MOVING TOWARD A WORLD FREE OF MS | SPRING • 2012
GATEWAY AREA CHAPTER GATEWAY AREA CHAPTER
MOVING TOWARD A WORLD FREE OF MS | VOLUME 6 • EDITION 1
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Learn how we are making CONNECTIONS. CONTINUED ON PAGE 2
Chapter connects resources to THIS INSIDE make an impact.
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Fundraiser connects with community to raise thousands. Personal trainer Article 1 Title connection Page # changes life.
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Volunteer connects Chapter with people in long-term care community. Walker connects online to boost fundraising.
Researchers need Pg. 8 to connect to Article 3 Title people living Article 4 Title with Page # Page # MS for study.
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Connecting for the Cause Taking Charge of MS Pages 4-5 Page 8
INSIDE THIS ISSUE Making an Impact ........................... 3 Connecting for the Cause .............. 4-5 Do It Yourself Events........................ 5 MS Licence Plate Approval................ 6 Women on the Move........................ 7 Taking Charge................................. 8 MuckRuckus MS.............................. 9 Volunteer Columns......................10-11 Walk MS..................................12-13 Research MS............................ 14-15 From The Board............................. 16 MS Brain Games............................ 17 MSconnection.org......................... 18 Challenge Walk MS........................ 19 Ask The Professional......................... 20 Bike MS.......................................... 21 Happenings................................22-36 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 © 2012 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Editor • Joe Cavato Writers • Kerri Bowes• Chet Bunnell • Joe Cavato • Arthur Fagas • Daniel Friedman • Lisa Hollins • Dr. Robert Naismith • Joe Pollack
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.
On the Hunt at Walk MS Page 12
Research MS Pages 14-15
A LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM This year, MS Awareness Week, March 11-17, is all about “Connection”. It is a time for people affected by MS to connect with others, share knowledge and take action to increase awareness about the disease. Our voices and the connections we create will make the movement even more powerful. This year’s campaign will bring to life the power of our connections with one another and ask people everywhere to share what they know. In this issue of the MS Connection magazine, we highlight connections in the MS movement. Connections between the Society and people living with MS through our programs and services; connections between event participants and the donors who support them; connections between researchers and the patients who help move research forward. We are excited to announce the launch of the new MSconnection.org website on March 12 (see page 18). MSconnection.org is an online community that will provide an opportunity to connect people involved in the MS movement with one another, with valuable web content, and with resources such as peer support volunteers, MS Navigators and MS experts as well as information and resources from the larger MS community. You’ll find information about the topics that are most important to you, share your experiences, connect with people you want to connect with, and have expert MS information and opinions right at your fingertips. As you read this issue, please think about the ways that you can personally connect to the MS movement, and the people in your life that you would like to connect to the movement with you. Together, our connections will create a world free of MS!
P.S. You can show your connection to MS by signing up for your Missouri MS license plate. See page 6 to learn how. 2
1.800.344.4867
‘Village’ comes together to make impact together. A small, Coloradobased philanthropic group got involved with a contribution, Katie talked to contractors and coordinated bids, and the Griffith family used part of an insurance settlement from damage caused by the Good Friday tornado that hit part of St. Louis last spring. The Chapter helped put it all in a neat package, with small contributions being “It made me free put together to again,” make an impact on Felicia’s life.
Felicia, diagnosed with the disease more than 20 years ago, uses a power - Felicia Griffith chair. Her mother “It was as if all the had been helping her maneuver up and down the stars were in alignment,” said Katie, as the project came gravel driveway to their home. But Mom’s strength waned and together and a new driveway, at a cost of about $5,000, was built she became unable to help, in at a slope that made it easy for effect trapping Felicia in the house. Her parish nurse, Debbie Felicia to handle. “It’s the sort of thing we at the MS Society Slaughter, put together a video can do, working with people clip showing the problem, and alerted Katie MacLean, services and various other organizations to make people living with MS manager at the Gateway Area more self-sufficient.” Chapter of the National MS Society. “It made me free again,” Felicia said. Then the village began to come
LIVING WITH MS
It supposedly takes a village to raise a child; it also takes a village to provide mobility and freedom for someone struggling with MS. Several St. Louisbased, out-of-town individuals and organizations got together recently to help Felicia Griffith become sufficiently mobile to once again move in and out of her house by herself.
Felicia Griffith, who has lived with MS for more than 20 years, struggled to get out of her house before several resources connected to pave her gravel driveway.
Chapter helps pool together resources including family contributions .
Felicia has trouble getting out of home due to gravel driveway. Parish nurse sends video showing the problem to Chapter social worker.
www.gatewaymssociety.org
Felicia regains her freedom.
Driveway is paved and re-graded. 3
Fundraising extravaganza connects community When Tony Adams was diagnosed with MS in 2003 he didn’t want to talk to the social worker who called him asking him if he needed anything.
FUNDRAISING
“I thought I didn’t need to talk to anybody like that,” Tony said. “I did everything on my own. I researched on the internet and used information from drug companies.” But then one Christmas he got a special gift from his daughter, Krista. “I wrote him a letter saying how he’s always given up everything for me growing up and now it’s time for me to give back to him,” Krista said. “ I thought what could I do to give back and help my family because he’s always helped me.” Krista’s idea to do a fundraiser inspired Tony. “That finally pushed me to get involved,” Tony said. “I just started scratching out ideas of things we could do.” For the last two years, Tony has been the center and driving force of a $20,000 fundraising day that he calls “Join The Movement Events.” The events connect with the community of Olney, IL and truly has something for everyone — walks, runs, bike rides, motorcycle rides, off-road vehicle mud bogs, a dinner and an auction. You name it, and Tony has something for you on July 28 in Olney, Il. They even have t-shirts, do-rags, can koozies and water bottles for the event. “We try to have an event for everybody,” Tony said. Through Tony’s connections, a committee of
Above: Tony Adams and his dedicated committee have literally written the book on Do It Yourself Fundraising in Olney, IL. Below: Tony accepts his Mission Possible award from Dr. Barry Singer at the Chapter’s Annual Meeting. about six or seven dedicated volunteers has grown with more than 30 sponsors. You could say Tony has written the book on Do-It-Yourself fundraising – literally. “We’ve got a book now with job duties, what the job entails, what worked last year, what didn’t work,” Tony said. “It’s kind of our meeting roster and it includes timelines of when to send out sponsor letters and when to send out registration forms. It’s getting easier each year.” By asking old friends he went to school with or people in his church or anyone else, Tony has built a network of people who are not only dedicated, but know what they’re doing. Someone on his committee owns a sign company and helps with signage, another is an avid bike rider and STORY CONTINUES ON NEXT PAGE
Tony, inspired by daughter, starts own fundraiser in Olney.
Krista starts dodgeball fundraiser for her dad Tony. 4
Fundraiser connects with the community.
Tony’s friends form committee to develop multi-event fundraising day. 800.344.4867
Annual event raises $20,000.
Do It Yourself Fundraising gets a boost
Resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know.
and how to create a committee. The toolkit also includes flyers, badges and email signature images to download. “The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something NOW.”
People can find out what lessons others have learned STORY continued from previous PAGE organizes the bike routes, another is the high school cross country coach and knows how to put on a race. They’ll do just about anything from an in-kind donation from their company to hauling 20,000 gallons of water for the mud bog. “My parents grew up in surrounding areas and they have really good connections and great friends,” Krista said. “That committee my dad works with just goes above and beyond. My parents go above and beyond the call of duty for everything. It’s crazy that we can do so much in one day. More and more we’re getting in the community and surrounding communities. It’s an awesome day. They work all year long.”
local diy events Run4MS Saturday, April 7, 7:30 a.m. Kirkwood Community Center MS 10K Presented by Missouri Running Company Saturday, June 30th, at 7am St. Louis Community College-Meramec Schnucks ‘eScrip’ card Sign up for a Schnucks “eScrip” card and 3% of your purchase will go to the Chapter. Contact Amanda at 314.781.9020, opt 2 to get your card and a grocery bag! Already have an eScrip card? Sign into your account at eScrip.com and add National MS Society as your organization of choice!
Be sure to check out all of the Do It Yourself Chapter fundraising at gatewaymssociety.org g Fundraising Events g Do It Yourself Fundraising.
Just about anything can be a fundraiser. Tony Adams has several Do It Yourself fundraisers in one day including a mud bog, motorcycle ride and a run. the town and surrounding communities come out to support her dad and people living with MS makes for quite a day for Krista.
“I’m lucky to have individuals who I’m really good friends with who are really good people,” Tony said. “It’s amazing how much work people put in. We’re spread out but we’re very close and a tight- “All day we’re all amped up knit group. I’m just a jack of all trades but a master and having a great time,” Krista said. “It’s exciting and of none.” emotional. It’s astounding, that’s for sure.” Seeing everything come together and much of www.gatewaymssociety.org
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FUNDRAISING
Do It Yourself (DIY) fundraising has been going on a long time, but what’s new is an online tool at www. doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk MS participants,” according to Rachael Nuwash, DIY project manager for the Society.
the state just put you in the driver’s seat
ADVOCACY
The Missouri General Assembly just approved the MS Awareness speciality license plate!
What this means for the 6,800 people living with MS in our area
• Every plate purchased = $25 directly to the NMSS. • Increased awareness about MS.
Help spread MS awareness and What You Can Do show others that you support • We need 200 applicants to start production so apply for your the National MS Society by license plate today! purchasing an MS Missouri license • Tell your friends and family members plate! Apply for your license plates • Go to gatewaymssociety.org g Advocate g MO License Plate now to help us reach our goal. and fill out the application. We’ve included some ideas for personalized specialty plates which cost more than the $40 for MS specialty plates.
On line 45 of Missouri 1040 taxpayers can donate up to $200 of their refund by inserting the “Addl Trust fund code” of 10 with the donation amount inserted directly below the code.
mov4ms
vlnter
svmyln
rid4ms
lv 2 wlk
mkruks
Plates approved by Missouri General Assembly.
Society advocates appeal for MS Awareness license plates. 6
don’t forget to check off for ms on your tax form
YOU return completed application and $40 to Gateway Area Chapter.
YOU download application at gatewaymssociety.org g Advocate g MO License Plate. 800.344.4867
Receive your new plates, the Chapter gets $25, and you raise awareness during your daily commute.
When we collect 200 paid applications we will submit to state and production begins.
May 3, 2012 The Ritz-Carlton, St. Louis .
100 Carondelet Plaza Registration - 11:30 a.m. Program & Lunch - Promptly at Noon
Special Guest Camerone Elise Parker Parker, a runway model, International spokesmodel for Olay, is represented by the prestigious Ford Agency in New York, and was diagnosed with MS in 1998. Due to the nature of her modeling career, she kept her diagnosis secret until 2009. Today she delights audiences nationwide with her vibrant message of “Beauty and My Secret.”
Women of Courage The heart of the luncheon will be honoring three women with the Woman of Courage Award. A Women of Courage Recipient demonstrates dignity, grace, strength, compassion, and creativity in her everyday life, while living with or caring for a loved one with MS.
Ask from the Heart
An important aspect of the luncheon will be raising funds for the Chapter’s scholarship program. Last year the Chapter awarded more than $40,000 to 21 new college students.
$75 per person Parking Self parking is $3 per car in the South Parking Garage. Valet parking is available.
WELLNESS
Support amazing women affected by MS.
taking charge of your body, your life
WELLNESS
Kelsey Albers was just 25 when she was told she had MS and since she saw what MS did to her mother and great grandmother, the diagnosis hit her like a ton of bricks.
personal trainer workshop
Multiple Sclerosis: Fitness & Wellness Saturday, March 24, 1-4:15 p.m. Club Fitness 6554 Manchester Road St. Louis, MO 63139 This 3-hour program is directed to personal trainers who are interested in learning more about MS and working with individuals living with MS. No advanced preparation or experience is required. This is a continuing education program that has been approved for .3 CEU’s by the National Strength and Conditioning Association (NSCA) and the American Council on Excercise (ACE). Go to gatewaymssociety. org g Chapter Calendar.
“My whole world stopped turning,” Kelsey said. “I was only 25, but was sure I would be unable to walk within a few years.” Kelsey had been active in sports her entire life and she tried to follow her doctor’s advice to maintain muscle mass, but with the numbness, tingling and loss of balance made it hard for her to push herself. “I felt my body slipping out of control and my life was in a tailspin,” she said. “I gained over 20 pounds and lost muscle. I barely told anyone in my life I had MS. I was afraid I would be labeled as “the girl with MS” and people would make excuses for me. I felt 100%, completely inadequate.” Then Kelsey connected with Club Fitness in December of 2010 and Kelsey is diagnosed with MS at 25 and struck with fear.
Kelsey Albers, diagnosed at 25 years old, changed her life after connecting with a personal trainer Kevin.
So when Kelsey connected with the Chapter, she was able to continue her training.
met with a personal trainer, Kevin. She told him she had MS and he designed a routine just for her. They started slow, but she quickly made progress.
“I love the way I feel for the first time in years,” Kelsey said.
“The numbers on the scale started to drop, my jeans were baggy, and I started to feel strong for the first time in a long time,” Kelsey said. Having a personal trainer isn’t cheap. But Club Fitness knew that the National MS Society could help pay for her personal training.
Kelsey connects with personal trainer who develops program specifically for her and her MS.
Kelsey struggles to maintain active lifestyle due to MS symptoms. 8
Kelsey has done the Chicago Urbanathlon, Mud Run MS (now MuckRuckus MS) and the Las Vegas Half Marathon. “Now I’m proud to tell people I have multiple sclerosis and hope to inspire those living with MS,” Kelsey said. “This diagnosis isn’t an excuse to quit, but a reason to live. You can use a bad situation to do good in the world.” Kelsey regains physical strength and confidence.
Personal trainer connects Kelsey with the Chapter which can help with cost of sessions.
800.344.4867
April 22 May 19 columbia, mo st. louis, mo
3 and 5 mile routes
REGISTER NOW WITH THE CODE MSC AT muckMS.com or 800 344 4867 for $10 off registration.
VOLUNTEER
Through The Eyes of Volunteers
chester ‘chet’ bunnell
contacts will be your family and close friends.
programs volunteer
But don’t feel limited in the connections that you make. Are there people with whom you work, at your church or temple, at your favorite restaurant, or in your neighborhood to contact? Ask your friends to connect with their friends. If you’re use social networking, send information via Facebook, Twitter or other similar sites.
Volunteering is fun! I find it to be exciting, a chance to make a difference, and, at times, challenging. It is a great way to let an organization like the National Multiple Sclerosis Society, its employees, other volunteers and donors, know that you appreciate all they do for you. In this small way I can repay the great debt I owe them all for the many benefits I receive.
Think big. Last year I invited President Obama to join me at Walk MS in Clayton. While he I live in the MS wing at at a long- didn’t accept my invitation due term care facility in West St. to a scheduling conflict, I did Louis County called ‘The Heights’ receive a nice, polite call from where I serve as the unofficial a White House staffer. She liason between ‘The Heights’ informed me that President residents and the Chapter. Obama wished me, my team and Some of my ‘duties’ include: Walk MS all the best. This year I emailing and calling the Chapter invited him again and extended about residents’ concerns it to First Lady Michelle Obama, and questions, surveying the but I sent the invitation EARLIER residents on preferences for in the year. parties, helping other residents with computer or cell phone In addition I invited my federal problems, reminding residents senators and representative, my about upcoming programs. Missouri representatives and senators, the mayors of Clayton, Once you are in the position and Town and Country. I also of volunteering, you very well contacted Mike Bush, news may need other people to assist anchor KSDK Channel 5, hoping you with a project, to be on a to get a little additional coverage. team with you, or to donate I plan to try again, but send out on your behalf. This is when the invitation earlier. And since your connections will become I was a reference librarian at important and among your Saint Louis University before People with MS live in same wing of a long-term care community called The Heights.
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Chet, a resident, volunteers to serve as liason between The Heights and the Chapter. 800.344.4867
Chet Bunnell has helped connect residents in an MS wing at a long-term care community with the National MS Society. He also won an Inspirational Award at the Chapter’s Annual Meeting. retirement, I plan to contact selected faculty members there this year. The possibilities for connections are really endless, but it’s not just for the volunteer aspects. A number of the people I contacted initially for my MS work are now numbered among my email and Facebook friends. I also made contact with two very distant cousins that I had never known! Here’s hoping you want to get involved. It’s fun, really!—and who do you know with whom to make a connection? Residents connect to programs and services offered by the Chapter.
Through The Eyes of Volunteers
lisa hollins
challenge walk ms, bike ms, muckruckus ms volunteer
I began volunteering for the Dean Team Automotive Challenge Walk MS about 5 years ago after actually doing the Challenge Walk. I was so impressed with the volunteers that I wanted to be part of the volunteer team. One volunteer referred to us as his “annual Challenge Walk family.” Jen, who is known as the “blister lady,” is the most positive person and truly inspires me. Not only does she face the challenges of MS, but she also deals with type 1 diabetes. Jen is ALWAYS so upbeat with a can-do attitude encouraging and inspiring everyone around her. She even brings tye-dyed tee-shirts every year for those of us working in the foot soak area. Once I volunteered, I couldn’t stop talking about this life-
It wasn’t long before my family began volunteering with me or participating in the various events. My husband, daughter, brother, sister, nephews and soon to be son-in-law are all part of the Volunteer Team. My oldest daughter does Challenge Walk MS and she’ll be joined by her fiancé and aunt this year. My brother rides in Bike MS and the rest of us volunteer each year. The DFM Personal Trainers at the gym I belong to do the MuckRuckus while my family and I will be volunteering for this event for the first time. What fun! We’re also doing several fundraising events. It is contagious!
Lisa Hollins (left) embraces her niece Kim Meriweather after Kim presented Lisa with her Inspirational Award at the Chapter’s Annual Meeting. Lisa and her family volunteer for Challenge Walk MS, Bike MS and MuckRuckus MS. I am so thankful to the Chapter for connecting people to resources and volunteer opportunities. If you want to feel encouraged, positive and motivated, become a volunteer. You’ll get so much more than you could ever imagine.
Lisa’s family joins her as volunteers.
Lisa’s brother rides in Bike MS.
Lisa volunteers for Challenge Walk MS.
www.gatewaymssociety.org
Lisa’s daughter, her fiancé and aunt participate in Challenge Walk MS.
Trainers at Lisa’s gym participate in MuckRuckus MS. 11
VOLUNTEER
The best word for being part of the MS Volunteer team is CONTAGIOUS! Once you volunteer at a Gateway Area Chapter MS event, you want to do it again and again and you’ll want everyone you love to experience the euphoria!
changing experience to my family and friends. You feel such a connection and everyone is there with one common goal – to END MS.
WALKER REACHES OUT — RAISES THOUSANDS
DEVELOPMENT
After nine months of doctor visits, more than 130 blood tests, a spinal tap, a couple of dozen MRIs, Tim Sauer finally heard those words “you have MS.” But the question lingered – now what? Tim connected with the Gateway Area Chapter of the National MS Society and got educated and discovered what the Chapter could do for Tim and what Tim could do for the Chapter, mainly through Walk MS. Tim Sauer never does anything small and when he decided to start a Walk MS team he knew he needed to get his story out there – he needed to connect with people. So Tim, who has been living with MS since fall of 2010, started Mylein Hunters and simply began telling his story. He started with his e-mail contacts. “Sending those emails was something I would not typically do,” Tim said. “I’m usually more private. My feelings are my feelings. From that standpoint it was a big thing.” Before he knew it, Tim’s email distribution was more than 500 people and he connected to 12
Tim Sauer started the Myelin Hunters last year at Walk MS in Clayton. His team raised more than $13,000 mainly through a series of emails telling Tim’s story about living with MS. people across the country. the support came pouring in. Tim and the Mylein Hunters also “The fact that they were willing raised a lot of money. to donate on my behalf really “Despite kicking off our plans to motivated me to do more and to walk at the end of February, the be more active,” Tim said. team raised more than $13,000 with 100-plus donors,” Tim said. Through Tim’s connections with the Gateway Area Chapter he “How’d we do it? When I was diagnosed with MS, so were my attended the Society’s National Conference in Dallas and got family, friends, coworkers and others I came into contact with. more connected to the mission. Essentially all of my connections got it too.” “I experienced a wide range of emotions that were not really Tim sent out a series of emails expected,” Tim said. “Right explaining what living with MS there, all around me was MS and means to him and his family and it motivated me.” Tim decides he wants to do something about MS and starts a Walk MS team, the Myelin Hunters.
Tim is diagnosed with MS. 800.344.4867
The Myelin Hunters raise more than $13,000.
Tim shares his story through email contacts.
Walk MS: 2012 Gateway Area Walk 2012
Dollar by dollar, Walk MS is changing lives.
Denise, diagnosed in 1990
REGISTER & start fundraising today!
04.21.12
04.21.12
04.21.12
Arnold, MO Arnold City Park Noon
Edwardsville, IL Township Park Noon
Troy, MO Cape Girardeau, MO Cuivre River State Park Capaha Park Noon 1 p.m.
gatewaymswalk.org or 800-344-4867
Clayton, MO Brown Shoe Company Noon
Millstadt, IL Municipal Park Noon
Columbia, MO Stephens Park Noon
St. Peters, MO St. Charles Community College Noon
Eureka, MO Carbondale, IL SIU Campus Boat Dock Kircher Park Noon 1 p.m.
thank you to our sponsors
TRUCK CENTER
presenting sponsor
04.22.12
Moberly, MO Rothwell Park 1 p.m. Godfrey, IL Glazebrook Park 11 a.m.
04.26.12 Steppin’ Out for MS Night Walk Downtown St. Louis, MO 6 p.m.
05.12.12 Jefferson City, MO Memorial Park 11 a.m.
Washington University Recruiting Patients for New Therapy to Improve Vision after Optic Neuritis
RESEARCH
we did not have therapies to Dr. Robert Naismith has an intense scientific interest in optic improve their vision,” says Dr. Naismith. neuritis. “Optic neuritis is very common, and it remains intriguing why the disease would affect this region of the brain,” says Dr. Naismith. Because visual function is important in MS, the optic nerve has been featured in several imaging studies at Washington University. Dr. Naismith notes, “The optic nerve has advantages because it is a very discrete tract, and measurement of visual function is straightforward.” While many people with optic neuritis have good recovery, not everyone is so lucky. “Many people with low vision contributed to our imaging studies. I felt frustrated that
Ampyra® is a medicine that has been approved to improve walking speed in MS. The medication works by blocking a channel on the nerve which enhances neural conduction.
Dr. Naismith and the research team are looking to recruit additional people into the study. One question might be whether to just ask your current neurologist to prescribe Ampyra®, to see if it might help with vision. Ampyra® was approved to improve walking; insurance companies may not provide coverage for other indications.
Dr. Naismith reasoned, “Ampyra was studied for ambulation, probably by working on the spinal cord. If the medication works to restore conduction in the spinal cord, then why not the Dr. Naismith cautions, “We still don’t know whether this will optic nerve?” work. There is good scientific rationale to hope so, but Dr. Naismith wrote to the we really need an answer to company that manufactures properly counsel patients and Ampyra, and Washington not expose people to a medicine University was funded to do an investigator-initiated pilot study. which may not be appropriate. Because Ampyra is currently not indicated to improve vision, I am Dr. Naismith reports, “Acorda was interested in the premise of only recommending that it be used for this reason in a proper improving vision, and we both saw this as an opportunity to put clinical trial.” Progress in MS research is made.
MS researchers create a study.
People with MS volunteer to participate in the study.
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it to the test.”
800.344.4867
If you want to see if you qualify for the study, please contact Samantha Lancia, research coordinator, at lancias@neuro. wustl.edu or 314-747-5576. The study consists of 3 visits over 2 months, and all participants will receive the study medication as part of the trial.
Survey says walking issues important to address
• In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%—the average number of annual MS relapses. More than 1,400 people with relapsing-remitting MS participated in the study. BG12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.
Respondents to the survey reported that problems with mobility restrict their daily activities Susan Cohn-Child, diagnosed in 1995, walks and affect their with son Zach. emotional and financial well-being. • A study of 324 patients comparing the MS Some 60% of adults with MS who experience oral therapy teriflunomide with Rebif found difficulty walking have fallen; for a third of them, a no significant difference in the numbers of fall resulted in an injury. participants in each group who experienced While 65% of those surveyed reported walking events defined as treatment failure. difficulties or trouble with balance, 40% “rarely or Teriflunomide is thought to prevent damage never” discussed the issues with their doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower people with MS to discuss walking impairment three others are ongoing. The FDA is reviewing with their doctor, including newly diagnosed an application for marketing approval of patients who may be experiencing only mild teriflunomide. problems with walking or balance difficulties,” To stay current on MS therapies in the pipeline for said Nicholas LaRocca, PhD, vice president for FDA approval, sign up for MS eNEWS at www. Health Care Delivery and Policy Research at the nationalMSsociety.org/signup. Society. www.gatewaymssociety.org
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RESEARCH
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Results in for potential MS therapies
BOARD OF TRUSTEES
why did you join the board?
What drew you to the Gateway Area Chapter? My daughter and I participated in Bike MS in 1999. We were able to meet many people who have a passion for finding a cure for this disease.
What is your connection to MS? I was diagnosed with Anita Klopfenstein MS in February of 1999. I also have friends Community volunteer and colleagues who have been diagnosed with MS. What do you hope to bring to the Chapter? I hope to use my professional skills and passion to find a cure for MS and to help the Chapter grow and reach their strategic goals.
What drew you to the Gateway Area Chapter? Last April I came across the opportunity to serve on a non-profit board through the Olin Board Fellows Program. I was immediately drawn to the Gateway Area Chapter because of my connection to MS, the peoplecentric leadership of the organization, John Merten and the opportunity Washington University to help and serve the MBA Student community. What is your connection to MS? My close friend, Kellie Cogley, was diagnosed with MS when she was 20 years old and has been living with the disease ever since. It is terrible to see the debilitating effects of MS and I hope to see a world free of MS in my lifetime.
Why did you want to join the board? I have been a volunteer on the Bike MS Logistics Committee for a few years. When I was approached What do you hope to bring to the Chapter? by (Chapter President) Phyllis Robsham and (board I plan on contributing my expertise in fiscal management and oversight to improve the Chapter. member) Mike Houlihan, I was honored by the opportunity to become more involved. Why did you want to join the board? There’s nothing more rewarding than giving back What do you hope to accomplish with the and helping those in need, and being able to share board? that experience with others. In addition I wanted I hope to increase the awareness of MS in our to be involved in a cause greater than myself. community and ensure people and families who struggle with this disease have the support network What do you hope to accomplish with the they need to live fulfilling lives. board? I have taken on a project to review the Chapter’s finances so it can continue to provide sustainable programs and services for the MS community. 16
800.344.4867
MS CROSSWORD PUZZLE 1
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2 The _______ program is designed to connect participants with someone who has MS to make the experience more meaningful.
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3 This camp program is for youth ages 8-15 who have a loved one with MS or live with MS and takes place in July.
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5 This program matches up people who are newly diagnosed with a volunteer mentor who has MS to meet one-on-one and help answer questions.
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7 The National MS Society Chapter located in Eastern Missouri and Southern Illinois is known as the Area Chapter. 10 This is a way to meet others living with MS and hear their stories. Whether you have been recently diagnosed with MS in the past five years or have just moved to the area, this fun-filled get together is about learning from one another and making lasting friendships.
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12 This is one method for New Connections, Peers, and especially TeleFriends to communicate with each other.
1 The name of a new on- 8 More than 3,000 14 This fall getaway takes 21 These groups are led line CONNECTIONS people participated place at Touch of by volunteers and 15 This program can begin a service where you can in this last September Nature in Makanda, meet throughout the relationship with a trained pick your own trained and raised more than IL. Chapter (hint: see pgs. individual with MS who truly PEER and discuss is$2 million. 24-25). understands the challenges faced 16 This connects people sues about MS. when diagnosed with MS, all 9 This event was who have an interest 22 At the National MS from the privacy of your home. 4 This event is the ralreplaced by the new in exercise programs Society Gateway Area Through this program you will be lying point of the MS event now called through a monthly on-line web site, this connected with someone with movement. There are MuckRuckus. teleconference. CALENDAR lists every MS over the phone. 14 sites this spring. event one can attend. 11 This spring retreat 20 In most every National 17 Besides the telephone, new 6 This support group is takes place at Pere MS Society fundrais- 23 The National MS SociPeer Connections Support for perfect for anyone Marquette Lodge in ing event participants ety Gateway Area web Group people can also privately who provides care to Grafton. use these a lot. (Hint: site is found on what? communicate using this internet someone with MS; you put socks on them (Hint: a computer communication service. 13 Fundraisers that spouses, significant both) with internet access) anyone can do themothers, siblings, 18 This muddy event has replaced selves. (hint see pg. 5) friends, parents and what was known as “Mud Run.� others. answers on page 18
www.gatewaymssociety.org
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MS BRAIN GAMES
11
DOWN
LIVING WITH MS
share what you know — msconnection.org Multiple sclerosis destroys connections Share What You Know inside us. It disconnects the mind from Find, store and share meaningful the body and people from each other. updates, posts, videos, articles and But what if we could defy this disease other content about the topics you with the very thing it seeks to destroy: care about most. Connect with Connections? people, groups and discussions Would we share more knowledge? that relate to the topics that shape More questions? More answers? More your world. Join conversations with hope? others who share your experiences, Maybe, by connecting enough small challenges, and interests, and put victories, we could win some really big the best resources available to work ones. for you, so you can move your life What if everyone living with MS could forward in the way that feels right for connect with one another? With those you. who care for someone living with MS? Or with those who research ways to stop, restore Starting March 12th the MS community will never or end the disease? Or those who provide medical be the same. care or treat the symptoms of MS? Or the people who raise awareness and funds to help create a SHARE WHAT YOU KNOW: MSconnection.org. world free of MS? What if everyone who cares about MS could join together in one place? Maybe, by connecting all of our knowledge, MS CROSS WORD PUZZLE ANSWER KEY and hope, and experience, we can gain a new peerconnections h understanding of how to move forward. c w a lk M S a Connect With Others m m b Starting March 12th, you’ll be able to make carepartnersu p portgrou p i h a g meaningful connections - when, where and how o o t B i ke M S p e n mudru n you want - with easy access to the best content and e w n n resources the MS community can bring you. You’ll spr i ngrende z vous a e n h di y w learn about the topics that are most important to g o c you, connect with people you want to connect c n o o e n with, and have expert MS information and opinions n f amilyweeke n d right at your fingertips. v e 1
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Go to MSconnection.org.
Share what you know. 18
Connect with and learn from others.
800.344.4867
CHALLENGE WALK MS 3 DAYS. 50 MILES.
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to cre
d l r o w ate a
NEWS BRIEFS
e h t o G e l i m a r xt S M f o free
JUNE 1-3, 2012 ST. LOUIS, MO
For your friends, for your family, for yourself Register Today! Walk 2012
gatewayMSchallenge.org or 800 344 4867 facebook.com/gatewaymschallenge
ask the professional
QUESTION: I’ve heard about the Chapter’s Care Management program but what is it and how can it help me?
ASK THE PROFESSIONAL
Care Management connects someone living with MS who has significant needs or is going through a time of transition with a Chapter social worker. The goal of the program is to help improve and enhance the quality of life for those living with MS. Care Managers do this by helping guide individuals, supporting them and helping connect them with resources available to them. Through individualized attention, the Care Manager will help promote a better quality of life so you can achieve the highest level of independence during this challenging time.
Kerri Bowes and Katie MacLean are the Chapter’s two full-time licensed social workers on staff.
Examples of situations where Care Management may be beneficial include change in health status, change in caregiver situation, problems with support system and financial crisis. The Care Management process typically includes a home visit and completion of a personal assessment. During this process goals are identified and plans to achieve those goals are outlined. The Care Manager will then provide continued support and resources as you work to accomplish your goals. Care Management includes: • A comprehensive professional assessment • Establishment of goals and priorities • Coordination of community resources • Emotional support • Assistance with making difficult decisions during periods of transition • Development of immediate and long-term plans • Individualized attention and assistance to fit your needs If you have any questions about the Care Management program or are interested in participating in the program, please contact Kerri Bowes MSW, LMSW at 1-800-344-4867. She looks forward to helping you enhance the quality of your life while living with MS. Care Manager assesses situation and connects person to resources helping them through difficult time.
Person living with MS faces time of crisis and calls the Chapter.
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800.344.4867
Don’t just ride, Bike MS. 2012
Bike MS: Express Scripts Gateway Getaway Ride /// september 8-9, 2012 /// columbia, mo /// 40, 75, 100 mile route options /// get $10 off registration with the code ‘msc’ /// gatewayMSbikeride.org or call 800 344 4867 ///
Gateway Area Chapter
Research MS
Programs for Carepartners
MS specialists will provide up-to-date information on: • Research & new therapies for MS • New data on disease modifying medication for MS
HAPPENINGS
FREE PROGRAM INCLUDES BRUNCH
collinsville, il Saturday, march 24
10:30 a.m. - 12:30 p.m. Collinsville Memorial Library 408 West Main Street Collinsville, IL GUEST SPEAKER: Dr. Robert Naismith Assistant Professor of Neurology John L. Trotter MS Center Washington University in St. Louis
carbondale, il Saturday, June 23
Carepartner Family & Friends Group
This group covers a series of topics important to carepartners or to anyone who provides care for a loved one with MS. David C. Pratt Cancer Center Mercy Center 607 South New Ballas Rd. St. Louis, MO 63141 First Tuesday of the month, 6:15 p.m. Next Meeting is March 6 RSVP required. Contact Debra at the Chapter at 800-344-4867. Group is facilitated by Karen Tripp, Marriage & Family Counselor.
MSTogether (for couples)
10 a.m. - Noon Holiday Inn Hotel and Conference Center 2300 Reed Station Parkway Carbondale, IL 62901
This couples social group provides an informal social opportunity to meet and talk. Events are organized by the couples themselves, including Carole, diagnosed in 2005 potlucks and ballgames. Expect to actively participate in planning and organizing, as well as having fun! Meets quarterly, location changes but is generally in the St. Louis area. If interested email Joe Salacki at jsalacki2@gmail.com.
Telephone Groups
The Carepartner Tele-chat program connects carepartners of people living with MS to other carepartners through a free call-in chat service where people can share time, interests, coping techniques, experiences and information. RSVP required. Facilitated by Karen Tripp, Marriage & Family Counselor. April 2 - Lower Your Stress by Caring for yourself, 7 p.m. April 18, 7 p.m. 22
1.800.344.4867
P aid A dvertisement
MS Education Link Hear specialists discuss information about multiple sclerosis (MS) and a prescription treatment option. Light food and beverages served. march 3 — creve coeur, mo Location: Courtyard by Marriott 828 North New Ballas Road Creve Coeur, MO 63146 Speaker: Mary-Kay Fink, MSN, RN Time: 10 a.m. RSVP: By March 2 by calling 800-973-0362
April 18 — collinsville, IL Location: Porter’s Steakhouse 1000 Eastport Plaza Drive Collinsville, IL 62234 Speaker: Florian Thomas, MD, MA, PhD Time: 6 p.m. RSVP: By April 17 by calling 800-973-0362
march 13 — st. louis, MO Location: Rich and Charlie’s Restaurant 9942 Watson Road Crestwood, MO 63126 Speaker: Florian Thomas, MD, MA, PhD Time: 6 p.m. RSVP: By March 12 by calling 800-973-0362
April 27 — quincy, IL Location: The Pier Restaurant 401 Bayview Drive Quincy, IL 62301 Speaker: Heather Popham, NP Time: 5:30 p.m. RSVP: By April 26 by calling 800-973-0362
april 4 — st. charles, mo Location: Grappa Grill 1644 Country Club Plaza Drive Saint Charles, MO 63303 Speaker: Mary-Kay Fink, MSN, RN Time: 6 p.m. RSVP: By April 3 by calling 800-973-0362
May 11 — cape girardeau, mo Location: Celebrations Restaurant 615 Bellevue Cape Girardeau, MO, 63701 Speaker: Heather Popham, NP Time: 6:30 p.m. RSVP: By May 10 by calling 800-973-0362
april 5 — st. louis, mo Location: Bartolino’s South Restaurant 5914 South Lindbergh Ave. St. Louis, MO 63123 Speaker: Heather Popham, NP Time: 6 p.m. RSVP: By April 4 by calling 800-973-0362
May 15 — st. louis, mo Location: Hacienda Restaurant 9748 Manchester Road St. Louis, MO, 63119 Speaker: Heather Popham, NP Time: 6 p.m. RSVP: By May 14 by calling 800-973-0362
P aid A dvertisement
Gateway Area Chapter
Mark Your Calendar for Spring Rendezvous!
HAPPENINGS
Take one weekend to relax and have fun with other couples living with or affected by MS. April 28-29 Pere Marquette Lodge Grafton, Illinois Cost: $60 (before April 13), $70 (after April 13) Registration deadline: April 18. The lodge is located in the 8,000-acre Pere Marquette State Park, overlooking the Illinois River. Built in the 1930s and continually maintained, the lodge combines rustic charm with modern amenities, all just 45 minutes from St. Louis. Guests may choose a variety of activities including: • Guest speakers on • Accessible Swimming relationship • Evening building and Entertainment effective • Group for communication carepartners • Arts and Crafts A limited number of fee waivers are available for the program and/or accessible transportation. For details, please call Debra at 314-446-4151.
Progressive MS Symposium Saturday, May 5, 10 a.m. - 2 p.m. Live at Frontenac Hilton 1335 South Lindbergh Blvd., St. Louis, MO Cost: $10
Via livestream to Cape Girardeau, MO; Carbondale, IL, Columbia, MO; Metro East, IL Go to www.gatewaymssociety.org for details on locations and registration.
Keynote Speaker: George Kraft, MD, MS
Director, Western Multiple Sclerosis Clinical Center Seattle, Washington Professor, Rehabilitation Medicine and Neurology, University of Washington Dr. Kraft received his undergraduate degree from Harvard and his medical degree from Ohio State University. At the University of Washington, he is the director of the Western Multiple Sclerosis Center, the principal investigator of the Multiple Sclerosis Rehabilitation Research and Training. His research interests include rehabilitation issues in MS, electrodiagnostic medicine and muscle and nerve diseases.
For more information, questions, or to RSVP, Guest Speaker: Joanne Wagner, PT, PhD contact the Chapter’s office at 1-800-344-4867. This Assistant Professor, Department of Physical program fills up quickly, so register early! Therapy and Athletic Training, Doisy College of Health Sciences, Saint Louis University Program includes: • Lunch • Breakout session about the Affordable Care Act • Guest speaker at each program site
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1.800.344.4867
happenings Town Hall Meetings We are visiting communities across the Chapter’s service area to meet people affected by MS.
New Connections
Cape Girardeau, Missouri March 17, 10 a.m. - Noon St. Francis Health & Wellness Center Conf. Rm. 1 150 S. Mount Auburn Rd. Cape Girardeau, MO 63703 West Plains, Missouri June 24, 1-3 p.m. Ozark Medical Center 1100 Kentucky Ave. West Plains, MO 65775
Meet & Greet
Come meet with other people who have been Chapter staff will be attending to share newly diagnosed with MS in the past five years or information about programs, services and who have recently moved to the area. volunteer opportunities available to you. Staff members from the Chapter will be attending to let you know what we do and how we can help. A three-course dinner will also be included with this free program. Space is limited so make your reservation today! Columbia, MO Mt. Vernon, IL March 15, 6 p.m. May 23, 6 p.m. Speaker: Mt. Vernon Airport Dr. Myles Goble Banquet Room Grand Cru Restaurant 100 Aviation Drive 2600 S. Providence Rd. Mt. Vernon, IL 62864 Columbia, MO 65203 Registration Deadline: Registration Deadline: May 16 March 12
This is also a great way to meet other people living with MS. 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. May 17, 6 p.m. St. Charles, MO Grappa Grill Patio 1644 Country Club Plaza St. Charles, MO Dinner provided
www.gatewaymssociety.org
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HAPPENINGS
Kennett, Missouri March 13, 6-8 p.m. First Christian Church 105 W. Washington St. At these ‘town hall’ meetings you will: Kennett, MO 63857 • learn about resources available to you. Marion, Illinois • be able to provide feedback on what you expect from the Chapter. March 18, 1-3 p.m. Mackie’s Pizza • help us improve how we serve 2704 Walton Way people affected by MS. Marion, IL 62959 • get a free meal!
Gateway Area Chapter
HAPPENINGS
Family Social Programs — There’s Something For You
Grant’s Farm Saturday, May 12, 6:30-9 p.m.
Carlyle Lake, IL Saturday, June 9, 3-7 p.m.
Bowling Day in Cape Girardeau, MO Sunday, June 24, 12:30-3 p.m.
Family Evening in Columbia, MO Sunday, June 10, 2012, 3-7 p.m.
10501 Gravois Road, St. Louis, MO 63123 Time to enjoy an evening with your friends and family at Grant’s Farm! The program begins with a ride on a Grant’s Farm tram and a tour of Deer Park. Your next stop is at The Bauernhof, home of world-renowned stables, and location of the evening’s festivities. Activities include: • Photo with Clydesdales • Meeting others living with • Accessible tram tour of MS Deer Park-home to exotic • Arts and Crafts area animals from around the • Live music world! • Food buffet and beverages Early Bird Fee (before May 2): $10/adult, $5/child Regular Fee: $20/adult , $10/child Registration deadline: May 9 Fee waivers available for program and transportation.
West Park Lanes Bowling Alley 354 S. Silver Springs Road, Cape Girardeau, MO Bring your family to an afternoon of bowling. Includes free registration, one hour of bowling, shoe rental and lunch.
MS Nights at the Ballpark MS Night at Busch Stadium Monday, May 14, 6:05 p.m.
See the 2011 World Champion Cardinals battle the long-time rival Chicago Cubs and help raise money for the Chapter. Cost: $28 and includes T-shirt.
MS Night at Southern Illinois Miners Saturday, June 2, 7:05 p.m.
Southern Illinois Miners vs. Schaumburg Rent One Park, 1000 Miners Dr., Marion, IL, 62959 Cost: FREE (no meal option) 26
Olympic Shelter Eldon Hazlet State Park 20100 Hazlet Park Rd. Carlyle, IL 62231 www.corpslakes.us/carlyle Family day at Carlyle Lake is a great way to meet other individuals living with MS, their friends and family. Join us for an afternoon of fun, food, family and friends. The program will take place at the Olympic Shelter located with easy access and beautiful view of Carlyle Lake. Activities include: • Arts and crafts area • Dessert potluck • Face painting • Games and other • Barbeque outdoor activities
Stephens Lake Park Riechmann Pavilion 2300 E. Walnut, Columbia, MO Cost: FREE Family Evening-Columbia, MO is a great way to meet other people living with MS. Join us for an afternoon of fun, food, family and friends. The program will take place at an air-conditioned, indoor pavilion located with easy access to Stephens Lake. Activities include: • Arts and crafts area • Dessert potluck • Games and other • Face painting • Raffle prizes outdoor activities • Barbeque Fee waivers are available for transportation to program. Registration deadline: June 6
1.800.344.4867
happenings Camp Hope
July 22-27 Touch of Nature Environmental Center Southern Illinois University 1206 Touch of Nature Road Makanda, Illinois 62958 (near Carbondale)
HAPPENINGS
This program is just for youth ages 8-15 who are affected by MS. It includes recreational and educational activities to help young people better understand the disease and ways to live with it in their lives. Programs and activities will be available for children living with MS and for children who have a parent or other relative living with MS. Campers are encouraged to bring a guest to share in the fun! Activities include: • Swimming, canoeing, and pontoon boat rides • Adventure hikes and fishing • Campfires, hay rides, and evening entertainment • Arts and crafts and other creative activities • Horseback riding • MS education and sharing groups
“I’m very glad my daughter went. I don’t know what it was that the staff and volunteers did, but she just seemed to come more out of her shell and I want that for her. For her just to forget about serious stuff and be a kid was great.” - Wendy, whose daughter went to Camp Hope last year
Program Fee: $150 per child. The fee includes all meals, overnight lodging, and activities. Registration: Each camper must complete an application before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and a billing invoice. Call 800-344-4867 option 2 or visit mscamphope.org. The deadline is June 19.
www.gatewaymssociety.org
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Gateway Area Chapter
TALK MS GROUPS
Talk MS Groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers who also have a connection to MS.
MISSOURI
NEW GROUP!
HAPPENINGS
Camdenton
3rd Wednesday 4:30 p.m.
Cape Girardeau
3rd Saturday 10 a.m.
Columbia
3rd Wednesday 6 p.m.
Crystal City/Festus Jefferson City Moberly
NEW
GROUP!
New London O’Fallon
NEW
GROUP!
St. Charles Washington West Plains
Camden County Library 99 Rodeo Road, Camdenton, MO 65020 St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 Rusk Rehabilitation Center 315 Business Loop 70 West Columbia, MO 65203 Disability Resource Association 420B S. Truman Bl., Crystal City, MO 63019 Coca-Cola Bottling, Meeting Room 605 Washington, Jefferson City, MO 65109 Little Dixie Regional Libraries 111 North 4th Street, Moberly, MO 65270 Ralls County Health Department Building 405 W. 1st Street, New London, MO 63459 Conference Room A/B Barnes-Jewish Hospital, St. Peters, MO 63376 Hardee’s Restaurant, 501 Mid Rivers Mall Dr., St. Peters, MO 63376 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
2nd Tuesday 1 p.m. 1st Monday 6 p.m. 2nd Saturday 10:30 a.m. 2nd Tuesday 7 p.m. April 15, 2 p.m. 3rd Sunday 3 p.m. 3rd Monday 6 p.m. 3rd Wednesday 5 p.m.
Christy Bays, cell (573) 480-7932 cm2owl@hotmail.com Sharon (573) 332-8148 Rebecca Dykhouse, LSW (573) 817-4697 rebecca.dykhouse@healthsouth.com Marlene (636) 464-2533 Sharon webradleys@yahoo.com Rebekah Walters (573) 464-2433 bekagrace10@gmail.com Lynelle David (660) 833-3175 Debby (573) 267-3365 mlrdsr@att.net debtalkms@yahoo.com Jim (314) 602-4578 Anne (636) 359-6037 Charline (417) 469-1068 Sally (417) 469-4842
ST. LOUIS METRO 3rd Wednesday 7 p.m. March 10, May 12 Mid-St. Louis County 1:30 p.m. Generation OptiMiStic for 1st Saturday people in their 20s, 30s & 40s 10 a.m. NEW April 25, May 30, West County GROUP! June 27 Prayer & Health 6:30-8 p.m. Affton
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Weber Road Library Linda (314) 544-5623 4444 Weber Rd, St. Louis, MO 63123 Mercy Rehabilitation Hospital, 14561 North Outer Hwy 40, St. Louis, MO 63017 Kevin (314) 841-3755 NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Michelle (636) 447-5407 Sachs Library 16400 Burkhardt Place Chesterfield, MO 63017
1.800.344.4867
Rose Marie sqsace@sbcglobal.net
happenings TALK MS GROUPS ILLINOIS
Southern Illinois
2nd Monday 6 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 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. #1 Emerald Terrace, Swansea, IL 62226 Heartland Regional-Medical Center Classroom #1, 3333 West DeYoung, Marion, IL 62959
Lisa (618) 258-0615 Amy (618) 235-4226
HAPPENINGS
3rd Tuesday 7-9 p.m. 2nd Sunday Belleville/ O’Fallon 2:30 p.m. 4th Monday Central Illinois 7 p.m. Tuesday S’myelin Gang of Litchfield 4th 6:30 p.m. April 25, 7 p.m. Metro East June 27, 7 p.m. Alton/River Bend
Tony (618) 302-1333 tmadmz@frontier.com Meredith (217) 556-4418 Diane (618) 235-8823 Earhart500@aol.com Robert (618) 983-0321
SPECIALIZED GROUPS
Creative Art Experience
Varies, contact for Varies, contact for information information NMSS Office 3rd Saturday 1867 Lackland Hill Parkway 10 a.m. St. Louis, MO 63146
MS Fun, Friends & Food Potluck
May 1 6 p.m.
Veterans with MS
2nd Wednesday 10 a.m.
CarePartner and Family Group
1st Tuesday 6:15 p.m.
Couples Group
David C. Pratt Cancer Center Mercy Hospital 607 S. New Ballas Rd., St. Louis, MO 63147 Veterans Admin. Medical Center 1 Jefferson Barracks Dr., St. Louis, MO 63125 David C. Pratt Cancer Center Mercy Hospital 607 S. New Ballas Rd., St. Louis, MO 63147
www.gatewaymssociety.org
jsalacki2@gmail.com laurapieczynski@yahoo.com michellekeating@juno.com Michelle (314) 251-6400 Debbie (636) 579-0264 debra.morrissey2012@yahoo.com Penny (314) 652-4100 ext. 63274 Debra (800) 344-4867 debra.preston@nmss.org
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Gateway Area Chapter
STAY HEALTHY WITH MS Studies show exercise not only improves your overall health and well-being, but also helps manage
HAPPENINGS
many MS symptoms. Move forward through exercise and find an exercise program in your community or become an expert in using a healthy lifestyle to help manage MS.
The Chapter offers financial assistance for attendance and transportation to therapeutic recreation programs. Financial assistance is available to help you pay for therapeutic recreation classes and memberships. In some cases, assistance with transportation may also be available. To apply, a completed financial assistance application and confirmation of MS diagnosis from your doctor is required. Amount of financial assistance is derived from a sliding scale based on the information from the financial assistance application. Applications are accepted year-round, however completed applications will only be approved during January, April, July and October. For more information go to www.gatewaymssociety.org g Stay Healthy with MS.
aquatics pilates
tai chi
Yoga
zumba
THERAPEUTIC RECREATION SITES St. Louis Adiva Dance Center
Address 943 South Kirkwood Road Kirkwood, MO 63122 Bridgeton Community 4201 Fee Fee Road Center Bridgeton, MO 63044 Carondelet Park Rec 930 Holly Hills Ave Plex St. Louis MO 63111 Center of Clayton 50 Gay Avenue Clayton , MO 63105 Chesterfield JCC 2 Millstone Campus Drive St. Louis, MO 63146 Downtown YMCA 1528 Locust Street St. Louis, MO 63103 Dragonfly Health Spa 1272 A Jungermann & Yoga St. Peters, MO 63376 Edward Jones Family 12521 Marine Avenue YMCA St. Louis, MO 63146 Emerson Family YMCA 3390 Pershall Road St. Louis, MO 63135 Hazelwood 1186 Teson Road Community Center Hazelwood, MO 63042 Jefferson College 1000 Viking Drive Hillsboro, MO 63050 Kirkwood Family YMCA 325 N. Taylor St. Louis, MO 63122 Marquette YMCA 314 North Broadway St. Louis, MO 63102 Maryland Heights 2344 McKelvey Road Centre Maryland Heights, MO 63043 30
Contact Theresa 314-822-7113 Cole 314-739-5599 Shannon 314-768-9622 Diane 314-353-4960 Sheena 314-442-3495 314-436-1177 636-598-5544 314-439-9622 Georgia/Chris 314-521-1822 Jill 314-731-0980 Christina 636-942-3000 314-965-9622 314-436-7070 636-699-8508
1.800.344.4867
activities offered
happenings THERAPEUTIC RECREATION SITES St. Louis cont. Mascoutah Senior Center Mid-County YMCA
aquatics pilates
tai chi
Yoga
Contact 618-566-8758
activities offered
Sandi 314-962-9450 314-781-9020 800-344-4867 Linda 314-729-0181 Carolyn 636-896-0999 Rich 314-644-3100 314-843-6703
HAPPENINGS HAPPENINGS
Address 227 N. Market Mascoutah, IL 62258 1900 Urban Drive St. Louis, MO 63144 Olivette Community 9723 Grandview Drive Center St. Louis, MO 63132 Mercy Medical 615 S. New Ballas Rd., Building St. Louis, MO, 63141 Show Me Aquatics 2085 Bluestone Drive St. Charles, MO 63303 South City Family 3150 Sublette Avenue YMCA St. Louis, MO 63139 South County Family 12736 Southfork Road YMCA St. Louis, MO 63128 St. Charles County 3456 Harry S. Truman Blvd. YMCA St. Charles, MO 63301 The Cancer Support 1058 Old Des Peres Rd Community St. Louis, MO 63131 The Lodge in Des Peres 1050 Des Peres Road St. Louis, MO 63131 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 Tri-County Family 1105 E South Service Rd YMCA Wentzville, MO 63385 Riverchase 990 Horan Dr Fenton, MO 63026 Washington Four 400 Grand Avenue Rivers Family YMCA Washington, MO 63090 Webster Groves Family 226 East Lockwood Avenue YMCA Webster Groves, MO 63119 Wellbridge Athletic 7620 Forsyth Boulevard Club Clayton , MO Wellbridge Athletic 998 Woods Mill Road Club Town & Country, MO 63131 West County Family 16464 Burkhardt Pl YMCA Chesterfield, MO 63017 Yoga Saint Louis 3305 Jamieson Ave. St. Louis, MO 63139 Z Power Fitness 233 Lamp & Lantern Village Town & Country, MO 63017
636-928-1928 Kathryn 314-238-2000 314-221-8454 Leslie or Adam 636-227-8950 636-332-5574 Phyllis 618-482-9140 Ann 636-239-5704 314-962-9622 Trudy C 314-746-1500 Abby 636-207-3000 636-532-3100 Bruce 314-645-9785 Nancy 314-221-8454
zumba
www.gatewaymssociety.org
United Way of Greater St. Louis
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Gateway Area Chapter
THERAPEUTIC RECREATION SITES Mid-Missouri Columbia Activity and Rec. Center Elm Street Yoga
HAPPENINGS
Jefferson City YMCA Mexico Family YMCA Pilates of Columbia Illinois Edwardsville YMCA Jerseyville Wellness Center John A. Logan College Maryville YMCA O’Fallon Community YMCA One-O-One Yoga Sukha Yoga Center Southeast Missouri Black River Coliseum Cape Girardeau Municipal Pool PARC Fitness Center Yoga at the Firm Xtreme Gymnastics Cheer and Dance
Address 1701 W. Ash Street Columbia, MO 904 Elm St. Suite 210. Columbia, MO 424 Stadium Boulevard Jefferson City, MO 65101 1127 Adams Street Mexico, MO 65265 11 N College Ave # 101 Columbia, MO 65201 Address 1200 Esic Drive Edwardsville, IL 62025 400 Maple Summit Rd Jerseyville, IL. 62052 700 Logan College Road Carterville, IL 62918 1 Town Center Drive Maryville, IL 62062 284 North 7 Hills Road O’Fallon, IL 62269
Contact Janel 573-874-7460 Linda 573-441-8566 Erica 573-761-9021 Consuelo 573-581-1540 Robin 573-443-2062 Contact Pam 618-656-0436 Jennifer 618-498-3500 Chris 618-985-2828 Julie 618-346-5600 618-628-7701
101 S Graham Ave # 1 Carbondale, IL 62901 18 South High Street Belleville, IL 62220 Address
Sarah 618-457-8186 Sarah 618-236-9642 Contact
301 South 5th Street Poplar Bluff, MO 63901 1920 Whitener Street Cape Girardeau, MO 63701 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 2620 N. Westwood Blvd. Poplar Bluff, MO 63901 422 West Pine Street Poplar Bluff, MO 63901
Mandi 573-686-8009 Pat 573-335-4040 Mindy 573-686-5985 Vicki 417-293-1184 Christi 573-785-3780
aquatics pilates 32
tai chi
1.800.344.4867
Yoga
activities offered
activities offered
activities offered
zumba
happenings Wellness Network
The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference. These monthly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers.
April 26, 7-8 p.m.
Socialization and MS
May 24, 7-8 p.m.
Creative Therapy and MS
June 28, 7-8 p.m.
Beat the Heat: Staying Active in Summer
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. 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.
Midwest Teleconference Series Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. Midwest June are: The series topics from March through Teleconference Series Where Are Research: Where Are We Now?
We Going?
Speaker: Dr. Rana Zabad Date/Time: March 12, 7-8Midwest p.m. Teleconference Series
Maximizing Your Physical Therapy for Optimum Benefit Speaker: Dr. Deborah Silkwood-Sherer Midwest Date/Time: April 9, 7-8 p.m. Teleconference Series
Me, Myself and I: The Art of Being Your Own CarePartner Speaker: Dr. Marcia Finlayson Date/Time: May 14, 7-8 p.m.
Give Yourself a Hand: Tools for Everyday Life Speaker: Merin Salsbury, PT Date/Time: June 11, 7-8 p.m.
Market Place Ad Ralli 3-wheel scooter. 2004 Red. Model #SC151. Like New. New batteries and have the receipt. 300 lb. weight capacity. 41� long. 21� wide. Call Diana in St. Louis at 314-664-6688.
www.gatewaymssociety.org
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HAPPENINGS
Upcoming topics include: March 22, 7-8 p.m. Fear of Falling: Common Exercise Mishaps
Dial. Listen. Learn.
Gateway Area Chapter
HAPPENINGS
Chapter Calendar
in this area. pg. st. louis illinois # mETRO 33
Date
program/event
March 12
Teleconference
March 13 March 15
Town Hall Meeting New Connections
25 25
March 17
Town Hall Meeting
25
March 18
Town Hall Meeting
25
March 22 March 24 April 2 April 9 April 26 April 28-29 May 5 May 12 May 14 May 14
Wellness Network Research MS Carepartner Tele-chat Teleconference Wellness Network Spring Rendezvous Progressive MS Symposium Family Evening at Grant’s Farm Teleconference MS Night at Busch Stadium
33 22 22 33 33 24 24 26 33 26
May 17 May 23
Meet & Greet New Connections
25 25
May 24
Wellness Network
33
June 2
Night at the Ballpark
26
June 9
Family Evening at Carlyle Lake
26
June 10
Family Evening at Columbia, MO
26
June 11
Teleconference
33
June 18
Carepartner Tele-Chat
22
June 23
Research MS
22
June 24
Town Hall Meeting
25
June 24 June 28
Available via Available via live-stream telephone southern midSeillinois Missouri Missouri
P Program located
P P P P P
P P P P P P P P P
P P
Family Evening at Cape Girardeau 26 Wellness Network
P
33
Chapter Open Houses Do you want to learn more about the National MS Society or get more involved? Join us for a one hour open house, hear stories about ways the Chapter helps people in our community, and learn how you can join the movement! 34
First Thursday of every month Noon and 6 p.m. 1867 Lackland Hill Parkway, St. Louis, MO 63146 RSVP at gatewaymssociety.org g Chapter Calendar, or call 800-344-4867.
1.800.344.4867
happenings Program Registration
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, g “Chapter Calendar” to choose the program you would like to attend.
www.gatewaymssociety.org
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HAPPENINGS
[ ] Research: Where are we now? Where are we going? Teleconference March 12 COST: FREE PROGRAM [ ] Town Hall Meeting, Kennett, MO March 13 COST: FREE PROGRAM [ ] New Connections, Columbia, MO March 15 COST: FREE PROGRAM [ ] Town Hall Meeting, Cape Girardeau, MO March 17 COST: FREE PROGRAM [ ] Town Hall Meeting, Marion, IL March 18 COST: FREE PROGRAM [ ] Wellness Network - Fear of Falling: Common Exercise Mishaps March 22 COST: FREE PROGRAM [ ] Research MS, Collinsville, IL March 24 COST: FREE PROGRAM [ ] Carepartner Tele-chat April 2 COST: FREE PROGRAM [ ] Maximizing Your Physical Therapy Teleconference April 9 COST: FREE PROGRAM [ ] Wellness Network - Socialization and MS April 26 COST: FREE PROGRAM [ ] Spring Rendezvous April 28-29 COST: $60 (before April 13) [ ] Progressive MS Symposium May 5 COST: $10 [ ] Family Evening at Grant’s Farm May 12 COST: $10/adult, $5 child by May 2 COST: $20/adult, $10 child after May 2 [ ] The Art of Being Your Own CarePartner Teleconference May 14 COST: FREE PROGRAM [ ] MS Night at Busch Stadium: Cardinals vs. Cubs May 14 COST: $28 per ticket includes T-shirt [ ] Meet & Greet, St. Charles, MO May 17 COST: FREE PROGRAM [ ] New Connections, Mt Vernon, IL May 23 COST: FREE PROGRAM [ ] Wellness Network - Creative Therapy and MS May 24 COST: FREE PROGRAM [ ] Family Evening at Southern Illinois Miners June 2 COST: FREE PROGRAM [ ] Family Evening at Carlyle Lake, IL June 9 COST: FREE PROGRAM [ ] Family Evening at Columbia, MO June 10 COST: FREE PROGRAM [ ] Tools for Everday Life Teleconference June 11 COST: FREE PROGRAM [ ] Carepartner Tele-chat June 18 COST: FREE PROGRAM [ ] Research MS, Carbondale, IL June 23 COST: FREE PROGRAM [ ] Town Hall Meeting, West Plains, MO June 24 COST: FREE PROGRAM [ ] Family Evening at Cape Girardeau, MO June 24 COST: FREE PROGRAM [ ] Wellness Network - Beat the Heat: Staying Active in Summer June 28 COST: FREE PROGRAM
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146
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 Research MS. . . . . . . . . . . . . . . . . . . . . 22 CarePartner Programs . . . . . . . . . . . . 22 Spring Rendezvous . . . . . . . . . . . . . . 24 Progressive MS Symposium. . . . . . . . 24 Town Hall Meetings . . . . . . . . . . . . . . 25 New Connections . . . . . . . . . . . . . . . . 25 Meet & Greet. . . . . . . . . . . . . . . . . . . . 25 Family Programs. . . . . . . . . . . . . . . . . 26 Camp Hope. . . . . . . . . . . . . . . . . . . . . . 27 Talk MS Groups . . . . . . . . . . . . . . . 28-29 Therapeutic Recreation. . . . . . . . .30-32 Wellness Network. . . . . . . . . . . . . . . . 33 Midwest Teleconference Series. . . . . 33 Chapter Calendar. . . . . . . . . . . . . . . . . 34 Registration Page. . . . . . . . . . . . . . . . 35
Learn about the Chapter at a This issue has discussed the importance of connections and Town Hall Meeting (pg. 25) or try a Talk MS group meeting how they help kill MS. (pgs. 28-29). This spring and summer you can get connected in a variety You can also connect to the Chapter by telephone through of ways with the Chapter. the Wellness Network or the Midwest Teleconference Series Get registered for one of our family social programs and (pg. 33). meet other people living with MS in a relaxed, fun setting (pgs. 25-26).
United Way of Greater St. Louis
Your Source for Knowledge, Wellness, and Support
Spring 2012