Don't Just Ride

SUMMER 2013 GATEWAY AREA CHAPTER MS CONNECTION MAGAZINE Don’t just ride

Team Kaldi’s hits Million Dollar Mark

INSIDE 4-5 8-9 16-17 27-29 MAKING A FIREFIGHTER CHAPTER MAKING THE THIS RUN FOR IT STEPS UP FOR PRESIDENT MOST OF TALK ISSUE COLLEAGUE MOVING ON MS GROUPS 2 MS CONNECTION: SUMMER 2013

LETTER FROM THE PRESIDENT INSIDE THIS ISSUE Dear Friends,

Be A Digital MS Activist...... 3 It is with mixed emotions that I write this column. Making A Run For It...... 4-5 The Gateway Area Chapter has been my home for the last 20 years, and this month I will be moving Kaldi’s Hits Million Dollar Mark... 6-7 on to a new position with the National MS Firefigher Steps Up For Colleague... 8-9 Society’s West Region. Balanced Care Workshop...... 9 I can’t tell you what an honor it has been for me John L. Trotter Program...... 9 to work with the board members, staff, volunteers, and everyone Ask The Professional...... 10 connected to the MS movement in Missouri and Illinois. I thank you all for your commitment to a world free of MS, and for Camp Hope...... 11 allowing me to play a part in it here. CarePartner Column...... 12 When I look through the pages of this magazine, I can’t help but Connections...... 13 reflect on the progress we’ve made since I first became a part of this Research On The Road...... 13 movement. Twenty years ago, we did not have a single disease- modifying drug. On page 10, Dr. Myles Goble reflects on the Research MS...... 14-15 challenge of choosing among the 10 FDA approved treatments. Chapter President Moving On...16-17 We highlight one of our Bike MS teams, Team Kaldi’s Coffee, on Update on Therapies...... 17 page 6, for reaching the milestone of $1 million raised. The growth Financial Assistance...... 18 in the Bike MS: Express Scripts Gateway Getaway Ride, along with Walk MS, the Dean Team Automotive Challenge Walk MS, Wellness Network...... 18 MuckFest MS, MS Corporate Achievers and DIY events (see page Tips To Beat The Heat...... 19 8) over the last two decades have been tremendous, and it is due in large part to dedicated teams like Kaldi’s. Volunteer Column...... 20 Chapter News...... 22 We highlight Kim Williams on page 27, one of our Talk MS group facilitators. Committed volunteers like Kim providing support to Alternative Treatments...... 23 other people living with MS in our community show the power of Family Weekend...... 24 all the connections we have built at the Chapter. Talk MS Groups...... 27-29 I am grateful for all the wonderful people I have had the Therapeutic Recreation...... 30-32 opportunity to work alongside, and I know that I will miss you all Chapter Calendar...... 34 as I move into my new role. Thank you for everything! Program Registration...... 35 Sincerely, Midwest Teleconference Series...... 36

P.S. Although I will be working in the West Region of the National MS Society, my home will still be here in Missouri! GATEWAYMSSOCIETY.ORG | 1-800-344-4867 3

ADVOCACY their social media pages and by thanking them on Facebook or Twitter for their supportive actions. BE A DIGITAL MS • Recruit. Encourage others to join the movement by directing them to our video ACTIVIST at ntl.ms/YouCanBeAnMSActivist, or to www.nationalMSsociety.org/ In 2012, MS activists sent tens of thousands digiMSactivist. of emails, placed hundreds of phone calls, and Become a digital MS activist and help shape made hundreds of in-person visits to members the conversations today that will drive change of Congress asking for their support on issues tomorrow—we promise you, people will listen! important to people with multiple sclerosis and their families. And now there are more DEAR COLLEAGUE ways for MS activists to connect—online. “Dear Colleagues” are important tools in DRIVING CHANGE supporting legislation that impacts people with multiple sclerosis. They are letters Digital MS activists—like all MS activists— sent by one or two members of Congress want to drive change and do so by amplifying to fellow members, usually asking for their voice and connecting with elected co-sponsors on a new bill or seeking to officials over social media. influence recipients’ votes on a particular issue. The Society often helps compose At www.nationalMSsociety.org/digiMSactivist, letters that support legislation important learn how to share your story, connect with to people with MS. MS Activists help other MS activists and build relationships gain signers through Action Alert emails. through social media and email. The webpage includes ways to: This spring, Dear Colleagues were circu- lated in Congress to support $10 million • Get informed. Become part of the MS in funding for the MS Congressionally Activist Network. Receive e-newsletters Directed Medical Research Program, and Action Alerts about important pieces $32 billion for the National Institutes of of legislation. Send emails with a few clicks Health, and $2.5 million for the Lifespan of your mouse. Respite Program. The Congressional MS • Rise up. Learn where your elected officials Caucus and MS activists are working in stand. Speak out on issues important to coalition with other groups to preserve you as a person affected by MS. these funding levels for FY 2014. To join the effort, go towww.nationalMSsoci - • Take Action. Build relationships with ety.org/MSActivist. elected officials by posting on and liking 4 MS CONNECTION: SUMMER 2013

LIVING WITH MS MAKING A RUN FOR IT Like most people, Bill Sinak wasn’t sure what the future held when he was told “you have MS.”

“I didn’t know if I would be able to do much in 5 or 10 years,” said Bill, who was diagnosed when he was 29. His wife had just had a baby girl. “I wasn’t really sure what my life was going to be like. Would I be able to do things with my kids?”

As an athlete, Bill already lived an active lifestyle. After being diagnosed he got even BILL SINAK more active. He has ridden in Bike MS every RAN 200 MILES year for the past 19 years and began running marathons in 2000. IN 9 DAYS IN COLORADO AS “My neurologist said from the start to stay PART OF THE MS healthy and to stay active,” Bill said. RUN THE US RELAY ACROSS THE This June, Bill went the extra mile – in fact he went an extra 200 miles. As part of the 3,000 UNITED STATES. mile relay run across America called MS Run CLICK HERE TO the US Relay, Bill ran from Steamboat Springs SEE MORE. to Hudson, Colorado in 9 days in early June. “I like to run, but this is way longer than I had ever run. I felt surprisingly strong almost “This run was truly a life-changing journey the entire run. The cool crisp mountain air for me,” Bill said. “Participating in MS Run was like breathing new life on a daily basis. I the US was an opportunity for me to take it was humbled by how amazing it was to be out to an entirely new level of both awareness and in the middle of nowhere, all by myself, just fundraising.” running mile after mile across our beautiful country.” Bill read about Ashley Kumlien’s run across the United States a couple of years ago and Bill, who has run 18 marathons, is determined when he heard that she was organizing a relay to not let his MS slow him down and part of run across America, he knew he had to be a the reason he’s doing the run is simply because part of it. he still can.

“I thought it was right up my alley,” Bill said. “I want to do whatever I can to stay healthy,” GATEWAYMSSOCIETY.ORG | 1-800-344-4867 5

Bill said. “Part of it is that I didn’t know how long I’d be able to do these things. I’ve been lucky with my MS so I’ve been able to stay a step ahead of it with my medications, activity level, and my mental attitude.”

The three goals of the MS Run The US Relay are to raise awareness, raise funds and inspire other people living with MS to keep moving.

Bill has raised close to $30,000 riding in Bike MS over the years for team Copaxone and he has already raised more than $13,000 for his run – mainly online. SINCE HE WAS DIAGNOSED WITH MS 20 YEARS “I have a great support network of people who AGO, BILL SINAK HAS BEEN DETERMINED TO KEEP have been donating to my bike ride for years,” MOVING THROUGH BIKE MS AND MARATHONS. Bill said. “I sent out a mass email to everyone who has supported me, and Facebook and volunteering.” Twitter have been huge. I’ve probably gotten the majority of donations from Facebook and After 9 days, 200 miles of running and more all over the world on Twitter.” than $13,000 raised, crossing the finish line was bittersweet. Only two of the 14 relay runners live with MS, making Bill even more of an inspiration. “When I finally reached the finish, it was somewhat surreal and I had mixed emotions,” “I’ve been humbled by all the support from Bill said. “It was great to accomplish what I people,” Bill said. “Knowing I’m one of the set out to, but it was a bit sad having it come two people out there doing this with MS, it’s a to an end. All in all, I could not have asked little more personal to me.” for a better 9 days of running. It was simply amazing.” Several members of Bill’s family made the trip to Colorado to cheer him on. The MS Run the US Relay will end in New York City on September 6. Bill was invited to “My family met me several times along the run the final leg of the relay, but can’t because route to cheer me on, which was extremely it’s the same weekend as Bike MS and he’ll be motivating and emotional,” Bill said. “My celebrating his 20th year participating in the favorite day and moments came on day ride. 5 when I climbed 8.5 miles up and over Loveland Pass to reach 12,000 feet. Getting Whether he’s moving on the bike or on foot, to the top and seeing my family was majestic. Bill’s message about MS is clear. My wife has been my rock for all the years of fundraising and training. She’s been involved “MS isn’t a life-ending diagnosis,” he said. in the MS Society as much as I have with “There’s life after MS.”n 6 MS CONNECTION: SUMMER 2013

BIKE MS $1 MILLION RAISED - THAT’S A LOT OF COFFEE BEANS When Sandi Phillips asked Kaldi’s Coffee to sponsor her Bike MS team in 2003, she had no idea what she was getting into. “I think when we started this, none of us really knew how far it was going to go and TEAM KALDI’S COFFEE WILL HIT THE $1 MILLION how many years they were going to sponsor us,” Sandi said. RAISED MARK THIS YEAR AT BIKE MS. A decade later, Kaldi’s still sponsors the team. However, this latest anniversary is not their biggest milestone. They are on their way to hitting the one million dollars raised mark in total team fundraising this year. “Last year, we raised just shy of $150,000. Along those lines, we see we’re going to be people getting TEAM KALDI’S COFFEE able to hit one million during the August together and raising YEAR BY YEAR timeframe,” team captain Don Baird said. money for a great YEAR $ RAISED CYCLISTS 2001 $11,311 14 cause.” “It’s so exciting to be able to reach such a 2002 $12,992 16 2003 $25,965.00 52 great milestone for the MS Society,” Sandi Team Kaldi’s now 2004 $46,406.00 64 said. “I think it’s such a tribute to Kaldi’s and has nearly 150 2005 $60,159.00 67 everything they do for the community.” teammates. Don 2006 $77,910.00 75 said his team is 2007 $86,421.00 93 Josh Ferguson, Kaldi’s owner, says Team 2008 $103,092.00 116 full of outstanding Kaldi’s has a special element that led to this 2009 $106,403.00 122 members who accomplishment. 2010 $123,482.00 166 are already in full 2011 $140,175.00 142 “I think it’s the people. It’s really as simple swing for 2013 2012 $148,562.00 149 as that,” Josh said. “ It’s really all about great fundraising. TOTAL $942,878.00 1076 GATEWAYMSSOCIETY.ORG | 1-800-344-4867 7

TEAM KALDI’S COFFEE HAS BEEN A FIXTURE AT THE TOP TEAMS START AT BIKE MS FOR YEARS.

“I THINK IT’S THE PEOPLE. IT’S REALLY AS SIMPLE AS THAT. IT’S REALLY ALL ABOUT GREAT PEOPLE GETTING TOGETHER AND RAISING MONEY FOR A GREAT CAUSE.”

“We’ve asked our top fundraisers to help teach their methods to raise money to fight MS,” Don said. “I think that’s really going to help us this year.” Teammate Mark Abels has been riding with million? Another 10 years? It’s hard to say.” Team Kaldi’s since its start. He thinks there’s “We’re not here to win any races or set any more to that special element that Josh was land speed records,” Mark said. “We’re out talking about – Kaldi’s. here, we’re moving, we’re going, we’re enjoying “They’re a tremendous sponsor,” Mark said. our bike riding and it’s really appropriate that “They’re always happy to work with us.” we’re able to do that to fight MS because MS keeps people from moving. It slows people What’s next for Team Kaldi’s? No one is sure. down and we’re going to speed people up “I don’t know,” Sandi said. “2 million? 3 again.” n 8 MS CONNECTION: SUMMER 2013

DO IT YOURSELF EVENTS 24 HOURS OF WALKING ADDS UP TO $27,000 RAISED When Doug Raines heard that fellow firefighter Nick Leone had been diagnosed with MS at just 29 years of age, he knew he had to do something.

Doug organized a 24-hour treadmill walk at the fire station to raise money and awareness. Doug recruited 24 teams to donate at least $400 a team. The team donations combined WHEN FIREFIGHTER NICK LEONE WAS DIAGNOSED with raffle items and donations from the WITH MS, FELLOW FIREFIGHTER DOUG RAINES community added up to $27,000. INITIATED A 24-HOUR WALK-A-THON TO RAISE “The majority of the donations came from FUNDS AND AWARENESS FOR MS. HE EXCEEDED word of mouth through Nick’s family and HIS GOAL OF $20,000 BY $7,000. friends, along with the fire department community,” Doug said. “We were also very department would come through. We live in fortunate to have several nice raffle items. a great community!” including St. Louis Cardinals jerseys, Blues tickets, Rams tickets and free golf.” For his tremendous fundraising achievements, Doug was invited to the National MS Society’s Doug had lofty goals for his 24-hour walk national conference in Dallas which opened as he hoped to raise $20,000. He knew that his eyes to the community surrounding MS. he had a community behind him that would support him and Nick. “As a fireman I belong to a brotherhood - a tight group of individuals that would go to “I was surprised to reach $27,000,” he said. great lengths for each other,” Doug said. “I “I was not surprised that I reached my goal of have never seen or been a part of something $20,000. I knew that the community and the that has ever come close to the friendships and people that care for Nick and support our fire commitments that we have as firemen, until I GATEWAYMSSOCIETY.ORG | 1-800-344-4867 9

LIVING WITH MS I HAVE NEVER SEEN OR BEEN A PART OF SOMETHING THAT HAS EVER COME CLOSE FREE WORKSHOP TO THE FRIENDSHIPS AND COMMITMENTS BALANCED CARE FOR THAT WE HAVE AS FIREMEN, UNTIL I INDIVIDUALS WITH MS WENT TO THE NATIONAL MS SOCIETY If you have MS or are a family member or CONFERENCE IN DALLAS. caregiver of someone with MS, you should attend this free workshop. It is brought to went to Dallas. I was so moved to be a part of you by the Veterans Affairs MS Centers of the National MS Society. I was so moved by Excellence and the VA St. Louis Health Care the people who were making commitments, so System. moved by the stories and struggles, but also so energized by the passion that the whole room had.” AUGUST 3, ST. LOUIS, MO, 9:30 A.M. Saint Louis University Doug didn’t know much about MS until 3050 Olive St., Monastero-Sanctuary Room Nick was diagnosed in 2012, but he learned St. Louis, MO 63103 all about the progress of MS research and the support available at the national conference. Please note this is NOT a program run by the Gateway Area Chapter of the National MS Society. “It was a great thing for me to see beyond For more information please contact Dr. Marsha what I did in September and outside my little Tarver at 206-764-2433 or [email protected]. world,” Doug said.

“My little world consisted of Nick at 29 being stricken with this terrible disease and once I got to meet other people in the organization and other people with MS, I SAVE THE DATE was overwhelmed. I wish I could have bottled that experience and brought it back with JOHN L. TROTTER PROGRAM me. So many people helped me through SATURDAY, NOVEMBER 16, 10 A.M. that fundraising experience and they didn’t TOPIC: Vitamin D and MS realize how it touched so many people. I wish SPEAKER: Dr. Ellen Mowry that type of atmosphere could be around all Assistant Professor, Neuroimmunology organizations.” n Johns Hopkins University 10 MS CONNECTION: SUMMER 2013

ASK THE PROFESSIONAL HOW DOES MY NEUROLOGIST CHOOSE THE APPROPRIATE THERAPY FOR ME? Now that Aubagio and Tecfidera have been Safety is another issue that approved to treat relapsing forms of multiple is important to consider sclerosis, there are now three oral medications when choosing a treatment. available (Gilenya is the other, approved Each therapy has its own set for use in the US in September 2010). All of possible side effects and three oral medications have the potential to one should always weigh cause elevations in liver function tests, but the possible benefits of a Tecfidera is the only one that does not have any DMT against the possible contraindications (or conditions where that consequences of using it. It therapy should be avoided). is fair to say that although MYLES GOBLE, MD the thought of taking a pill Gilenya is thought to work by affecting once or twice a day sounds NEUROLOGIST the movement of potentially auto reactive much more appealing than NEUROLOGY, INC. lymphocytes into the central nervous system getting shots or getting an COLUMBIA, MO while Aubagio is thought to work by inhibiting infusion, we have so much the formation of certain cells, including more data regarding safety potentially harmful T-cells. of the older medicines in treatment of MS than we do on the newer ones. Tecfidera is thought to affect the oxidative stress pathways of cells, decreasing inflammation. The Another issue is efficacy, or how well a decision regarding which disease modifying therapy has been shown to work in studies. therapy (DMT) to use is a sometimes Unfortunately, there aren’t any studies that complicated one that, in my practice, involves directly compare ALL of the different options, looking at the issue from several different but there are some studies that compare one angles. DMT to another DMT.

First, tolerability — which therapy will my In the end, I tend to let the patient decide patient best tolerate? If a patient cannot stand which therapy he/she would like to be on since, to take his/her medicine due to intolerable side in my opinion, “owning” that decision seems to effects, then no matter how good a therapy is, it have a major influence on whether or not there won’t work optimally. will be success with that particular therapy. n GATEWAYMSSOCIETY.ORG | 1-800-344-4867 11

LIVING WITH MS CAMP HOPE JULY 21-26, MAKANDA, IL This program is just for youth ages 8-15 who have a loved one with MS or live with 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. Activities include: • Swimming, canoeing, and pontoon boat rides NEEDED: MALE CAMP • Adventure hikes and fishing • Campfires and evening entertainment • Arts and crafts and other creative activities HOPE COUNSELORS • Horseback riding TOP REASONS TO BE A CAMP HOPE MS • MS education and sharing groups COUNSELOR: DETAILS: • Make a difference in the lives of kids July 21-26, Makanda, IL affected by MS Touch of Nature Environmental Center • Network with other counselors Southern Illinois University (near Carbondale) • Gain terrific experience educating children PROGRAM FEE: • Build your resume $150 per child. The fee includes all meals, • Rack up service hours overnight lodging, and activities. Scholarships • Have fun in a great setting are available. Contact Stacey at stacey.sickler@ nmss.org or 314-781-9020. DO YOU KNOW A YOUNG MALE WHO REGISTRATION: WOULD MAKE A GREAT COUNSELOR? Each camper must complete an application The Chapter is in great need of male online before being accepted to Camp Hope. counselors over the age of 18 for Camp Hope. Upon acceptance, you will receive detailed If you know a good candidate please contact information and a billing invoice. Stacey at 314-781-9020, then press 0 or Call 800-344-4867, option 2 or visit [email protected]. mscamphope.org. The deadline is June 21. DEADLINE TO APPLY IS JUNE 21. 12 MS CONNECTION: SUMMER 2013

TIPS FOR CAREPARTNERS IS IT THEM OR THE MULTIPLE SCLEROSIS? My husband has become short tempered and irritable since his MS diagnosis 2 years ago. Although he may have been moody before, now the moods seem more intense and last longer. Is it him or the MS? Sarah, MS Carepartner Dear Sarah, your question. When other carepartners I can honestly say that this is one of the have asked this, I have most frequently asked questions in the MS discovered what they Carepartner group I facilitate. “Is it them are really asking is: or the MS?” First, it’s always important for you to tell your husband’s doctor about any • Are they irritable changes in your husband including his moods. because of something KAREN TRIPP, MS LMFT This is the best place to determine if there is I’ve done? a physical issue evident from your husband’s MARRIAGE AND FAMILY moodiness either related to his MS, another • Is there something THERAPIST ailment or a side effects to medications. I need to do so they Understandably, both physical and cognitive will not be so irritable? impairments in MS can create irritability. • Is it always going to be like this? In asking the question, it seems you are • Do they still love me? searching for a way to cope with his moods. If the answer is “It’s the MS,” then this leads a These questions exists in every healthy carepartner to want to increase their patience relationship at one time or another. and tolerance with the situation. If the answer What is important is for the MS to not get in is “It’s him,” then a carepartner feels justified the way of them being asked. By asking them, in asking their partner to change. After all, it you can remove the negative impact of false wouldn’t be fair to expect change if they can’t assumptions and restore open communication change. Unfortunately, our moods and our which can lead to resolution. bodies are intensely aligned, so drawing a line and saying “This mood is because of the MS Remember, open communication is not and this one is not,” is typically not possible. a one-time fix but rather the way healthy couples work toward conflict resolution and But, perhaps the solution to coping with your intimacy. n husband’s moods is in the questions behind GATEWAYMSSOCIETY.ORG | 1-800-344-4867 13

LIVING WITH MS RESEARCH MS CONNECTIONS ON THE ROAD Research MS is a program that provides LEARN. NETWORK. GROW. updates on current multiple sclerosis research Connections is a program that enables people and allows professionals to discuss any new living with MS to meet others who deal with therapies available to people living with MS. similar situations. Participants also hear from an expert on the disease. They can listen and JUNE 15, COLUMBIA, MO, 10 A.M. ask questions to gain an insight on Aubagio, as Hilton Garden Inn Guest Speaker: well as progress in research to help find a cure Erin Longbrake, MD, PHD 3300 Vandiver Dr. MS Neurology Resident for MS. Washington University School Columbia, MO of Medicine JULY 9, JEFFERSON CITY, MO, 5:30 P.M. AUGUST 24, REND LAKE, IL, 10 A.M. Capitol Plaza Hotel Guest Speaker: Gibby’s on the Green Guest Speaker 415 W. McCarty St. Myles Goble Mark Tullman, MD MD 12476 Golf Course Dr. The MS Center for Innovations Jefferson City, MO Neurologist in Care Neurology Inc. Wittington, IL Missouri Baptist Medical Center 65101 Columbia, MO

SEPT. 12, MARION, IL, 5:30 P.M. SEPT. 21, CAPE GIRARDEAU, MO, 10 A.M. 17th Street BBQ Guest Speaker: St. Francis Health and Gregory F. Wu, MD, PHD Division of Multiple Sclerosis 2700 17th St Wellness Center Department of Neurology Washington University School Marion, Illinois 62959 150 S. Auburn Rd. of Medicine Cape Girardeau, MO REGISTRATION REQUIRED: SEPT. 24, MARYVILLE, IL, 6 P.M. These programs are free but call 800-344- Anderson Hospital Guest Speaker: g Florian Thomas,MD, PHD 4867 or go to gatewaymssociety.org Director, St. Louis VA Regional 6800 State Route 162 MS Center of Excellence Chapter Calendar to register. Director, National MS Society Maryville, IL Multiple Sclerosis Center Professor of Neurology Saint Louis University

REGISTRATION REQUIRED: SPONSORED BY: These programs are free but call 800-344- 4867 or go to gatewaymssociety.org g Chapter Calendar to register. 14 MS CONNECTION: SUMMER 2013

RESEARCH PROGRESS AT AAN MEETING

Over 12,000 neurologists and other researchers gathered in San Diego in March to share the most up-to-date research on treating PROFESSOR EBERS, CENTER, RECEIVES THE JOHN DYSTEL neurological diseases such as multiple sclerosis PRIZE FROM DRS. TIMOTHY COETZEE AND BRUCE COHEN at the annual American Academy of Neurology’s (AAN) meeting. weeks was effective in reducing relapse rates and the risk of progression of disability. The study Here are a few highlights from the more than is continuing into a second year and the trial 500 MS-related presentations that focused on sponsor Biogen Idec has announced plans to stopping MS, restoring function and ending apply for FDA approval later this year. Another MS forever. one-year phase III trial found that injections of twice the standard dose of glatiramer acetate STOPPING MS (Copaxone) taken three times per week were STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER effective in reducing relapses and MRI-detected Progressive MS disease activity, with no unexpected safety A small study of an oral blood-pressure issues. medicine, Amiloride, found a reduction of A large study in France (ENIGM) found brain shrinkage associated with the disease in 14 that among 200 people who switched from people with primary-progressive MS. Further natalizumab (Tysabri) to fingolimod (Gilenya), testing in a larger study is now underway. 32% experienced a relapse during the “washout” Researchers in a large trial of Gilenya for interval of 3 to 6 months when no therapy was primary-progressive MS reported good progress given. The researchers concluded that switching in setting up the trial. This is one of several increases the likelihood of disease reactivation ongoing large studies in progressive MS. and that the washout period should not be MS Therapies longer than 3 months. Results of a study on peginterferon beta-1a (a Results of two phase III trials of oral dimethyl new form of Avonex) designed to stay in the fumarate (Tecfidera), approved by the FDA in body longer than the standard form suggest March, suggest that the treatment begins to that peginterferon injected every two or four take full effect after three months’ use. This GATEWAYMSSOCIETY.ORG | 1-800-344-4867 15

effect was sustained over the two-year span of on disease disability and progression in future the trials. trials. Several presentations focused on results from extension phases of completed clinical trials RESTORING FUNCTION in relapsing-remitting MS. To read more, STvisitOPPING THE DISEASE RESTSeveralORING WHAT’S BEEN LOSTstudiesENDING MS FOREVERfocused on the benefits of www.nationalMSsociety.org/2013AAN. exercise for brain function and MS symptoms Exploring disease activity such as fatigue, while others looked at how the brain can adapt to MS damage. To read blog An Argentinian study on whether vaccinations posts by MS researchers on these and other can trigger MS attacks found that yellow studies, visit blog.nationalMSsociety.org. fever vaccines may substantially increase the A study on CCSVI did not find a significant risk of MS relapse; therefore, people with MS difference between 61 people with MS and planning a trip to a region with an increased 20 people without MS when technicians risk of yellow fever should discuss the risks and trained in CCSVI assessment used various benefits of vaccination with their doctor. ultrasound techniques to detect the condition. A small study in Louisiana found that people The first results of another study of controlled endovascular treatment at six months found with higher levels of glucose were more likely to no adverse events, but also no sustained have higher levels of disability. This important improvement in venous outflow. lead needs more study to prove a role for blood sugar in MS progression. ENDING THE DISEASE FOREVER A few studies focused on ways to track disease STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER progression, including one that analyzed serum Several reports focused on risk factors for samples from people with MS who were taking MS, including one indicating that dietary salt glatiramer acetate (Copaxone). The researchers may stimulate activity of key immune cells involved in MS attacks. Read more at www. were able to find antibody profiles that could nationalMSsociety.org/dietarysalt. detect those who responded to therapy and those who did not. Dr. Nicholas LaRocca of For his extensive work on understanding MS, the National MS Society described efforts of including the importance of genetic factors the newly formed MS Outcome Assessments in who develops the disease and how genes Consortium to accelerate development of more interact with environmental factors, Professor effective treatments for MS. They will analyze George Ebers was this year’s recipient of the data from completed MS clinical trials and John Dystel Prize for MS Research, given other studies and work with regulatory agencies jointly by the Society and the AAN. to qualify a new outcome measure that can Read scientific summaries on the AAN’s website more sensitively track the impact of therapies at www.abstracts2view.com/aan. n 16 MS CONNECTION: SUMMER 2013

BOARD OF TRUSTEES AFTER 2 DECADES, CHAPTER PRESIDENT HEADED WEST Gateway Area Chapter President Phyllis PHYLLIS ROBSHAM ADDRESSES THE CROWD Robsham lost track of the number of Walks AT CLOSING CEREMONIES OF THE DEAN she has participated in, but she’s sure the number is in the hundreds. TEAM AUTOMOTIVE CHALLENGE WALK MS AT WASHINGTON UNIVERSITY ON JUNE 2. SHE BEGAN When you add in educational and social HER CAREER WITH THE NATIONAL MS SOCIETY programs, Bike MS, Challenge Walk MS, IN 1993 AND HAS DONE ABOUT EVERY JOB AT Talk MS group meetings, and all of the other events the Chapter holds, the number is easily THE CHAPTER. BELOW SHE ENJOYS A CHAPTER more than a thousand. FUNDRAISER IN 1997. Robsham’s next But what she says she will remember most step in the MS about her time at the Chapter is not the many Movement events – it is the people. will take her to some of the “Over the past 20 years, I’ve had the opportunity to spend time with some of the farthest corners most dedicated and passionate people I could of the National ever hope to meet here at the Gateway Area MS Society, including Alaska and Hawaii. Chapter,” she said. “From our Chapter staff Robsham will move into the role of Executive members, to our committed volunteers, to Vice President of the West Region of the the thousands of people living with MS and National MS Society starting in June, 2013. their families in our community, it has been While her travels will take her across much of a joy and a privilege to work alongside such the country, Robsham’s home will remain in amazing people.” St. Louis. GATEWAYMSSOCIETY.ORG | 1-800-344-4867 17

In her new role, Robsham will be providing RESEARCH leadership to nine Chapters in 12 states. But what she looks forward to the most, she says, is not visiting the beautiful beaches of PROGRESS ON MS California or the Rocky Mountains. THERAPIES “I look forward to sharing many of the lessons Here are potential therapies to keep an eye on that I have learned in my time at the Gateway as we move forward. Area Chapter, as well as continuing to learn Alemtuzumab, a monoclonal antibody that from the great people working across the West depletes circulating immune (T and B) cells Region and the country,” she said. “Together, thought to be responsible for MS attacks, we will keep moving toward a cure!” would be administered by IV infusion for five days and then for three days one year later. Robsham served in almost every department Laquinimod is a once-daily oral immune at the Gateway Area Chapter, starting modulator that showed in phase III studies to as a Director of Special Events in 1993, decrease relapse rates, though not as robustly and moving on to become Director of as investigators had hoped. This drug is about Development, Vice President of Chapter to be tested in another phase III study in 1,800 people with relapsing-remitting MS. Development and Programs, Executive Vice President, and eventually Chapter President in A highly concentrated liquid formulation 2008. of daclizumab is under study in relapsing- remitting MS. Experimental ocrelizumab, given intravenously, significantly reduced Gateway Area Chapter Board of Trustees disease activity on MRI scans in a study of Chair Bob Cannon summed up Robsham’s 218 people with relapsing-remitting MS. One contributions nicely. “Phyllis has led the person died due to brain edema; however, Gateway Area Chapter with great distinction, the relation of this death to the medication and it has been a privilege to work with her. is unclear. Additional research, now going She lives her values and gives of herself every on in primary-progressive MS and relapsing- remitting MS, is needed to further determine day to serve the MS community. While ocrelizumab’s safety and benefits. a skilled executive at running a complex organization, Phyllis also possesses that rare Research is also underway on potential treatments for progressive forms of MS quality of connecting personally with her and the International Progressive MS staff and the public. She is a role model in Collaborative, of which the Society is a so many ways, and we will miss her. She will member, plans to do all it can to speed the serve an even larger MS community in her development of those treatments. Current new role, and for that, we are all grateful.” n clinical trials include natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab. n 18 MS CONNECTION: SUMMER 2013

FINANCIAL ASSISTANCE RESOURCES & LIVING WITH MS TIPS YOU COULD USE. WELLNESS ELECTRIC BILLS To apply for summer low income home energy assistance programs, contact United NETWORK Way 2-1-1 or your local community action The Wellness Network connects people who have agency. an interest in or who are actively participating in exercise programs through a monthly teleconference. The Gateway Area Chapter of the National These monthly calls are an opportunity to share MS Society may be able to provide ideas and encouragement about exercise and include assistance with electric bills; certain special guest speakers. restrictions apply. Learn about how to apply for this assistance by accessing the JUNE 27, 7-8 P.M. AUG. 22, 7-8 P.M. Financial Assistance page on our website at www.gatewaymssociety.org or by calling AT-HOME PILATES & MS our office at 314-781-9020. EXERCISES Learn about what Pilates Discuss different is, its benefits and COOLING PRODUCTS exercise options for how it can help with The Multiple Sclerosis Association of you to do at home symptom managment. America (MSAA) offers low-income and learn more about SEPT. 26, 7-8 P.M. families free cooling products when the Chapter’s at-home ALTERNATIVE provided with a completed application and exercise program. MASSAGE a doctor’s script; contact them at 800- JULY 25, 7-8 P.M. 532-7667 or visit their website at www. THERAPY mymsaa.org. ZUMBA! Hear about the benefits Learn what Zumba is, of alternative massage COOLING CENTERS its benefits, how it can therapy for people living United Way 2-1-1 maintains a list of be modified for people with MS including cooling sites (over 90 sites in MO & IL) living with MS and Reiki Massage and Thai offering the general public air-conditioned where it’s offered. Medical Massage. relief and cool water during the hottest part of the day. Sites are activated if an Excessive Heat Advisory or Warning is The Wellness Network is free and provides resources issued by the National Weather Service. to a wide variety of people with MS of all abilities. Dial 2-1-1 for more information and for If you are interested in becoming a member of the the location of the center nearest you. Wellness Network, please call 1-800-344-4867 or visit our website to register for the monthly calls. GATEWAYMSSOCIETY.ORG | 1-800-344-4867 19

LIVING WITH MS TIPS TO BEAT THE HEAT & STAY COOL The hot days of summer in Missouri and Illinois Many companies have designed cooling are a time to take extra precaution in everyday garments & other types of equipment to help activities as heat may increase symptoms for you stay cool, including vests, wristbands, neck/ some people living with MS. Overheating can ankle wraps, hats/caps and shirts. To select cause a temporary aggravation of MS symptoms the appropriate cooling equipment for your that have occurred before. Taking measures individual needs, we encourage you to consider: to cool the body to a normal temperature will • What is the total cooling time of the garment? relieve these symptoms. • What is the cooling garment made of? What is the garment’s weight? • As the garments utilize different types Strategies for Staying COOL: of cooling mechanisms (e.g., ice packs, • Stay in an air-conditioned environment as evaporative cooling, phase-change), which much as possible when temperatures and would work best in your climate? humidity are high. • Is the garment designed to fit under or over • Take a cool shower or bath to “pre-cool” regular clothing? before exercise. • Will you need to purchase extra cool packs to • Wear short-sleeved, loose fitting clothing. maximize the use of the garment? Moisture wicking fabrics are beneficial. • Will your health insurer cover this item? • Drink extra water, especially during extended (If needed, the insurance billing code for times outside. cooling products is “E-1399: Durable Medical • Modify your exercise routine to be outside Equipment – Miscellaneous”). If your health during cooler times of the day or consider insurer denies your request, contact us for a exercise in a cool pool. cooling equipment appeal letter. • Utilize cooling devices such as vests and neck RESOURCES WEBSITE PHONE MS Association mymssa.org/msaa-help/ wraps. Plan ahead for extra ice packs for 800-532-7667 longer activities. (MSAA) Cooler cooling/ MS Cooling msfocus.org/Cooling- 888-673-6287 • Purchase an air conditioner. It may be tax Program Program.aspx deductible with proper documentation from Body Cooler bodycooler.com 800-209-2665 your doctor. Cool Medics coolmedics.com 800-505-0050 Cool Sport, Inc. coolsport.net/index.html 310-618-1590 RESOURCES: Glacier Tek, Inc. coolvest.com/MSdiscount 800-482-0533 United Way 2-1-1: www.211.org or dial 2-1-1 Misty Mate mistymate.com 800-233-6478 National MS Society Information Resource Polar-Products (CA) polar-products.com 800-597-0618 Center: 1-800-344-4867, option 1. Polar-Products (OH) polarproducts.com 800-763-8423 Steele, Inc. steelevest.com 888-783-3538 20 MS CONNECTION: SUMMER 2013

VOLUNTEER COLUMN VOLUNTEERING CAN LIFT THE SOUL BY HENRY VANSTON circumstances and HEIGHTS BUDDY VOLUNTEER people in my life as it happens. I was asked to explain why I volunteer. The short answer is my faith and the concept of When I first started loving your neighbor as yourself. volunteer work for the National MS Society, That sounds like an obligation, possibly I was often asked if similar to paying taxes ... not much fun, but the reason I was there you have to do it, and it costs. However, I was because a friend or HENRY VANSTON know for myself that giving to others more relative had MS. At the HEIGHTS BUDDY often results in blessings greater than the time, the answer was cost. Sometimes I seem to forget that part on no. But now I continue, VOLUNTEER occasion. There have been several times when in part, because I have I have gone to The Heights more from an 20 friends with MS. obligation than a genuine desire to care for others. The rest of life was too busy, I need MARKETPLACE ADS some time for myself, I’m not in the mood, I don’t have time, the time is not convenient, ACCESSIBLE HOME FOR SALE IN EUREKA, MO and on and on. But I can tell you that I have Home is listed for $340,000. See pictures and never invested time that I was sorry to have information at realtor.com. 2 Meramec Bluffs Ct, Eureka, Mo. Contact Melanie Cooper at spent. When I arrive, I am greeted by big RealtyExecutivesPremiere at: 314-393-2872 or 636- smiles on the faces of people genuinely glad to 777-2872. Email: [email protected] see me. My soul can feel the lift! POWER CHAIRS Occasionally, I fall into a mode of self-focused Jazzy 614 heavy duty power chair. Includes charger. complaining about life circumstances, and About 3 years old. Not many hours. Asking $2,000. In can only see what is wrong. I am amazed at good condition. Contact Vern Anderson at 636-394- the smiles and attitudes of people with active 0199. minds, but trapped in bodies that can’t keep up. To engage with people in circumstances Quantum 1113 power chair. Battery is still good, much worse than mine has made me much includes joystick. 5 years old. In good condition. Asking more appreciative of what I have. I am more $500, but negotiable. Contact Linda Jenkins at 314-774- aware of my real desire to value the moments, 1894. PAID ADVERTISEMENT

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CHAPTER NEWS CHAPTER SPRINGS INTO ACTION WALK MS Nearly 6,000 people who want to do something about MS raised more than MAKING CHALLENGE WALK $625,000 in a dozen Walk MS events across MS MEMORIES the region in April and The 12th annual May. Congratulations to our teams that have Dean Team already raised more than $10,000 in spring walks: Automotive Crawlin’ For A Cause, Mighty Movers, Wilson’s Challenge Walk Warriors, Team Scembo and Myelin Hunter. MS enjoyed a walk on the big OSMOND SHINES AT stage on May 31 at Busch Stadium. WOMEN ON THE MOVE About 170 walkers David Osmond, the son of Alan Osmond, participated in the the founder of the famed troupe of singing annual 3 day, 50 mile challenge that brothers, entertained more than 350 people at KATIE ZAGONE HAD A VERY the annual Women on the Move Luncheon at raises more than the Ritz-Carlton in Clayton, MO on May 1. $500,000 every MEMORABLE CHALLENGE The luncheon raised $106,000 and honored year. The walk on WALK MS EXPERIENCE AS Becky Salacki as the Novartis Woman of the field wasn’t the only memorable HER BOYFRIEND PROPOSED Courage. Becky’s husband Joe was diagnosed TO HER AT THE CIRCLE OF with MS in 2002. Last year alone she raised moment of the $30,000. But her tremendous fundraising isn’t weekend as STRENGTH CEREMONY. why she is a Woman of Courage. “Somehow Challenge Walker she finds the words to give me the strength Katie Zagone’s boyfriend proposed to her and courage I need to pick myself up and keep during Saturday night’s Circle of Strength n going,” Joe said. Ceremony. She said yes. GATEWAYMSSOCIETY.ORG | 1-800-344-4867 23

LIVING WITH MS SORTING THROUGH ALTERNATIVE TREATMENTS Sorting through all the available information about multiple sclerosis, potential therapies LEARN MORE ABOUT TELECONFERENCES ON and treatments can be confusing and PAGE 36. FOR MORE ABOUT COMPLEMENTARY intimidating. AND ALTERNATIVE MEDICINE AT That’s why the Chapter provides monthly NATIONALMSSOCIETY.ORG > ABOUT MS > teleconferences. September’s teleconference WHAT WE KNOW ABOUT MS > TREATMENTS > speaker Patricia Kennedy, a Can Do MS COMPLEMENTARY & ALTERNATIVE MEDICINE. Nurse Educator and Programs Coordinator, will discuss complementary and alternative treatments for MS. know that there are things they can do to help manage their MS symptoms aside from taking “I want to give people some tools they could their regular medications. use and make it a toolbox to help them to choose alternative treatments that might “It’s important to confirm and affirm with be appropriate for them,” she said. “I talk them that, in fact, there are things out there to them about how they might evaluate that don’t have to be medications that people the claims they might hear and if they have can do to help them feel better while living validity or not.” with MS,” Kennedy said.

Kennedy will discuss how to work your “We’ll discuss vitamin D, calcium, some of way through all the information and the supplements that are out there that are misinformation that is out there. touted, low dose naltrexone, exercise and yoga, mind and body works, meditation and all of “I try to help them determine if they’re those things that are very beneficial,” Kennedy trying to treat the disease of MS, for which said. “We want them to have the ability to we have no complementary treatments that make choices that are reasonable. Yoga is are effective; or whether they are trying to excellent for spasticity and anxiety. Meditation treat the symptoms they deal with on a daily is another psychological treatment. Tai chi is basis for which there are many things in the used for things like balance. Music therapy complementary world that might help to can be effective for a number of reasons for relieve what they are experiencing,” she said. some people. It is important to remember that these therapies are only beneficial for certain n Kennedy wants people living with MS to people.” 24 MS CONNECTION: SUMMER 2013

FAMILY WEEKEND TOUCH OF NATURE OCTOBER 18-20, MAKANDA, IL The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis in Makanda, just outside of Carbondale, Ill., Touch of Nature offers a secluded and accessible retreat. FAMILY WEEKEND AT TOUCH OF NATURE WASN’T JUST A CHANCE TO GET AWAY FOR KIM CURTIS (LEFT), IT WAS ALSO A CHANCE TO RECONNECT WITH HER FAMILY.

“BEFORE THE WEEKEND, MY DAUGHTER DID NOT UNDERSTAND WHAT I WAS GOING THROUGH. AFTER MEETING OTHER PEOPLE WITH MS, HEARING THEIR STORIES, AND GAINING A NEW PERSPECTIVE ON THE DISEASE, SHE ACKNOWLEDGES THE DISEASE, BUT ALSO ACKNOWLEDGES THAT MS DOESN’T DEFINE WHO I AM.” - KIM CURTIS WEEKEND ACTIVITIES INCLUDE:

• Accessible pontoon boat rides LOOK FOR REGISTRATION TO OPEN • Accessible hayrides IN AUGUST. • Arts & Crafts for all ages • Campfire and s’mores A limited number of fee waivers are available • Accessible horseback and pony rides for this program and/or transportation. • Owl prowling and catch and release fishing • ‘Kids Only’ adventure activities and Kids 5 and younger are free. Registration Halloween fun includes meals, activities and lodging. • MS education sessions and activities PAID ADVERTISEMENT

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TALK MS TAKING THE FIRST STEP WAS THE BIGGEST BY KIM WILLIAMS would have to help CO-FACILITATOR make that change, TALK MS GROUP, COLUMBIA, MO and I decided to become a co- August 9, 2011. It’s not the kind of facilitator. anniversary anyone really wants, but that is the date on which I was diagnosed with MS. I am excited about Three weeks before my 40th birthday, I got the the future of the news. My initial reaction was calm resolve, Talk MS group in followed very shortly by panic, which quickly Columbia. Our AFTER BEING INITIALLY dissolved into information gathering. monthly group has decided we want RESERVED AT HER FIRST Thankfully, in the process of getting to have quarterly TALK MS GROUP MEETING, information, I registered with the National educational KIM WILLIAMS IS NOW A MS Society. When I received my first issue offerings, and of MS Connection and discovered a Talk MS we’re looking CO-FACILITATOR AT HER group here in Columbia, I was hesitant but into alternative GROUP IN COLUMBIA, MO. hopeful, not sure that a support group would pain management be a forum in which I would be comfortable, strategies and FIND A TALK MS GROUP but looking for some source of support. dealing with the NEAR YOU PAGES 28-29. psychological impact At my first meeting, I was quiet and of changes in our bodies and abilities as two observant, listening attentively to other upcoming topics. As a group, we have decided attendees, all of whom had been diagnosed the rest of our meetings will be primarily much longer than I, share their experiences. dedicated to support and sharing. At some point, someone asked me a question. Though I no longer remember what that I’m thankful to now be a source of that question was, I remember the sudden rush support from which I benefitted so of words pouring out of me, questions, fears, greatly when I was diagnosed. While my anxieties about this new part of my life, and I “anniversary” isn’t something I relish, I’m so remember the amazing support I received. grateful for the opportunity to give back by becoming a facilitator, and I’m hopeful to see When our group attendance started to wane, continued growth as we move forward with I watched with sorrow and wondered what our Talk MS group in Columbia. n would happen. I realized if I wanted change, I 28 MS CONNECTION: SUMMER 2013

TALK MS GROUPS Talk MS Groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers who also have a connection to MS. MISSOURI 3/20, 6/19, Camden County Library Christy Bays, cell (573) 480-7932 Camdenton 9/18, 11/20 99 Rodeo Road, Camdenton, MO 65020 [email protected] 6-7 p.m. 3rd Saturday Cape St. Francis Health & Wellness Center, Rm. 1 Sharon (no April meeting) Girardeau 150 S. Auburn, Cape Girardeau, MO 63703 (573) 332-8148 10 a.m. Suzanne (573) 817-4673 or Rusk Rehabilitation Center 3rd Wednesday [email protected] Columbia 315 Business Loop 70 West 6-8 p.m. Columbia, MO 65203 Kim Williams [email protected] Disability Resource Association Crystal City/ 2nd Tuesday Marlene (636) 464-2533 420B S. Truman Bl. Festus 1 p.m. Sharon [email protected] Crystal City, MO 63019 1st Monday Coca-Cola Bottling, Meeting Room Rebekah Walters (573) 808-4066 Jefferson City 6 p.m. 605 Washington, Jefferson City, MO 65109 [email protected] Ralls County Health Department Building 2nd Tuesday Debby (573) 267-3365 New London 405 W. 1st Street 7 p.m. [email protected] New London, MO 63459 Donna at (573) 263-4896 or Rolla Presbyterian Manor NEW Last Thursday [email protected] Rolla GROUP 1200 Homelife Plaza 6:30 p.m. Michelle at (573) 465-0453 or Rolla, MO 65401 [email protected] 3rd Monday St. Peter’s United Church of Christ, Washington Anne (636) 359-6037 6 p.m. 20 East 5th St., Washington, MO 63090 Sally (417) 469-4842 3rd Wednesday Ozark Medical Ctr. Shaw Medical Bldg. 2nd West Plains Dianna dianna.sigert@ 4:30 p.m. Fl. 909 Kentucky St., West Plains, MO 65775 ozarksmedicalcenter.com ST. LOUIS METRO 3rd Wednesday Weber Road Library Affton Linda (314) 544-5623 7 p.m. 4444 Weber Rd, St. Louis, MO 63123 Generation OptiMiStic for 1st Saturday NMSS Office Gateway Area Chapter Michelle (636) 447-5407 people in their 10 a.m. 1867 Lackland Hill Pkwy, St. Louis, MO 63146 20s, 30s & 40s April 14, July 14, Conference Room A/B Barnes-Jewish O’Fallon Debbie at [email protected] Oct. 13, 2-3 p.m. Hospital, St. Peters, MO 63376 3rd Sunday Hardee’s Restaurant, 501 Mid Rivers Mall St. Charles Jim (314) 602-4578 3 p.m. Dr., St. Peters, MO 63376 West County 4th Wednesday Sachs Library 16400 Burkhardt Place Rose Marie Prayer & 6:30-8 p.m. Chesterfield, MO 63017 [email protected] Health GATEWAYMSSOCIETY.ORG | 1-800-344-4867 29

TALK MS GROUPS

ILLINOIS Alton/River 3rd Tuesday The United Presbyterian Church, 2550 Lisa (618) 258-0615 Bend 7-9 p.m. Rock Hill Rd., Wood River, IL 62095 2nd Sunday Belleville/ reconvening in First United Methodist Church Amy (618) 235-4226 O’Fallon September 504 East Highway 50, O’Fallon, IL 62269 2:30 p.m. Central 4th Monday Richland Memorial Hospital Tony (618) 302-1333 Illinois 7 p.m. 800 East Locust St., Olney IL 62450 [email protected] 1st & 3rd Weinheimer Community Center Karen at Highland Wednesday 1100 Main Street 618-830-5681 10:30 a.m. Highland, IL 62249 [email protected] S’myelin Gang 4th Tuesday Christian Church of Litchfield Meredith (217) 556-4418 of Litchfield 6:30 p.m. 131 Yaeger Lake Trail, Litchfield, IL 62056 June 26, 7 p.m. LINC, Inc. Diane (618) 235-8823 Metro East Aug. 28, 7 p.m. #1 Emerald Terrace, Swansea, IL 62226 [email protected] Oct 23. 7 p.m. SPECIALIZED GROUPS Couples Varies, contact Varies, contact for information [email protected] Group for information NMSS Office Creative Art 3rd Saturday [email protected] 1867 Lackland Hill Parkway Experience 10 a.m. [email protected] St. Louis, MO 63146 1st Tuesday in David C. Pratt Cancer Center MS Fun, Michelle (314) 251-6400 Feb., May, Aug. Mercy Hospital Friends & Debbie (636) 579-0264 & Nov. 607 S. New Ballas Rd. Food [email protected] 6 p.m. St. Louis, MO 63147 Veterans Admin. Medical Center Veterans with 2nd Wednesday 1 Jefferson Barracks Dr. Penny (314) 652-4100 ext. 63274 MS 10 a.m. St. Louis, MO 63125 1st Tuesday in CarePartner David C. Pratt Cancer Center Mercy Hospital Stacey (800) 344-4867 Feb., May, Aug. and Family 607 S. New Ballas Rd. [email protected] & Nov. Group St. Louis, MO 63147 6 p.m. 30 MS CONNECTION: SUMMER 2013

STAY HEALTHY WITH MS 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. 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.

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. Applications are accepted year-round, however completed applications will only be approved during January, April, July and October. For more information go to www.gatewaymssociety.org g Stay Healthy with MS.

AQUATICS PILATES TAI CHI YOGA ZUMBA THERAPEUTIC RECREATION SITES ST. LOUIS ADDRESS CONTACT ACTIVITIES OFFERED Bridgeton Community 4201 Fee Fee Road Center Bridgeton, MO 63044 314-739-5599 Carondelet Park Rec 930 Holly Hills Ave Plex St. Louis MO 63111 314-768-9622 50 Gay Avenue Center of Clayton Clayton , MO 63105 314-290-8511 1528 Locust Street 314-436-4100 Downtown YMCA St. Louis, MO 63103 Dragonfly Health Spa & 1272 A Jungermann 636-498-5544 Yoga St. Peters, MO 63376 Edward Jones Family 12521 Marine Avenue YMCA St. Louis, MO 63146 314-439-9622 3390 Pershall Road Emerson Family YMCA St. Louis, MO 63135 314-521-1822 JCC - Marilyn Fox 16801 Baxter Road Building Chesterfield, MO, 63005 314-442-3428 JCC - Staenberg Family 2 Millstone Campus Drive Complex St. Louis, MO 63146 314-432-5700 Jefferson College 1000 Viking Drive Christina Hillsboro, MO 63050 636-789-3000 Kirkwood Family 325 N. Taylor 314-965-9622 YMCA St. Louis, MO 63122 Maryland Heights 2344 McKelvey Road Centre Maryland Heights, MO 63043 314-738-2599 GATEWAYMSSOCIETY.ORG | 1-800-344-4867 31

THERAPEUTIC RECREATION SITES ST. LOUIS CONT. ADDRESS CONTACT ACTIVITIES OFFERED 1900 Urban Drive Mid-County YMCA St. Louis, MO 63144 314-962-9450 Olivette Community 9723 Grandview Drive 314-781-9020 Center St. Louis, MO 63132 800-344-4867 12348 Old Tesson, Suite 220 Linda Mercy Medical Building St. Louis, MO, 63128 314-729-0181 2085 Bluestone Drive Jeff Show Me Aquatics St. Charles, MO 63303 636-896-0999 South City Family 3150 Sublette Avenue YMCA St. Louis, MO 63139 314-644-3100 South County Family 12736 Southfork Road 314-849-9622 YMCA St. Louis, MO 63128 St. Charles County 3900 Shady Springs Lane 636-928-1928 YMCA St. Peters, MO 63376 The Cancer Support 1058 Old Des Peres Rd Kathryn Community St. Louis, MO 63131 314-238-2000 1050 Des Peres Road The Lodge in Des Peres St. Louis, MO 63131 314-835-6150 The Pointe at Ballwin 1 Ballwin Commons Circle Commons Ballwin, MO 63021 636-227-8950 990 Horan Dr Riverchase Fenton, MO 63026 618-343-0067 Washington Four 400 Grand Avenue Rivers Family YMCA Washington, MO 63090 636-239-5704 Webster Groves Family 226 East Lockwood Avenue YMCA Webster Groves, MO 63119 314-962-9622 Wellbridge Athletic 7620 Forsyth Boulevard Club Clayton , MO 63105 314-746-1500 Wellbridge Athletic 998 Woods Mill Road Club Town & Country, MO 63131 636-207-3000 West County Family 16464 Burkhardt Pl YMCA Chesterfield, MO 63017 636-532-3100 3305 Jamieson Ave. Bruce Yoga Saint Louis St. Louis, MO 63139 314-645-9785 233 Lamp & Lantern Village Nancy Z Power Fitness Town & Country, MO 63017 314-378-8639

AQUATICS PILATES TAI CHI YOGA ZUMBA 32 MS CONNECTION: SUMMER 2013

THERAPEUTIC RECREATION SITES MID-MISSOURI ADDRESS CONTACT ACTIVITIES OFFERED Columbia Activity and 1701 W. Ash Street Rec. Center Columbia, MO 65203 573-874-7700 904 Elm St. Suite 210. Linda Elm Street Yoga Columbia, MO 65201 573-657-2614 424 Stadium Boulevard Jefferson City YMCA Jefferson City, MO 65101 573-761-9021 1127 Adams Street Mexico Family YMCA Mexico, MO 65265 573-581-1540 Pilates & Yoga at Chapel 2010 Chapel Plaza Ct. Suite A Hill Columbia, MO 65203 573-446-0224 ILLINOIS ADDRESS CONTACT ACTIVITIES OFFERED 1200 Esic Drive Edwardsville YMCA Edwardsville, IL 62025 618-656-0436 Jerseyville Wellness 400 Maple Summit Rd Jennifer Center Jerseyville, IL. 62052 618-498-6402 700 Logan College Road Chris John A. Logan College Carterville, IL 62918 618-985-3741 1 Town Center Drive Maryville YMCA Maryville, IL 62062 618-346-5600 Mascoutah Senior 227 N. Market Center Mascoutah, IL 62258 618-566-8758 Monroe Physical Therapy & Sports 357 Marketplace Drive 618-539-2020 Medicine Freeburg, IL 62234 O’Fallon Community 284 North 7 Hills Road 618-628-7701 YMCA O’Fallon, IL 62269 101 S Graham Ave # 1 Sarah One-O-One Yoga Carbondale, IL 62901 618-457-8186 18 South High Street Sarah Sukha Yoga Center Belleville, IL 62220 618-236-9642 SOUTHEAST ACTIVITIES OFFERED MISSOURI ADDRESS CONTACT 301 South 5th Street Black River Coliseum Poplar Bluff, MO 63901 573-686-8001 Cape Girardeau 1920 Whitener Street Pat Municipal Pool Cape Girardeau, MO 63701 573-335-4040 2620 N. Westwood Blvd. Mindy PARC Fitness Center Poplar Bluff, MO 63901 573-686-5985 1504 Preacher Roe #2 Vicki Simply Yoga West Plains, MO 65775 417-293-1184 Xtreme Gymnastics 422 West Pine Street Christi Cheer and Dance Poplar Bluff, MO 63901 573-785-3780 PAID ADVERTISEMENT

You’re Know Your Options: invited! Exploring an FDA-approved treatment for MS relapses

Ý The difference between MS relapses and pseudo-relapses

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Register by Monday, July 22, 2013. Location The Old Spaghetti Factory Call 1-877-219-0410 or 17384 Chesterfield Airport Road Chesterfield, MO 63005 visit www.msrelapseprogram.com Date Tuesday, July 23, 2013 Use Program ID # 1380. Check-in 5:30 PM Time 6:00 PM Complimentary meal and parking Presented by Max Benzaquen, MD will be provided. St. Luke's Hospital Chesterfield, MO

Remember: You and a guest are welcome at this FREE educational session. All MS relapse therapy decisions should be made under the guidance of your healthcare professional.

PAID ADVERTISEMENT 34 MS CONNECTION: SUMMER 2013

P Program located Available via Available via CHAPTER CALENDAR in this area. ' telephone ; live-stream DATE PROGRAM/ PG. ST. LOUIS ILLINOIS SOUTHERN MID- SE- EVENT # METRO ILLINOIS MISSOURI MISSOURI June 10 Teleconference 36 ' ' ' ' ' June 15 Research MS 13 P June 20 Connections 13 P June 27 Wellness Network 18 ' ' ' ' ' July 8 Teleconference 36 ' ' ' ' ' July 9 Connections 13 P July 21- Camp Hope 11 P 26 July 25 Wellness Network 18 ' ' ' ' ' August 12 Teleconference 36 ' ' ' ' ' August 22 Wellness Network 18 ' ' ' ' ' August 24 Research MS 13 P Sept. 9 Teleconference 36 ' ' ' ' ' Sept. 12 Connections 13 P Sept. 21 Research MS 13 P Sept. 24 Research MS 13 P Sept. 26 Wellness Network 18 ' ' ' ' '

SHARE WHAT YOU KNOW - MSCONNECTION.ORG Multiple sclerosis destroys connections inside us. It disconnects the mind from the body and people from each other. Maybe, by connecting all of our knowledge, and hope, and experience, we can gain a new understanding of how to move forward.

SHARE WHAT YOU KNOW Find, 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. GATEWAYMSSOCIETY.ORG | 1-800-344-4867 35

[ ] MS Wellness Fair PROGRAM REGISTRATION June 8 COST: $10/PERSON Name______[ ] Teleconference Address______June 10 COST: FREE PROGRAM

City/State/Zip______[ ] Research MS, Columbia, MO June 15 COST: FREE PROGRAM Home phone______[ ] Wellness Network Work phone______June 27 COST: FREE PROGRAM

E-mail______[ ] Teleconference Date of Diagnosis______July 8 COST: FREE PROGRAM Payment Information [ ] Connections, Jefferson City, MO July 9 COST: FREE PROGRAM ( ) Fee waiver requested [ ] Camp Hope, Makanda, IL ( ) Check enclosed payable to NMSS July 21-26 COST: $150/PERSON ( ) Visa ( ) MC ( ) Disc ( ) Am. Ex [ ] Wellness Network Card # ______July 25 COST: FREE PROGRAM

Expiration Date:______[ ] Teleconference Send to: National Multiple Sclerosis Society August 12 COST: FREE PROGRAM 1867 Lackland Hill Parkway, St. Louis, MO 63146 [ ] Wellness Network or Fax to 314-781-1440 August 22 COST: FREE PROGRAM Register online go to www.gatewaymssociety.org, g “Chapter Calendar.” [ ] Research MS, Rend Lake, IL August 24 COST: FREE PROGRAM

Publication of the National Multiple Sclerosis [ ] Teleconference Society September 9 COST: FREE PROGRAM Contact Us at: National MS Society, Gateway Area Chapter 1867 Lackland Hill Parkway, St. Louis, MO 63146 [ ] Connections, Marion, IL 314-781-9020 | 1-800-344-4867 | www.gatewaymssociety. September 12 COST: FREE PROGRAM org MS Connection © 2013 A quarterly magazine published by the [ ] Research MS, Cape Girardeau, MO National Multiple Sclerosis Society, Gateway Area Chapter. September 21 COST: FREE PROGRAM Chapter President • Phyllis Robsham Writers • Joe Cavato • Meghan Freeman • Myles Goble, MD • [ ] Research MS, Maryville, IL Kathi Taylor • Karen Tripp • Henry Vanston • Kim Williams September 24 COST: FREE PROGRAM NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple [ ] Wellness Network sclerosis. Our comments are based on professional advice, published September 26 COST: FREE PROGRAM 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 SAVE THE DATE FOR THESE UPCOMING PROGRAMS Society does not endorse products, services, or manufacturers. Such Family Weekend, Touch of Nature, Makanda, IL names appear here solely because they are considered valuable as October 18-20 information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned. John L. Trotter Research Program November 16 NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO

Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146

LIVING WITH MS MIDWEST TELECONFERENCE SERIES DIAL. LISTEN. LEARN. MY FAMILY HAS MS PROBIOTICS AND MS June 10, 7-8 p.m. August 12, 7-8 p.m. • Learn how MS impacts all family members. • Understand probiotics as an MS treatment • Explore communication methods and strategies option. for dealing with family life challenges. • Hear about MS research projects based on the Presented by: Rosalind Kalb, PhD, Vice President hygiene hypothesis. of the NMSS Clinical Care Network Presented by Dr. Loren Rolak, Director, Marshfield Clinic MS Center WAKE UP! July 8, 7-8 p.m. COMPLEMENTARY AND ALTERNATIVE • Learn why fatigue and sleep issues are two of the MEDICINE FOR MS most common and debilitating MS symptoms. September 9, 7-8 p.m. • Explore medical treatments, strategies and • Learn what CAM therapies are and their benefits behavioral changes that may help. and risks to make informed decisions Presented by: Douglas Schell, MS Certified • Understand the importance of talking with your Nurse, Mid America Neuroscience Institute physician about CAM. Presented by Patricia Kennedy, RN, CNP, MSCN, Can Do MS Nurse Educator and Programs Consultant