MOVING TOWARD A WORLD FREE OF MS | FALL • 2010
GATEWAY AREA CHAPTER
Moving Forward Advancing
Research
Research PAGE 4
ON THE COVER
This is certainly a fascinating time in MS research with so many potential treatments being investigated and close to coming to market. In this issue of the MS Connection you can find content on what it’s like for a person living with MS to watch the progress of MS research, Chapter research fellows at Washington University in St. Louis, what is going with research in progressive MS and more. You can also meet our new board members, our programs and services staff and our scholarship winners.
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Innovations in MS PAGE 7
Ask the Professional PAGE 10
E C N E R E F N O C E L E T A C O V D A
M K I S C D C S P U O R G S M K L A T R
K E N E W C O N N E C T I O N S F Q O E
E E O E B I N F E N I L A O R I M U V S
S P X H L A N I O R S I W U N P K A O E
D S M K L A W E G N E L L A H C A T L A
N M N E R R Y A L H E F N Y P S L I U R
E Y E X D A E O L D T C F G C E H C N C
I E T S O U A T G K I O C I N M T S T H
WORD SEARCH
R L A M I E C E P A M B F D D V N O E M
F I N A N C I A L A S S I S T A N C E S
MS Brain Games PAGE 13
E N O N T S R P T T H N S K T S E E R C
L F D I P A L E L E G C A E E A P K S H
INSIDE THIS ISSUE
Features LIVING WITH MS WITH AN EYE ON RESEARCH | 3 Development of therapies can be a roller coaster ride for people living with MS LOCAL CONTRIBUTIONS | 4-5 Chapter awards fellowships to Dr. Enrique Alvarez and Dr. Laura Piccio of Washington University in St. Louis
In Every Issue VOLUNTEER COLUMNS | 8-9 Speakers Bureau volunteer and Clinical Advisory Committee member discuss their involvement with the Chapter ASK THE PROFESSIONAL | 10 Dr. Patricia O’Looney addresses research for primary-progressive MS FROM THE BOARD | 11 Chapter welcomes new board members
WHAT CAME FIRST? | 6
GETTING TO KNOW US | 12
A look at Epstein-Barr virus and MS
Learn about what the Programs Department for the Chapter does
INNOVATIONS IN MS | 7
MS BRAIN GAMES | 13
Area person living with MS creates device for more accessibility
Exercise your mind with an MS word search based on research
ANNUAL AWARD NOMINATIONS | 15
Family Evening at Grant’s Farm, Columbia Office opening, UGLY Challenge, inaugural Mud Run highlight busy quarter for the Chapter
Nominate someone to be honored at annual Night of 1000 Stars FUNDING THE FUTURE | 16 The Chapter awards seven college scholarships
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CHAPTER NEWS BRIEFS | 14
FROM THE PRESIDENT | 18 A letter from Chapter President Phyllis Robsham
E M W O P A I K X L I R Y M N M R E A A
T N W R N T N C I E O N R A T L S S L M
I E I N P D I B H O A T S A W A L L A P
R E
N T E R S H
P S A P Y E E E E
LIVING WITH MS
LIVING WITH MS WITH AN EYE ON MEDICATIONS, THERAPIES Brian Phillips is a constant fixture at Challenge Walk MS. No matter how difficult it is and how much his MS may slow him down, when his legs may tell him ‘no,’ his mind says ‘yes’ and he journeys on to complete the 50-mile, 3-day walk. At the end of the second day of Challenge Walk MS during the Circle of Strength ceremony, when participants are invited to share their stories of how MS affects their life, Brian spoke about the progress that has been made. “I didn’t want to say something to offend somebody who is really struggling, but I also wanted to be positive,” Brian said. “It’s amazing to me that I’m better than I was last year and I’m going to be better next year.”
about two years.
While there has been progress, waiting for new treatments to be approved, weighing the risk and rewards of switching therapies and wondering if a medication is right for him can be grueling. “The unknown of the medicines is one of the most difficult things about living with MS,” Brian said. “You also wonder, from a business standpoint, that there are a lot of people trying to make money off this drug. That isn’t the most exciting thing to think about, but it’s a reality. There are a lot of factors when considering treatments. It’s definitely tough.”
Brian Phillips has been living with MS for 12 years and has kept a close eye on the progress of research in MS over the years.
got yanked, it was very difficult.” Brian is convinced that with all the research and advancements over the past 10 years, there will be a cure.
“Look at how far we’ve come with treatments and what’s happened in Brian remembers well the ups and my life from when I was diagnosed downs with Tysabri. Soon after Tysabri was released in November of to now,” Brian said. “I think there’s From Avonex and acupuncture to 2004, two MS clinical trial patients going to be a cure, in my lifetime. If not a cure, something pretty close plasma treatments and Tysabri, and one Crohn’s disease patient to it where if you do this, this and Brian, who is legally blind due to his contracted progressive multifocal this you’ll be able to live virtually MS, has learned quite a bit about leukoencephalopathy, or PML, a MS research and treatments while deadly neurological virus. One of the symptom free.” personally experiencing its progress, MS patients and the Crohn’s patient While the progress of MS research and sometimes regression, for more soon died. Tysabri was quickly is out of Brian’s control, one thing than a dozen years. pulled from the market in February he can control is his attitude and of 2005. Tysabri was reintroduced in approach towards living with MS. When Brian was diagnosed with MS July of 2006. after his sophomore year of college “I think your mind and your attitude in 1998, the ABC drugs (Avonex, “I was reading about Tysabri for so make a difference,” Brian said. Betaseron and Copaxone) were the long and it took so long for it to get “That’s why you have to fight. I’ve main therapies available for MS. on the market,” Brian remembers. “It always said I’m going to drive again. Brian started with Avonex, then got to the market and then the PML I know I’m going to. Now if that after a year switched to Betaseron. cases came out and it really broke CONTINUED ON PAGE 5 Now he has been on Tysabri for my heart. I was so excited. When it TOLL FREE NUMBER 1 800 344 4867
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RESEARCH
FELLOWSHIP RECIPIENT FULFILLS CHILDHOOD DREAM OF STUDYING THE NERVOUS SYSTEM While most youngsters dream of playing in the big leagues or being an astronaut, as a boy Enrique Alvarez was fascinated by the central nervous system. As a young man he pursued his childhood fascination by majoring in microbiology and immunology at North Dakota State University. Upon graduating with honors, he went on to study neuroscience. He completed his residency in adult neurology at Washington University. Throughout this experience he became more and more interested in MS. “During my clinical training, I have found that patients with MS can present a broad spectrum of symptoms making this a challenging yet fascinating career opportunity,” he said. “I remember as a medical student seeing three patients who had optic neuritis, spastic bladder, and right hemiplegia and wondering how the same disease could cause these varied symptoms. My neurology residency experience has reinforced my interest in treating people living with MS.” Dr. Alvarez is a recipient of the Sylvia Lawry Fellowship from the National Multiple Sclerosis Society. His fellowship began at the John L. Trotter MS Center at Washington University in St. Louis 4
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on July 1, 2010 and ends on June 30, 2013. The fellowship involves clinical training consisting of seeing new and follow-up patients referred for diagnostic and/or treatment consultation in both inpatient and outpatient settings. Dr. Alvarez will see patients two days per week in the clinic and will spend another half to one day per week seeing patients involved in eight MS clinical trials. “This field is in an exciting time with dramatic improvements in treatment options with many new medications in the pipeline,” he said. “The diagnosis of MS has been refined to allow earlier diagnosis and initiation of medications. This led to new concepts, such as the ‘clinically isolated syndrome’ and the ‘radiologically isolated syndrome.’ The future appears promising as therapeutics become more specific to MS and its subtypes.” “I believe my background has provided a good framework for my future career,” he said. “Most importantly, I will learn how to provide excellent care to patients with MS under the tutelage of Dr. Anne Cross and her colleagues at the John L. Trotter MS Center at Washington University in St. Louis.” After completion of his fellowship
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Dr. Enrique Alvarez Sylvia Lawry Fellowship Recipient training, Dr. Alvarez envisions himself working as a clinician in an academic neurology department seeing patients with MS, doing clinical trials and clinical research in MS, and teaching the next generation of students and residents about MS. “The field of MS research shows every sign of continuing to be an exciting field,” Dr. Alvarez said. “I want to devote my career to helping advance our understanding of MS and its treatment.”
RESEARCH
NEUROSCIENCE AWARD WINNER COMES 6,000 MILES TO HELP CREATE A WORLD FREE OF MS AT WASH. U. Dr. Laura Piccio has traveled more than 6,000 miles to help the National Multiple Sclerosis Society move toward a world free of MS. “My connection to the National MS Society is very strong and I am very grateful to this organization,” said Dr. Piccio. Dr. Piccio won the National MS Society’s Harry Weaver Neuroscience Award, a highly competitive fellowship designed to encourage young investigators to enter and pursue MS research. She began her fellowship at Washington University in St. Louis on July 1 and the Chapter has pledged to fund her research in the amount of $566,393 through June of 2015. Dr. Piccio, originally from Rome, Italy received her medical degree and completed her residency in neurology at the University of Milano. She then obtained her PhD in neurological sciences at the University of Milano. She moved to St. Louis in 2005 when she was awarded a three-year fellowship by the NMSS. At the conclusion of her
fellowship in 2008 she was offered a position as a research instructor at Washington University. In July 2010 she was promoted to a Research Assistant Professor, and began her research fellowship at Washington University. “I was really delighted to accept the position,” Dr. Piccio said. A typical day for the doctor is split between the laboratory at Washington University doing experiments and writing applications to obtain funding or papers to summarize the department’s work. Sometimes she also sees patients participating in one of the department studies. Dr. Piccio’s research focuses on studying the characteristics of the autoimmune response against myelin. One of the projects she is working on is related to the possible role of a molecule called TREM-2 which is expressed on some immune cells called macrophages. In addition, she is looking at the possible role of a diet in developing MS.
FROM PAGE 3
doesn’t happen, that’s fine. But to me it’s going to happen and I’m going to live my life knowing it’s going to happen. If it doesn’t happen that’s
not going to change anything. I’m here now. I love my life. I feel it’s so important to know you’re going to beat this disease.”
Dr. Laura Piccio Harry Weaver Neuroscience Award Winner
CALL TO ACTION Studies show that early and ongoing treatment with an FDAapproved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health-care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at www. nationalmssociety.org or 1-800344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
TOLL FREE NUMBER 1 800 344 4867
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RESEARCH
WHAT CAME FIRST – EPSTEIN-BARR OR MS? Virtually all people with MS are also infected with Epstein-Barr virus (EBV), but like the chicken and the egg, scientists do not know which came first. Two new studies are adding to an increasing body of evidence that shows a possible role for EBV, a herpes virus that can cause several disorders, in the development of MS. In the first study to look at whether EBV infection preceded the clinical onset of MS, Dr. Alberto Ascherio, of the Harvard School of Public Health, and colleagues showed that in a sample of 305 people with MS found in U.S. military databases, an EBV-positive blood test came before MS diagnosis. [Annals of Neurology, January 20, 2010] “The results strongly suggest that EBV infection increases MS risk,” said Dr. Ascherio. At the start of the study, only 5% of the participants, including the control group,tested negative for EBV. None of the people who tested negative for EBV during the follow up developed MS. In contrast, 10 people who initially tested negative for EBV, but who acquired the virus during the follow up, developed MS. Dr. Ascherio and colleagues concluded that MS risk increases significantly following EBV infection. “From a practical point of view, preventing EBV infection is difficult,” Dr. Ascherio said. “Most people are exposed to it in childhood. We do know that people who have a stronger immune response to EBV are more likely to get MS. There’s also pretty strong evidence that being infected with EBV in the teens or later is a risk factor for MS.” 6
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The Harvard results were supported by a study in Spain, where researchers at the Hospital Universitari Vall d’Hebron, Barcelona, reported that an immune response to a protein associated with EBV was increased in people with MS compared with siblings who did not have MS. [Multiple Sclerosis 2010: 16(3):355-358] The study found that siblings showed signs of having been infected with a number of viruses. The only marked difference was their immune response to EBNA1, a viral protein associated with EBV. These were significantly higher in people with MS compared to their unaffected siblings. More research is needed to find the mechanisms underlying the connection between EBV and MS, and a way to put the information to use.
LIVING WITH MS
INNOVATIONS IN ACCESSIBILITY – THE SHELF AT HAND When Harriet Felman fell down in her kitchen, she felt completely helpless. Three years later, with an invention that could help many people with disabilities maintain their independence, Harriet has overcome that feeling. Like many people with MS, Harriet experiences balance problems. As she reached for something from a low cabinet, she fell hard. While she recovered from the fall, Harriet resolved to find a way that other people could avoid the painful, frightening experience she had. From this need, the concept of accessible moveable shelving was born. With a long career in business, Harriet knew a device that allowed people to access items in their cabinets without bending down or reaching up would appeal to a broad market, including people with disabilities. She brought her longtime friend Mary Lou Barrow, an artist, and Mary’s son Todd Barrow, an inventor, into the business, and came up with the product name “Shelf at Hand.” The team enlisted the help of engineering students to perfect the product, which comes in both manual and motorized versions. The ingenious patent-pending design fits almost any size cabinet, and will do exactly what Harriet imagined – smoothly lift shelves out of the cabinet to the user’s hand. Right now, the team is working to sell or license their design to a manufacturer that will bring the product to market. While the pricing is not yet finalized, they estimate that the manual unit will sell for under $100, and the motorized unit will sell for under $200.
A fall in her kitchen led Harriet Felman (right) with Mary Lou and Todd Barrow to create the “Shelf At Hand.”
Harriet is glad her fall led to an innovation that could help other people with MS. She is now working on a new invention to help people address the challenges of living with MS – a cane that also serves as a pocketbook. As Harriet likes to say, “necessity is the mother of invention!” Harriet has also graciously helped the Chapter with its Golden Circle donor program. In February, she hosted an event at her home with nearly 50 people that featured guest speaker Dr. Tim Coetzee, Executive Director of Fast Forward, LLC, the National MS Society’s drug discovery and development affiliate. The Golden Circle program is the prestigious individual giving program recognizing the leadership and commitment of those giving annual gifts of $1,000 or more. TOLL FREE NUMBER 1 800 344 4867
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THROUGH THE EYES
VOLUNTEER
Fast forward 20 years and a couple dozen MS related rough patches, my doctor looked me square in the eye, and told me that I could no longer work. My life had taken a dramatic turn. “It” had finally caught up with me.
TIM ROCCIA
SPEAKERS BUREAU, DELIVER A SMILE AND SUMMER SWIZZLE VOLUNTEER If you ask anyone with MS, I’d bet they can tell you the exact date they heard the news. I was 26, and holding my two-week-old son when the doctor started to explain things in medical-type lingo. When it wasn’t soaking in, I asked him what it all meant. He calmly told me I’d never play baseball with my son. Talk about a wakeup call! Just to prove that I am every bit as smart as a first-year medical practitioner, I went on to coach t-ball, soccer and basketball. For me, it was mind over matter, and still is. I decided a long time ago that I am going to fight this in any way I can. For awhile, that meant years of not dealing with it, living life as I thought it was meant to be lived and missing out on very little. 8
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Now, at the age of 50, I am not ready to call it quits. It’s become my new mission to make a difference and do what I can to help create a world free of MS. If you ever get the chance to talk to Phyllis Robsham, the President of the Chapter, she’ll probably explain it to you, as she did to me, that “the fight is all about time, talent and treasure.” The funny thing is that it made sense. After moving back to St. Louis, I decided to take Phyllis at her word, and I’ve spent the last several months doing what I can. I actually “joined the movement”, and not just in words or thoughts, but I’ve rolled up my sleeves and jumped into the trenches with Chapter staff and volunteers. I re-established a relationship with the John L. Trotter MS Center at Washington University. When I went in to see Dr. Cross for my initial visit, one of the first things that they asked me was if I was interested in having a unit of my blood drawn that would help with the MS research. WOW, only a little pinch, and I was doing my part!
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Since then, I have done three studies at Washington University and St. Louis University. It took about 10 days out of my retired life, and there was always the chance that I could be a part of finding the silver bullet that I had only dreamed of for 20 years. I got involved with the Chapter, made a ton of friends, and made a difference there too. As a member of the Speakers Bureau, I have talked to hundreds of people about my MS experience, as well as spread the word about the great things being done in the area in regards to research, and all of the support available at the Chapter. Recently, I served as chairman of the 2010 St. Louis Summer Swizzle, that was held June 26 at the Kemp Auto Museum. The driving force behind the event was an inspiring gentleman, Bill Gillispie. He was diagnosed with MS 10 years ago, and thought if he had a million dollars, he could find a cure for MS. He spent the next decade raising money for research, utilizing about 400 volunteers in 12 states, with 20 different fundraising events. In May, he reached his self imposed goal of raising a million dollars. Now he has decided his new goal, fully supported by his “team”, is to raise another million dollars in five years. CONTINUED ON PAGE 9
OF VOLUNTEERS
VOLUNTEER DONOR
education course for physical and occupational therapists on MS and rehabilitation. I enjoyed learning and teaching others about MS and have stay involved ever since. In addition to educating other therapists on MS, I have worked with individuals with MS through educational programs such as March Education Day, ELISSA BRADFORD Fatigue: Take Control, Fitness PHYSICAL THERAPIST, MS and others. I have received WEST COUNTY MS the honor of taking part in the NMSS Clinical Advisory CENTER Committee since 2007 where CLINICAL ADVISORY physicians, nurses, therapists COMMITTEE MEMBER and NMSS staff work together I volunteer with the National to ensure quality programs are Multiple Sclerosis Society brought to the Gateway Area because it is an opportunity to Chapter. All have been great give. I volunteer because I can opportunities for me to meet and know within myself I should. and help others with MS and I volunteer because I want more. their families utilizing my skills More moments like the Circle of as a physical therapist that Strength candlelight ceremony specializes in neurology and MS. during Challenge Walk MS, where together we appreciate all Personally, my mentor and aunt, Lisa Marie, lives with MS. She that we have while at the same time we strive forward, one step was diagnosed 21 years ago at a time toward a world free of with relapsing-remitting MS and has not let it define who she MS. is. She is an amazing woman Dr. Barbara Green and Mary who has inspired me in so many Kay Fink, RN introduced me ways to challenge myself to to the NMSS and I am forever become the best person I can. grateful to them. My first Living with MS has challenged project with the Society was in her with periods of extreme 2004 with Suzanne Carron, the weakness, ongoing fatigue and Chapter’s Director of Programs. daily struggles as she raises her I worked with Suzanne on an daughter. She uses these hurdles
to make her stronger and more thankful for each day and each blessing. I have participated in Challenge Walk MS and I volunteer with the NMSS for her and the many others living with MS who inspire me each day. FROM PAGE 8
Recently, I’ve been helping grow the Chapter’s Deliver A Smile program. The program is designed to be another level of contact for those who are homebound due to the effects of MS. It is an extremely grass roots effort, where we provide another level of contact, deliver a small gift, and a smiling face to let them know that they are not alone or forgotten. As I have learned with dealing with MS, sometimes it’s the little things that make all of the difference. Like most things and programs within the Chapter office, funding is always an issue, and we are always looking for Phyllis’s elusive Time, Talent, and Treasures, so I guess that’s why I am involved, and taking the tasks very seriously. So I would simply ask that you continue to support your friends, family members, or co-workers that are dealing MS, and if you have one or more of the three “T’s”, your help is always welcome.
TOLL FREE NUMBER 1 800 344 4867
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MS CONNECTION
ASK THE PROFESSIONAL PATIENT QUESTION: There seem to be a lot of treatments and research to help relapsing-remitting MS, but what about primary-progressive MS? People who have primaryprogressive MS or secondaryprogressive MS are often frustrated by the small number of clinical trials in progressive forms of MS compared to the large number in relapsing-remitting MS. MS clinicians and researchers share this frustration and are actively looking for ways to increase the number of trials in progressive MS. Several obstacles have stood in the way.
In progressive MS, there is a lack of easily-identifiable outcomes to measure in clinical trials. Because people with primary-progressive MS, and many people with secondary-progressive MS, don’t experience relapses or the same kind of inflammation in the central nervous system, there are fewer events that can be counted. Disease progression can be quite slow, which means that a trial would have to last many years to determine if a treatment slowed or halted that progression. Researchers are working to identify alternative ways to measure the changes that occur in progressive MS so they can more easily and more quickly test potential treatments. The following trials are currently ongoing or getting started: • A study of the antioxidant idebenone is getting underway 10
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at the National Institutes of Health to see whether this therapy can block some of the processes that take place in the body to destroy cells, to protect the nervous system and slow or halt progression in people with primary-progressive MS.
• One therapy that has shown promise in people with relapsing forms of MS, an oral therapy called fingolimod, is now being tested in a large-scale trial in primary-progressive MS. • A phase 2 study of natalizumab (currently approved for relapsing MS) is getting underway in Denmark, testing this infusion therapy in both primaryprogressive and secondaryprogressive MS. • In addition, a small-scale safety study of adult stem cell therapy in people with progressive forms of MS was just completed in England, with no serious safety issues identified.
Dr. Patricia A. O’Looney Vice President of Biomedical Research National MS Society • Another new study in Kansas City will investigate levels of a brain chemical in people with progressive MS and also relapsing MS to understand the role of oxidative stress in disease severity and its potential as a therapeutic target. • Many projects are focusing on repairing MS tissue damage, including the Society’s Nervous System Repair and Protection Initiative, in which four international teams have been collaborating to lay the groundwork for clinical trials of therapeutic strategies for repair and protection in MS.
• In collaboration with the MS Society of Canada, the Society has just launched seven research projects focusing on whether The National MS Society is funding CCSVI (vein blockages) plays a research to better understand factors role in the MS disease process. that drive progression including: There are clearly unmet needs • A study in Boston aims at for treating progressive forms of identifying risk factors that the disease. Understanding MS influence whether MS symptoms progression and finding ways to progress, including factors that reverse it are priorities for the are potentially modifiable such as National MS Society’s research hormones and vitamin D levels. programs.
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FISCAL YEAR 2010 BOARD OF TRUSTEES
Chapter Welcomes New Board Members RODNEY CRIM EXECUTIVE DIRECTOR ST. LOUIS DEVELOPMENT CORPORATION
What drew you to the Chapter? Bike MS drew me to the Chapter. I have now participated in the event three times and am looking forward to my fourth. Through this process, I have become more aware of the purpose behind the event. What is your connection to MS? The desire to help others. What do you hope to bring to the Chapter? My skills, abilities and relationships.
PATRICK DEAN
PRESIDENT DEAN TEAM AUTOMOTIVE GROUP
What drew you to the Chapter? My sister Mary Dean Jinkerson has MS and the fact that there is a Chapter office in St. Louis allows me to generate funds that will stay in the area. Why did you want to join the board? Having a sibling who lives with MS was a great motivator and knowing that I could promote the need to find a cure for MS, not just for my sister, but for anyone who has MS and lives in the area. What do you hope to bring to the Chapter? I hope to bring in a more “personal”
understanding to the way that MS has affected our family and share those experiences with other individuals in the area who have a family member who has MS.
MIKE PHILLIPS RETIRED MARITZ
What drew you to the Chapter? MARK Gratitude for the help the Chapter has provided my son. GELLMAN What do you hope to bring to OWNER THE GELLMAN the Chapter? TEAM AT Energy, enthusiasm and effort to COLDWELL BANKER increase funding for research and PREMIER care for those who have MS. What do you hope to Why did you want to join the accomplish while on the board? board? Get five companies in the Gateway After being recruited and meeting Area Chapter area to become more with (Chapter President) Phyllis (Robsham) and (Chair of the Board of involved with the Chapter and contribute substantially. Trustees) Lynda (Baris) – how could I say no? I’m excited to be part of a SHEELAH dynamic organization that is making YAWITZ positive change and ensures that FOUNDER board members are engaged. MISSOURI What is your connection to MS? MERCHANTS AND Prior to riding in Bike MS, I did not MANUFACTURERS have a true connection. Now that I ASSOCIATION ride and my awareness has increased, What drew you to the Chapter? I have friends and family who are Our son was diagnosed with MS affected by MS. in 2005 and our son-in-law was What do you hope to bring to diagnosed in 2009. the Chapter? Why did you want to join the Enthusiasm, fundraising dollars, Board? new ideas and passion to make a With our family connection I wanted difference. to see if I could do more to help the Chapter. What do you hope to accomplish while on the board? I hope to help raise awareness of MS and money for our Chapter. It’s almost like - what comes first the money or the awareness? We need both. TOLL FREE NUMBER 1 800 344 4867
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GETTING TO KNOW US
BEHIND THE SCENES OF THE PROGRAMS DEPARTMENT Do you ever wonder how Chapter programs are developed and implemented? Throughout the year, the Programs staff, along with a network of volunteers, develops and implements programs that support people with MS, their friends and family. Based on requests from people living with MS, the Programs Department creates and coordinates education programs on research, symptom management and wellness. Through evaluations, conversations at programs, and feedback from the programs and evaluation committee, the Chapter tries to continually improve its program and service offerings. The Programs Department supports the volunteers who implement the Talk MS peer support program through trainings, logistical support, and materials for meetings. The Talk MS group leaders coordinate speakers, program location, and marketing of their groups throughout the Gateway Area Chapter’s 90 counties in Missouri and Illinois. The Programs Department also coordinates and supports the TeleFriend program, in which peer volunteers make monthly calls to people with MS, as well as the Beginning Conversations program. In Beginning Conversations, volunteers meet with individuals newly diagnosed with MS or who are new to the area. The Chapter has expanded its wellness programs to include the Wellness Network and in-home exercise evaluations for those who want to exercise at home. The Programs Staff processes scholarships for transportation and negotiates fees for participants to 12
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The Chapter’s Programs Department includes (from left) Hazel Mays, Kimberly Wilcox, Allison Harper, Suzanne Carron and Diana Post. attend aquatics or yoga, to have gym memberships, and more (see pages 28-29 or go to www. gatewaymssociety.org to learn more). In order to ensure that fitness professionals understand the needs of those living with MS, Programs staff and volunteers visit community sites and provide individual and group training. The Programs Department also develops family and adult events, like Family Evening at Grant’s Farm, and always strives to make events both fun and educational. Chapter staff members collaborate with a coordinator at each event to plan the activities for the day and weekend events – including coordinating interactive groups for family and friends who care for someone with MS. One of the many important details that the Programs staff members always handle when scheduling venues for programs is evaluating program sites to make sure they are fully accessible so participants will not encounter any barriers to enjoying the activities. In 2011, the department hopes to reach even more people affected by MS via “live stream” so participants can watch the program “live” on their home computers.
MS WORD SEARCH PUZZLE
MS BRAIN GAMES
These words and meaning can be found at www.nationalmssociety.org/chapters/MOS/index.aspx T C N O Z I R O H E H T N O A E G S D M L P
R S E I T I L I B I S S O P L T N A T E I C
R E S E A R C H N E W S I A R F I C L E M I
N R S L I I R B A S Y T T E E W K L D W I A
W A B E T I O U L D L Y A R O S A I L T N R
I C R A A O L C F N I K R E N H M N S H E I
• AMPYRA • BOTOX • CCSVI • CLINICAL TRIALS • COLLABORATION • FAST FORWARD • FDA • MS CLINICAL CARE • MS SOCIETY • MS TREND REPORT ANSWER KEY ON PAGE 17
L L E I R R R R S U C E O N K O S I B S T P
D A X H G A C U S F W S B N N N S C E O M S
H C Y O E W R H L E A O A U E R E A A R S X
A I I T T V C I P W U N L M E O R L E A T D
C N S A E O S C E H M F L A P C G T E L R T
B I E Y D I B B P C I E O R H Y O R G F E R
A L I S R C C I O R A L C L A D R I B I N E
E C I I E A E O E A W L O R G C P A S N D L
A S D T S C Y T S E S O T S P N C L I G R A
A M O T E T L L N S U W I R O V L S L O E L
• MS TRIAL ALERT • ON THE HORIZON • ORAL CLADRIBINE • ORAL FINGOLIMOD • ORAL GELENIA • ORAL TERIFLUNOMIDE • POSSIBILITIES • PROGRESS MAKING • RESEARCH • RESEARCH NEWS
R F U H A A R S E E M S F I E P L O V L P A
A D O S R D T R L R L C S I A L H L E I O I
Y W R O C A F A S T F O R W A R D Y O M R R
H T I Y H L S E S A I N E L E G L A R O T T
S H I W C N T E R O R F O E E O M T F D F S
E H N C R E S E A R C H N O W D R C Y H I M
NOTE: WORDS WITH SPACES SPACES NOT USED ON WORD GRID. SOME WORDS OVERLAP.
• RESEARCH NOW • RESEARCH PHILOSOPHY • RESEARCH WE FUND • STUDY • SURVEY • TARGETED RESEARCH • TYKESON FELLOWS CONF • TYSABRI • WEBCAST • WHATS NEW
TOLL FREE NUMBER 1 800 344 4867
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NEWS BRIEFS
FAMILY EVENING AT GRANT’S FARM
MORE THAN 500 GET DIRTY FOR MS
Nearly 650 people enjoyed one of the Chapter’s most popular social programs on May 15 at Grant’s Farm. The evening included face painting, an accessible tram tour of Deer Park, arts and crafts and live music.
The Chapter held its inaugural Mud Run on June 26 at Harrah’s St. Louis. More than 500 people ran over, through, under and around some 20 military-style obstacles that were surrounded by mud. The event is forecasted to raise $110,000. Plans are already being made for next year’s event in May of 2011. Go to mudrunstl. com for more information.
The face painting stations were popular stops for children at Grant’s Farm
The Chapter opened its newest office Columbia with several days of celebration in mid-July. Grand Opening activities included a special reception for healthcare professionals on July 14, a ribbon-cutting ceremony on July 15 to introduce the local business community to the Chapter, and a public celebration on July 17 that featured a Bike MS training ride, music, food, and games.
UGLY MAKEOVER
Nearly 650 people enjoyed all Grant’s Farm had to offer at Family Evening on May 15
CHAPTER OPENS OFFICE IN COLUMBIA In July, the Chapter celebrated the grand opening of its new office in Columbia, MO. The office, located at 4816 Santana Circle in Columbia, will assist close to 1,000 people living with MS and their families in central Missouri. 14
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JOIN THE MOVEMENT
The Chapter’s UGLY Bar Challenge contest had a makeover this year that grew from less than 10 bars and restaurants in 2009 to nearly 30 participating over the weekend of July 16-17. Thanks to all our participants!
Three Monkeys in South St. Louis was one of the many bars and restaurants that participated in the UGLY Bar Challenge.
More than 500 people got dirty for MS at the inaugural Mud Run on June 26 at Harrah’s St. Louis in Maryland Heights, MO.
RESEARCH ANNUAL AWARDS NOMINATIONS
2010 ACHIEVEMENT AWARDS NOMINATIONS Does someone living with MS inspire you? Do you know someone who goes above and beyond to help someone with MS? The Chapter would like you to think about those people in your life who have made a difference and nominate them for the 2010 Annual Achievement Awards. Nominations must be received by Friday, Oct. 15, 2010. Winners will be notified in November and honored at the Gateway Area Chapter’s Annual Dinner in January 2011. Achievement Awards fall into the following five categories:
— Why does your mother or father deserve this award? — What do you and your mother or father do when you spend time together?
CAREGIVER OF THE YEAR:
This award recognizes a friend, family member, significant other or neighbor who goes above and beyond to care for someone with MS. The caregiver goes out of his or her way to help, and puts the needs of others above their own. Consider the questions below when writing your nomination:
nities for those with MS. Consider the questions below when writing your nomination: — How has the employer shown compassion toward those with MS? What are some examples? — What can other companies learn from the nominee about accommodating people with MS? — Give a testimonial from an employee. — How have the company’s efforts improved the employee’s performance?
THE UNSUNG HERO AWARD:
— How long has the nominee provided care This award recognizes a Chapter volunteer who is dependable, inspiring and efficient. for someone with MS? INDIVIDUAL OF THE YEAR This Unsung Hero goes above and beyond This award recognizes what people with MS — In what ways does the nominee go above the call of duty to assist the Chapter in can accomplish in their personal and profesand beyond to care for those with MS? their mission: to create a world free of MS. sional lives. Consider the following when Think about the following questions when — Why does the nominee deserve this writing your nominations: writing your nomination: award? — What kind of obstacles has the nominee faced because of MS and how do they overcome them?
Give a testimonial from the caregiver’s charge about the extraordinary care he/she receives from the nominee.
— How does the nominee inspire you?
EMPLOYER OF THE YEAR:
— Describe the accomplishments of the nominee, both personally and professionally.
MOTHER OF THE YEAR AND FATHER OF THE YEAR:
These awards recognize a mother and a father with MS who handle the daily challenges of parenthood with dignity, grace, strength, compassion and creativity. Think about the following questions when writing your nomination: — How long has your mother or father lived with MS? — What challenges has your mother or father faced in her/his battle? — How has MS impacted your relationship with your mother or father?
This award recognizes companies that are compassionate and understanding of those with MS. Nominees must meet the following criteria: has an employee with MS, supports and complies with the Americans and Disabilities Act, and has taken action to increase or enhance employment opportu-
— How do you define an unsung hero? —How does the nominee fit that definition? — How has this person gone above and beyond for those with MS? — Why does the nominee volunteer at the MS Society? — How long has the nominee been a volunteer?
2010 Achievement Awards Nomination Form:
Please detach and return this form with your nomination by Oct. 15, 2010 to National MS Society 1867 Lackland Hill Parkway, St. Louis, MO 63146 or fax to (314) 781-1440.
You may also visit our website at www.gatewaymssociety.org.
Category: _______________________________________________________ Name of Nominee or Company:_ ____________________________________ Nominee’s Address:_ ______________________________________________ Nominee’s Phone:_________________________________________________ Nominee’s Email:_ ________________________________________________ Name of Nominator:______________________________Phone:_____________ Signature:_______________________________________ Date:_____________ TOLL FREE NUMBER 1 800 344 4867
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PROGRAMS
FUNDING THE FUTURE CHAPTER AWARDS ANNUAL SCHOLARSHIPS Many families struggle to cope with the financial impact of MS. To assist people affected by MS and their children who are pursuing a post-secondary education, the National MS Society provides scholarships to accredited educational programs. Awards are based on financial need, academic record and a personal essay. We believe strongly that MS should not stand in the way of an education. To be eligible, high school graduates must be attending an accredited post-secondary school for the first time (first semester). The Gateway Area Chapter is pleased to have seven scholarship recipients in our 90-county service area.
HANNAH BERG ST. LOUIS, MO Hannah’s mother lives with MS. Living with MS in the family taught Hannah that every family is different, some experience more hardships than others and families need to appreciate what they have because you never know what you have until it is gone. Hannah attended Incarnate Word Academy and was a member of the school’s prolife club. She plans to attend the University of Missouri in the fall in hopes of obtaining a degree in psychology.
JOE BUCHHEIT COLUMBIA, MO Joe’s mother has had MS for most of his life. Although Joe may not have understood MS initially, he has now grown to understand the challenges MS can present to a household. Joe has learned to value the time he spends with his mother. “I don’t know how much longer she 16
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JOIN THE MOVEMENT: nationalMSsociety.org
will be on this earth because of the disease and I just value the time we have now,” he said. He graduated from Columbia Rock Bridge High School and was an active member of the school band. He plans to attend the University of Central Missouri and major in criminal justice.
DEVON LEE ST. LOUIS, MO Devon’s mother has had MS all of Devon’s life. He lends support for his mother by helping her in and out of bed, up and down stairs, writing bills and doing many other household duties. “My mother’s MS has impacted my life, but I truly believe that impact has definitely been positive,” Devon said. Devon graduated from Maplewood Richmond Heights High School and was a member of the basketball program. Devon plans on attending the University of Southern Illinois Carbondale majoring in cinema and photography.
KELSEY LYNN JACKSON, MO Kelsey’s mother has MS and has had her struggles finding employment, but Kelsey has been there for her mother every step of the way. “Mom may slur her words, have bad handwriting or might even fall down a lot, but she is my mom,” Kelsey said. Kelsey graduated from Saxony Lutheran High School and is attending Concordia University.
MARY ROSE ALHAMBRA, IL Mary’s mother has MS and is referred to as “Supermom” because of her ability to deal with it. “MS has helped me grow up faster than my mother had intended,” Mary said. She is a
PROGRAMS
MEGAN WEST
graduate of Highland High School and plans to attend Southern Illinois University Edwardsville and major in electrical engineering
OWENSVILLE, MO Megan is a very accomplished young woman who has lived with MS since 2003. Megan is a graduate of Owensville High School where she was ranked the top student in her class of 155, was a member of the math and science club, student council, and the National Honor Society. She will continue her studies at Missouri State University majoring in history. “I know more than anyone that life can change in an instant, and it is how you handle that change that makes you, you,” Megan said.
KLANCEY VANDELOECHT FULTON, MO Klancey’s mother has had to live with some severe symptoms of MS. Klancey described her mother as a very strong individual able to deal with the effects of MS – even with being paralyzed on her entire left side. “She’s been a great impact on my life through her determination and strength,” Klancey said. Klancey is a graduate of Fulton High School with plans on attending Lincoln University and majoring in animal science.
MS CROSS WORD SEARCH ANSWER KEY T C N O Z I R O H E H T N O A E G S D M L P
R S E I T I L I B I S S O P L T N A T E I C
R E S E A R C H N E W S I A R F I C L E M I
N R S L I I R B A S Y T T E E W K L D W I A
W A B E T I O U L D L Y A R O S A I L T N R
I C R A A O L C F N I K R E N H M N S H E I
L L E I R R R R S U C E O N K O S I B S T P
D A X H G A C U S F W S B N N N S C E O M S
H C Y O E W R H L E A O A U E R E A A R S X
A I I T T V C I P W U N L M E O R L E A T D
C N S A E O S C E H M F L A P C G T E L R T
B I E Y D I B B P C I E O R H Y O R G F E R
A L I S R C C I O R A L C L A D R I B I N E
E C I I E A E O E A W L O R G C P A S N D L
A S D T S C Y T S E S O T S P N C L I G R A
A M O T E T L L N S U W I R O V L S L O E L
R F U H A A R S E E M S F I E P L O V L P A
A D O S R D T R L R L C S I A L H L E I O I
Y W R O C A F A S T F O R W A R D Y O M R R
H T I Y H L S E S A I N E L E G L A R O T T
S H I W C N T E R O R F O E E O M T F D F S
E H N C R E S E A R C H N O W D R C Y H I M
FACEBOOK.COM/GATEWAYMSSOCIETY MYSPACE.COM/NATIONALMSSOCIETYGATEWAY TWITTER.COM/GATEWAYMS YOUTUBE.COM/GATEWAYMSSOCIETY
TOLL FREE NUMBER 1 800 344 4867
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(800) 344-4867
PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Contact Us at National MS Society Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 314-781-9020 or 1-800-344-4867 www.gatewaymssociety.org MS Connection © 2010 A quarterly newsletter published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Newsletter Editor • Joe Cavato Writers Elissa Bradford Kim Calder Suzanne Carron Joe Cavato Yolanda Fisher Dan Friedman Patricia O’Looney Tim Roccia NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned. Proud member of
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FROM THE PRESIDENT
A LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM
This is an exciting time in MS research. Since I joined the National MS Society, 17 years ago, treatment options have increased dramatically, and we are on the brink of another major breakthrough. At the time of press, an FDA-approved oral treatment for MS is imminent – an option that has the potential to improve the quality of life for so many people using injectable medications or infusions today. Yet, as far as we have come in research in the past two decades, we still have so far to go. The cause of MS is still unknown; diagnosis can be very difficult; treatments are effective for some, and not for others; and we do not yet have a cure. As you’ve see from the stories in this issue of the MS Connection, cutting-edge research continues to be at the core of the National MS Society’s mission. In 2009, the Society invested over 36 million dollars in research to stop disease activity, repair the nervous system, and prevent MS. More than 375 projects are currently funded in genetics, nerve repair, tissue damage, immunology, pediatric MS, gender differences in MS, and more. The Society is currently funding four clinical trials in the Gateway area, totaling 1.3 million dollars. In these pages, you’ve heard from clients who have benefited from advances in research, professionals working in the field, and innovators working to improve the lives of people with disabilities everywhere. To stay informed about advances in research, I would like to invite you to join us at the John L. Trotter Research Program September 23, 2010, when Dr. Mark Freedman will join us from Ottawa to discuss the promise of bone marrow transplants (see page 21). Also please be sure to sign up for our email research updates at gatewaymssociety.org (look under Programs and Services g Learn about MS g Research). And, while research is critical to the Society, we are also always focused on helping address the challenges of living with MS today. The second half of this magazine details programs the Chapter will be providing in coming months. For more information about services the Chapter provides in your area, please visit gatewaymssociety.org or call 800-344-4867.
JOIN THE MOVEMENT: nationalMSsociety.org
happenings John L. Trotter Research Program Are Bone Marrow Transplants the Answer?
Sheraton Westport Hotel – Lakeside Chalet 191 Westport Plaza St. Louis, MO 63146
KEYNOTE SPEAKER:
Dr. Mark Freedman Director – Multiple Sclerosis Research Clinic The Ottawa Hospital, Division of Neurology Ottawa Ontario
ABOUT THE SPEAKER:
Dr. Freedman is professor of medicine in the field of neurology at the University of Ottawa, Canada, and director of the Multiple Sclerosis Research Unit at the Ottawa Hospital. His research includes molecular neurochemistry, cellular immunology, and clinical studies in MS. He currently holds peer-reviewed and industry-related funding for translational research investigating immune mechanisms of damage in multiple sclerosis, with particular interest in the role of gamma-delta T-cells. He is also the lead investigator in the Canadian Bone Marrow Transplant Study in MS.
HAPPENINGS
Thursday, September 23, 2010 7-9 p.m.
Dr. Mark Freedman will be the keynote speaker at the annual John L. Trotter Research Program on September 23.
A graduate of the University of Toronto, Dr. Freedman holds a Masters Degree in molecular neurochemistry and did postgraduate work specializing in neurology and neuroimmunology after medical school. He is a fellow of the American Academy of Neurology. Cost: $15 (fee waivers are available) Early Registration Discount: $12.50 (Register by August 27, 2010) Registration Deadline: September 17, 2010 You can also join via teleconference! Call-in number will be provided when you register. There is no fee for the teleconference.
www.gatewaymssociety.org
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Gateway Area Chapter
Dial. Listen. Learn.
Wellness Network
HAPPENINGS
The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These are similar to the Chapter “Talk MS” groups but each call will focus on a different topic relating to wellness. Upcoming topics include: • Sept. 30, How to Stay Active in the Heat • Oct.28, Wellness Objectives and Resources • Nov. 18, At-Home Exercise • Dec. 30, Staying Active in Bad Weather Participating in monthly calls is an opportunity to share ideas and provide encouragement and support to each other on challenges and successes one experiences while seeking and actively participating in exercise programs. The teleconferences are facilitated by Toni Kodner, a volunteer with extensive knowledge of MS and wellness and are from 7-8 p.m. Each month a guest speaker will also share expertise on a specific topic. The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. It is also helpful to those who are new to seeking out wellness opportunities and need some guidance and direction.
Midwest Teleconference Series Mark your calendars for every second Monday of the month for the Midwest Teleconference Series. Each free, hour-long Midwest session is led by an expert inTeleconference their particular field. Upcoming topics include: Series · Vitamins & Supplements · Clinical Trials and Research on the Horizon · Pregnancy & MS · Symptom Management Midwest Teleconference · Wellness Series · Vision · Depression - MS & Your Emotions · Pain & MS · Sleep & MS Midwest · Finding Emotional Support Teleconference Go to www.gatewaymssociety.org g Series Programs & Services g Calendar to register and for more information on individual teleconferences. Beverly, diagnosed in 2001
If you are interested in becoming a member of the Wellness Network, please call 1-800-344-4867 or visit our website to register for the monthly calls. Getting to know the facilitator, Toni Kodner: Toni Kodner has been living with MS for over 20 years. She is very physically active and currently takes yoga classes two days per week and is dedicated to her own home exercise program. She volunteers weekly at the Chapter as a therapeutic exercise volunteer. 20
1.800.344.4867
happenings Therapeutic Horsemanship
The interaction serves as therapy for the mind and spirit. The rider is given a sense of independence and achievement with the experience of therapeutic horsemanship. Therapeutic horseback riding is a great way to improve your balance, posture, mobility and function. This is a chance for people of all abilities to have fun horseback riding and gain a new sense of achievement. The Gateway Area Chapter would like to introduce you to therapeutic horsemanship. In the month of October, we will be offering thereapeutic horsemanship classes throughout Missouri. There is room for 10-12 individuals at each site and there is no cost. The program will include: • An overview of therapeutic horsemanship and its benefits • What programs and services the site has to offer • Demonstrations • Time for questions and answers **Transportation assistance is available by request If you attend this program and learn that it could benefit you, scholarships will be available to help with the cost of classes.
Therapeutic Horsemanship Dates and Locations OCTOBER 2, 10 A.M.
Equine- Assisted Therapy Longview Farm Park 13525 Clayton Rd Town & Country MO 63141 Exceptional Equestrians 785 Yellow Finch Ln. Washington, MO 63090
OCTOBER 9, 10 A.M.
Mississippi Valley Therapeutic Horsemanship 192 Hope Hill Rd Oak Ridge, MO 63769-5421 Therapeutic Horsemanship 332 Stable Lane Wentzville, MO 63385 Cedar Creek Therapeutic Riding Center 4895 E Highway 163 Columbia, MO 65201-9284
www.gatewaymssociety.org
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HAPPENINGS
Did you know a horse’s gait is similar to that of a human? For this reason, the natural motion involved in riding a horse helps to strengthen and support the spine and pelvis. The repetitive movement mobilizes the joints and muscles, and improves balance and coordination, making therapeutic horseback riding a full body workout.
HAPPENINGS
Gateway Area Chapter
Gateway to Wellness Cape Girardeau
MS Exercise Class Cape Girardeau
Thursdays, October 7 - November 11 5:30-7:30 p.m.
Southeast Missouri Hospital HealthPoint Fitness Rehab 2126 Cape Girardeau, MO 63703
St. Francis Health & Wellness Center Cape Girardeau, MO Gateway to Wellness is an interactive, six-week, health and wellness program designed to encourage dialogue between individuals with MS, their guests, and professionals. Participants learn ways to enhance their quality of life through practicing new coping techniques and wellness strategies. DISCUSSION TOPICS INCLUDE: g Coping with fatigue
Donna Miller, physical therapist, with HealthPoint Rehab has 12 years of experience working with both adult and pediatric clients specializing in neurologic diagnoses. While working in the St Louis area, Donna developed and instructed the MS Exercise class for people with multiple sclerosis and will be teaching this class. Class size is limited to six participants in order to ensure individualized attention. This class consists of: g General education in appropriate forms of exercise g Strengthening and flexibility exercises g Balance and endurance training
g ADA and your rights g Setting meaningful goals g Exercising at home g Nutrition and eating well g Managing cognitive changes g Locating community resources
If you are interested in participating in this class, please call Donna Miller at 573-9864411.
Facilitator: Steve Logel, physical therapist with St. Francis Medical Center Cost: $10 per person/ $15 with guest A limited number of fee waivers are available for this program and for transportation to the program. Please fill out the registration form to request a waiver. 22
1.800.344.4867
happenings Family Weekend Touch of Nature October 15-17, Makanda, IL HAPPENINGS
The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis in Makanda, just outside of Carbondale, Ill., Touch of Nature offers a secluded and accessible retreat. WEEKEND ACTIVITIES INCLUDE: g Accessible pontoon boat rides g Accessible hayrides g Arts & Crafts for all ages g Campfire and s’mores g Accessible horseback and pony rides g Owl prowling and catch and release fishing g ‘Kid’s Only’ adventure activities and Halloween fun g CarePartner social programs g ‘How to Stay Active’ class for people with MS Early registration (before Oct.4) $70/per person Regular registration (after Oct. 4) $85/per person Live in the area? Come join us for the day! Day only option: $25 per person (available for Saturday or Sunday) A limited number of fee waivers are available for this program and/or transportation. Please fill out the registration form to request a waiver. Kids 3 and younger are free. Registration includes meals, activities and lodging. Registration Deadline: October 11
www.gatewaymssociety.org
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Gateway Area Chapter
Jumpstart Your Relationship: Reclaim Your Well-Being HAPPENINGS
October 23-24 The Resort of Port Arrowhead 3080 Bagnell Dam Blvd. Lake of the Ozarks, MO 65049 The National MS Society and Can Do Multiple Sclerosis invite you and your spouse/partner to a workshop for couples living with the challenges of MS. This dynamic program will help you learn to: g Break patterns that prevent effective communication g Apply successful problem-solving techniques g Work as a team to manage MS and your relationship All lodging, meals and workshop activities are part of the registration fee. Limited fee waivers and/or transportation are available. Please contact 1-800-344-4867 to request an application. Cost: $50 per couple Registration Deadline: October 8
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Michael, diagnosed in 2004
DELIVER A SMILE Twice a year, Chapter staff and volunteers make visits to individuals living with MS and deliver small personalized items that have been specifically requested by the individuals. About 100 were delivered in December and we will deliver another 100 this July. If you know someone with MS who is homebound or living in a long-term care facility or would like to donate please contact Diana Post at the Chapter at diana.post@gatewaymssociety.org or 1-800-344-4867.
1.800.344.4867
happenings MS Wellness Fair Saturday, October 30, 2010 9 a.m. to Noon
HAPPENINGS
Southeast Missouri Hospital HealthPoint Fitness Rehab 2126 Independence Cape Girardeau, MO 63703 PROGRAM INCLUDES: g Individual screening appointments with a physical and occupational therapist g Strength assessment g Balance assessment g Activity assessment g Mobility device assessment g Range of motion tests g Various health screenings g Opportunity to meet with a variety of healthcare disciplines g Opportunity to ask specific health and wellness questions g A continental breakfast g Chances to learn about more of the Chapter’s wellness programs and community wellness resources Cost: $10 Please contact Kimberly at 314-446-4166 or kimberly.wilcox@gatewaymssociety.org for assistance with program fee and transportation to the program.
www.gatewaymssociety.org
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Gateway Area Chapter
TALK MS GROUPS
HAPPENINGS
MISSOURI Cape Girardeau
3rd Saturday 10 a.m.
Columbia
Call for Dates
Crystal City/Festus Fulton
1st Monday 6 p.m.
Jefferson City New London Bootheel Area
NEW
LOCATION!
St. Charles Washington
2nd Tuesday 1 p.m. 1st Wedneday 3 p.m.
NEW
LOCATION!
West Plains
2nd Monday 7 p.m. 2nd Sunday 2 p.m. 3rd Sunday 3p.m. 3rd Monday 6 p.m. 3rd Wednesday 5 p.m.
St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 University of Missouri-Columbia Quarterdeck Bldg., Rm. 118 2401 Lemone Ind. Dr., Columbia, MO 65201 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 At Home Real Estate 2606 North Blutt, Fulton, MO 65251 St. Mary’s Health Center, Assembly Hall St. Mary’s Medical Plaza, off of West Dunklin, Jefferson City, MO 65101 Call for Location Keller Public Library, 402 W. Grant St. Dexter, MO 63841 Hardees Restaurant at Mid Rivers Mall Dr. and Mexico Rd. St. Peter’s United Church of Christ, 20 East 5th St., Washington, MO 63090 Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. 909 Kentucky St., West Plains, MO 65775
Sharon (573) 332-8148 Deanna (573) 882-6767 Marlene (636) 464-2533 Sharon webradleys@yahoo.com Cindy (573) 220-0177 Chris (573) 645-0130 clepper@mobankers.com Debby (573) 267-3365 mlrdsr@rallstech.com Tamra (573) 624-0130 cawalker@sbcglobal.net Jim (636) 940-1521 Ann (636) 354-6037 Charline (417) 469-1068 Sally (417) 469-4842
ST. LOUIS METRO
West County
1st Thursday 7 p.m. 2nd Saturday 1:30 p.m. 2nd Tuesday 7 p.m.
Perspectives on MS Networking Group (20’s, 30’s and 40’s)
1st Saturday 10 a.m.
Affton Mid-St. Louis County
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Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 St. John Rehab Hospital, 14561 North Kevin (314) 841-3755 Outer Hwy 40, St. Louis, MO 63017 Living Word United Methodist Church 17315 Manchester Rd., Wildwood, MO 63038 Walt (636) 256-9171 Mary (314) 542-9303 NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Kidsho4@swbell.net Michelle (636) 447-5407
1.800.344.4867
happenings TALK MS GROUPS ILLINOIS
Mt. Vernon
Call for Dates
Southern Illinois
2nd Tuesday 5 p.m.
The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. 120 East A Street, Belleville, IL 62220 Faith Lutheran Church 1104 N. 42nd St. Mt. Vernon, IL 62864 Heartland Regional-Medical Center Classroom #2 3333 West DeYoung, Marion, IL 62959
Men’s Chat
Last Tuesday 7 p.m.
Telephone group
MS Fun, Friends & Food
November 2 6 p.m.
Belleville/ O’Fallon Litchfield
Lisa (618) (618)258-0615 258-0615 Amy (618) 235-4226 Meredith (217) 556-4418
HAPPENINGS
Metro East
3rd Tuesday 7-9 p.m. 2nd Sunday 2:30 p.m. 4th Tuesday 6:30 p.m. October 27 7 p.m.
Alton/Wood River
Diane (618) 235-8823 Earhart500@aol.com Terri (618) 242-8448 Robert (618) 983-0321
SPECIALIZED GROUPS
Veterans with MS CarePartner and Family Group
Joe S. jsalacki@sbcglobal.net
David C. Pratt Cancer Center St. John’s Mercy Medical Center 607 S. New Ballas Rd., St. Louis, MO 63147 2nd Wednesday Veterans Admin. Medical Center 1 10 a.m. Jefferson Barracks Dr., St. Louis, MO 63125 Office Gateway Area Chapter 3rd Wednesday NMSS 1867 Lackland Hill Parkway, St. Louis, MO 63146 7 p.m. Change from 7pm to 6:30pm
Meet & Greet
Your local Talk MS group is hosting a Meet & Greet program and you are invited! These programs take place outside of the usual meeting locations for Talk MS groups. Chapter staff will be attending to let you know about National MS Society programs, services and events available to you. This is also a great way to meet other people living with MS and to learn about local Talk MS groups in your area. There is no fee to attend but you must register, so RSVP today at 1-800-344-4867. Feel free to tell a friend or bring a guest.
Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com Penny or Patti (314) 652-4100 ext. 4523 patricia.noonan2@med.va.gov Allison (800) 344-4867 allison.harper@gatewaymssociety.org
Upcoming Meet & Greet Programs: Perspective on MS for people Living in their 20’s, 30’s, and 40’s Friday, October 1, 6 pm Spazio’s 12031 Lackland Hill Rd. St. Louis, MO 63146 Crystal City/Festus Talk MS Group Saturday, November 6, 6 pm Tanglefoot Resturant 1198 W Gannon Drive Festus, MO 63028 27
Gateway Area Chapter
HAPPENINGS
MS Aquatics
DIVE IN!
Everyone can participate in an aquatics class. You don’t need to know how to swim – you just need the desire to improve yourself, have fun, and make friends.
Why aquatics?
g The buoyancy of the water reduces your body weight, meaning less stress on joints! g Better cardiovascular fitness is gained using the resistance of the water! g Water keeps you cool and guards against fatigue, so you can exercise longer! The Chapter offers scholarships for attendance and transportation to therapeutic recreation programs.
ST. LOUIS METRO AREA
Wellbridge Athletic Club –( Clayton) Contact: Trudy C. (314) 746-1500 x1551
Carondelet Park Rec Plex Contact: Shannon (314) 768-9622
Wellbridge Athletic Club – (Town & Country) Contact: Abby (636) 207-3000
Center of Clayton Contact: Diane (314) 353-4960
MID MISSOURI
Bridgeton Community Center Contact: Cole (314) 739-5599
Chesterfield JCC Contact: Sheena Koster (314) 442-3495
Columbia Activity & Recreation Center Contact: Janel (573) 874-7460 x7700
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822
Jefferson City YMCA Contact: Erica Hart (573) 761-9021
Hazelwood Community Center Contact: Jill A. (314) 731-0980 Jefferson College (Hillsboro) Contact Christina C.: (636) 942-3000 x382 Mid-County YMCA (Brentwood) Contact: Sandi (314) 962-9450 Show Me Aquatics Contact: Carolyn (636) 896-0999 South City Family YMCA Contact: Rich (314) 644-3100 St. Charles County YMCA Contact: Joyce (636) 928-1928 x250 The Pointe at Ballwin Commons Contact: Leslie or Adam (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704
28
Mexico Family YMCA Contact: Consuelo (573) 581-1540
SOUTHERN AND METRO ILLINOIS
John A. Logan College Contact: Chris G. (618) 985-2828 x8504 Jerseyville Wellness Center Contact: Jennifer R. (618) 498-3500 O’Fallon Community YMCA Contact: (618) 628-7701
SOUTHEAST MISSOURI
Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040
To register for one of the above classes, please call the number listed. You do not register directly through the Chapter.
happenings
Yoga Sites MID MISSOURI
SOUTHEAST MISSOURI
Olivette Community Center 9723 Grandview Drive St. Louis, MO 63132 Cost: $10/ class Call: 314-781-9020 or 1-800-344-4867 Wednesdays 10 - 11:30 a.m. (Iyengar Yoga Class) Instructor: Kathy Simon
Elm Street Yoga 904 Elm St. Suite 210, Columbia, MO 65201 www.elmstreetyoga.com Tuesdays, 1:15-2:15 p.m. Thursdays, 4:30-5:30 p.m. Instructor: Linda Lutz Cost: $35 for 5 classes Class size limited to six people Contact: Linda (573) 441-8566 or lindalutz@mac.com
PARC Fitness Center 2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: 573-686-5985 Mondays, 7 - 7:45 p.m. Wednesdays, 6 - 7:30 p.m. (slower paced class) Walk-ins welcome! Instructor: Mindy Matthews
Yoga St. Louis Iyengar Yoga Class 3305 Jamieson Ave. St. Louis, MO 63139 Call: 314-645-9785 www.iyengaryogastlouis.com St. John’s Mercy Medical Building 12348 Old Tesson Rd. , St. Louis MO Instructor: Linda Whitney Call: 314-729-0181 Tuesdays October 19 - December 17 December 14 - February 8 5:30-6:30 p.m. (Beginner) 7-8 p.m. (Gentle) Thursdays October 21 - December 9 December 16 – Feb. 10 9:30-10:30 a.m. (Beginner) Saturdays October 23 – December 11 December 18 – February 12 9-10 a.m. (Beginner)** Cost: $54 for 6 weeks and $72 for 8 weeks.
NMSS Office NEW 4816 Santana Circle CLASS! Columbia, MO 65203 Fridays, 11:45 a.m. - 12:45 p.m. Instructor: Linda Lutz Cost: $35 for 5 classes or $10 per class Call: Kimberly at 1-800-344-4867 or kimberly.wilcox@gatewaymssociety.org
METRO & SOUTHERN ILLINOIS Sukha Yoga Center 18 South High St., Belleville, IL Instructor: Sarah Fraser Cost: call for class times/fees Contact: Sarah (618) 236-9642 Web site: www.sukhayogacenter.com One-O-One Yoga 101 South Graham Carbondale, IL Contact: Sarah Miller, 618-457-8186 Cost: Call for class times/fees Web site: www.center101yoga.com
To register for one of the above classes, please call the number listed. You do not register directly through the Chapter. www.gatewaymssociety.org
HAPPENINGS
ST. LOUIS:
Yoga at the Firm 1610 Freedom Dr. West Plains, MO 65775 Instructor: Vicki Hogan Contact: Vicki (417) 293-1184 or the Firm at (417) 257-7800 Cost: $40 for an 8-week session
Tai Chi New Class in Columbia, MO
NMSS Office 4816 Santana Circle Columbia, MO 65203 Mondays 10-10:45 a.m. Instructor: Mary Cruise Cost: $35 for 5 classes or $10 per class Contact: Kimberly at 1-800-344-4867 or kimberly.wilcox@gatewaymssociety.org
NEW CLASS! 29
HAPPENINGS
Gateway Area Chapter
New Connections West County, MO
When the Diagnosis Is Primary Progressive
Thursday, December 2 6-7 p.m.
Call 1-800-344-4867 for your free copy of Primary Progressive Multiple Sclerosis: What You Need to Know.
Kaldi’s Coffeehouse Chesterfield Commons Village 17211 Chesterfield Airport Road Chesterfield, MO 63005 Come meet with other people who have been newly diagnosed with MS in the past five years or who have recently moved to the area. Staff members from the Chapter will be attending to let you know what we do and how we can help. Have a cup on us! The Chapter will provide the first round of drinks and delicious treats for everyone. Feel free to bring a guest or tell a friend! Registration Deadline: November 29
Registration
In this 156-page-book, experts Dr. Jack G. Burks, Dr. Nancy J. Holland and Dr. Diana M. Schneider address symptom management, treatment options, rehabilitation, technology and adaptations, quality-of-life issues, carepartner resources and much more. The book, jointly sponsored by the Society and the Multiple Sclerosis Association of America, comes with a companion DVD, featuring five people who are living with primary-progressive MS. Their comments also appear throughout the book, grounding the advice in real-life situations. The book and DVD were developed following recommendations from a Society task force on the needs of people affected by this type of MS. Publication and free copies to people with primary-progressive MS have been made possible by a generous educational grant from Genentech. For more facts and strategies, visit our online webcast series at nationalMSsociety.org/ ppmsweb.
See page 35. 30
1.800.344.4867
happenings CONSIDERING LIFE INSURANCE? A BROKER CAN HELP BY KIM CALDER
sales agents, or “captive” brokers, negotiating, or “brokering,” sales for that company alone. Others develop expertise in specific types of policies, or “niche markets,” for certain types of clients, such as retirees, newlyweds or even people with chronic diseases. An “impaired risk” broker?
If you choose to work with a broker, select one with whom you feel comfortable and prepare to be very candid about your disease and circumstances. A good broker can help you determine if your expectations are realistic, your goals are clear and your timing is right. It’s nearly impossible to qualify for disability or long-term care insurance after being diagnosed with MS. But life insurance is another matter. Comparison shopping is a must The premium for a person with MS will be higher, but the policies are out there. Shopping for the best, most affordable policy can be a time-consuming and complex challenge. A good insurance broker will not only do the research and educate a buyer about appropriate products, but will help with the application process and negotiations. Licensed independent insurance brokers are professional advisors with expertise in the insurance marketplace. Some focus exclusively on one insurance company’s products and act as
Never hesitate to ask a broker for professional references, and check them out. If someone refers you to one broker in particular, ask why. What did your referral source like about how this broker worked? The bottom line It is ultimately your responsibility to understand the terms of your insurance policy, and to make best use of it. Take advantage of the time when your broker is gathering your information and exploring your options to ask lots of questions. It is not always possible to know what your final rate will be until you apply, but you do have the choice whether or not to accept or keep a life insurance policy during the “free look” period after it is issued.
Kim Calder is director of Insurance Initiatives for the Society.
www.gatewaymssociety.org
31
HAPPENINGS
An impaired risk specialist is particularly knowledgeable about what is available for people with health conditions or other risk factors. Some impaired risk brokers are even considered super-specialists, as they specialize in a few specific impairments, such as MS.
Gateway Area Chapter
HAPPENINGS
Have a Question?
— the co-pay on a wheelchair or ways to fund home modifications. You might need someone to talk to about the changes MS is making in your family life or you might need a referral to an MSsavvy health-care professional.
Answers when you need them. Dial 1-800-344-4867. Some 200,000 callers a year dial this number. Regardless of why they call, they tap into a network linking them to the chapter of the National MS Society that is nearest to them (the phone company cleverly does this) and to a vast database of resources managed by our Information Resource Center, or the IRC, in Denver, Colo. One phone number works for the entire country. If you should call after hours, you’ll be asked to leave a message. But if you have an emergency, don’t wait. Call 911 right away — and plan to get in touch with us as soon as the immediate problem has been resolved. No hablan Inglés? Choose Spanish — or other languages as needed. Vamos a encontrar a alguien que le ayude. What happens when you dial 1-800-3444867? You might be calling to find out about one of our educational programs, a trip or an outing, or our Bike MS and Walk MS events. You might want to volunteer. Or you might be calling for assistance 32
You’ll get help from an MS Navigator™ — a trained human service professional, whether your call is answered here or at the national center. MS Navigators undergo comprehensive training to answer questions on just about anything you might need to know about living with MS. The central database has links to national, state and local resources, which cuts down on paper chases and endless phone calls. More than just the facts “The system is here to help people navigate the challenging waters of MS so they get what they need, when they need it,” said Nancy Law, the Society’s executive vice president of Programs and Services. “Our mission includes emotional support,” added Lisa Custy, MSCIR, associate vice president of the IRC. “We don’t give information in a vacuum.” Information is a two-way street, Custy added. Chapter staff regularly update local and area resources. If you’ve discovered a resource that would be helpful to other people with MS, call us about it. Sooner is usually better “The sooner people call us when there’s a problem, the more likely that it can be resolved,” Law added. “Waiting until things are dire — until an eviction notice is on the door — may make it harder. But whenever you call, please know the Society is here for you.”
1.800.344.4867
happenings Need help paying for MS drugs?
Patience may be needed to get benefits, however. You can get support and information from the Society too. Visit nationalMSsociety.org/underinsured or call us at 1-800-344-4867. RESOURCE CENTERS — These centers can help with information, applications and exploring your options. Name NeedyMeds Partnership for Prescription Assistance RxAssist
Website NeedyMeds.org pparx.org
Phone Number (online service only) 888-477-2669
RxAssist.org
401-729-3284
For help in purchasing disease-modifying drugs Drug Name Avonex Betaseron Copaxone Extavia Novantrone Rebif Tysabri
Resource MS Active Source BETA PLUS Patient Support Program Shared Solutions Extavia Patient Support Program Novantrone Patient Assistance Program MS Lifelines Access Made Simple MS Active Source
Website msactivesource.com betaseron.com sharedsolutions.com No Web site No Web site mslifelines.com msactivesource.com
Phone 800-456-2255 800-788-1467I 800-887-8100 866-925-2333 877-447-3243 877-447-3243 800-456-2255
For help in purchasing drugs that address MS symptoms Drug Ampyra (fampridine-SR) Baclofen (intrathecal only) Cymbalta (duloxetine HCI) Ditropan XL (oxybutynin chloride) Neurontin (gabapentin)
Website No Web site at press time rarediseases.org/programs/medication lillycares.com jjpaf.org pfizerhelpfulanswers.com
Phone Number 888-881-1918 800-999-6673 800-545-6962 800-652-6227 866-706-2400
Call an MS Navigator™ at 1-800-344-4867 about other drugs or state-supported patient assistance programs. The information here is not guaranteed to be up to date as programs may change, but we hope this helps you get started. www.gatewaymssociety.org
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HAPPENINGS
Managing the costs of MS meds is a huge challenge, especially for people with no insurance or who are underinsured. But some help is available. Each disease-modifying drug manufacturer and many makers of medications that treat MS symptoms have Patient Assistance Programs (PAPs), which offer free or low-cost medications to those who qualify. Prescription drug discount programs can help as well. Ask your doctor if there is a generic version available for any prescription.
Gateway Area Chapter
HAPPENINGS
Chapter Calendar SEPTEMBER
NOVEMBER
1
MS Dinner Group, Robust, Webster Groves, MO
6
Meet and Greet, Crystal City
11
Walk MS, Union County, IL
8
Midwest Teleconference Series
11-12 Bike MS, Columbia, MO
11
Gateway to Wellness Program Ends, Cape Girardeau
13
Navigating the SSDI Process Teleconference
13-14 Peer Support Volunteer Leadership Training, St. Louis, MO
15
Carepartner & Family Group Meeting, St. Louis, MO
17
Carepartner Appreciation Dinner
18
Walk MS, Washington, MO
18
Wellness Network Teleconference
21
Talk MS Open House, Alton/Wood River, IL
DECEMBER
21
Pediatric MS Professional Dinner Program, St. Louis, MO
2
23
John L. Trotter, Research Program, St. Louis, MO
New Connection Social Gathering Chesterfield, MO
25
Walk MS, Mt. Vernon, IL
13
Midwest Teleconference Series
25
Walk MS, Bootheel Area, MO
16
Wellness Network Teleconference
26
Walk MS, Ste. Genevieve, MO
25-26 Rehabilitation in MS: Strategies for OTs and PTs, O’Fallon, IL
MARKETPLACE
30
1999 Honda Odyssey Van with unoccupied lift for sale. Excellent condition. Lift is a Pride Silverstar Backpacker Plus with battery. Van has 86,000 miles on it. New transmission put in van by Honda at 70,000 miles. Only one owner. No accidents. Located in Ballwin, MO area. Please call Charlene at (636) 391-6078.
Wellness Network Teleconference - Weight Management
OCTOBER 1
Meet and Greet, St. Louis, MO
2
Therapeutic Horsemanship, Town & Country, MO and Washington, MO
7
Gateway to Wellness Program Begins, Cape Girardeau
9
Therapeutic Horsemanship, Oak Ridge, MO, Wentzville, MO and Columbia, MO
11
Midwest Teleconference Series
15-17 Family Weekend at Touch of Nature, Carbondale, IL 23-24 Jumpstart Your Relationship Program, Lake of the Ozarks, MO 28
Wellness Network Teleconference
30
MS Wellness Fair, Cape Girardeau, MO
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VEHICLES
SCOOTERS & WHEELCHAIRS
Electric wheelchair, purple includes and charger. In good condition. 4 to 5 years old. $500 - OBO. Please call Etta in Paris, MO, at (660) 327-1078. 2005 Rascal Scooter, Auto GO 550. Hardly used. Ultra light vehicle with truck lift. Asking $2000 or best offer. Contact Maureen in Town & Country, MO, at (314) 317-9701.
1.800.344.4867
happenings Program Registration [ ] John L. Trotter Research Program
Thursday, September 23, 2010
Registration Deadline: September 17, 2010 COST: $12.50/person before Aug. 27, $15 after Aug. 27
[ ] Therapeutic Horsemanship
October 2, Town & Country, MO COST: FREE PROGRAM Therapeutic Horsemanship October 2, Washington, MO COST: FREE PROGRAM Gateway to Wellness October 7 - November 11, Cape Girardeau, MO COST: $10 per person/$15 with a guest Therapeutic Horsemanship October 9, Oak Ridge, MO COST: FREE PROGRAM Therapeutic Horsemanship October 9, Wentzville, MO COST: FREE PROGRAM Therapeutic Horsemanship October 9, Columbia, MO COST: FREE PROGRAM Family Weekend at Touch of Nature October 15-17, Carbondale, IL
Registration Deadline: October 11 COST: $70/person before Oct. 4, $85/person after Oct. 4
[ ]
[ ]
[ ]
[ ]
[ ]
[ ]
[ ] Jumpstart Your Relationship
October 23-24, Lake of the Ozarks, MO COST: $50 per couple by October 8 [ ] Wellness Fair October 30, Cape Girardeau, MO COST: $10 [ ] New Connections December 2, Chesterfield, MO COST: FREE PROGRAM
Name________________________________ Address_______________________________ ___________________________________ City/State/Zip_ __________________________ Home phone____________________________ Work phone_ ___________________________ E-mail_ ______________________________ Guest Names and Ages______________________ ___________________________________ Does anyone in your party use a mobility device?_______ Would you like to request a fee waiver?_ ___________ Do you prefer a vegetarian meal?________________ Date of Diagnosis_ ________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover ( ) Am. Express Card # _ ___________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
www.gatewaymssociety.org
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HAPPENINGS
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 RETURN SERVICE REQUESTED
Gateway Area Chapter Gateway Area Chapter 1867 Lackland Hill Parkway
happenings St. Louis, MO 63146
making the most
of life and the least of MS
In this issue John L. Trotter Research Program. . . . 19 Wellness Network. . . . . . . . . . . . . . . . 20 Midwest Teleconference Series . . . . . 20 Therapeutic Horsemanship . . . . . . . . 21 Gateway to Wellness. . . . . . . . . . . . . . 22 MS Exercise Classs. . . . . . . . . . . . . . . . 22 Family Weekend at Touch of Nature. . 23 Jumpstart Your Relationship . . . . . . . 24 MS Wellness Fair. . . . . . . . . . . . . . . . . 25 Talk MS Group Listings. . . . . . . . . 26-27 Therapeutic Recreation. . . . . . . . . 28-29 New Connections . . . . . . . . . . . . . . . . 30 Primary Progressive MS . . . . . . . . . . . 30 Resource Center. . . . . . . . . . . . . . . 31-33 Chapter Calendar. . . . . . . . . . . . . . . . . 34 Registration. . . . . . . . . . . . . . . . . . . . . 35
As cooler weather arrives with the fall, there are several programs where you can get more active. Check out the Chapter’s newest program “A Day At the Barn – Therapeutic Horsemanship” (page 19). Other fitness and wellness programs available in the coming months are: “Fitness MS” (page 22) and “Gateway to Wellness” in Cape Girardeau, Therapeutic Recreation (pages 28-29), the Wellness Network (page 30). Autumn can also be a great time to get away and you can
National Multiple Sclerosis Society
do just that at Family Weekend at Touch of Nature (page 20). If you can’t make it to any of our programs, you can join us via teleconference at the John L. Trotter Research Program (page 21), the Wellness Network (page 30) or the Midwest Teleconference Series (page 31). For other resources, read about the Society’s Information and Resource Center (page 32) and help available to pay for MS treatments (page 33).
Your Source for Knowledge, Wellness, and Support
Fall 2010