the world gathered at the 63rd Annual Meeting of the American Academy of Neurology (AAN) in Honolulu. More than 500 presentations related to multiple sclerosis were given, including a presentation by the 2011 John Dystel Prize for MS Research recipient, Dr. Brian Weinshenker with the Mayo Clinic, related to his work and contributions toward understanding MS and the related disorder neuromyelitis optica; National MS Society grantees, and grantees from the MS Society of Canada, NIH and other agencies. Topics included a new trial in primary-progressive MS, advantages of early treatment and its long-term impact, treating sleep disorders, quality of life, MS genetics, the role of immune B cells, myelin repair, environmental risk factors and many more. A full summary of the AAN presentations can be found on the Research section of the Society’s website at www.nationalMSsociety.org. Study Finds No Link between Stress and Development of MS A new study found that stress does not appear to increase a person’s risk of developing multiple sclerosis. The study focused on two large groups of women in the Nurses’ Health Study, involving nearly 240,000 female nurses followed over time in the United States. The nurses were asked to
report on general stress at home and at work, as well as recall physical and sexual abuse in childhood and as teenagers. The investigators, led by Trond Riise, Ph.D., with the University of Bergen in Norway, found that those who later developed MS did not respond significantly differently than those who did not develop MS in terms of their histories of general levels of stress or physical or sexual abuse. The study’s authors concluded that their results do not support a major role of stress in the development of MS, but that more research is needed to definitely exclude stress as a potential risk factor for developing MS. Research Shows Low Vitamin D Levels in African-Americans with MS According to a new study, AfricanAmericans with MS have significantly lower levels of vitamin D than AfricanAmericans who do not have MS, but these levels are not linked to disease severity. Researchers concluded that larger studies of diverse populations are necessary to fully understand the relationship of MS and vitamin D. The study was conducted by Jeffrey Gelfand, M.D., Ari Green, M.D., and colleagues at the University of California in San Francisco with funding provided by a National MS Society/American Academy of Neurologist Clinician Scientist Award to Dr. Green, as well as a research grant funding genetic studies in ethnically distinct populations to Jorge Oksenberg, Ph.D. African-Americans are at increased risk for having low vitamin D levels, possibly because melanin, which determines the level of pigment in the skin, acts as a filter of ultraviolet light, limiting the amount of vitamin D that can be produced by the body
in response to sunlight. This study team previously reported that African-Americans tended to have a more aggressive course of disease than Caucasian Americans, were at higher risk for developing mobility impairments, were more likely to develop MS later in life, and were at higher risk for having symptoms restricted to the optic nerve and spinal cord. Research is increasingly pointing to a reduced level of vitamin D in the blood as a risk factor for developing MS. The National MS Society is funding several projects in this area, including a new clinical trial getting underway to test whether vitamin D can reduce disease activity in people who have multiple sclerosis. Positive Results Announced from Phase 3 Study of Oral BG-12 Biogen Idec announced that the experimental oral therapy BG-12 significantly reduced the proportion of people with MS who experienced relapses in a twoyear study of more than 1,200 people with relapsing-remitting MS. Although its exact mode of action is not known, BG12 is thought to inhibit immune cells and molecules involved in MS attacks on the brain and spinal cord. The results were announced in April. Data analysis is ongoing and the company expects to provide a full report at an upcoming medical meeting. Another trial of BG-12 is currently underway. These and many other ongoing efforts by researchers around the world reflect the rapid pace of MS research. For more information on these and other research initiatives, visit the National MS Society online at www. nationalMSsociety.org. TOLL FREE NUMBER 1 800 344 4867
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HURRICANE SEASON PREPARATIONS
Disaster Preparedness For People With Disabilities Being prepared for emergencies can reduce the fear, panic, and inconvenience that surrounds a disaster. Check for hazards in the home. During and right after a disaster, ordinary items in the home can cause injury or damage. Anything that can move, fall, break or cause fire is a home hazard. Check for items such as bookcases, hanging pictures, or overhead lights that could fall in an earthquake or a flood and block an escape path. Be ready to evacuate. Have a plan for getting out of your home or building (ask your family or friends for assistance, if necessary). Also, plan two evacuation routes because some roads may be closed or blocked in a disaster. Have disaster supplies on hand. • Flashlight with extra batteries. • Portable, battery-operated radio and extra batteries. • First aid kit and manual. • Emergency food and water. • Non electric can opener. • Essential medicines • Cash and credit cards • Sturdy shoes. Maintain a list of the following important items and store it with the emergency supplies. Give a copy to another family member and a friend or neighbor. • Special equipment and supplies, e.g., hearing aid batteries 10 | JOIN THE MOVEMENT: nationalMSsociety.org
• Current prescriptions names and dosages • Names, addresses, and telephone numbers of doctors and pharmacist • Detailed information about the specifications of your medication regime Create a self-help network of relatives, friends or co-workers to assist in an emergency. If you think you may need assistance in a disaster, discuss your disability with relatives, friends, and co-workers and ask for their help. For example, if you need help moving or require special arrangements to receive emergency messages, make a plan with friends. Make sure they know where you keep emergency supplies. Give a key to a neighbor or friend who may be able to assist you in a disaster. Contact your local emergency information management office now. Many local emergency management offices maintain registers of people with disabilities so they can be located and assisted quickly in a disaster. Wearing medical alert tags or bracelets to identify your disability may help in case of an emergency. Know the location and availability of more than one facility if you are dependent on a dialysis machine or other life-sustaining equipment or treatment. If you have a severe speech, language, or hearing disability:
• When you dial 9-1-1, tap space bar to indicate TDD call. • Store a writing pad and pencils to communicate with others. • Keep a flashlight handy to signal whereabouts to other people and for illumination to aid in communication. • Remind friends that you cannot completely hear warnings or emergency instructions. Ask them to be your source of emergency information as it comes over their radio. • If you have a hearing ear dog, be aware that the dog may become confused or disoriented in an emergency. Store extra food, water and supplies for your dog. Planning for Evacuation People with disabilities have the same choices as other community residents about whether to evacuate their homes and where to go when an emergency threatens. Listen to the advice of local officials. Decide whether it is better to leave the area, stay with a friend or go to a public shelter. Each
of these decisions requires planning and preparation. If you need a wheelchair: Show friends how to operate your wheelchair so they can move you if necessary. Make sure your friends know the size of your wheelchair in case it has to be transported. For related information visit website at www.Louisiana.gov. Go to Governor’s office of Homeland Security & Emergency Preparedness. Click on Disaster Preparedness For People with Disabilities. For Related Information, visit website at http://gohsep.la.gov/ preparepeoplewithdisabilities.aspx FEMA Parish Emergency Preparedness Office Phone Numbers Disaster Supplies Kit Food & Water In A Disaster
LOG ON to Learn More!
www.Louisiana.gov
Multiple Sclerosis Study of Oral Medication The MS Clinic at LSUHSC-NO is conducting a study to test the safety and effectiveness of an investigational oral medication for MS. Participants must have a diagnosis of MS either of the relapsing remitting or secondary progressive form and be 18 to 60 years old and not have a relapse in the last 30 days. Patients taking Copaxone, Rebif, Betaseron, or Avonex for the last six months will be eligible for the study. If you would like more information please e-mail Dr. Jesus Lovera at jlover@lsuhsc.edu or research associate Alexander Ramos at aramos@lsuhsc.edu or call 504 903 9302. Study medication, tests and office visits as well as parking will be covered by the study. The study is sponsored by the National Institute for Complementary and Alternative Medicine and Dr. Lovera is the principal investigator. Participation will last one year. TOLL FREE NUMBER 1 800 344 4867
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MS BIKE
MS BIKE
Bike MS 2011… Join the Movement! 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 1-2 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. If you like to ride or even 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. As much as we do to get the word out about our Bike MS event 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 and just don’t know about us. If you are living with MS and would like to be a part of the event please join us on Sunday October 2 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 2011…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 1-800344-4867.
The Louisiana office of the National Multiple Sclerosis Society recommends the following training ride opportunities for cyclists preparing for the Bike MS 2011 scheduled for Saturday and Sunday, October 1 and 2. These rides are not sponsored by NMSS. Please refer to the safety rules listed after the ride schedule. TRAINING OPPORTUNITIES Sunday, July 10th: Levee (35 miles: Start/ Finish @ Audubon batture (The fly) with the help of Team WTF
Sunday, August 21st: Abita 50 (50 miles: Start/Finish @ the Caboose on Koop Dr) with the help of Team Crosby/NOLA
Sunday, July 17th: Levee (35 miles: Start/ Finish @ Audubon batture (The fly) with the help of Team Judy
Sunday, August 28th: Abita 50 (50 miles: Start/Finish @ the Caboose on Koop Dr) with the help of volunteers from American Gear Rum Runners
Sunday, July 24th: Baton Rouge (35 miles: Start/Finish @ Alligator Bayou) with the Sunday, September 11th: Abita 60 (60 help of Team IMTT miles: Start/Finish @ the Caboose on Koop Dr) with the help of Team Road Sharks Sunday, July 31st: Madisonville (40 miles: Start/Finish @ Trinity Marine) with the help of Saturday, September 17th: Tour de Team Entergy * NOTE – NEW START/FINISH Tangipohoa @ SLU $35 registration fee – Trinity Marine - 150 Hwy 21 Presented by Hammond Kiwanis Club begins at 7:30 and is SATURDAY Sunday, August 7th: Thibodaux (42 miles: Start/Finish @ Peltier Park) with Sunday, September 25th: CCC Century the help of Team Bayou Country Cyclists Ride @ Stewart’s Corner $35 registration fee Sunday, August 14th: Abita 45 (45 miles: Presented by Crescent City Cyclists begins at Start/Finish @ the Caboose on Koop Dr) 7:30 with the help of Team Crescent City Cyclists All training rides begin at 8:00am unless otherwise noted For more information: www.mslouisiana.org or 504-832-4013 #2 Info subject to change (Note: Abita Springs bridge on the trace is scheduled to be under construction during the summer – check periodically to see if the ride start is changed to the Hwy 190 start of the trace.) We will be using staggered starts so we can begin our rides with no more than 2 abreast. RIDE SINGLE FILE AT ALL TIMES!
Please note that the route may change due to construction on several of the rides. Please stay updated by visiting the Bike MS website often at www.bikemslouisiana.org. 12
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Louisiana Membership Children with MS
MS RESEARCH
M ultiple Sclerosis Observational Study The MS Clinic at LSU Health Sciences Center in New Orleans is participating in a study
for patients with Relapsing Remitting Multiple Sclerosis who are currently being treated with or considering treatment with Tysabri®. Study participants must be between 18 and 60 years of age. A blood sample will be collected from volunteers at the first visit and then once a year for two years for JC virus (JCV) antibody testing. JCV is linked to progressive multifocal leukoencephalopathy (PML) and taking Tysabri® is associated with an increased risk of getting PML. The purpose of this study is to collect blood samples from people with Multiple Sclerosis (MS) who are taking Tysabri® or may take it as a treatment for MS to see if previous exposure to JCV may predict whether a person is at risk for developing PML while taking Tysabri®. Antibodies are produced by the body’s immune system when it detects foreign substances so prior exposure to JCV will be identified by presence of the antibody in the blood. If you would like more information about this study, please e-mail Study Coordinator, Nicole Villemarette-Pittman at msclinic@lsuhsc.edu. Dr. Amy Gutierrez, Principal Investigator, and Dr. 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. The cost of the study laboratory test will be covered by the study sponsor, Biogen Idec. Participation involves 3 blood draws over 2 years and there is no compensation for volunteers.
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 nearly 28,000 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 one-year 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.
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National MS Society Louisiana, 4613 Fairfield St., Metairie, LA 70006 (504)832-4013, toll free (800) 344-4867.
TOLL FREE NUMBER 1 800 344 4867
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National MS Society
National Multiple Sclerosis Society - Louisiana 4613 Fairfield St. Metairie, LA 70006 FORWARDING SERVICE REQUESTED
Wellness Program Reminders! ALEXANDRIA – MS AQUATICS YMCA-Alexandria, 1831 Turner S. Call Emmy Partain, program coordinator, for details at 318-445-8261.
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.
BATON ROUGE – MS CHAIR AEROBICS Baton Rouge Self help Group Meetings on METAIRIE – MS AQUATICS occasions with Donna Hildebrandt. East Jefferson Wellness Center on Tuesdays and Thursdays, COVINGTON – MS YOGA 12:30 to 1:15 p.m. Star Fitness Center in Covington. MS Contact Amy Berthelot, program participants can participate without facilitator, for details at 504-849-6815. being members of center at a cost of $5 per class. SHREVEPORT MS AQUATICS/EXERCISE LAFAYETTE – MS CHAIR YOGA Willis-Knighton Wellness Center, Our Lady of Lourdes Fitness Center every Greenwood location. Classes meet Monday and Wednesday from 5:30 p.m. to Wednesdays 3:30 to 4:30 p.m. 6:15 p.m. $1 per class. $5.00 per class Call Holly Winterrowd at 318-212-4475 or email at hwinterrowd@wkhs.com