spring 2016 ms connection · for approval of ocrelizumab to treat primary-progressive ms, the...

spring 2016 gateway area chapter

Ms connection Magazine

insiDe this issUe

4neUrologist to chair walk Ms

6priMary progressive therapy coUlD be on its way

8-9st. loUis blUes antheM singer lenDs voice to Ms MoveMent

12-13woMen on Move speaker wants to connect

We’re stronger

togetHer.WALK Ms.

Gina (center), diaGnosed in 2010

Latiah (r), diaGnosed in 2014

BiLL, diaGnosed in 2010

HaYleY (l), diagnosed in 2015; lYnne (R), diagnosed in

2008

2 Ms connection: spring 2016

Dear Friend,

There’s strength in numbers.

It’s a saying that’s as true today as ever – especially for those affected by multiple sclerosis. Having just one person to talk to, to lean on, to know what MS is, makes a difference. So imagine what having an entire community of support feels like.

That’s what Walk MS is all about.

Whether you’re someone who has been diagnosed or someone who cares about a family member, friend or neighbor with the disease, Walk MS is for you. Walk MS is for Dr. Barry Singer, our new Walk MS chair (Pg. 4) and firefighter Doug Raines who is leading a team and the effort at our St. Charles Walk inspired by a fellow firefighter (Pg. 5). It’s connecting to others who know what living with MS can be like. It’s inspiration found among the faces you’ll see and the latest research and treatments you’ll learn about. It’s a community fundraiser ensuring research continues and services are available.

I invite you to participate in Walk MS. And, if you’re among those who have been diagnosed, I invite you to be part of the “I Live with MS” program. You’ll receive a special T-shirt and other recognition so you can inspire others.

By registering today, you’ll join a nationwide network of 330,000 Walk MS participants who want to raise $48 million in 2016 to fund services and research specifically for people with MS. You’ll be doing something about this disease, one that more than 7,500 people in our area live with.

Together, we become a powerful force. I hope you’ll be part of it.

P.S. Signing up is easy. Go to gatewaywalkms.org or call 800-344-4864 to register, then invite others to join you.

INSIDE THIS ISSUE

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 | 1-800-344-4867 | gatewaymssociety.org MS Connection © 2014 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter.Writers • Joe Cavato • Meghan Freeman • 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.

letter froM the presiDent

rebecca fehlig chapter presiDent

We’re strongertogetHer.

Neurologist Chairs Walk MS .... 4

Firefighter leads Walk MS ......... 5

Research ................................. 6-7

Singer Lends Voice to MS ......8-9

Advocacy ................................. 10

Everyday Matters ......................11

Next Big Step Program .............11

Women on the Move .......... 12-13

Can Do Webinars ................... 13

Talk MS Groups..................14-15

Marketplace Ads ..................... 16

Therapeutic Recreation ........ 17-19

2016 Event Dates .................... 20

https://secure.nationalmssociety.org/site/SPageServer?pagename=WLK_MOS_Landing_Page

3gatewayMssociety.org | 1-800-344-4867

Date and Time:04/25/2016at 6:30 PMSpeaker:Mark Tullman, MDMedical Director, The MS Centerfor Innovations in Care at the Missouri Baptist Medical Center

Location:Donatelli's Bistro8653 State Highway North Lake Saint Louis, MO 63367

Event Code: TR349125 (1298032)

annUal Meeting conference call March 28 To All Chapter Members: Annual Meeting Conference Call: Hear Chapter President Rebecca Fehlig and members of the Board of Trustees discuss progress we’ve made and what’s in store for the future! People affected by MS and their loved ones are invited to dial in for the Gateway Area Chapter’s Annual Meeting on Monday, March 28, 2016, from noon to 12:30 p.m. CST. No RSVP necessary. To attend, call 888-279-3775, pass code 2701# and mute your phone if possible until a vote is called.

april 16 southern illinois siU-carbondale april 16 st. charles county Ft. Zumwalt east hs april 17 southeast Missouri seMo rec center april 17 Forest Park Upper Muny Lot april 23 Mid-Missouri ashland city Park april 23 Millstadt Millstadt city Park april 24 edwardsville township Park april 30 east central Missouri east central college May 14 illinois riverbend Glazebrook Park august 20 o’Fallon, iL community Park

WALK Msgatewaywalkms.org


The Gateway Area Chapter of the National Multiple Sclerosis Society is excited to announce that Dr. Barry Singer will serve as the Walk MS: St. Louis Chair in 2016. Dr. Singer, a native of St. Louis, is the director of The MS Center for Innovations in Care at Missouri Baptist Medical Center.

“Dr. Singer is one of the leading researchers in MS and has been a tremendous partner in the movement to create a world free of MS,” said Rebecca Fehlig, Gateway Area Chapter President. “We are excited to have Dr. Singer join us at Walk MS which is the rallying point for those affected by MS.”

More than 4,000 people are expected to raise more than $480,000 to stop MS in its tracks, restore what has been lost and end MS forever at various Walk MS sites throughout the region in April and May. Walk MS is an opportunity for people living with MS and those who care about them to connect, join together, be inspired and raise critical funds for the National Multiple Sclerosis Society.

“I am thrilled to partner with the National MS Society as chair for Walk MS,” Dr. Singer said. “Walk MS is a day when people living with MS can really feel the support from their community and I can’t wait to be part of it.”

Walk MS is where friends, loved ones and co-workers team up to change the world for everyone affected by MS.

walk Ms

neUrologist to chair walk Ms

Dr. barry singer new walk Ms chair Director the Ms center for innovations in care MissoUri baptist

Ms wellness village retUrns to walk Ms in 2016 Walk MS connects people living with MS and those who care about them. It is a day when we come together to show the power of our connections. We have invited our health and wellness partners for you to meet at Walk MS and they will be located in the MS Wellness Village! What you can expect and who you will meet…

**Visit each vendor at the MS Wellness Village and enter into a drawing to win Cardinal tickets for accessible seating in “catch a foul ball territory” ***Receive a Wellness and Living Your Best Life with MS Resource Guide --- free while supplies last

• Warm up exercise before start time• Occupational and physical

therapists from your community rehab centers

• Local Talk MS group leaders• Medical equipment companies• Accessible van demonstration• Wellness professionals

• Information on disease modifying drugs from pharmaceutical company representatives

• And more…

Forest Park Upper Muny Lot sunday, april 17

St. Louis Walk MSJoin Team MoBap!

join teaM MoBaP at httP://Bit.Ly/teaMMoBaP

1-800-344-4867

http://bit.ly/teammobap


Being a firefighter is certainly more than just a job.

“I belong to a brotherhood like no other being a firefighter,” said Doug Raines of Central County Fire and Rescue in St. Peters.

So when one of his fellow firefighters Nick Leone was diagnosed with MS in 2012, Raines knew he had to do something. So he organized a 24-hour walk event that raised $26,000.

“I felt like we really needed to educate ourselves about MS and really bring attention to this disease so we can get him back on the truck,” Raines said. “We wanted to get him back so he can do the job that he wants to do, that his father did and that I enjoy doing as well.”

Later in 2012 Raines attended the Society’s national conference in Dallas.

“It was overwhelming to me to see how everyone involved in the MS Society worked together and how supportive a group it is,” he said. “I was amazed and I felt a strong bond with the Society. It really made feel like I was part of this group and it was such a great cause and that we are really going to make a difference for these people and it just struck me.”

That’s why Raines is doing more than just serving as a team captain for Team Leone at the Walk MS in St. Charles this spring. He’s working to grow the event.

“I’m really looking forward to it being an event where people come out, hang out and stay and bring attention to the disease,” he

said. “Hopefully we can build on this year and raise tons of awareness and money to fight this disease.”

Through his contacts Raines has gotten shirts donated for his team, a company to donate hot dogs to give away, brats to sell, and a variety of things to sell, auction or raffle off including items from the St. Louis Cardinals and Blues, hand-made scarves and a painting.

“We are really just trying to get as many opportunities as we can to draw more people, have more fun and raise more money,” he said. “We’re just trying to bring everybody out to give them an event besides the walk.”

Of course, Raines and his fellow firefighters are also looking to make their mark as a team.

“We contacted everyone who works here and we had one person step up and say if everyone else made an additional $100 on their own, he’d fill out the final $1,500 to get us to $10,000 from our department,” said Raines who said. “It would be great to get back to that $26,000 mark.”

Leone always knows that Raines and his fellow fighters have his back.

“MS doesn’t discriminate. Nick is an ox and one of the strongest guys I know,” Raines said. “MS has forced him to using a cane. It’s tough for him. We have supported him from Day 1. What insurance doesn’t cover we cover. Nick always says ‘I can’t thank you enough and I don’t know what I’d do without you guys.’ So now it’s great to do things for other people living with MS.”

walk Ms

feeDing the flaMes for walk Ms


Genentech, a member of the Roche Group, has announced that the experimental therapy ocrelizumab has been granted “Breakthrough Therapy designation” by the U.S. Food and Drug Administration (FDA) for the treatment of people with primary-progressive MS. This designation means that once Genentech files for approval of ocrelizumab to treat primary-progressive MS, the review process can be expedited. According to a February 16 press release, Genentech plans to pursue marketing approval for both primary-progressive MS and relapsing multiple sclerosis, and will submit data from three phase III studies to the FDA in the first half of 2016.

“We are encouraged by this news and look forward to following the FDA’s actions regarding ocrelizumab,” says Timothy Coetzee, PhD, Chief Advocacy, Services and Research Officer at the National MS Society. “People with progressive MS need solutions and we are hopeful that this is the first of many treatments that will be developed for this form of MS.”

Breakthrough Therapy designation can expedite the development and review of therapies intended to treat a serious condition

when clinical evidence indicates that the treatment may demonstrate substantial improvement over available therapy. The designation was granted to ocrelizumab based on phase III trial results presented at the European Committee for Treatment and Research in MS in 2015. Compared to placebo, ocrelizumab significantly reduced the risk of progression of clinical disability by 24% in 732 people with primary-progressive MS.

Ocrelizumab is a monoclonal antibody that binds to a molecule (CD20) on the surface of immune cells called B cells, and depletes them from circulation. B cells have several functions including making antibodies, and they may play a role in immune-system mediated damage to brain and spinal cord tissues in MS. Ocrelizumab is administered by intravenous infusion every 6 months. There currently are no FDA-approved disease-modifying therapies to treat primary progressive MS, which is characterized by steady worsening of neurologic function, without any distinct relapses or attacks, or periods of remission.

research

ocrelizUMab granteD ‘breakthroUgh therapy Designation’ for priMary-progressive Ms by fDa


what is a breakthroUgh therapy Designation? The Food and Drug Administration has developed four approaches to making treatments available as rapidly as possible when treatments are the first available treatment or if the therapy has advantages over existing treatments. Read more about these on the FDA website. Breakthrough Therapy designation can expedite the development and review of therapies intended to treat a serious condition when clinical evidence indicates that the treatment may demonstrate substantial improvement over available therapy. This designation makes the treatment eligible for all Fast Track designations, intensive guidance on an efficient drug development program, and organizational commitment involving senior managers. It does not make the treatment automatically eligible for priority review, which means FDA’s goal is to take action on an application within 6 months (compared to 10 months under standard review).

is ocrelizUMab approveD? No, this means that once Genentech files with the FDA for approval of ocrelizumab to treat primary-progressive MS, the review process can be expedited. According to a February 16 press release, Genentech plans to pursue marketing approval for both primary-progressive MS and relapsing multiple sclerosis, and will submit data from three phase III studies to the FDA in the first half of 2016.

will it be approveD to treat for seconDary-progressive Ms? At this point, Genentech plans to pursue marketing approval for both primary-progressive MS and relapsing multiple sclerosis. Relapsing MS includes people with secondary-progressive MS who are experiencing relapses.

Ocrelizumab reduced relapse rates by 46% to 47% after two years compared to the established MS treatment, Rebif® (interferon beta-1a, EMD Serono) in two phase III studies in people with relapsing MS. Ocrelizumab has not been studied so far in people with secondary-progressive MS who are not experiencing relapses. Breakthrough designation only applies to primary-progressive MS.

when will ocrelizUMab becoMe available? It is not possible to say if or when ocrelizumab may become available. The company has stated plans for applying for regulatory approval of ocrelizumab in the first half of 2016.

Even with an expedited review, the timeline for successful marketing approval depends on many variables, such as whether the application is accepted by the FDA or whether the agency requests additional information before the application is deemed complete. Then the FDA needs time to evaluate the results and make a decision about whether the therapy can be marketed.


Charles Glenn’s first on-stage performance came when he was just 4 years old and he’s been doing it ever since. In the St. Louis area he’s known for his rousing renditions of the National Anthem at St. Louis Blues games, on the jazz circuit, and at weddings.

About 7 years ago he noticed something wasn’t quite right when he took his daughter to the doctor’s office. He had a strange sensation in his leg. After an extensive physical examination with his primary physician, his doctor sent him to a neurologist.

The diagnosis came back as multiple sclerosis.

“I didn’t know what MS was,” Glenn said. “I wasn’t shocked. We all have to carry a cross. I just have to know what to do to deal with it. We got home and prayed and called some family members. We did some research and found out that more people had it than we thought.”

Glenn went on a medication but every Monday it knocked him out and gave him flu-like symptoms. So Glenn made adjustments with his busy schedule.

“I called all the people I do business with and said on Mondays I do not do business,” Glenn said. He switched medications and is doing much better now. “I don’t have the side effects so I can go on with my life.”

But Glenn made several changes to his life so he can maintain his entertainment schedule which includes a lot of traveling.

“I don’t know how long I’m going to go before it progresses any more,” Glenn said. “It could go for years it could go for months, I don’t know. That’s God’s call. So I try to get as much done as I possibly can. I have to schedule a lot of rest and I’m trying to take better care of myself. I rest before and after a performance. I get fatigued and when that comes I just chill. Sometimes it’ll come in the middle of a performance and you just have to fight through it and know when it’s over with, whatever you have planned for the next day you have to chill.”

Something that Glenn has added to his schedule since being diagnosed with MS is making trips to the gym.

“When I didn’t have any disease the gym and I had nothing in common,” Glenn said. “Now I try to go as much as I possibly can and it shows what you are capable of doing and what inner

living with Ms

st. loUis blUes national antheM singer lenDs his voice to Ms

st. loUis blUes national antheM singer charles glenn has liveD with Ms for 7 years anD has Done several concerts to raise awareness anD fUnDs for Ms.


strength you have.”

Glenn, who sometimes uses a cane for balance when walking and on stage, decided to make his diagnosis public about 4 years ago when he was a contestant on a national NBC show called The Winner Is.

“I didn’t think I should hide anything,” Glenn said. “Before I was diagnosed I would walk up the steps and have trouble and someone would say you should get that checked out and I’d reply it just comes with age. Letting people know that I have MS has done more positive than negative. Yes I have to carry this but if you carry it with pride and a smile on your face like I can fight this, I can do this.”

Glenn has also lent his talents to raising money and awareness of MS at events like St. Louis Voices and MS Evening of Hope. He says performing at an MS event is much different than a typical one.

“A lot of the pressure is off you when you are doing a benefit for the MS Society because you feel like you are amongst family,” he said. “There are people with the same disease there supporting you and you don’t have to feel like you have to impress as much you can be

yourself.”

Glenn was particularly touched at last year’s Evening of Hope.

“That was really nice because everyone comes out and supports each other, there is really good food and there are great speeches and testimonies,” he said. “My wife and I performed at it last year for the first time and people were coming up by the droves giving their testimonies and it was beautiful. Some of the stories were absolutely funny and some were gut wrenching.”

In March, Glenn will be performing a new, more intimate performance where he will be doing a cabaret style show at the Gaslight Theater on March 10 called The Mirror has Many Faces.

“To many people I’m a wedding singer or a national anthem singer but they don’t know about my musical influences or what makes me tick,” Glenn said. “The title The Mirror has Many Faces covers a lot of musical styles that have influenced me: jazz, Broadway, classic rock, gospel. It will just be me a pianist, bass and I’m going to talk about having MS, how it affects me and why I won’t quit. You always have to find a positive within a negative and that’ll keep you going twice as long.”

tax tiMe reMinDers Don’t forget! You can help end MS forever by donating to the National MS Society through the Multiple Sclerosis Fund on the Missouri State Income Tax Form. This tax check-off program allows taxpayers to designate a $1-$200 donation. Money contributed will be subtracted from any income tax refund owed to the individual by the state or would be added to the income tax the individual owes the state.

If you made any accessibility modifications (such as installing ramps or grab bars) to your home this year, you might also be eligible for the Home Access Tax Credit. For Missourians with incomes up to $30,000, the tax credit pays 100% of the cost of home modifications, up to $2,500. For Missourians with incomes between $30,000 and $60,000 the credit covers 50% of modification costs, up to $2,500. For more information, visit dor.mo.gov.


aDvocacy

MissoUri activists staying bUsyThe Missouri 2016 state legislative session is underway. MS Activists states are busy advocating for policies that will have a positive impact for people living with MS.

Members of the Missouri Government Relations Committee have been engaged on a number of issues this session. Below is a list of the bills for which MS activists have provided proponent testimony in legislative committees.

HB 2029 would require step therapy patient protections in Missouri private insurance plans.

Step therapy protocols require that patients must try at least one medication selected by their insurer before the plan will grant coverage for the drug originally prescribed by the healthcare provider. Through this method, insurers often require a patient to try a lower-cost drug or service, before they will cover a more expensive option. NMSS strongly supports the inclusion of patient protection amendments in insurance plans sold in Missouri.

HB 2029 requires the following:

• Step therapy protocols be based upon clinical or peer reviewed data.

• Patients be exempt from step therapy if in best interests of patient, patient is stable on a medication or patient has tried and failed on the medication on the current or previous insurance plan.

• Physicians and patients be made aware of and have access to a clearly written appeal process.

HB 1552 would require the Missouri Department of Insurance to create a standardized prior authorization form to be utilized by insurers and healthcare providers in Missouri. The use of a standardized form would streamline currently complicated and administratively cumbersome prior authorization processes. Prior authorization protocols require that patients receive insurance approval before they can start on the disease modifying therapy selected by their healthcare provider before the plan will grant coverage for the drug. Prior authorization processes can result in delays or disruptions in treatment as patients wait for their health plan to determine whether they will cover needed care. If coverage is then denied, additional delays may occur if the provider and patient have to go through an appeals process. Finally, the appeals process, including the steps required to file a dispute, may take additional days or weeks to process.

SCR 43 would form a committee to identify accessibility issues and propose fixes to barriers that people with disabilities currently face within the Capitol building. The accessibility of the environment can be a major factor in determining how active and engaged they are able to be. This is particularly true for members of our MS Activist network, who consider advocacy at the State Capitol as a way to remain empowered over an unpredictable chronic disease. MS Activists educate public officials and drive change on federal, state and local policy impacting the MS community. It is important that MS Activists in Missouri have equal access to their Capitol in Jefferson City and their elected officials.


Put positive psychology to work in your life! Increase your knowledge of the principle of positive psychology and gain an understanding of how these principles can be used as a strategy for living well with MS.

§ Advance registration required. Space is limited, register early

§ Increase knowledge of principles of positive psychology

§ Identify a challenge you would like to address, along with the positive psychology strategy(ies) you want to employ to develop and action plan.

§ Participate in an interactive learning experience, deepening the classroom experience through sharing and connecting with others.

§ Increase confidence in developing a personal approach to addressing challenges.

§ Identify additional community resources for support and connection

§ Register at www.nationalMSsociety.org or 1-800-344-4867

The Starkloff Disability Institute’s major program – the Next Big Step (NBS) – empowers individuals with disabilities to secure competitive jobs with corporations. It connects with businesses that are interested in hiring QUALIFIED people with disabilities (Centene, Nestlé Purina, Enterprise Holdings, St. Louis University, Ameren and more). If you have a college degree, technical degree or the equivalent, or are a current student with a career goal of competitive employment, and/or have computer, writing and customer service skills you are qualified! In order to be competitive in the job acquisition process, you have to: • Put recruiters at ease• Be comfortable selling yourself• Write compelling resumes• Be ready for the hard questions• Practice being interviewed

• Know when and how you are going to discuss your disability

• Show how you would be an asset on the job and• Network, network, network NBS assists qualified people with disabilities to do all of those things through an intense training which has maintained an 80% success rate consistently for three years. This is a power packed program which offers instruction, role-play and critiques of your performance from top HR executives blended with insights of renowned disability rights leaders. For more information contact Tina Vinson (314 588 7090) or an email the Next Big Step ([email protected]).

living with Ms

next big step is eMpowering

LIVING YOUR BEST LIFE WITH MSFIVe WedNeSdAYS —

4/6, 4/13, 4/20, 4/27, 5/4, 5/11

Facilitated by: John Michalka, PLPCCost: $10 Time: 6 to 8 p.m.Location: Memorial Center for Learning and Innovation 228 West Miller Street Springfield, IL 62702

Register at 1-800-344-4867 or www.nationalMSsociety.org


Before she was diagnosed with MS, Kate Milliken lived a non-stop lifestyle in the middle of Manhattan.

“I was biking 30 miles before breakfast, spending all day working on my business, and I was spending the nights going out on dates and staying out pretty late,” she said.

Then all of a sudden in 2006, her body wasn’t keeping up with her brain.

“My brain was telling me to go left-right-left and it wasn’t working out that way,” she said. “I couldn’t keep my balance and had extreme fatigue.”

Within 5 days she was diagnosed with MS.

“It was certainly a real moment of coming to a standstill and having to re-evaluate the way I was treating myself and pushing myself,” Milliken said. “My biggest lesson with MS with changing my behavior was starting to taking care of myself and not pushing as hard.”

When Milliken was forced to slow her pace a bit and even take time for a nap here and there, something unthinkable of her before her diagnosis, things in her life seemed to fall in place.

“Before I was working like crazy to get a job for my business and I was trying to find Mr. Right,” she said. “After I got MS I got more

work than I had ever gotten and I found my husband. I just think you end up being more thoughtful about every step you take, literally and metaphorically. ”

Milliken didn’t know anything about MS so she went online where she learned all about the disease and treatments, but there was something she couldn’t find.

“I figured out what MS was in less than an hour but then I really wanted to know what my life was like living with MS and that was a lot harder to find on the internet,” Milliken said. “That has been a problem I’ve been working on solving for the last 3 years.”

A video producer by trade who makes testimonial videos, Milliken decided to put her own story out there. So a couple of

Thursday, April 28The Ritz-Carlton 100 Carondelet Plaza St. Louis, MO11 a.m.$75/person

Keynote Speaker Kate Milliken

Woman of Courage Rainey Fahey

living with Ms

getting DiagnoseD for a reason


years after she was diagnosed, she created katescounterpane.com.

“It’s 32 little films about my first year of living with MS,” she said. “I was really frustrated that I couldn’t find a moment that I could relate to emotionally online that would give me a sense of perspective and hope and support so that’s what I wanted to create.”

After the success of katescounterpane.com, she created mycounterpane.com which is an online journaling tool where people can share their stories of living with MS and learn from others.

“It’s a really hard thing to deal with and there are some serious negatives but in the journey of MS for everybody there are amazing positives,” she said. “What I like to talk about is the whole idea of personal storytelling and the whole idea of celebrating people living with MS and their personal story. We say we heal others through the story of them. We have some incredible stories of people who have transcended themselves through admitting here’s what I’ve been through and connecting with other people who need help.”

With her diagnosis of MS and a background in video production and storytelling, Milliken found a positive to her diagnosis.

“It was kind of a cosmic moment. As a result of my diagnosis I rolled into a glaring problem that really exists,” Milliken said. “There are a lot of people with MS who believe they got MS for a reason and I guess I feel that way.”

WEBINAR & TELELEARNING SERIES

BROOKE, DIAGNOSED IN 2009WILLIAM (LEfT), DIAGNOSED IN 2002SUSAN, DIAGNOSED IN 1988

Building Your Wellness StrategiesThe 2016 Webinar & Telelearning Series brings together a collaboration of MS experts to help you build strategies to live your best life with MS.

Each free webinar and telelearning program features two presenters with time for Q&A. Join us online or by phone on topics including:

Schedule: 2nd Tuesday of the month from 7-8:15 p.m. *Additional employment topics scheduled for March 15 and 29. Topic and dates are subject to change.

Register at mscando.org/webinar or 1-800-367-3101.

March 8Making Treatment Decisions

April 12Research Updates

May 10Stress Management and Relaxation

June 14Traveling with MS

this program is possible thanks to the generous support of and eMd serono.


MISSOURICape Girardeau

3rd Saturday 10 a.m.

St. Francis Health & Wellness Center, Rm. 1 150 S. Auburn, Cape Girardeau, MO 63703

Sharon (573) 332-8148

Columbia 3rd Wednesday 6-8 p.m.

Rusk Rehabilitation Center315 Business Loop 70 WestColumbia, MO 65203

Kim Williams, [email protected] Gretchen Roberts, [email protected]

Crystal City/Festus

2nd Tuesday 1 p.m.

Disability Resource Association 420B S. Truman Bl., Crystal City, MO 63019

If you are interested in this group contact Katie MacLean at 314-446-4196 or [email protected].

Jefferson City3rd Monday 6 p.m., Restarting Sept. 15

Coca-Cola Bottling, Meeting Room605 Washington, Jefferson City, MO 65109 Vickie [email protected]

Kirksville1st WednesdayEvery odd month, 6 p.m.

Annex Building300 N. FranklinKirksville, MO 63501

Renee 660-341-9999 or [email protected]

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]

Rolla Last Thursday 6:30 p.m.

Rolla Presbyterian Manor1200 Homelife PlazaRolla, MO 65401

Donna at (573) 263-4896 or [email protected] Michelle at (573) 465-0453 or [email protected]

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 4:30 p.m.

Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. 909 Kentucky St., West Plains, MO 65775

Sally (417) 469-4842EZ Niles (417) 256-1798 or [email protected]

ST. LOUIS METRO

Affton 3rd Thursday 6-7:30 p.m.

St. Louis County Library4444 Weber Rd, St. Louis, MO 63123 Judy Sauer (314) 941-5051

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

Kids Group 1st Saturday 10 a.m.

NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146 Joel [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.talk Ms groUps

mailto:[email protected]







ILLINOISBelleville/ 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]

Herrin 3rd Saturday 1-3 p.m.

First Baptist ChurchRoyalton, IL709 West 3rd Street South Royalton, IL 62983

Donna Fisher (618) 751-0638

Highland1st & 3rd Wednesday 10:30 a.m.

Weinheimer Community Center1100 Main StreetHighland, IL 62249

Bonnie (618) 344-2207 Linda (618) 654-4970

Jerseyville 2nd Tuesday 6-8 p.m.

1st Presbyterian Church of Jerseyville 400 S. State St., Jerseyville, IL

[email protected]

S’myelin Gang of Litchfield

4th Tuesday 6:30 p.m.

Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056

Ruth (217) [email protected]

Metro East

4th Wednesday of even numbered months, 7 p.m.

LINC, Inc. #15 Emerald Terrace, Swansea, IL 62226

Diane (618) 235-8823 [email protected]

SPECIALIZED GROUPS

Creative Art Experience

3rd Saturday10 a.m.

NMSS Office1867 Lackland Hill ParkwaySt. Louis, MO 63146

Sharon at 314-623-8528 or [email protected]

MS Fun, Friends & Food

1st Tuesday in Feb., May, Aug. & Nov.6 p.m.

David C. Pratt Cancer Center Mercy Hospital 607 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

Lynn Seymour, DPT [email protected] or 314-652-4100 ext. 64037

talk Ms groUps









Marketplace aDsSCooTeRS & WHeeLCHAIRS Invacare electric Wheelchair with hands-free operation via a head array. $500.Direction controlled by electric eye above the headrest. Chair also has tilt feature. Front joystick control. Contact: John Williams, 314-368-8159 (cell) or 573-764-4366 (home).

Quickie Pulse 6 – Hands Free Operation, tilt feature, rear attendant controls.$1,250. Equipment which comes with the Chair – Charger, control antennae, cushion pump, Allen wrenches for head array adjustment, extra foot rest adjusting bar. Contact: John Williams 314-368-8159 (cell) 573-764-4366 (home)

Lite Rider PTC Scooter (Blue) - $1,110 Golden Technologies - Model GP162. Only used for 1 month in house before my husband passed; breaks down to four pieces, so no need for ramp to transport: have instruction book too. Retails for $1,400. Contact Penny at 636-544-0536 or [email protected]

Bed ANd LIFT CHAIRS etac 78548A Clean Shower Chair - $540. 2 months old. Shower chair, bedside commode and fits over toilet seat; 4 wheels all lock. Only used once for a shower before my husband passed. Contact Penny at 636-544-0536 or [email protected]

Invacare 9805 Hydrolic Lift - $500 2 months old. Hoyer Lift with pad. Contact Penny at 636-544-0536 or [email protected]

MISCeLLANeoUS SAJe Technologies hands-free easyBlue Plantronics headset. $125. Control your smart phone with a micro-light switch. Contact: John Williams, 314-368-8159 (cell) or 573-764-4366 (home).

Free Standing Tripod - $70. 2 months old. Fits under bed. Contact Penny at 636-544-0536 or [email protected].

Wheelchair Pad - Transfer Board - Gate Belt - $10/each. 2 months old. Contact Penny at 636-544-0536 or [email protected].

endless Pool Waterwell - $8,000 or best offer. 5 years old; Used Endless Pool Water well 7’x7’ 51” deep have maintenance DVD assembly required. New filter/Heater 2014. Contact Beth Gerber at 314-952-2931 or [email protected]

2009 endless Pool Waterwell - $6,000. 6 years old; 2009 Endlesss Pool Waterwell 7’ X 7’ 51’ deep, includes DVD that explains how to build and maintain it. Contact Beth Gerber at 314-952-2931 or [email protected]

Waverley Glen (A Prism Medical Company) Model C450 - $2,500. 4 years old; Lift System that is a fixed track securely mounted on the ceiling in the home. It is used in conjunction with a lift track and a sling to safely lift, position, and easily move the individual along the track to another location and lower him to bed, wheelchair or bath without risk to the caregiver. Comes with 3 slings. Contact Janet Kinninger at 636-498-0705 or [email protected]

Slide Bath Bench - $50. Slide bath bench, barely used, without box. My daughter, being nice, installed it and it is way too big for the bathroom and I cannot navigate safely. I have the center piece, just removed for photo. Front porch pickup, Belleville, IL. Contact Debra at 6184071261 or email [email protected]


ST. LoUIS AddReSS CoNTACT ACTIVITIeS oFFeRedBridgeton Community Center

4201 Fee Fee Road Bridgeton, MO 63044 314-739-5599

Carondelet Park Rec Plex

930 Holly Hills AveSt. Louis MO 63111 314-768-9622

Center of Clayton 50 Gay AvenueClayton , MO 63105 314-290-8511

Downtown YMCA 1528 Locust Street St. Louis, MO 63103

314-436-4100

Edward Jones Family YMCA

12521 Marine Avenue St. Louis, MO 63146 314-439-9622

Emerson Family YMCA 3390 Pershall RoadSt. Louis, MO 63135 314-521-1822

Jane’s House of Well-Being

1112c First Capitol DriveSt. Charles, MO 63301 636-255-9642

JCC - Marilyn Fox Building

16801 Baxter RoadChesterfield, MO, 63005 314-442-3428

JCC - Staenberg Family Complex

2 Millstone Campus Drive St. Louis, MO 63146 314-432-5700

Kirkwood Family YMCA

325 N. TaylorSt. Louis, MO 63122

314-965-9622

Maryland Heights Centre

2344 McKelvey Road Maryland Heights, MO 63043 314-738-2599

Taiwanese Church 542 Ries RoadBallwin, MO 63021 314-898-7788

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 a program in your community or become an expert in using a healthy lifestyle to help manage MS. Financial assistance is available to help you pay for therapeutic recreation classes and memberships. 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. Please contact the facility of choice and determine if the facility will meet your desired needs to ensure a rewarding experience. Please note the Gateway Area Chapter makes every effort to ensure all facilities are accessible to meet the needs of people living with MS. If you think the facility would like education on MS, please contact the Chapter office at 1-800-344-4867 option 1.

stay healthy with Ms

AQUATICS PILATES TAI CHI YOGA ZUMBA

An on-line course about MS for fitness and wellness instructors is available at bit.ly/introtofitness.

Ms exercise class Mercy Therapy Service Gym 1176 Town & Country Commons 12 week session, 1 hour class Instructor: Nancy Dollenmeyer, MPT, MSCS, Mercy Therapy Services Cost: $125 for 12 week series Time: 10-11 a.m., Tuesdays & Thursdays Registration: Call Nancy at 636-893-1107 or [email protected]


therapeUtic recreation sitesST. LoUIS CoNT. AddReSS CoNTACT ACTIVITIeS oFFeRed

Mid-County YMCA 1900 Urban DriveSt. Louis, MO 63144 314-962-9450

Olivette Community Center

9723 Grandview Drive St. Louis, MO 63132

314-781-9020 800-344-4867

Mercy Medical Building 12348 Old Tesson, Suite 220St. Louis, MO, 63128 314-729-0181

Show Me Aquatics 2085 Bluestone Drive St. Charles, MO 63303 636-896-0999

South City Family YMCA

3150 Sublette AvenueSt. Louis, MO 63139 314-644-3100

South County Family YMCA

12736 Southfork RoadSt. Louis, MO 63128

314-849-4668

St. Charles County YMCA

3900 Shady Springs Lane St. Peters, MO 63376

636-928-1928

The Cancer Support Community

1058 Old Des Peres RdSt. Louis, MO 63131 314-238-2000

The Lodge in Des Peres 1050 Des Peres Road St. Louis, MO 63131 314-835-6150

The Pointe at Ballwin Commons

1 Ballwin Commons Circle Ballwin, MO 63021 636-227-8950

Riverchase 990 Horan Dr Fenton, MO 63026 618-343-0067

Washington Four Rivers Family YMCA

400 Grand AvenueWashington, MO 63090 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 63105 314-746-1500

Wellbridge Athletic Club

998 Woods Mill RoadTown & Country, MO 63131 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 314-645-9785

Z Power Fitness 233 Lamp & Lantern Village Town & Country, MO 63017 314-378-8639

AQUATICS PILATES TAI CHI YOGA ZUMBA


MId-MISSoURI AddReSS CoNTACT ACTIVITIeS oFFeRedColumbia Activity and Rec. Center

1701 W. Ash StreetColumbia, MO 65203 573-874-7700

Elm Street Yoga 904 Elm St. Suite 210. Columbia, MO 65201 573-441-8566

Jefferson City YMCA 424 Stadium Boulevard Jefferson City, MO 65101 573-761-9021

Mexico Family YMCA 1127 Adams StreetMexico, MO 65265 573-581-1540

Pilates for Everybody 4818 Santana Circle Columbia, MO 65203 573-228-6389

Pilates & Yoga at Chapel Hill

2010 Chapel Plaza Ct. Suite AColumbia, MO 65203 573-446-0224

ILLINoIS AddReSS CoNTACT ACTIVITIeS oFFeRed

Edwardsville YMCA 1200 Esic DriveEdwardsville, IL 62025 618-656-0436

John A. Logan College 700 Logan College RoadCarterville, IL 62918 618-985-3741

Collinsville Maryville Troy YMCA

1 Town Center Drive Maryville, IL 62062 618-346-5600

Columbia-Monroe Physical & Sports Medicne

880 Columbia CentreColumbia, IL 62236 618-281-9699

Mascoutah Senior Center

227 N. Market Mascoutah, IL 62258 618-566-8758

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 618-457-8186

Sukha Yoga Center 18 South High Street Belleville, IL 62220 618-236-9642

SoUTHeAST MISSoURI AddReSS CoNTACT ACTIVITIeS oFFeRed

Black River Coliseum 301 South 5th Street Poplar Bluff, MO 63901 573-686-8001

Cape Girardeau Municipal Pool

1920 Whitener Street Cape Girardeau, MO 63701 573-335-4040

PARC Fitness Center 2620 N. Westwood Blvd.Poplar Bluff, MO 63901 573-686-5985

Simply Yoga 1504 Preacher Roe #2 West Plains, MO 65775 417-293-1184

Xtreme Gymnastics Cheer and Dance

422 West Pine Street Poplar Bluff, MO 63901 573-785-3780

therapeUtic recreation sites

Gateway AreaWalk 2015

Ride 2015

GatewayGetaway

experience a fun cycling event close to home at the beautiful Lewis & clark community college campus in Godfrey, iL, and help fund cutting-edge research for Ms. Unlike other local events, Bike Ms is a weekend-long celebration with your team, family and friends. rise to your own personal challenge with 25, 50, 75 and 100-mile routes.

BiKe Ms WALK Ms Walk Ms is the rallying point of the Ms movement, a community coming together to raise funds and celebrate hope for the future. Walk Ms is a great chance for teams and communities to come together for a fun-filled event while making a tremendous difference in the lives of those with Ms.

WoMen on tHe Move LuncHeonthe Women on the Move Luncheon is an inspirational afternoon and an empowering way for women to support women in the movement toward a world free of MS – a disease that affects twice as many women as men. it includes entertainment, a raffle, opportunities for guests to visit with select vendor partners, and an opportunity to make a “Gift from the Heart” donation. the luncheon will feature keynote speaker Kate Milliken.

challenge Walk Ms is a 2-day, 50k experience that tests your strength and your spirit by doing what thousands of people living with Ms cannot do themselves – putting one foot in front of the other. the walk will challenge you, the experience will change you.

cHALLenge WALK Ms

gatewaywalkms.orgapril and May, Various sites

gatewaybikems.orgseptember 10-11, Godfey, illinois

gatewaymschallenge.orgjune 4-5

teAM finisH Ms

mswomenonthemove.orgapril 28

gatewaymssociety.orgapril 9-10

join team Finish Ms at the Go! st. Louis Marathon! runners can participate in the marathon, half marathon, marathon relay, 5K run/walk, children’s Fun runs and Mature Mile. Fundraising participants get free registration in the marathon, t-shirt and finish line celebration meal. If interested email Meghan at [email protected].

an exciting opportunity for peo-ple with a commitment to the Ms movement to raise awareness and critical funds in new and creative ways this is yoUr event, which means you get to do it your way, with all of your own ideas, adding all of your own flare! DIY events are a great way to have fun, show your creativity and support a great cause!

do it yourseLf doityourselfms.org

We’re stronger togetHer.

spring 2016 ms connection · for approval of ocrelizumab to treat primary-progressive ms, the...

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