MS Connection - Spring Edition 2012

MOVING TOWARD A WORLD FREE OF MS | VOLUME 6 • EDITION 1

INSIDE THIS ISSUE

GATEWAY AREA CHAPTER

Article 1 Title PAGE #




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MOVING TOWARD A WORLD FREE OF MS | SPRING • 2012

GATEWAY AREA CHAPTER

Fundraiser connects with community to raise thousands.

personal trainer connection changes life.

Chapter connects resources to make an impact.

Learn how we are making CONNECTIONS.pg. 3

pgs. 4-5

pg. 8

Walker connects online to boost fundraising.

Volunteer connects Chapter with people in long-term care community.

Researchers need to connect to people living with MS for study.

pg. 14

pg. 12

pg. 10

INSIDE THIS ISSuEA LETTER FROM THE pRESIDENT PHYLLIS RObSHAM

Connecting for the Cause PAGES 4-5

Taking Charge of MS PAGE 8

On the Hunt at Walk MS PAGE 12

Research MSPAGES 14-15

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!

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

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Publication of the National Multiple Sclerosis SocietyContact Us atNational MS Society, Gateway Area Chapter1867 Lackland Hill Parkway, St. Louis, MO 63146314-781-9020 or 1-800-344-4867www.gatewaymssociety.org MS Connection © 2012 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter.Chapter President • Phyllis RobshamEditor • 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.

P.S. You can show your connection to MS by signing up for your Missouri MS license plate. See page 6 to learn how.

w w w . g a t e w a y m s s o c i e t y . o r g 3

Research MSPAGES 14-15

LIVIN

G W

ITH M

S

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. Louis-based, 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, diagnosed with the disease more than 20 years ago, uses a power chair. Her mother had been helping her maneuver up and down the gravel driveway to their home. But Mom’s strength waned and she became unable to help, in effect trapping Felicia in the house. Her parish nurse, Debbie Slaughter, put together a video clip showing the problem, and alerted Katie MacLean, services manager at the Gateway Area Chapter of the National MS Society.

Then the village began to come

together. A small, Colorado-based 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 put together to make an impact on Felicia’s life.

“It was as if all the stars were in alignment,” said Katie, as the project came together and a new driveway, at a cost of about $5,000, was built at a slope that made it easy for Felicia to handle. “It’s the sort of thing we at the MS Society can do, working with people and various other organizations to make people living with MS more self-sufficient.”

“It made me free again,” Felicia said.

‘VILLAGE’ COMES TOGETHER TO MAkE IMpACT

“It made me free again,”

- Felicia Griffith

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.

parish nurse sends video showing the problem to Chapter social worker.

Felicia has trouble getting out of home due to gravel driveway.

Chapter helps pool together resources including family contributions .

Driveway is paved and re-graded.

Felicia regains her freedom.

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FUN

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ISIN

G

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.

“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

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

FuNDRAISING ExTRAVAGANzA CONNECTS COMMuNITY

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.

STORY CONTINUES ON NEXT PAGE

krista starts dodgeball fundraiser for her dad Tony.

Tony, inspired by daughter, starts own fundraiser in Olney.

Tony’s friends form committee to develop multi-event fundraising day.

Fundraiser connects with the community.

Annual event raises $20,000.


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.”

“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-knit group. I’m just a jack of all trades but a master of none.”

Seeing everything come together and much of

the town and surrounding communities come out to support her dad and people living with MS makes for quite a day for Krista.

“All day we’re all amped up and having a great time,” Krista said. “It’s exciting and emotional. It’s astounding, that’s for sure.”

FUN

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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.

Resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know.

People can find out what lessons others have learned

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.”

DO IT YOuRSELF FuNDRAISING GETS A BOOSTLOCAL DIY EVENTS

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.

STORY CONTINUED fROM PREVIOUS PAGE

Run4MSSaturday, April 7, 7:30 a.m. Kirkwood Community CenterMS 10k presented by Missouri Running CompanySaturday, June 30th, at 7amSt. Louis Community College-Meramec Schnucks ‘eScrip’ cardSign 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.

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THE STATE JuST puT YOu IN THE DRIVER’S SEAT

AD

VO

CACY

The Missouri General Assembly just approved the MS Awareness speciality license plate!

Help spread MS awareness and show others that you support the National MS Society by purchasing an MS Missouri license plate! Apply for your license plates now to help us reach our goal.

We’ve included some ideas for personalized specialty plates which cost more than the $40 for MS specialty plates.

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.

What You Can Do• We need 200 applicants to start production so apply for your

license plate today! • Tell your friends and family members • Go to gatewaymssociety.org g Advocate g MO License Plate

and fill out the application.

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svmylnmov4ms

Society advocates appeal for MS Awareness license plates.

plates approved by Missouri General Assembly.

YOu download application at gatewaymssociety.org g Advocate g MO License plate.

YOu return completed application and $40 to Gateway Area Chapter.

When we collect 200 paid applications we will submit to state and production begins.

Receive your new plates, the Chapter gets $25, and you raise awareness during your daily commute.

.

DON’T FORGET TO CHECk OFF FOR MS ON YOuR TAx FORMOn 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.

WELLN

ESS

.

Support amazing women affected by MS.

100 Carondelet PlazaRegistration - 11:30 a.m.

Program & Lunch - Promptly at Noon

$75 per personParking

Self parking is $3 per car in the South Parking Garage.Valet parking is available.

May 3, 2012The Ritz-Carlton, St. Louis

Special Guest Women of CourageCamerone 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.”

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.

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.

Ask from the Heart

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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.

“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

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.

“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.

So when Kelsey connected with the Chapter, she was able to continue her training.

“I love the way I feel for the first time in years,” Kelsey said.

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.”

TakInG ChaRGe OF YOuR BOdY, YOuR LIFe

kelsey albers, diagnosed at 25 years old, changed her life after connecting with a personal trainer kevin.

kelsey is diagnosed with MS at 25 and struck with fear.

kelsey struggles to maintain active lifestyle due to MS symptoms.

kelsey connects with personal trainer who develops program specifically for her and her MS.

personal trainer connects kelsey with the Chapter which can help with cost of sessions.

kelsey regains physical strength and confidence.

WEL

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pERSONAL TRAINER WORkSHOp

Multiple Sclerosis: Fitness & WellnessSaturday, March 24, 1-4:15 p.m.

Club Fitness6554 Manchester Road

St. Louis, MO 63139This 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.

April 22 columbiA, mo

mAy 19 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.

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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.

I live in the MS wing at at a long-term care facility in West St. Louis County called ‘The Heights’ where I serve as the unofficial liason between ‘The Heights’ residents and the Chapter. Some of my ‘duties’ include: emailing and calling the Chapter about residents’ concerns and questions, surveying the residents on preferences for parties, helping other residents with computer or cell phone problems, reminding residents about upcoming programs.

Once you are in the position of volunteering, you very well may need other people to assist you with a project, to be on a team with you, or to donate on your behalf. This is when your connections will become important and among your

contacts will be your family and close friends.

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.

Think big. Last year I invited President Obama to join me at Walk MS in Clayton. While he didn’t accept my invitation due to a scheduling conflict, I did receive a nice, polite call from a White House staffer. She informed me that President Obama wished me, my team and Walk MS all the best. This year I invited him again and extended it to first Lady Michelle Obama, but I sent the invitation EARLIER in the year.

In addition I invited my federal senators and representative, my Missouri representatives and senators, the mayors of Clayton, and Town and Country. I also contacted Mike bush, news anchor KSDK Channel 5, hoping to get a little additional coverage. I plan to try again, but send out the invitation earlier. And since I was a reference librarian at Saint Louis University before

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?

VO

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THROuGH THE EYES OF VOLuNTEERSCHESTER ‘CHET’ BuNNELL PROGRAMS VOLUNTEER

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.

people with MS live in same wing of a long-term care community called The Heights. Chet, a resident, volunteers to

serve as liason between The Heights and the Chapter.

Residents connect to programs and services offered by the Chapter.


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!

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-

changing experience to my family and friends. You feel such a connection and everyone is there with one common goal – to END MS.

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!

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.

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THROuGH THE EYES OF VOLuNTEERSLISA HOLLINS CHALLENGE WALK MS, bIKE MS, MUCKRUCKUS MS VOLUNTEER

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.

Lisa volunteers for Challenge Walk MS.

Lisa’s family joins her as volunteers.

Lisa’s brother rides in Bike MS.

Trainers at Lisa’s gym participate in MuckRuckus MS.

Lisa’s daughter, her fiancé and aunt participate in Challenge Walk MS.

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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

people across the country.Tim and the Mylein Hunters also raised a lot of money.

“Despite kicking off our plans to walk at the end of February, the team raised more than $13,000 with 100-plus donors,” Tim said. “How’d we do it? When I was diagnosed with MS, so were my family, friends, coworkers and others I came into contact with. Essentially all of my connections got it too.”

Tim sent out a series of emails explaining what living with MS means to him and his family and

the support came pouring in.

“The fact that they were willing to donate on my behalf really motivated me to do more and to be more active,” Tim said.

Through Tim’s connections with the Gateway Area Chapter he attended the Society’s National Conference in Dallas and got more connected to the mission.

“I experienced a wide range of emotions that were not really expected,” Tim said. “Right there, all around me was MS and it motivated me.”

WALkER REACHES OuT — RAISES THOuSANDS

DEV

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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.

Tim is diagnosed with MS.

Tim decides he wants to do something about MS and starts a Walk MS team, the Myelin Hunters.

Tim shares his story through email contacts.

The Myelin Hunters raise more than $13,000.

Denise, diagnosed in 1990

Walk MS: 2012Dollar by Dollar, Walk MS iS changing liveS.

Gateway AreaWalk 2012

regiSTer & STarT funDraiSing ToDay!

gatewaymswalk.org or 800-344-4867

Thank you To our SponSorS

preSenTing SponSor

T R U C KCENTER

04.21.12arnold, Mo Arnold City Park Noon

carbondale, il SIU Campus Boat Dock 1 p.m.

clayton, Mo Brown Shoe Company Noon

columbia, Mo Stephens Park Noon

04.21.12edwardsville, il Township Park Noon

eureka, Mo Kircher Park Noon

Millstadt, il Municipal Park Noon

St. peters, Mo St. Charles Community College Noon

04.21.12Troy, Mo Cuivre River State Park Noon

04.22.12cape girardeau, Mo Capaha Park 1 p.m.

Moberly, Mo Rothwell Park 1 p.m.

godfrey, il Glazebrook Park 11 a.m.

04.26.12Steppin’ out for MS night Walk Downtown St. Louis, MO 6 p.m.

05.12.12Jefferson city, Mo Memorial Park 11 a.m.

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Washington university Recruiting patients for New Therapy to Improve Vision after Optic NeuritisDr. Robert Naismith has an intense scientific interest in optic 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

we did not have therapies to improve their vision,” says Dr. Naismith.

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 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 optic nerve?”

Dr. Naismith wrote to the company that manufactures Ampyra, and Washington University was funded to do an investigator-initiated pilot study.

Dr. Naismith reports, “Acorda was interested in the premise of improving vision, and we both saw this as an opportunity to put

it to the test.”

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 cautions, “We still don’t know whether this will work. There is good scientific rationale to hope so, but we really need an answer to properly counsel patients and not expose people to a medicine which may not be appropriate. Because Ampyra is currently not indicated to improve vision, I am only recommending that it be used for this reason in a proper clinical trial.”

If you want to see if you qualify for the study, please contact Samantha Lancia, research

coordinator, at [email protected] 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.

MS researchers create a study.

people with MS volunteer to participate in the study.

progress in MS research is made.


RESEARCH

• 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. BG-12 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 CARE-MS II, involved 840 people with relapsing-remitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.

• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of participants in each group who experienced events defined as treatment failure. Teriflunomide is thought to prevent damage to the nervous system by immune cells. A previous phase III trial was more successful and three others are ongoing. The FDA is reviewing an application for marketing approval of teriflunomide.

To stay current on MS therapies in the pipeline for FDA approval, sign up for MS eNEWS at www.nationalMSsociety.org/signup.

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.

Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.

While 65% of those surveyed reported walking difficulties or trouble with balance, 40% “rarely or never” discussed the issues with their doctor.

“Clearly we need to encourage and empower people with MS to discuss walking impairment with their doctor, including newly diagnosed patients who may be experiencing only mild problems with walking or balance difficulties,” said Nicholas LaRocca, PhD, vice president for Health Care Delivery and Policy Research at the Society.

Susan Cohn-Child, diagnosed in 1995, walks with son zach.

SuRVEY SAYS WALkING ISSuES IMpORTANT TO ADDRESS

RESuLTS IN FOR pOTENTIAL MS THERApIES

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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 people-centric leadership of the organization, and the opportunity to help and serve the 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.

What do you hope to bring to the Chapter?I plan on contributing my expertise in fiscal management and oversight to improve the Chapter.

Why did you want to join the board?There’s nothing more rewarding than giving back and helping those in need, and being able to share that experience with others. In addition I wanted to be involved in a cause greater than myself.

What do you hope to accomplish with the 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.

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 MS in February of 1999. I also have friends 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. 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 by (Chapter President) Phyllis Robsham and (board member) Mike Houlihan, I was honored by the opportunity to become more involved. What do you hope to accomplish with the board?I hope to increase the awareness of MS in our community and ensure people and families who struggle with this disease have the support network they need to live fulfilling lives.

WHY DID YOu JOIN THE BOARD?

Anita KlopfensteinCommunity volunteer

John Merten Washington University

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2 The _______ program is designed to connect participants with someone who has MS to make the experience more meaningful.

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.

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.

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.

12 This is one method for New Connections, Peers, and especially TeleFriends to communicate with each other.

15 This program can begin a relationship with a trained individual with MS who truly understands the challenges faced when diagnosed with MS, all from the privacy of your home. Through this program you will be connected with someone with MS over the phone.

17 Besides the telephone, new Peer Connections Support Group people can also privately communicate using this internet communication service.

18 This muddy event has replaced what was known as “Mud Run.”

1 The name of a new on-line CONNECTIONS service where you can pick your own trained PEER and discuss is-sues about MS.

4 This event is the ral-lying point of the MS movement. There are 14 sites this spring.

6 This support group is for perfect for anyone who provides care to someone with MS; spouses, significant others, siblings, friends, parents and others.

8 More than 3,000 people participated in this last September and raised more than $2 million.

9 This event was replaced by the new event now called MuckRuckus.

11 This spring retreat takes place at Pere Marquette Lodge in Grafton.

13 Fundraisers that anyone can do them-selves. (hint see pg. 5)

14 This fall getaway takes place at Touch of Nature in Makanda, IL.

16 This connects people who have an interest in exercise programs through a monthly teleconference.

20 In most every National MS Society fundrais-ing event participants use these a lot. (Hint: you put socks on them both)

21 These groups are led by volunteers and meet throughout the Chapter (hint: see pgs. 24-25).

22 At the National MS Society Gateway Area on-line web site, this CALENDAR lists every event one can attend.

23 The National MS Soci-ety Gateway Area web site is found on what? (Hint: a computer with internet access)

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Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other.But what if we could defy this disease with the very thing it seeks to destroy: Connections?Would we share more knowledge? More questions? More answers? More hope?Maybe, by connecting enough small victories, we could win some really big ones.What if everyone living with MS could connect with one another? With those who care for someone living with MS? Or with those who research ways to stop, restore or end the disease? Or those who provide medical care or treat the symptoms of MS? Or the people who raise awareness and funds to help create a world free of MS?What if everyone who cares about MS could join together in one place?Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward.Connect With OthersStarting March 12th, you’ll be able to make meaningful connections - when, where and how you want - with easy access to the best content and resources the MS community can bring you. You’ll learn about the topics that are most important to you, connect with people you want to connect with, and have expert MS information and opinions right at your fingertips.

Share What You KnowFind, store and share meaningful updates, posts, videos, articles and other content about the topics you care about most. Connect with people, groups and discussions that relate to the topics that shape your world. Join conversations with others who share your experiences, challenges, and interests, and put the best resources available to work for you, so you can move your life forward in the way that feels right for you.

Starting March 12th the MS community will never be the same.

SHARE WHAT YOU KNOW: MSconnection.org.

SHARE WHAT YOu kNOW — MSCONNECTION.ORG

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Go to MSconnection.org.

Share what you know.

Connect with and learn from others.

CHALLENGE WALK MS

REGISTER TODAY

Walk 2012

3 DAYS. 50 MILES.

gatewayMSchallenge.org or 800 344 4867

facebook.com/gatewaymschallenge

JUNE 1-3, 2012ST. LOUIS, MO

extra mileGo the

to create a world free of MS

For your friends, for your family, for yourselfRegister Today!

NEW

S BRIEFS

CHALLENGE WALK MS

REGISTER TODAY

Walk 2012

3 DAYS. 50 MILES.

gatewayMSchallenge.org or 800 344 4867

facebook.com/gatewaymschallenge

JUNE 1-3, 2012ST. LOUIS, MO

extra mileGo the

to create a world free of MS

For your friends, for your family, for yourselfRegister Today!

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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.

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.

QUESTION: I’ve heard about the Chapter’s Care Management program but what is it and how can it help me?

person living with MS faces time of crisis and calls the Chapter.

Care Manager assesses situation and connects person to resources helping them through difficult time.

kerri Bowes and katie MacLean are the Chapter’s two full-time licensed social workers on staff.

Don’t just ride,Bike MS.

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 ///

2012

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Research MSMS specialists will provide up-to-date information on: •Research & new therapies for MS•New data on disease modifying medication for MS FREE PROGRAM INCLUDES BRUNCH

COLLInSvILLe, ILSaTuRdaY, MaRCh 2410:30 a.m. - 12:30 p.m. Collinsville Memorial Library408 West Main StreetCollinsville, ILGUEST SPEAKER:Dr. Robert NaismithAssistant Professor of NeurologyJohn L. Trotter MS CenterWashington University in St. Louis

CaRBOndaLe, ILSaTuRdaY, June 2310 a.m. - Noon Holiday Inn Hotel and Conference Center2300 Reed Station ParkwayCarbondale, IL 62901

Carepartner Family & Friends GroupThis 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 CenterMercy Center607 South New Ballas Rd. St. Louis, MO 63141First Tuesday of the month, 6:15 p.m.Next Meeting is March 6RSVP required. Contact Debra at the Chapter at 800-344-4867.Group is facilitated by Karen Tripp, Marriage & Family Counselor.

MSTogether (for couples)This couples social group provides an informal social opportunity to meet and talk. Events are organized by the couples themselves, including 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 [email protected].

Telephone GroupsThe 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.

Carole, diagnosed in 2005

Programs for Carepartners

MS Education LinkHear 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 63146Speaker: Mary-Kay Fink, MSN, RNTime: 10 a.m.RSVP: By March 2 by calling 800-973-0362

MaRCh 13 — ST. LOUIS, MOLocation: Rich and Charlie’s Restaurant 9942 Watson Road Crestwood, MO 63126Speaker: Florian Thomas, MD, MA, PhDTime: 6 p.m.RSVP: By March 12 by calling 800-973-0362

aPRIL 4 — ST. ChaRLES, MOLocation: Grappa Grill 1644 Country Club Plaza Drive Saint Charles, MO 63303Speaker: Mary-Kay Fink, MSN, RNTime: 6 p.m.RSVP: By April 3 by calling 800-973-0362

aPRIL 5 — ST. LOUIS, MOLocation: Bartolino’s South Restaurant 5914 South Lindbergh Ave. St. Louis, MO 63123Speaker: Heather Popham, NPTime: 6 p.m.RSVP: By April 4 by calling 800-973-0362

aPRIL 18 — COLLINSvILLE, ILLocation: Porter’s Steakhouse 1000 Eastport Plaza Drive Collinsville, IL 62234Speaker: Florian Thomas, MD, MA, PhDTime: 6 p.m.RSVP: By April 17 by calling 800-973-0362

aPRIL 27 — qUINCy, ILLocation: The Pier Restaurant 401 Bayview Drive Quincy, IL 62301Speaker: Heather Popham, NPTime: 5:30 p.m.RSVP: By April 26 by calling 800-973-0362

May 11 — CaPE gIRaRDEaU, MOLocation: Celebrations Restaurant 615 Bellevue Cape Girardeau, MO, 63701Speaker: Heather Popham, NPTime: 6:30 p.m.RSVP: By May 10 by calling 800-973-0362

May 15 — ST. LOUIS, MOLocation: Hacienda Restaurant 9748 Manchester Road St. Louis, MO, 63119Speaker: Heather Popham, NPTime: 6 p.m.RSVP: By May 14 by calling 800-973-0362

P A I D A D V E R T I S E M E N T

P A I D A D V E R T I S E M E N T

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Saturday, May 5, 10 a.m. - 2 p.m.Live at Frontenac hilton1335 South Lindbergh Blvd., St. Louis, MOCost: $10Via livestream to Cape Girardeau, MO; Carbondale, IL, Columbia, MO; Metro East, ILGo to www.gatewaymssociety.org for details on locations and registration.

Keynote Speaker: George Kraft, MD, MSDirector, Western Multiple Sclerosis Clinical CenterSeattle, WashingtonProfessor, Rehabilitation Medicine and Neurology, University of WashingtonDr. 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.

guest Speaker: Joanne Wagner, PT, PhDAssistant Professor, Department of Physical Therapy and Athletic Training, Doisy College of Health Sciences, Saint Louis University

Progressive MS Symposium

PROgRaM INCLUDES:• Lunch• Breakout session about the Affordable Care Act • Guest speaker at each program site

Take one weekend to relax and have fun with other couples living with or affected by MS.

april 28-29Pere Marquette Lodgegrafton, 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:

A limited number of fee waivers are available for the program and/or accessible transportation. For details, please call Debra at 314-446-4151.

For more information, questions, or to RSVP, contact the Chapter’s office at 1-800-344-4867. This program fills up quickly, so register early!

Mark your Calendar for Spring Rendezvous!

•Guest speakers on relationship building and effective communication

•Arts and Crafts

•Accessible Swimming

• Evening Entertainment

•Group for carepartners


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Town hall MeetingsWe are visiting communities across the Chapter’s service area to meet people affected by MS.

At these ‘town hall’ meetings you will:• learn about resources available to

you.•be able to provide feedback on

what you expect from the Chapter.•help us improve how we serve

people affected by MS.•get a free meal!

Kennett, MissouriMarch 13, 6-8 p.m.

First Christian Church105 W. Washington St.

Kennett, MO 63857

Marion, IllinoisMarch 18, 1-3 p.m.

Mackie’s Pizza 2704 Walton Way Marion, IL 62959

Cape Girardeau, MissouriMarch 17, 10 a.m. - Noon

St. Francis Health & Wellness Center Conf. Rm. 1

150 S. Mount Auburn Rd.Cape Girardeau, MO 63703

West Plains, MissouriJune 24, 1-3 p.m.

Ozark Medical Center1100 Kentucky Ave.

West Plains, MO 65775

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.

A three-course dinner will also be included with this free program. Space is limited so make your reservation today!

New Connections Meet & greetChapter staff will be attending to share information about programs, services and volunteer opportunities available to you.

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, MOgrappa grill Patio1644 Country Club PlazaSt. Charles, MO

Dinner provided

Columbia, MOMarch 15, 6 p.m.Speaker: Dr. Myles GobleGrand Cru Restaurant2600 S. Providence Rd. Columbia, MO 65203Registration Deadline: March 12

Mt. vernon, ILMay 23, 6 p.m.Mt. Vernon Airport - Banquet Room100 Aviation DriveMt. Vernon, IL 62864Registration Deadline: May 16

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Grant’s Farm Saturday, May 12, 6:30-9 p.m.10501 Gravois Road, St. Louis, MO 63123Time 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:

MS Nights at the BallparkMS 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.

Carlyle Lake, ILSaturday, June 9, 3-7 p.m.Olympic ShelterEldon Hazlet State Park 20100 Hazlet Park Rd.Carlyle, IL 62231www.corpslakes.us/carlyleFamily 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:

Family Evening in Columbia, MOSunday, June 10, 2012, 3-7 p.m.Stephens Lake ParkRiechmann Pavilion2300 E. Walnut, Columbia, MO Cost: FREEFamily 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:

Bowling Day in Cape Girardeau, MOSunday, June 24, 12:30-3 p.m.West Park Lanes Bowling alley354 S. Silver Springs Road, Cape girardeau, MOBring your family to an afternoon of bowling. Includes free registration, one hour of bowling, shoe rental and lunch.

Family Social Programs — There’s Something For you

•Arts and crafts area •Face painting •Barbeque

•Dessert potluck •Games and other outdoor activities

•Arts and crafts area•Face painting•Raffle prizes•Barbeque

•Dessert potluck•Games and other outdoor activities

Fee waivers are available for transportation to program.Registration deadline: June 6

• Photo with Clydesdales• Accessible tram tour of Deer Park-home to exotic animals from around the world!

•Meeting others living with MS•Arts and Crafts area•Live music•Food buffet and beverages

Early Bird Fee (before May 2): $10/adult, $5/childRegular Fee: $20/adult , $10/childRegistration deadline: May 9Fee waivers available for program and transportation.

MS Night at Southern Illinois MinersSaturday, June 2, 7:05 p.m.Southern Illinois Miners vs. SchaumburgRent One Park, 1000 Miners Dr., Marion, IL, 62959Cost: FREE (no meal option)


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Camp hopeThis 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

July 22-27Touch of Nature Environmental Center Southern Illinois University1206 Touch of Nature RoadMakanda, Illinois 62958 (near Carbondale)

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.

“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

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TALK MS GROUPS

MISSOURI

Camdenton 3rd wednesday 4:30 p.m.

Camden County library 99 rodeo road, Camdenton, mo 65020

Christy Bays, cell (573) 480-7932 [email protected]

Cape Girardeau 3rd saturday 10 a.m.

st. Francis Health & wellness Center Healing Arts Building, Conference room 150 s. Auburn, Cape Girardeau, mo 63703

sharon (573) 332-8148

Columbia 3rd wednesday 6 p.m.

rusk rehabilitation Center315 Business loop 70 westColumbia, mo 65203

rebecca dykhouse, lsw(573) [email protected]

Crystal City/Festus 2nd tuesday 1 p.m.

disability resource Association 420B s. truman Bl., Crystal City, mo 63019

marlene (636) 464-2533 sharon [email protected]

Jefferson City 1st monday 6 p.m.

Coca-Cola Bottling, meeting room605 washington, Jefferson City, mo 65109

rebekah walters (573) [email protected]

moberly2nd saturday 10:30 a.m.

little dixie regional libraries111 north 4th street, moberly, mo 65270

lynelle david (660) 833-3175

new london 2nd tuesday 7 p.m.

ralls County Health department Building405 w. 1st street, new london, mo 63459

debby (573) 267-3365 [email protected]

o’Fallon April 15, 2 p.m. Conference room A/B Barnes-Jewish Hospital, st. Peters, mo 63376 [email protected]

st. Charles 3rd sunday 3 p.m.

Hardee’s restaurant, 501 mid rivers mall dr., st. Peters, mo 63376 Jim (314) 602-4578

washington 3rd monday 6 p.m.

st. Peter’s united Church of Christ, 20 east 5th st., washington, mo 63090 Anne (636) 359-6037

west Plains 3rd wednesday 5 p.m.

ozark medical Ctr. shaw medical Bldg. 2nd Fl. 909 kentucky st., west Plains, mo 65775

Charline (417) 469-1068 sally (417) 469-4842

ST. LOUIS METRO

Affton 3rd wednesday 7 p.m.

weber road library 4444 weber rd, st. louis, mo 63123 linda (314) 544-5623

mid-st. louis County march 10, may 12 1:30 p.m.

mercy rehabilitation Hospital, 14561 north outer Hwy 40, st. louis, mo 63017 kevin (314) 841-3755

Generation optimistic for people in their 20s, 30s & 40s

1st saturday 10 a.m.

nmss office Gateway Area Chapter 1867 lackland Hill Pkwy, st. louis, mo 63146 michelle (636) 447-5407

west County Prayer & Health

April 25, may 30, June 276:30-8 p.m.

sachs library 16400 Burkhardt Place Chesterfield, mo 63017

rose [email protected]

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.

NEW GROUP!

NEW GROUP!

NEW GROUP!

NEW GROUP!


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ILLINOIS

Alton/river Bend 3rd tuesday 7-9 p.m.

the united Presbyterian Church, 2550 rock Hill rd., wood river, il 62095 lisa (618) 258-0615

Belleville/ o’Fallon 2nd sunday 2:30 p.m.

First united methodist Church 504 east Highway 50, o’Fallon, il 62269 Amy (618) 235-4226

Central illinois 4th monday 7 p.m.

richland memorial Hospital 800 east locust st., olney il 62450

tony (618) [email protected]

s’myelin Gang of litchfield 4th tuesday 6:30 p.m.

Christian Church of litchfield 131 yaeger lake trail, litchfield, il 62056 meredith (217) 556-4418

metro east April 25, 7 p.m.June 27, 7 p.m.

linC, inc. #1 emerald terrace, swansea, il 62226

diane (618) 235-8823 [email protected]

southern illinois 2nd monday 6 p.m.

Heartland regional-medical Center Classroom #1, 3333 west deyoung, marion, il 62959

robert (618) 983-0321

SPECIALIZED GROUPS

Couples Group varies, contact for information varies, contact for information [email protected]

Creative Art experience

3rd saturday10 a.m.

nmss office1867 lackland Hill Parkwayst. louis, mo 63146

[email protected]@juno.com

ms Fun, Friends & FoodPotluck

may 16 p.m.

david C. Pratt Cancer Center mercy Hospital607 s. new Ballas rd., st. louis, mo 63147

michelle (314) 251-6400debbie (636) [email protected]

veterans with ms 2nd wednesday 10 a.m.

veterans Admin. medical Center 1 Jefferson Barracks dr., st. louis, mo 63125

Penny (314) 652-4100 ext. 63274

CarePartner and Family Group

1st tuesday 6:15 p.m.

david C. Pratt Cancer Centermercy Hospital607 s. new Ballas rd., st. louis, mo 63147

debra (800) 344-4867 [email protected]

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ST. LOUIS aDDRESS CONTaCT aCTIvITIES OFFEREDAdiva Dance Center 943 South Kirkwood Road

Kirkwood, MO 63122Theresa314-822-7113

Bridgeton Community Center

4201 Fee Fee Road Bridgeton, MO 63044

Cole314-739-5599

Carondelet Park Rec Plex

930 Holly Hills AveSt. Louis MO 63111

Shannon 314-768-9622

Center of Clayton 50 Gay AvenueClayton , MO 63105

Diane314-353-4960

Chesterfield JCC 2 Millstone Campus Drive St. Louis, MO 63146

Sheena314-442-3495

Downtown YMCA 1528 Locust Street St. Louis, MO 63103

314-436-1177

Dragonfly Health Spa & Yoga

1272 A JungermannSt. Peters, MO 63376

636-598-5544

Edward Jones Family YMCA

12521 Marine Avenue St. Louis, MO 63146

314-439-9622

Emerson Family YMCA 3390 Pershall RoadSt. Louis, MO 63135

Georgia/Chris314-521-1822

Hazelwood Community Center

1186 Teson Road Hazelwood, MO 63042

Jill 314-731-0980

Jefferson College 1000 Viking DriveHillsboro, MO 63050

Christina 636-942-3000

Kirkwood Family YMCA 325 N. TaylorSt. Louis, MO 63122

314-965-9622

Marquette YMCA 314 North Broadway St. Louis, MO 63102

314-436-7070

Maryland Heights Centre

2344 McKelvey Road Maryland Heights, MO 63043

636-699-8508

THERAPEUTIC RECREATION SITES

Studies show exercise not only improves your overall health and well-being, but also helps manage 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.

STAY HEALTHY WITH MS

AqUATICS PILATES TAI CHI YOGA zUMBA


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THERAPEUTIC RECREATION SITESST. LOUIS CONT. aDDRESS CONTaCT aCTIvITIES OFFEREDMascoutah Senior Center

227 N. Market Mascoutah, IL 62258

618-566-8758

Mid-County YMCA 1900 Urban DriveSt. Louis, MO 63144

Sandi314-962-9450

Olivette Community Center

9723 Grandview Drive St. Louis, MO 63132

314-781-9020 800-344-4867

Mercy Medical Building

615 S. New Ballas Rd.,St. Louis, MO, 63141

Linda 314-729-0181

Show Me Aquatics 2085 Bluestone Drive St. Charles, MO 63303

Carolyn636-896-0999

South City Family YMCA

3150 Sublette AvenueSt. Louis, MO 63139

Rich314-644-3100

South County Family YMCA

12736 Southfork RoadSt. Louis, MO 63128

314-843-6703

St. Charles County YMCA

3456 Harry S. Truman Blvd. St. Charles, MO 63301

636-928-1928

The Cancer Support Community

1058 Old Des Peres RdSt. Louis, MO 63131

Kathryn 314-238-2000

The Lodge in Des Peres 1050 Des Peres Road St. Louis, MO 63131

314-221-8454

The Pointe at Ballwin Commons

1 Ballwin Commons Circle Ballwin, MO 63021

Leslie or Adam636-227-8950

Tri-County Family YMCA

1105 E South Service Rd Wentzville, MO 63385

636-332-5574

Riverchase 990 Horan Dr Fenton, MO 63026

Phyllis618-482-9140

Washington Four Rivers Family YMCA

400 Grand AvenueWashington, MO 63090

Ann 636-239-5704

Webster Groves Family YMCA

226 East Lockwood Avenue Webster Groves, MO 63119

314-962-9622

Wellbridge Athletic Club

7620 Forsyth BoulevardClayton , MO

Trudy C314-746-1500

Wellbridge Athletic Club

998 Woods Mill RoadTown & Country, MO 63131

Abby 636-207-3000

West County Family YMCA

16464 Burkhardt Pl Chesterfield, MO 63017

636-532-3100

Yoga Saint Louis 3305 Jamieson Ave. St. Louis, MO 63139

Bruce 314-645-9785

z Power Fitness 233 Lamp & Lantern Village Town & Country, MO 63017

Nancy314-221-8454


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MID-MISSOURI aDDRESS CONTaCT aCTIvITIES OFFEREDColumbia Activity and Rec. Center

1701 W. Ash StreetColumbia, MO

Janel573-874-7460

Elm Street Yoga 904 Elm St. Suite 210. Columbia, MO

Linda 573-441-8566

Jefferson City YMCA 424 Stadium Boulevard Jefferson City, MO 65101

Erica573-761-9021

Mexico Family YMCA 1127 Adams StreetMexico, MO 65265

Consuelo573-581-1540

Pilates of Columbia 11 N College Ave # 101 Columbia, MO 65201

Robin573-443-2062

ILLINOIS aDDRESS CONTaCT aCTIvITIES OFFEREDEdwardsville YMCA 1200 Esic Drive

Edwardsville, IL 62025Pam618-656-0436

Jerseyville Wellness Center

400 Maple Summit Rd Jerseyville, IL. 62052

Jennifer 618-498-3500

John A. Logan College 700 Logan College RoadCarterville, IL 62918

Chris 618-985-2828

Maryville YMCA 1 Town Center Drive Maryville, IL 62062

Julie618-346-5600

O’Fallon Community YMCA

284 North 7 Hills RoadO’Fallon, IL 62269

618-628-7701

One-O-One Yoga 101 S Graham Ave # 1 Carbondale, IL 62901

Sarah618-457-8186

Sukha Yoga Center 18 South High Street Belleville, IL 62220

Sarah618-236-9642

SOUThEaST MISSOURI

aDDRESS CONTaCT aCTIvITIES OFFERED

Black River Coliseum 301 South 5th Street Poplar Bluff, MO 63901

Mandi 573-686-8009

Cape Girardeau Municipal Pool

1920 Whitener Street Cape Girardeau, MO 63701

Pat573-335-4040

PARC Fitness Center 2620 N. Westwood Blvd.Poplar Bluff, MO 63901

Mindy 573-686-5985

Yoga at the Firm 2620 N. Westwood Blvd.Poplar Bluff, MO 63901

Vicki 417-293-1184

Xtreme Gymnastics Cheer and Dance

422 West Pine Street Poplar Bluff, MO 63901

Christi 573-785-3780

THERAPEUTIC RECREATION SITES



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Dial. Listen. Learn. 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. Upcoming topics include:March 22, 7-8 p.m. Fear of Falling: Common Exercise Mishaps

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.

Wellness Network

Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. The series topics from March through June are:Research: Where Are We Now? Where Are We Going?Speaker: Dr. Rana zabadDate/Time: March 12, 7-8 p.m.

Maximizing Your physical Therapy for Optimum Benefit Speaker: Dr. Deborah Silkwood-ShererDate/Time: April 9, 7-8 p.m.

Me, Myself and I: The art of Being Your Own CarepartnerSpeaker: Dr. Marcia Finlayson Date/Time: May 14, 7-8 p.m.

Give Yourself a Hand: Tools for Everyday Life Speaker: Merin Salsbury, PTDate/Time: June 11, 7-8 p.m.

Midwest Teleconference Series




Market Place AdRalli 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.

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DATE PROGRAM/EVENT PG. #

ST. LOUIS METRO

ILLINOIS SOUTHERN ILLINOIS

MID- MISSOURI

SE- MISSOURI

March 12 Teleconference 33

March 13 Town Hall Meeting 25 P

March 15 New Connections 25 P



March 22 Wellness Network 33March 24 Research MS 22 P

April 2 Carepartner Tele-chat 22April 9 Teleconference 33

April 26 Wellness Network 33April 28-29 Spring Rendezvous 24 P

May 5 Progressive MS Symposium 24 P

May 12 Family Evening at Grant’s Farm 26 P

May 14 Teleconference 33May 14 MS Night at Busch Stadium 26 P

May 17 Meet & Greet 25 P

May 23 New Connections 25 P

May 24 Wellness Network 33

June 2 Night at the Ballpark 26 P

June 9 Family Evening at Carlyle Lake 26 P

June 10 Family Evening at Columbia, MO 26 P

June 11 Teleconference 33

June 18 Carepartner Tele-Chat 22

June 23 Research MS 22 P

June 24 Town Hall Meeting 25 P

June 24 Family Evening at Cape Girardeau 26 P

June 28 Wellness Network 33

Chapter Calendar Available via telephone

Available via live-stream

Program located in this area. P

Chapter Open HousesDo 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!

First Thursday of every monthNoon and 6 p.m.1867 Lackland Hill Parkway, St. Louis, MO 63146RSVP at gatewaymssociety.org g Chapter Calendar, or call 800-344-4867.


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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. expressCard # ___________________________expiration date: ______________________

send to: National Multiple Sclerosis Society 1867 Lackland Hill ParkwaySt. 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.

[ ] 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

DATE PROGRAM/EVENT PG. #

ST. LOUIS METRO

ILLINOIS SOUTHERN ILLINOIS

MID- MISSOURI

SE- MISSOURI

March 12 Teleconference 33


March 15 New Connections 25 P



March 22 Wellness Network 33March 24 Research MS 22 P

April 2 Carepartner Tele-chat 22April 9 Teleconference 33

April 26 Wellness Network 33April 28-29 Spring Rendezvous 24 P

May 5 Progressive MS Symposium 24 P

May 12 Family Evening at Grant’s Farm 26 P

May 14 Teleconference 33May 14 MS Night at Busch Stadium 26 P

May 17 Meet & Greet 25 P

May 23 New Connections 25 P

May 24 Wellness Network 33

June 2 Night at the Ballpark 26 P

June 9 Family Evening at Carlyle Lake 26 P

June 10 Family Evening at Columbia, MO 26 P

June 11 Teleconference 33

June 18 Carepartner Tele-Chat 22

June 23 Research MS 22 P

June 24 Town Hall Meeting 25 P

June 24 Family Evening at Cape Girardeau 26 P

June 28 Wellness Network 33

NON-PROFITORGANIzATION

U.S. POSTAGEPAID

Permit No. 3914St. Louis, MO

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146

Gateway Area Chapter1867 Lackland Hill ParkwaySt. Louis, MO 63146


happeningsmaking the most of life and the least of MS

In this issueresearch ms . . . . . . . . . . . . . . . . . . . . 22CarePartner Programs . . . . . . . . . . . 22spring rendezvous . . . . . . . . . . . . . 24Progressive ms symposium . . . . . . . 24town Hall meetings . . . . . . . . . . . . . 25new Connections . . . . . . . . . . . . . . . 25meet & Greet . . . . . . . . . . . . . . . . . . . 25Family Programs . . . . . . . . . . . . . . . . 26Camp Hope . . . . . . . . . . . . . . . . . . . . . 27talk ms Groups . . . . . . . . . . . . . . .28-29therapeutic recreation. . . . . . . . .30-32wellness network . . . . . . . . . . . . . . . 33midwest teleconference series . . . . 33Chapter Calendar . . . . . . . . . . . . . . . . 34 registration Page . . . . . . . . . . . . . . . 35

Your Source for Knowledge, Wellness, and Support Spring 2012

This issue has discussed the importance of connections and how they help kill MS.

This spring and summer you can get connected in a variety of ways with the Chapter.

Get registered for one of our family social programs and meet other people living with MS in a relaxed, fun setting (pgs. 25-26).

Learn about the Chapter at a Town Hall Meeting (pg. 25) or try a Talk MS group meeting (pgs. 28-29).

You can also connect to the Chapter by telephone through the Wellness Network or the Midwest Teleconference Series (pg. 33).

United Wayof Greater St. Louis

Documents

MS Connection - Spring Edition 2012