MOVING TOWARD A WORLD FREE OF MS | SUMMER • 2011
GATEWAY AREA CHAPTER
A FUNDRAISER FOR MOM Run for homecoming queen raises money and awareness
YOUNG FACES OF MS Pair of teenagers live with MS | 3
GROWING UP FAST
Sisters learn life lessons while caring for mother | 4
YOUTH RESOURCES
NMSS offers programs for youth affected by MS | 14-15
Growing Up Fast PAGE 4
Ask the Professional PAGE 10
M K I S C D C S P U O R G S M K L A T R
K E N E W C O N N E C T I O N S F Q O E
E E O E B I N F E N I L A O R I M U V S
S P X H L A N I O R S I W U N P K A O E
D S M K L A W E G N E L L A H C A T L A
N M N E R R Y A L H E F N Y P S L I U R
E Y E X D A E O L D T C F G C E H C N C
I E T S O U A T G K I O C I N M T S T H
R L A M I E C E P A M B F D D V N O E M
F I N A N C I A L A S S I S T A N C E S
E N O N T S R P T T H N S K T S E E R C
L F D I P A L E L E G C A E E A P K S H
E M W O P A I K X L I R Y M N M R E A A
CROSSWORD PUZZLE
MS Brain Games PAGE 13
T N W R N T N C I E O N R A T L S S L M
THE YOUNG FACES OF MS 3 SISTERS GROW UP FAST
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FATHER & SON FIGHT MS
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HOMECOMING FUNDRAISER 6 7
VOLUNTEER COLUMNS
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ASK THE PROFESSIONAL
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FROM THE BOARD
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NEWS BRIEFS
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MS BRAIN GAMES
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ABOUT PEDIATRIC MS
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PEDIATRIC MS RESOURCES 15
Summer… long sunny days, barbecues, outdoor activities, vacations, and spending time with family and friends. Unfortunately, multiple sclerosis is a “family” disease that doesn’t take a vacation. MS affects spouses, parents, children, extended family members, and others who care for and support those living with the disease. MS can be particularly challenging for young people who take on additional responsibilities to help a parent living with the disease. While we tend to think of MS starting in adulthood, we know that between 2% and 5% of all people with MS have symptoms starting before age 18. Additionally, as Dr. Soe Mar reports in this issue, awareness of pediatric MS over the past five years indicates that somewhere between 5 and 10 percent of people with MS are in their early teens or younger. We are extremely excited to introduce Camp Hope, a new program to support kids ages 8-15 who have a loved one with MS or live with MS. Camp Hope, which will take place July 19-23 at Touch of Nature in Makanda, IL, includes fun summer camp activities as well as educational opportunities to help young people better understand MS and ways to move forward with it in their lives. In this issue you will see stories of young people affected by MS and the unique ways in which some of them have joined the movement and are committed to the stopping the disease, restoring what’s been lost and ending MS forever.
MS BRAIN GAME ANSWERS 16
P.S. Be sure to check out the Happenings section of this issue for information about Relationship Matters, Family Weekend, and other programs designed to support families affected by MS! 2
I E I N P D I B H O A T S A W A L L A P
A LETTER FROM THE PRESIDENT PHYLLIS ROBSHAM
INSIDE THIS ISSUE
CAMP HOPE
A Fundraiser for Mom PAGE 6
E C N E R E F N O C E L E T A C O V D A
1.800.344.4867
R E I N T E R S H I P S A P Y E E E E I
THE YOUNG FACES OF MS Most 18-year-olds are concerned with who they are taking to prom or submitting college applications. But for others, those things are a drop in the bucket compared to other challenges they face.
“Though my parents kept telling me that I wasn’t the only one, I sure did feel like I was the only teenager in the world dealing with MS,” she said. Jamie soon experienced various limitations the disease imposed upon her life. She can no longer stay for long periods of time at school dances, as she often gets tired and overheated. The strobe lights also bother her, but thankfully, the dj’s will turn them off if she asks them to. She is unable to ride roller coasters at Six Flags. She also experiences eye pain, though she is quick to point out that the disease affects each person differently. She attended a camp in Rhode Island last summer, where she met people who shared a lot about the disease, its history and various treatments. Despite being unable to do some things she used to do, Jamie is determined to keep moving forward with her life, enjoying as much as possible.
Jamie Carter and Kim Meriweather have had to make some adjustments in their lives as teenagers living with MS.
“Though my parents kept telling me that I wasn’t the only one, I sure did feel like I was the only teenager in the world dealing with MS.”
right hand, and caused her pain in her legs.
Instead of letting it bring her down, Lisa decided to take action and learn more about it, taking Kim with her to various programs and activities — Jamie Carter MS and regularly volunteering at “I plan on going to college to fundraising events. major in special education to “Kim’s diagnosis was very hard become a special education for me to accept because she’s teacher,” Jamie said. such a sweet and good girl,” Kim Meriweather, a junior Lisa said. “I hated the idea in high school, unfortunately of her dealing with such an can no longer participate in unpredictable disease.” cheerleading and “normal” However, Lisa is determined to teenage stuff. Despite that, she still wants people to treat her the carry on with a positive attitude and help her family through the same. unknown. “I wish people would understand “Although this disease comes that I’m no different than the with uncertainty, I want next person,” Kim said. “This everyone to understand that this disease does not change me; I’m disease should not take over their still the same Kim my friends lives,” Lisa said. “They should know and love.” continue to make plans and Kim’s family is all too familiar pursue their dreams, and check with the impact of MS. Her off items on their bucket list.” great-aunt, Lisa Hollins, was To learn more about pediatric MS diagnosed in 2000. The disease go to nmss.org g About MS g significantly affected Lisa’s eyesight and her ability to use her Pediatric MS.
www.gatewaymssociety.org
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LIVING WITH MS
Meet Jamie Carter, a recent high school graduate who lives with MS. Jamie was diagnosed with MS nearly two years ago and quickly learned about a whole new set of challenges in addition to exams and homework. After her initial shock, she wondered how people were going to treat her and if she was the only teenager out there with MS.
LIVING WITH MS
SISTERS GROW UP QUICKLY WHILE CARING FOR MOTHER Sisters Sarah (22 years old), Hannah (19) and Mary (16) Berg know all too well about multiple sclerosis. Their mother Emma was diagnosed with the disease when Sarah was just three, and the three sisters had to grow up all too quickly as they helped care for their mother until she passed away this January.
got older we were able to let them take on more responsibilities. We just saw it as she’s our mom and she would do the same for us if she could.”
“I always thought we were taking care of what needed to be done,” Hannah said. “Taking care of our mom was such an integral part of our lives that most of the time, we did not even realize we were doing something out of the ordinary. I didn’t know anything different.”
“It wasn’t easy,” Mary said. “We would alternate between who helped her with her medications or feeding so it wasn’t one person all day every day. It was good that there were a couple of us to help.”
The Bergs lost their father in 2001 so they moved in with their aunt Mary Ann Kren who helped to care for their mother. “My sisters and I all agree that even though things have been very difficult we would not take back anything that has happened,” Sarah said. “Everything we have gone through has made us who we are today. It did make us grow up a lot faster than most kids, but I definitely think we all have very strong work ethics because of it.” After Emma was diagnosed, her MS progressed rapidly. Sarah remembers her having difficulty walking, and then needing a walker. Shortly after Mary was born, Emma was primarily in a wheelchair or bedbound. “At any given time someone had to be home with my mom,” Sarah said. “It started off being me and my aunt. As Hannah and Mary 4
The sisters and their aunt teamed up as much as possible and shared duties to help prevent them from getting overwhelmed.
“Taking care of our mom was such an integral part of our lives that most of the time, we did not even realize we were doing something out of the ordinary. I didn’t know anything different.” — Hannah Berg Emma always did what she could for her daughters, even if it was just saying a simple prayer or providing a sweet smile. “She was such a great woman. I would always ask her to say prayers for me if I had a test or something,” Sarah said. “She’d take my hand and say a prayer real quick. I’m a nurse now so it seemed to work.” Hannah was awarded a partial scholarship from the Gateway Area Chapter and just finished her first year at the University of Missouri St. Louis. She recently 1.800.344.4867
Hannah, Mary and Sarah Berg have lived with MS practically their entire lives. They cared for their mother Emma until she passed away this January. spoke at the Chapter’s Women on the Move Luncheon. She is intending a career in child psychology to assist kids, like her and her sisters, who face adult-size issues. “The MS Society has been a huge support in our lives over the years,” Hannah said. “I only hope I can return the favor by actively participating in MS-sponsored events and raise awareness of this disease by sharing our story.” Mary recently finished her sophomore year at Incarnate Word Academy and she is also interested in helping others. “You grow to like taking care of other people and helping them improve their lives,” Mary said. “I have considered working with mentally challenged people. I think they have a different outlook and I like the idea of helping them.”
To learn more about resources for young people go to gatewaymssociety.org g Programs & Services.
FATHER & SON FIGHT MS TOGETHER
A diagnosis of multiple sclerosis certainly changes the equation. It can slow you down and affect the way you walk, drive, work, think and just about everything else.
Stephen Jolly knew all about MS even before he was diagnosed in 2003. MS bullied its way into his life when he was 16 and his father was diagnosed.
Stephen, a father himself who had to retire from the military due to his MS, was naturally worried about his relationship with his youngest son Patrick, 14. He and Patrick have been fighting MS together – literally. They recently earned the degree of black belt in tae kwon do and the two have been training together three times a week for more than two years. “It means a lot to me because my father never had the opportunity to do a lot of fatherly things like this with me,” Stephen said. “It’s a big deal to me.” It also means a lot to Patrick. “It’s pretty neat to be able to do this with him because he might not be able to do it forever,” Patrick said. “So I want to do as much as I can with him.”
“It means a lot to me because my father never had the opportunity to do a lot of fatherly things like this with me.” — Stephen Jolly “I had been struggling for about five years before I was actually diagnosed,” Stephen said. “It hindered my running and they could never really figure out what it was. They finally sent me to Barnes Jewish Hospital in St. Louis, did an MRI and found a lesion.” Stephen has had a couple of exacerbations, but after initially feeling very depressed about the diagnosis, he began treatments and got moving with aquatics and
tae kwon do. He also instructs swimming and martial arts at the local YMCA. “You can’t give up,” he said. “You have to continue to try to do something whether it’s something in the water to get your body going or medicine. It’s vital to just not give up.” While it certainly isn’t easy to do tae kwon do training three times a week, Stephen has some extra motivation — Patrick. “I just want to be there as much as I can for him,” Stephen said. “That’s something that keeps me going. I don’t give up. Sometimes I don’t walk right. I can’t jump up and do any spin kicks, but I just try to keep a positive attitude. I just continue to try to strive on.”
To learn more about staying active with MS go to gatewaymssociety. org g Programs & Services g Wellness & Exercise.
MS =
skating on thin ice “When I coach my son’s hockey team, it’s hard for me to put one skate in front of the other. But, I persevere because MS won’t stop me from being a dad and taking care of my family.” — Eric, diagnosed in 2004
www.gatewaymssociety.org
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LIVING WITH MS
“When I first got diagnosed I fell into a deep depression about it,” Stephen said. “My father had it and I know what MS can lead to. After he got diagnosed it went downhill from there. My dad was a big strong guy and he needed a cane and was bedridden.”
Stephen knew something wasn’t right when he was still in the Army and was having issues with his leg, arm and eyesight.
HOMECOMING NOMINEE RAISES $ AND AWARENESS
Tracy Holmquest was always a fixture at her daughter Ashley Armstrong’s activities. She coached her soccer team, led her girl scout troop and was always actively involved in what Ashley was up to.
FUNDRAISING
“Ashley and I are very close,” Tracy said. “We do everything together.”
to grow up kind of fast.”
Tracy has had several attacks in the past six years and has experienced many MS symptoms, including a period of time when she couldn’t drive due to a loss of vision. While Tracy doesn’t coach Ashley’s soccer team anymore, the two still do most things together.
Then they got thrown for a loop. About six years ago Tracy knew something wasn’t right in her leg, and she was feeling weak. After meeting with her doctor, a neurologist, having an MRI and spinal tap and then a second opinion, Tracy was officially diagnosed with MS on June 9th, Ashley’s 11th birthday.
Last fall, they teamed up on a fundraiser when Ashley was in the running for homecoming queen at Columbia Hickman High School.
“It’s pretty hard to go up and down the soccer field in a wheelchair or with a cane, so it kind of ended my coaching,” Tracy said. “Our lives completely changed. Ashley grew up really fast.”
Ashley and Tracy spent hours in the kitchen baking cookies and brownies to sell. They wrote a letter that they sent to Tracy’s work clients and sold food during lunch at school. In a little less than two weeks, the 10 girls running for homecoming queen raised a total of $18,000 for various charities and Ashley raised a school record – $5,369 for the Chapter.
Ashley and Tracy got educated on what MS was and their family adjusted when they were hit with the diagnosis. “I had never heard of MS,” Ashley said. “A nurse explained to our family what MS was but it wasn’t too kid friendly. It was a lot to deal with at once. We were always on the go, so it was difficult to see her go in the other direction and not be able to do all those things. I had 6
“Our lives completely changed. Ashely grew up really fast .” — Tracy Holmquest
“I was amazed to see what people were willing to do,” Ashley said. “Someone we don’t really know that well sent a check for $200. It was great to see how people responded.” Just having the ability to promote 1.800.344.4867
Ashley Armstrong, inspired by her mother Tracy Holmquest, raised more than $5,000 for the Chapter during her run for homecoming queen. awareness about MS and to raise money for the National MS Society with her daughter has been a thrill for Tracy. “MS has been such a big part of our lives and we’ve had ups and downs,” Tracy said. “We’ve come full circle from not knowing what it was, to getting it, to having a really bad bout with it. I couldn’t be prouder of her. To be able to give back is pretty neat.” Ashley has certainly learned a lot about her mom and herself since her mom was diagnosed with MS. “I’ve learned what an amazing person she is and how I would want to be if I had to deal with something like MS,” Ashley said. “You can live with MS, adjust and grow from what has happened.”
To learn more about Do-it-Yourself events go to gatewaymssociety. org g Fundraising Events g Community Events.
H p o m pe a C
EVENTS
July 19-23 Touch of Nature Makanda, IL
EVENTS
This brand new program is for youth ages 8-15 who have a loved one with MS or live with MS. The camp will include both recreational and educational activities to help young people affected by MS better understand the disease and ways to live with it in their lives.
PROGRAMS & ACTIVITIES
• Swimming • Canoeing • Pontoon boat rides • Adventure hikes • Fishing • Campfires • Hay rides • Evening entertainment • Arts and Crafts and other creative activities • Horseback riding • MS education and sharing groups
REGISTRATION
Each camper must complete an application before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and an invoice. To request an application contact the Gateway Area Chapter at 800-344-4867, opt. 2 or www.mscamphope.org.
ABOUT TOUCH OF NATURE
The camp is just outside of Carbondale, IL, two and a half hours southeast of St. Louis. Touch of Nature is surrounded by the Shawnee National Forest, Crab Orchard National Wildlife Refuge, and Giant City State Park.
PROGRAM FEE
The fee of $140 per camper includes all meals, overnight lodging and activities. Scholarships are available. Call Suzanne at 314-446-4169 or 1-800-344-4867, option 2. This program made possible through charitable grants from: Dana Brown CharitableTrust
www.gatewaymssociety.org
www.MScamphope.org | 800 344 4867
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THROUGH THE EYES PAT MINUTE AND FAMILY
VOLUNTEER
BIKE MS VOLUNTEERS
Our family has always embraced helping others and for my family, volunteering at Bike MS is a tradition. In July of 1990, my son Eric was about to begin his sophomore year in high school and needed community service hours to qualify for the National Honor Society at his high school. On a whim, I opened the phone book to look up the local chapter of the National Multiple Sclerosis Society. I asked the person who answered about volunteer opportunities. Needless to say, she was full of information. She informed us that a bike ride to raise money was coming up in September and help was needed. Eric and I, along with two friends who also needed community service hours, traveled to a hotel in Wentzville at 5:30 a.m. to help load cyclists’ gear into a truck. So it started with four of us helping and every year we picked up more and more volunteers. The ride moved from its Hermann destination to Mexico, Missouri. Because the ride was turned into a circuit around Columbia, Missouri, instead of loading and unloading gear for the cyclists, our family 8
Volunteering for Bike MS has been a family tradition for Pat Minute and her family for 20 years.
“Over these 21 years, four generations have helped make Bike MS a family tradition and we’re proud to be part of the National MS Society.” was asked to set up and run a rest stop. We have been doing that ever since and every year we are able to recruit our own volunteers as we lose some to college, moves across country, or death, as in the case of ‘Granny on the Spot,’ my mom, who volunteered until her death at the age of 84. Our favorite part is the enthusiasm on the part of the cyclists and how they act like little kids when it comes to our homemade cookies every year. We have an army of family and friends who provide 1.800.344.4867
us with our huge supply of cookies that last all weekend. My son is now 36, an actuary for Towers Watson in Clayton, and has two sons of his own. Every year they look forward to donning pirate hats and helping at the rest stop. Over these 21 years, four generations have helped make Bike MS a family tradition and we’re proud to be part of the National MS Society.
To volunteer for Bike MS go to gatewaymsbikeride.org g Volunteer.
OF VOLUNTEERS
As for my daughter, she thoroughly investigated the illness. She and her husband went to a neurologist and
MS = dreams lost, dreams rebuilt
got all the information. No crying, no whining, but a wonderful upbeat attitude of dealing with MS. She has since had two lovely children and lives her life with hope and determination. She involves herself in painting and writing. She has excelled in both, with many awards. Stacey will soon be taking a new oral form of medication called Gilenya. I’m hoping that this big breakthrough will help her, and we will soon find a cure for everyone who has MS. I’m honored and blessed to have her as my daughter. I will do all I can to help create a world free of MS for her and the great people I’ve met who deal with this chronic illness every day.
To learn more about the Deliver A Smile program see page 22 or to go to gatewaymssociety.org g Programs & Services g Deliver a Smile Program.
“Multiple sclerosis upended plans I had, forcing me to face uncertainty. I’ve learned to adapt and focus on what’s truly important to me.” — Susan, diagnosed in 1995, with son Zach
www.gatewaymssociety.org
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VOLUNTEER
Nineteen years ago my daughter, Stacey, was diagnosed with MS. The family was devastated by the news. I couldn’t be of much help since she lived JOAN LOWREY in Colorado, but DELIVER A SMILE I found out all VOLUNTEER the information I could about the illness. I found out it wasn’t life threatening but there was no cure. My fiance’, Buddy, decided with me to take an active part in volunteering, specifically for the Deliver A Smile program.
ASK THE PROFESSIONAL
ASK THE PROFESSIONAL
PATIENT QUESTION: Is MS becoming more prevalent in children? Until recently, pediatric multiple sclerosis was an under recognized condition. Over the past five years, there has been more awareness of MS in children, which accounts for 5-10 % of all MS cases. Although pediatric MS symptoms commonly start during the early teenage years, they can occur in much younger children as well. Initial symptoms can run the spectrum from mild and non-specific including eye pain, blurry vision, prolonged and focal tingling, numbness and weakness to altered mental status and severe encephalopathy. It is important to differentiate pediatric MS from other monophasic demyelinating diseases, infection, migraine, vasculitis, CNS neoplasm, other pediatric metabolic disorders and white matter diseases. Thorough history taking, physical exam and MRI may or may not be sufficient to make an accurate di-
agnosis, and visual evoked potentials, spinal tap and other tests may be required in difficult cases. Some disease modifying therapies available for the Soe S. Mar, MD adult population, including Assistant Professor interferon (IFN)β therapy of Neurology and Pediatrics and Glatiramer acetate, Director, Pediatric seem to be safe and well Headache Center tolerated in children accordDirector, Pediatric ing to small retrospective Onset Demyelinating studies. Unfortunately, we Disease Center do not have any safety data St. Louis Children’s yet for oral MS drugs in Hospital children. Washington University School of Children with MS should be Medicine aware of early depression symptoms and cognitive problems which can have adverse consequences on school performance and daily social life. Obtaining an Individualized Educational Plan (IEP) at school may be necessary to accommodate some children. It is very important to seek help from a counselor, a psychologist or a psychiatrist, as the depressive symptoms can be helped by appropriate therapeutic intervention. Having a positive attitude, compliance with medication, seeking help with depression when necessary, keeping oneself fit with regular exercise and healthy diet are all important in dealing with multiple sclerosis at such a young and tender age.
To learn more about pediatric MS go to nmss.org g About MS g Pediatric MS.
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1.800.344.4867
WHY DID I JOIN THE MOVEMENT?
www.gatewaymssociety.org
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2011 BOARD OF TRUSTEES
Kristen Gully Holton has served on the Chapter’s Board of Trustees for two years and has been an MS Corporate Achiever since 2004. Her father, Lyle, was diagnosed with MS when she was a senior in high school and he also serves on the board. How did your father’s MS affect you? What have you learned I was just graduating high school and preparing to in your experience leave for college and it definitely made me more with the Chapter? nervous to leave. At that point we didn’t really You can get very narknow how he was going to be impacted by the row vision on a disease disease. However, being the role model that he is; when you are only he made sure to put a positive life lesson in his diseeing how it impacts Kristen Gully Holton agnosis and told the kids you have to live every day the person you know. to the fullest because you never know when life will Through the Chapter take a drastic turn on you. I have seen all the various ways the disease can impact a person. It has helped me understand the How did his MS affect your relationship with him? illness inside and out and what a personal battle it is His diagnosis definitely brought us closer together. because it affects each individual so differently. It’s I ended up getting a minor in Risk Management also great to see how much people really care about and Insurance so I could come and work with him. making a difference. For so many people involved We now work together on a daily basis. Since we’re with the Chapter they don’t have a family member together much of the time I see the challenges he or a close friend with MS, but strictly give their deals with every day. I can tell when he struggles to time, money and connections because they have get in and out of the car because of his balance or met someone that is dealing with the disease. weakness in his legs. Without the amount of time we spend together I don’t think I would appreciate What would you tell young people who have a parhow stoically he handles the changes in his physical ent who has been diagnosed with MS? abilities. I have never once heard him complain on Being diagnosed now is so different than being days he doesn’t feel as strong as he would like to. diagnosed 15 or 20 years ago. There have been so And most importantly he never lets MS keep him many advances made in treatments it is unbelievfrom doing what he wants. Getting to see your dad able. An MS diagnosis does not have to be the life never let anything stand in his way is a great life altering/ending diagnosis it used to be. I would lesson. He always pushes through or creates a new say to the kids, try to be understanding and have way to accomplish whatever it is that he wants. patience because so many of the symptoms are not visible to the outside world. At the same time What does serving on the Board mean to you? I think a lot of the reason my dad has had so much It’s great to see exactly where the money is going success with treatments is because his family always that we help to raise. I think it gives us both a lot of kept pushing him to never give up and to do as encouragement to see the amazing advances that much as he could to maintain his old lifestyle. I think are currently being made in the fight against MS. it’s important to find a balance between patience and encouragement.
2,000 GET DIRTY FOR MS
Nearly 800 volunteers are needed to help keep our 3,300 cyclists safe, happy and moving during the Bike MS: Express Scripts Gateway Getaway Ride September 10-11 in Columbia, MO. Volunteers are needed for a variety of roles. Go to 2011 gatewaymsbikeride.org g Volunteer to learn more and to register.
NEWS BRIEFS
More than 2,000 people got down and dirty for MS at the Chapter’s second annual Mud Run MS at Harrah’s St. Louis on Saturday May 7. The event grew from 522 participants and $109,000 raised last year to 2,028 participants and more than $413,000 raised this year!
VOLUNTEERS NEEDED
WOMEN ON THE MOVE LUNCHEON RAISES $80,000 On May 5, the Gateway Area Chapter held its third annual Women on the Move Luncheon at the Ritz-Carlton St. Louis raising more than $80,000 through ticket sales, sponsorship, a raffle and money donated at the event. KMOV News 4’s Claire Kellett served as emcee and author Jacquelyn Mitchard was the guest speaker. The Chapter honored Dr. Thy Huskey, Jennifer Luner and Viola McNeill as the Women of Courage. The Chapter would like to thank its dedicated committee for all of their great work to make the event a success.
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LOOKING FOR A FEW GOOD MEN & WOMEN AT MARINE WEEK Marine Week 2011 is coming to St. Louis, June 20-26, showcasing the unique characteristics of America’s Corps through more than two dozen events where attendees can watch combat demonstrations, climb aboard aircraft and ground equipment. On June 24, the Marines and the Gateway Area Chapter are partnering to assist a single woman living with MS in Foristell, MO. Opportunities are available to work alongside Marines as we help to keep her safely in her home. If you’d like to volunteer, donate materials, or help in another way, please contact Sandra Putney at 314-446-4175. Go to http://www.marines.mil/ community/marineweekstlouis/Pages/home.aspx.
1.800.344.4867
MS CROSSWORD PUZZLE
DOWN
Note: Words Crossing Letter Provided. There are no spaces between two words. These Letters Provided – A B F R 1
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1 This Resource is one of the countless ways to engage other people. It involves being at a Chapter Training program and learning something new about MS.
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2 This is one of several things that a MS Ambassador does; it involves a meeting with sponsors.
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ANSWER KEY ON PAGE 17
A
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ACROSS 3 This resource lets you use your body to creatively to express your involvement with MS. 5 This resource is one of the countless ways to engage other people, it involves ______ ing an MS informational table at your workplace. 6 The Gateway Area Chapter uses this to ensure that you have the resources by providing you with this type of learning program. 9 You want to be an MS volunteer, or you are an MS volunteer in need of Chapter’s many resources on and about MS; all you have to do is just ______. 10 Doing this _____ with family and friends is one of several ways to raise awareness of MS. 14 These ______ are items provided by the Gateway Area Chapter that need to be filled out. 16 Are you interested in spreading awareness, educating others and/or sharing your story about MS? If you would like to get involved then just ____________. 20 Another way to share information online is to create a BLOG on your ___________. 21 By setting up a booth, and sharing information at a Health Fair you ___________. 25 The act of putting the Gateway Area Chapter on your MySpace, FaceBook, or Linkedin is called__________. 27 The volunteers who represent the Chapter through speaking engagements such as community groups, corporations, and media are called the ____________ ____________.
7 To be a successful volunteer, the Chapter wants to ensure that you know and have these to turn to when you need them. 8 The volunteers and resources are mainly for the sole purpose of ______ ______ which is also the topic of this puzzle. 11 This internet resource allows anyone to watch Gateway Area Chapter’s videos. 12 In an effort to engage and encourage others to join the movement to create a world free of MS, you must first ________. 13 To help you learn more about MS, do this with your doctors and other health professionals. 15 This is an awareness resource provided by the Gateway Area Chapter where you can visit and purchase MS specific items to use or give away to others. 17 A resource that is a very good opportunity to discuss MS; is to make this type of treats ___________ for your work place, family, classmates or friends. 18 This type of volunteer _______________, is a group of dedicated volunteers that educate, engage, and encourage others. 19 This is what you would want to do for Bike and Walk MS. 22 The topic of this puzzle is _______. 24 By sharing your knowledge and information with the public you are ____________. 26 When you want someone to join you in something, you do ____________ them.
28 This type of communication over the internet that commonly gives an address and allows you to get mail is _________. 29 Writing on Facebook about MS or your involvement with the Gateway 30 One of the best known Resources you have is to ______ your MS story online> Area Chapter is called _________. 31 To get someone to join you, or to become an MS volunteer, then you would __________ them>
ANSWER KEY ON PAGE 16
www.gatewaymssociety.org
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MS BRAIN GAMES
R
R
4 In the effort to educate and encourage others to join the MS movement to increase MS awareness you should do this _________.
ABOUT PEDIATRIC MS
LIVING WITH MS
Although multiple sclerosis occurs most commonly in adults, it is also diagnosed in children and adolescents. Estimates suggest that 8,00010,000 children (defined as up to 18 years old) in the United States have multiple sclerosis, and another 10,000-15,000 have experienced at least one symptom suggestive of MS. Pediatric MS Facts: Alexis, diagnosed in 2009, • Studies suggest 2 to 5% of all people with MS have a history of with mother Mary symptom onset before age 18. • Diagnosis in children is more challenging than in adults due to the frequency of other childhood disorders with similar symptoms and characteristics. • Increasing evidence suggests that the disease-modifying therapies (FDA approved for use in adults) are safe and well tolerated in children; however large clinical trials are needed to assess treatment efficacy. • Most symptoms of MS seen in children are similar to those seen in adults. There are, however, symptoms experienced by children that are not typical in adults, such as seizures and mental status changes (lethargy). • Increasing evidence suggests a slower disease course in children with MS, but significant disability can accumulate at an earlier age compared to individuals with adult onset MS. • Psychosocial consequences of MS in children and adolescents may affect academic performance, family relations, and specific adolescent issues including self-image and relationships with peers. An evaluation by a trained professional can help determine appropriate interventions. • Pediatricians may not be familiar with MS because they are not expecting to see it in children. Because of the critical need to better understand pediatric MS, the National MS Society established the first-of-its-kind network of Pediatric MS Centers of Excellence. Each of the six centers offers comprehensive services through multidisciplinary teams including pediatric and adult MS experts. Financial assistance is available for travel, accommodations and care so families can access these services, regardless of their ability to pay or proximity to one of the centers. Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama Birmingham, AL 35233 Phone: (205) 996-7633 Web: www.uab.edu/cpodd UCSF Regional Pediatric MS Center San Francisco, CA 94117 Phone: (415) 353-3939 Web: www.ucsfhealth.org/pedsms
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Partners Pediatric MS Center at the Massachusetts General Hospital for Children Boston, MA 02114 Phone: (617) 726-2664 Web: partnersmscenter.org Mayo Clinic Pediatric MS Center Rochester, MN Phone: (507) 293-0378 Web: www.mayoclinic.org/ pediatric-center
1.800.344.4867
Pediatric MS Center of the Jacobs Neurological Institute Buffalo, NY 14222 Phone: (877) 878-7367 Web: www.pedms.com National Pediatric MS Center at Stony Brook University Hospital Department of Neurology Stony Brook, NY MS,CPNP Phone: (631) 444-7802 Web: www.pediatricmscenter.org
SOCIETY OFFERS RESOURCES FOR KIDS WITH MS Although MS is typically thought of as an adult-onset disease, some children and teens have been diagnosed. Children and Teens with MS: A Network for Families offers educational and psychosocial support for families living with MS. The Network is a collaborative effort of the National MS Society and the MS Society of Canada. Together we recognize the unique needs of these families. Students with MS & the Academic Setting: A Handbook for School Personnel is an informational guide for school staff working with children and teens with MS. The handbook includes a discussion on the issues children and teens with MS may face, recommended accommodations and modifications in the school setting, transition issues, as well as basic information on MS.
Mighty Special Kids—An Activity Book for Children with MS An activity book for children ages 5-12 with MS. The book includes educational games, activities, and age-appropriate articles to help children better understand their diagnosis. Virtual Community for Parents The Network connects parents through a moderated listserv where they can share concerns and information. Information and Referral You can receive information about MS and local resources from your chapter by calling 1-800-344-4867. Pediatric MS: Understanding for Today, Hope for Tomorrow A 20+ minute DVD that provides an overview of pediatric MS and how the Society is addressing the needs through programs and services and the Network of Pediatric MS Centers of Excellence. The piece includes interviews with three families with a child with MS, healthcare professionals from the six Pediatric MS Centers of Excellence, and Society staff and volunteers. The DVD is hosted by Society volunteer Channing Barker, a young adult who was diagnosed with MS in her teens. Registration Information For information specific to pediatric MS or to register for the Network, call 1-800-344-4867 or email childhoodms@ nationalMSsociety.org.
CALL TO ACTION
Studies show that early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with multiple sclerosis. The National MS Society’s medical advisors recommend that people with MS talk with their health-care professional about using one of these medications and about strategies and effective treatments to manage symptoms. The National MS Society is committed to ensuring that people with MS have the information and quality care they need to live healthy, productive and independent lives. If you or someone you know has MS, please contact the National Multiple Sclerosis Society today at www.nationalmssociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.
TOLL FREE NUMBER 1 800 344 4867 www.gatewaymssociety.org
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LIVING WITH MS
The Network currently offers the following resources specifically for this special population: Parents’ Handbook Kids Get MS Too: A Handbook for Parents Whose Child or Teen has MS is an informational handbook containing a wide range of information pertaining to pediatric MS. The handbook was written by specialists in childhood MS.
START YOUR OWN EVENT AND JOIN THE MOVEMENT
Your organization can make the difference! Every year individuals, organizations, clubs, and businesses rally together to help in the joining the movement towards a world free of MS. These “Do-itYourself” or DiY events are run independently from the Chapter. The possibilities have become endless. From Golf Tournaments to BBQ’s, dances to scavenger hunts, company dress down days to dining for MS, anyone can join the movement. By coordinating your group’s very own event, you help bring research and programs to over 400,000 people in The United States. This is how…
MS CONNECTION
Step 1: Determine what type of event you would like to put together. Step 2: Review our Event Guidelines. Step 3: Complete a Do-it-Yourself Event Registration Form online or print the form and submit it to the Gateway Area Chapter for review. Step 4: Begin Planning Your Event! Contact Amanda at (314) 781-9020 or 800-344-4867 at amanda.haught@gatewaymssociety.org. Upcoming DiY Events MS 10K Run Saturday, July 2, 7- 8 a.m. St. Louis Community College Meramec MS CROSS WORD PUZZLE ANSWER KEY It starts at Big Bend Rd., makes a scenic V A rolling loop through Kirkwood, and I T A T T O O finishes on the campus of Meramec S H O S T CC. To register, go to www.active.com T R A I N I E and search “MS 10K” or print off the E T N R S I S C U S D A S K attachment and mail the entry to MO O R I Y Running Race Mgmt., P.O. Box 230112, V O L U N T E E S F O R M S St. Louis, MO 63123. Registration is $25 E R A R M U S if received by June 11; $30 June 12-25, S A A F A C S T S E H W N A U O $40 June 26-July 2. 1
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Personalized Wine Glasses What better way to celebrate a special occasion than with a glass of wine. B Creations will create a personalized wine glass to commemorate the special event. B Creations donates a percentage of its proceeds from every glass created to the Chapter. Go to bcreationsglasses.com 16
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happenings Progressive MS Symposium
Saturday, June 18, 2011 10 a.m. - 2 p.m.
COST:$10/person. Fee waivers available. Live at St. Louis location. Via live video to all locations.
LOCATIONS
ST. LOUIS MID-MISSOURI Hilton Frontenac Activity Recreation 1335 S. Lindbergh Blvd. Center Saint Louis, MO 1701 West Ash Street 63131 Columbia, MO 65203 CAPE GIRARDEAU Drury Lodge METRO EAST 104 S. Vantage Drive Four Points Sheraton Cape Girardeau, MO 319 Fountains Parkway 63701 Fairview Heights, IL 62208 SOUTHERN ILLINOIS Holiday Inn 2300 Reed Station Pkwy Carbondale, IL 62901
Kim, diagnosed in 1986
Relationship Matters Cape Girardeau, MO
Saturday, June 25 - Sunday, June 26 CONFERENCE LOCATION: Drury Lodge 104 South Vantage Dr. Cape Girardeau, MO 63701 OVERNIGHT LOCATION: Victorian Inn and Suites 3265 William St. Cape Girardeau, MO 63701 Cost: $40 per couple Facilitator: Karen Tripp Licensed Professional Counselor All lodging, meals and workshop activities are included in the registration fee. Limited fee waivers are available for registration fee and transportation. The National MS Society invites you and your spouse/partner to a workshop for couples living with the challenges of MS. This dynamic program will help you: • Break patterns that prevent effective communication • Apply successful problem-solving techniques • Work as a team to manage MS and your relationship
www.gatewaymssociety.org
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HAPPENINGS
This program will directly address the issues of those living with progressive MS and research in the field of progressive MS. Program includes: • Speaker: Dr. Lauren Krupp, Neurologist, CoDirector, MS Center at Stony Brook University in New York • Lunch • Resource Fair • Breakout Sessions: Each site will have guest speakers on bowel & bladder, caregiver support, physical and occupational therapy
Gateway Area Chapter
HAPPENINGS
Hope & Healing — A Creative Art Program Series Persons with MS face a multitude of physical, mental, and emotional challenges on a daily basis. For many individuals, their disease is constantly changing and affects their selfesteem and management of all facets of their lives. The transition from “what was” to “what is” can be overwhelming. Creative art can enhance the lives of those living with MS. Creative art activities with hands-on participation (no previous experience is necessary):
Creative Art Therapy Dinner Program Friday, July 22 6-8:30 p.m. The Heights Community Center 8001 Dale Avenue Richmond Heights, MO 63177 If you are unable to attend the Creative Art Program Series but would like to learn about creative art therapy and how you can incorporate art into your life, please join us for this free interactive dinner program. Guest speaker: Nancy Monson, freelance writer and editor and life-long crafter. (register separately from series)
• Beading – learn to make jewelry and create a bracelet to take home • Collage – express yourself in times of change • Watercolor - experience playing with watercolor • Funky knit scarf - beginner project hosted by Nancy Monson. Nancy is a freelance writer and editor and a life-long crafter. All participants will receive her book, Craft to Heal, Soothing Your Soul with Sewing, Painting, and Other Pastimes, a self-help book about the stress-reducing benefits of pursuing a hobby you love to all participants. Saturdays, June 25, July 9, July 16, July 23 (no class July 2) 10 a.m. – Noon National MS Society office 1867 Lackland Hill Parkway St. Louis, MO 63146 Registration Deadline: June 17 Cost of series: $20 (includes all art supplies)
Fee waivers available for program and transportation. *Group size limited to 30 individuals living with MS For outcome measurements, must attend ENTIRE series (4 programs total) 18
1.800.344.4867
happenings Christmas in July — Deliver A Smile
How can YOU help? The program has three real needs. First of all, the Chapter needs help identifying individuals who may benefit from this program. Secondly, the Chapter needs financial support to purchase gifts for the program. Specifically, the Chapter needs gift cards to stores like WalMart, Target and Amazon.com. Cash donations are also gladly accepted. Finally, we need help wrapping and delivering the gifts to someone in your immediate area. We need volunteers like YOU to help deliver the smiles!
What are we asking of you? If you would like to get involved and make a difference in the life of someone with MS through this program, please contact Diana at800-344-4867, (314) 781-9020, option 2 or by email at diana.post@gatewaymssociety.org.
HAPPENINGS
During the months of July and December, Chapter staff and volunteers schedule and make friendly visits to home-bound individuals with MS. Participants bring a “little something” for the person living with MS. Staff and volunteers deliver personalized items that have been specifically requested by individuals.
Imani, diagnosed in 2006
New Connections Come meet with other people who have been newly diagnosed with MS in the past five years or who have recently moved to the area. Staff members from the Chapter will be attending to let you know what we do and how we can help. August 11 Location: TBA Edwardsville, IL Time: 6:30-8:30 p.m. Registration Deadline: August 1 This program will feature guest speaker Dr. Barry Singer. A three-course dinner will also be included with this free program. Space is limited so make your reservation today!
www.gatewaymssociety.org
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Gateway Area Chapter
HAPPENINGS
Camp Hope
This brand-new program is just for youth ages 8-15 who are affected by MS. It includes recreational and educational activities to help young people better understand the disease and ways to live with it in their lives. Programs and activities will be available for children living with MS and for children who have a parent or other relative living with MS. Campers are encouraged to bring a guest to share in the fun! Activities include: • Swimming, canoeing, and pontoon boat rides • Adventure hikes and fishing • Campfires, hay rides, and evening entertainment • Arts and crafts and other creative activities • Horseback riding • MS education and sharing groups July 19-23 Touch of Nature Environmental Center Southern Illinois University 1206 Touch of Nature Road Makanda, Illinois 62958 (near Carbondale)
Research MS OBJECTIVES: MS specialists will provide up-to-date information on: • Research & new therapies • New data on disease modifying medication for MS
FREE PROGRAM INCLUDES LUNCH
JEFFERSON CITY, MO
Saturday, August 20, Noon - 2 p.m. Capitol Plaza Hotel 415 McCarty Jefferson City, MO 65101
REND LAKE, IL
Saturday, August 20, Noon - 2 p.m. Rend Lake Resort & Conference Center 11712 East Windy Lane Whittington, IL 62897
Program Fee: $140 per child. The fee includes all meals, overnight lodging, and activities.
CAPE GIRARDEAU, MO
Registration: Each camper must complete an application before being accepted to Camp Hope. Upon acceptance, you will receive detailed information and a billing invoice. Call 800-344-4867 option 2 or visit mscamphope.org. The deadline is June 19.
FAIRVIEW HEIGHTS, IL
This program made possible through charitable grants from: Dana Brown CharitableTrust
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Saturday, August 27, Noon - 2 p.m. Drury Lodge 104 South Vantage Drive Cape Girardeau, MO 63701
Saturday, August 27, Noon - 2 p.m. Four Points Sheraton 319 Fountainview Parkway Fairview Heights, IL 62208
1.800.344.4867
happenings Has Multiple Sclerosis Affected You?
Join us for this free and interactive live event for people with MS, their families and carepartners.
HAPPENINGS
At these free programs you will: • Interact with a leading MS expert and others living with MS. • Learn about a therapeutic option for MS. • Enjoy complimentary food. THREE DATES THURSDAY, JULY 14, ST. LOUIS, MO Location: St. Louis Marriott West 660 Maryville Centre Drive St. Louis, MO Time: 7 p.m. THURSDAY, AUGUST 18, COLUMBIA, MO Location: Holiday Inn Executive Center 2200 I-70 Drive Columbia, MO 65203 Time: 7 p.m. MONDAY, SEPTEMBER 12, ST. LOUIS, MO Location: St. Louis Marriott West 660 Maryville Centre Drive St. Louis, MO Time: 7 p.m. REGISTRATION: Online: ampyraseminars.com Phone: 1-800-397-8082
Tracey, diagnosed in 2005
Explore Learn Online videos: Basic Facts of MS, Treatments, Symptom Management, Healthy Living, Progressive MS, Research, Family Life and Relationships, Employment and Insurance, and En Español. On the first and third Thursdays of each month, two new videos are added. An update on disease-modifying therapy is generally added once a year. In a hurry? Visit Daily Minutes. In 60 seconds you’ll get some basics on Who Gets MS, What is Myelin, What is Relapsing-Remitting MS– and more. Click on the Daily Minute link in the blue box at nationalMSsociety.org/ mslearnonline.
PA I D A D V E R T I S E M E N T
www.gatewaymssociety.org
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Gateway Area Chapter
John L. Trotter Research Program Thursday, September 22 7-9 p.m.
HAPPENINGS
About D r . M i c h a e l R a c k e DoubleTree Hotel and Conference Center 16625 Swingley Ridge Road Chesterfield, MO 63017 KEYNOTE SPEAKER:
Dr. Michael Racke Professor and Chairman of Neurology The Helen C. Kurtz Chair in Neurology Department of Neurology, The Ohio State University Medical Center Columbus, OH
LEARNING OBJECTIVES:
• Understanding new drugs and technology. • Learn about new therapies and treatments being developed and how they affect the immune system in different ways. • Understanding different aspects of the immune system and how it works • Reviewing the science and understanding the risks in taking a new drug or changing treatments.
Dr. Racke earned his medical degree from the University of Medicine and Dentistry of New Jersey Medical School. He completed his neurology training at Emory University in Atlanta and a neuroimmunology fellowship at the National Institutes of Health. Dr. Racke won a Harry Weaver Neuroscience Junior Faculty Award from the National MS Society and the Young Investigator in Multiple Sclerosis of the American Academy of Neurology and Research Foundation while working at Washington University in St. Louis. He served as Vice Chairman of Neurology Research and professor in the Center for Immunology at the University of Texas Southwestern Medical Center. In July, 2006 he became the chair of neurology at The Ohio State University School of Medicine.
His research focuses on understanding how inflammation gets established in the central nervous system and developing novel therapeuCost: $15 (fee waivers are available) tics by studying the animal model experimental Early Registration Discount: $12.50 (by August 27) autoimmune encephalomyelitis. His research also Registration Deadline: September 17 centers on the pathogenesis of MS. Call the Chapter about transportation options. You can also join via teleconference/live stream! He has served on scientific advisory committees A call-in number will be provided when you for the National MS Society, National Institutes of register. There is no fee for the teleconference. Health, and the Hertie Foundation as well as on several editorial boards. 22
1.800.344.4867
happenings Family Weekend Touch of Nature October 14-16 Makanda, IL (near Carbondale) HAPPENINGS
The colors of fall will welcome you and your guests to a relaxing and rustic family getaway. Located approximately 2-1/2 hours from St. Louis in Makanda, just outside of Carbondale, Ill., Touch of Nature offers a secluded and accessible retreat. WEEKEND ACTIVITIES INCLUDE: g Accessible pontoon boat rides g Accessible hayrides g Arts & Crafts for all ages g Campfire and s’mores g Accessible horseback and pony rides g Owl prowling and catch and release fishing g ‘Kids Only’ adventure activities and Halloween fun g CarePartner social programs g ‘How to Stay Active’ class for people with MS Early registration (before Oct. 5) $70/per person Regular registration (after Oct. 6) $85/per person Live in the area? Come join us for the day! Day only option: $25 per person (available for Saturday or Sunday). A limited number of fee waivers are available for this program and/or transportation. Please fill out the registration form to request a waiver. Kids 3 and younger are free. Registration includes meals, activities and lodging. Registration Deadline: October 10 www.gatewaymssociety.org
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Gateway Area Chapter
TALK MS GROUPS MISSOURI Cape Girardeau
HAPPENINGS
Columbia
NEW Location!
Crystal City/Festus Fulton Jefferson City New London St. Charles Washington West Plains
3rd Saturday 10 a.m. Call for Dates 2nd Tuesday 1 p.m. 1st Wedneday 3 p.m. 1st Monday 6 p.m. 2nd Monday 7 p.m. 3rd Sunday 3 p.m. 3rd Monday 6 p.m. 3rd Wednesday 5 p.m.
St. Francis Health & Wellness Center Healing Arts Building, Conference Room 150 S. Auburn, Cape Girardeau, MO 63703 Rusk Rehabilitation Center 315 Business Loop 70 West Columbia, MO 65203 Disability Resource Assn. 420B S. Truman Bl., Crystal City, MO 63019 At Home Real Estate 2606 North Bluff, Fulton, MO 65251 Coca-Cola Bottling, Meeting Room 605 Washington, Jefferson City, MO 65109 Call for Location Hardees Restaurant at Mid Rivers Mall Dr. and Mexico Rd. St. Peter’s United Church of Christ, 20 East 5th St., Washington, MO 63090 Ozark Medical Ctr. Shaw Medical Bldg. 2nd Fl. 909 Kentucky St., West Plains, MO 65775
Sharon (573) 332-8148 Denise (573) 442-8822 denise.falco@gatewaymssociety.org Marlene (636) 464-2533 Sharon webradleys@yahoo.com Cindy (573) 220-0177 Chris (573) 645-0130 cdale@mobankers.com Debby (573) 267-3365 mlrdsr@rallstech.com Jim (636) 940-1521 Anne (636) 359-6037 Charline (417) 469-1068 Sally (417) 469-4842
ST. LOUIS METRO Affton Mid-St. Louis County West County Generation OptiMiSTic
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3rd Wednesday 7 p.m. 2nd Saturday 1:30 p.m. 2nd Tuesday 7 p.m. 1st Saturday 10 a.m.
Weber Road Library 4444 Weber Rd, St. Louis, MO 63123 St. John Rehab Hospital, 14561 North Outer Hwy 40, St. Louis, MO 63017 Living Word United Methodist Church 17315 Manchester Rd., Wildwood, MO 63038 NMSS Office Gateway Area Chapter 1867 Lackland Hill Pkwy, St. Louis, MO 63146
1.800.344.4867
Linda (314) 544-5623 Kevin (314) 841-3755 Walt (636) 256-9171 Barb (636) 227-4889 Michelle (636) 447-5407
happenings TALK MS GROUPS ILLINOIS 3rd Tuesday 7-9 p.m. 2nd Sunday Belleville/ O’Fallon 2:30 p.m. Monday Central Illinois NEW 4th GROUP! 7 p.m. Tuesday S’myelin Gang of Litchfield 4th 6:30 p.m. June 22 Metro East August 4
Lisa (618) Amy (618)258-0615 235-4226
2nd Tuesday 5 p.m.
The United Presbyterian Church, 2550 Rock Hill Rd., Wood River, IL 62095 First United Methodist Church 504 East Highway 50, O’Fallon, IL 62269 Richland Memorial Hospital 800 East Locust St., Olney IL 62450 Christian Church of Litchfield 131 Yaeger Lake Trail, Litchfield, IL 62056 LINC, Inc. 120 East A Street, Belleville, IL 62220 Heartland Regional-Medical Center Classroom #2 3333 West DeYoung, Marion, IL 62959
Men’s Chat
Last Tuesday 7 p.m.
Telephone group
Joe S. jsalacki@sbcglobal.net
MS Fun, Friends & Food
August 2 6 p.m.
Alton/River Bend
Southern Illinois
Amy (618) 235-4226 Tony (618) 392-7920 Meredith (217) 556-4418 Diane (618) 235-8823 Earhart500@aol.com Crissy (618) 937-2935
SPECIALIZED GROUPS Michelle (314) 251-6400 Debbie (636) 579-0264 debrafriends@hotmail.com
CarePartner and Family Group
David C. Pratt Cancer Center St. John’s Mercy Medical Center 607 S. New Ballas Rd., St. Louis, MO 63147 Admin. Medical Center 2nd Wednesday Veterans 1 Jefferson Barracks Dr., St. Louis, MO 10 a.m. 63125 Office Gateway Area Chapter 3rd Wednesday NMSS 1867 Lackland Hill Parkway, St. Louis, MO 63146 7 p.m.
Progressive MS Chat
First Thursday
Mary DuParri Register by calling 800-344-4867
Veterans with MS
NEW
GROUP! 2 p.m.
Group meets via telephone.
Penny (314) 652-4100 ext. 63274 Suzanne (800) 344-4867 suzanne.carron@gatewaymssociety.org
Upcoming Meet & Greet Dinner Programs
Hannibal/New London Mid-St. Louis County Chapter staff will be attending to let you know June 28, 6 p.m. August 13 at 6 p.m. about National MS Society programs, services, Fiddlestiks The Old Spaghetti events and volunteer opportunities available Food & Spirits Factory to you. This is also a great way to meet other 8945 Highway 36 17384 Chesterfield people living with MS and to learn about Talk MS Airport Rd. groups in your area. There is no fee to attend but Hannibal, MO 63401 Chesterfield, MO 63005 you must register, so RSVP today at 1-800-3444867. Feel free to tell a friend or bring a guest. www.gatewaymssociety.org
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Gateway Area Chapter
MS Aquatics
ST. LOUIS METRO AREA Bridgeton Community Center Contact: Cole (314) 739-5599
Carondelet Park Rec Plex Contact: Shannon (314) 768-9622
HAPPENINGS
Center of Clayton Contact: Diane (314) 353-4960 Chesterfield JCC Contact: Sheena Koster (314) 442-3495
DIVE IN!
Everyone can participate in an aquatics class. You don’t need to know how to swim – you just need the desire to improve yourself, have fun, and make friends.
Why aquatics?
g The buoyancy of the water reduces your body weight, meaning less stress on joints! g Better cardiovascular fitness is gained using the resistance of the water! g Water keeps you cool and guards against fatigue, so you can exercise longer! The Chapter offers financial assistance for attendance and transportation to therapeutic recreation programs.
Emerson Family YMCA (North County) Contact: Georgia/Chris (314) 521-1822 Hazelwood Community Center Contact: Jill A. (314) 731-0980 Jefferson College (Hillsboro) Contact Christina C.(636) 942-3000 x382 Mid-County YMCA (Brentwood) Contact: Sandi (314) 962-9450 Show Me Aquatics Contact: Carolyn (636) 896-0999
Columbia Activity & Recreation Center Contact: Janel (573) 874-7460 x7700 Jefferson City YMCA Contact: Erica Hart (573) 761-9021 Mexico Family YMCA Contact: Consuelo (573) 581-1540
SOUTHERN AND METRO ILLINOIS
Edwardsville YMCA Contact: Pam (618) 656-0436 Maryville YMCA Contact: Julie (618) 346-5600 John A. Logan College Contact: Chris G. (618) 985-2828 x8504 Jerseyville Wellness Center Contact: Jennifer R. (618) 498-3500
South City Family YMCA Contact: Rich (314) 644-3100
O’Fallon Community YMCA Contact: (618) 628-7701
St. Charles County YMCA Contact: Joyce (636) 928-1928 x250
SOUTHEAST MISSOURI
The Pointe at Ballwin Commons Contact: Leslie or Adam (636) 227-8950 Washington Four Rivers Family YMCA Contact: Ann (636) 239-5704 Wellbridge Athletic Club –( Clayton) Contact: Trudy C. (314) 746-1500 x1551 Wellbridge Athletic Club – (Town & Country) Contact: Abby (636) 207-3000
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MID-MISSOURI
1.800.344.4867
Black River Coliseum Contact: Mandi E. (573) 686-8009 Cape Girardeau Municipal Pool Contact: Pat Grebe (573) 335-4040
To register for an aquatics, yoga or Tai Chi class, please call the number listed. You do not register directly through the Chapter.
happenings
Yoga Sites ST. LOUIS:
Columbia, MO NMSS Office Yoga & Tai Chi 4816 Santana Circle
Tai Chi Mondays: 10-10:45 a.m. Columbia, MO 65203 Instructor: Mary Cruise
Contact: Kimberly at 1-800-344-4867 or kimberly.wilcox@gatewaymssociety.org www.gatewaymssociety.org
MID-MISSOURI Elm Street Yoga 904 Elm St. Suite 210, Columbia, MO 65201 www.elmstreetyoga.com Tuesdays, 1:15-2:15 p.m. Thursdays, 4:30-5:30 p.m. Instructor: Linda Lutz Cost: $35 for 5 classes Class size limited to six people Contact: Linda (573) 441-8566 or lindalutz@mac.com
SOUTHEAST MISSOURI PARC Fitness Center 2620 N. Westwood Blvd Poplar Bluff, MO 63901 Phone: (573) 686-5985 Mondays, 7 - 7:45 p.m. Wednesdays, 6 - 7:30 p.m. (slower paced class) Walk-ins welcome! Instructor: Mindy Matthews Yoga at the Firm 1610 Freedom Dr. West Plains, MO 65775 Instructor: Vicki Hogan Contact: Vicki (417) 293-1184 or the Firm at (417) 257-7800 Cost: $40 for an 8-week session
Yoga Fridays, 11:45 a.m. - 12:45 p.m. Instructor: Linda Lutz Cost: $35/5 classes or $10/class 27
HAPPENINGS
Dragonfly Health Spa & Yoga 1272 A Jungermann Road Olivette Community Center 9723 Grandview Drive, St. Louis, MO 63132 St. Peters, MO 63376 Call: 636-498-5544 Cost: $10/ class Mondays Call: 314-781-9020 or 1-800-344-4867 Restorative Yoga: 10-11 a.m. Thursdays Gentle Chair/Floor Yoga: 11:30 a.m. - 12: 30 p.m. Noon - 1:30 p.m. Core Strengthening Yoga: 6:30-7:30 p.m. (Iyengar Yoga Class) Tuesdays Instructor: Kathy Simon Open Level Yoga: 6-7 p.m. Open Level Yoga: 7:15-8:15 p.m. Yoga St. Louis Wednesdays Iyengar Yoga Class Meditation Class: 6:30-7:30 p.m. 3305 Jamieson Ave. Thursdays St. Louis, MO 63139 Open Level Yoga: 7-8 p.m. Call: 314-645-9785 Saturdays www.iyengaryogastlouis.com Open Level Yoga: 9-10 a.m. St. John’s Mercy Medical Building METRO & SOUTHERN ILLINOIS 12348 Old Tesson Rd. , St. Louis MO Instructor: Linda Whitney Sukha Yoga Center Call: 314-729-0181 18 South High St., Belleville, IL 62220 Instructor: Sarah Fraser Tuesdays Cost: call for class times/fees February 15 - April 12 Contact: Sarah (618) 236-9642 April 19 - June 7 Web site: www.sukhayogacenter.com 5:30-6:30 p.m. (Beginner) One-O-One Yoga 7-8 p.m. (Gentle) 101 South Graham Carbondale, IL 62901 Contact: Sarah Miller (618) 457-8186 Thursdays Cost: Call for class times/fees February 17 - April 14 Web site: www.center101yoga.com April 21 - June 9 Edwardsville YMCA 9:30-10:30 a.m. (Beginner) 1200 Esic Drive, Edwardsville, IL 62025 618-656-0436 Saturdays Maryville YMCA April 23 - June 11 1 Town Center Drive, Maryville, IL 62062 9-10 a.m. (Beginner)** 618-346-5600 Cost: $54 for 6 weeks, $72 for 8 weeks.
Gateway Area Chapter
HAPPENINGS
Beat the Heat The hot days of summer in Missouri and Illinois are a time to take extra precaution in everyday activities as heat may increase symptoms for some people living with MS. Overheating can cause a pseudoexacerbation, a temporary aggravation of MS symptoms that have occurred before. Taking measures to cool the body to a normal temperature will relieve these symptoms. Here are some ways for you to beat the heat! Strategies for Staying COOL: • Stay in an air-conditioned environment as much as possible when temperatures and humidity are high. • Take a cool shower or bath to “pre-cool” before exercise. • Wear short-sleeved, loose fitting clothing. Moisture wicking fabrics are beneficial. • Drink extra water especially during extended times outside. • Modify your exercise routine to be outside during cooler times of the day or consider exercise in a cool pool. • Utilize cooling devices such as vests and neck wraps. Plan ahead for extra ice packs for longer activities. • Purchase an air conditioner. It may be tax deductible with proper documentation from your doctor. RESOURCES: Multiple Sclerosis Association of America (MSAA) for Cooling Vests: www.msassociation.org/programs/cooling United Way 2-1-1: www.211.org or dial 2-1-1 National MS Society Information Resource Center: 1-800-344-4867, option 1 28
1.800.344.4867
happenings Dial. Listen. Learn.
Upcoming topics include: June 23 Alternative Massage Therapy Speaker: Vicki Kemner, LMT Dragonfly Health & Spa
Midwest Teleconference Series Mark your calendars on every second Monday of the month for the Midwest Teleconference Series. The series topics from March through Midwest June are: Teleconference Series Navigating Through Relationships
The Wellness Network connects people who have an interest in or who are actively participating in exercise programs through a monthly teleconference.
July 28 Emotional Well- Being Speaker: Mary Duparri, MA, LPC August 23 Keep Your Memory Sharp Speaker: Pascale Michelon, PhD Director, The Memory Practice Sept. 15
Strength Training & MS Speaker: Christy Connoyer Head Softball Coach Saint Louis University
These monthly calls are an opportunity to share ideas and encouragement about exercise and include special guest speakers. The teleconferences are facilitated by Toni Kodner, a volunteer with extensive knowledge of MS and wellness, and are held from 7-8 p.m. The Wellness Network is free and provides resources to a wide variety of people with MS of all abilities. It is also helpful to those who are new to seeking out wellness opportunities and need some guidance and direction.
Part I: Taking Care of Yourself While Taking Care of Others Speaker: Karen Tripp Midwest Teleconference Licensed Marriage and Family SeriesCounselor Date/Time: June 13, 2011, 7-8 p.m.
Navigating Through Relationships Midwest Teleconference Part II: Good Grief! How to Cope with Loss Series Speaker: TBA Date/Time: July 11, 2011, 7-8 p.m.
Sleep & MS: When to Doze
Speakers: Consultants in Neurology Date/Time: August 8, 2011, 7-8 p.m.
Symptom Management: Optic Neuritis Speaker: Dr. John Pula Date/Time: September 12, 2011, 7-8 p.m.
If you are interested in becoming a member of the Wellness Network, please call 1-800-344-4867 or visit our website to register for the monthly calls.
www.gatewaymssociety.org
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HAPPENINGS
Wellness Network
Gateway Area Chapter
Chapter Calendar
HAPPENINGS
JUNE 2011
3-5 Challenge Walk MS, St. Charles County, MO 4 Family Evening at the Ballpark, Marion, IL 6 Carepartner Teleconference 8 Young Professionals Meeting 11 Family Evening, Columbia, MO 13 Midwest Teleconference Series 18 Progressive MS Symposium 23 Wellness Network 25 Creative Art Therapy Program, St. Louis, MO 25-26 Relationship Matters, Cape Girardeau, MO 28 Talk MS Meet & Greet, Hannibal/New London, MO
JULY 2011
9 Creative Art Therapy Program, St. Louis, MO 11 Midwest Teleconference Series 16 Creative Art Therapy Program, St. Louis, MO 19-23 Camp Hope, Makanda, IL 22 Creative Art Therapy Dinner Program, St. Louis, MO 23 Creative Art Therapy Program, St. Louis, MO 28 Wellness Network
AUGUST 2011
8 11 13 20 20 25 27
Midwest Teleconference Series New Connections, Edwardsville, IL Talk MS Meet & Greet, Mid-St. Louis County Research MS, Jefferson City, MO & Rend Lake, IL Walk MS, O’Fallon, IL Wellness Network Research MS, Fairview Heights, IL & Cape Girardeau, MO
SEPTEMBER 2011
10-11 Bike MS: Express Scripts Gateway Getaway Ride Columbia, MO 11 Walk MS, Union County, MO 12 Midwest Teleconference Series 15 Wellness Network 17 Walk MS, Bootheel Area, MO 22 John L. Trotter Research Program, St. Louis, MO 24 Walk MS, Washington, MO 24 Walk MS, Mt. Vernon, IL 30
PUBLICATION OF THE NATIONAL MULTIPLE SCLEROSIS SOCIETY Contact Us at National MS Society Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146 314-781-9020 or 1-800-344-4867 www.gatewaymssociety.org MS Connection © 2011 A quarterly magazine published by the National Multiple Sclerosis Society, Gateway Area Chapter. Chapter President • Phyllis Robsham Newsletter Editor • Joe Cavato Writers • Joe Cavato • Karen Dabrowski• Kim Fitzsimmons • Dan Friedman • Keith Hoerner • Joan Lowery • Dr. Soe Mar NOTICE: The Gateway Area Chapter of the National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician. The National Multiple Sclerosis Society does not endorse products, services, or manufacturers. Such names appear here solely because they are considered valuable as information. The National Multiple Sclerosis Society assumes no liability whatsoever for the contents or use of any product or service mentioned. Proud member of
1.800.344.4867
happenings Program Registration
Name________________________________ Address_______________________________ ___________________________________ City/State/Zip___________________________ Home phone____________________________ Work phone____________________________ E-mail_______________________________ Guest Names and Ages______________________ ___________________________________ Does anyone in your party use a mobility device?_______ Would you like to request a fee waiver?____________ Do you prefer a vegetarian meal?________________ Date of Diagnosis_________________________ Payment Information ( ) Fee waiver requested ( ) Check enclosed payable to MS Society ( ) Visa ( ) MasterCard ( ) Discover ( ) Am. Express Card # ____________________________ Expiration Date:_______________________ Send to: National Multiple Sclerosis Society, 1867 Lackland Hill Parkway, St. Louis, MO 63146 or Fax to 314-781-1440 To register online go to www.gatewaymssociety.org, click “Programs & Services” then select “Program Calendar” to choose the program you would like to attend.
www.gatewaymssociety.org
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HAPPENINGS
[ ] CarePartner Teleconference June 6 COST: FREE PROGRAM [ ] Family Evening, Columbia, MO June 11 COST: FREE PROGRAM [ ] Navigating Through Relationships Part I: Teleconference June 13 COST: FREE PROGRAM [ ] Progressive MS Symposium June 18 COST: FREE PROGRAM [ ] Wellness Network - Alternative Massage Therapy June 23 COST: FREE PROGRAM [ ] Relationship Matters Enrichment Course, Cape Girardeau, MO June 25-26 COST: $40/COUPLE [ ] Navigating Through Relationships Part II: Teleconference July 11 COST: FREE PROGRAM [ ] Camp Hope, Makanda, IL July 19-23 COST: $140/CAMPER [ ] Creative Art Therapy Dinner Program, St. Louis, MO July 22 COST: FREE PROGRAM [ ] Wellness Network - Emotional Well-Being July 28 COST: FREE PROGRAM [ ] Sleep & MS: When to Doze Teleconference August 8 COST: FREE PROGRAM [ ] New Connections, Edwardsville August 11 COST: FREE PROGRAM [ ] Research MS, Jefferson City, MO August 20 COST: FREE PROGRAM [ ] Research MS, Rend Lake, IL August 20 COST: FREE PROGRA, [ ] Wellness Network - Keep Your Memory Sharp August 23 COST: FREE PROGRAM [ ] Research MS, Cape Girardeau, MO August 27 COST: FREE PROGRAM [ ] Research MS, Fairview Heights, IL August 27 COST: FREE PROGRAM [ ] Symptom Management: Optic Neuritis September 12 COST: FREE PROGRAM [ ] Wellness Network - Strength Training & MS September 15 COST: FREE PROGRAM [ ] John L. Trotter Research Program, St. Louis, MO September 22 COST: $15 [ ] Family Weekend, Touch of Nature, Makanda, IL October 14-16 COST: $70/PERSON BEFORE OCT. 5 $85/PERSON AFTER OCT. 6
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Permit No. 3914 St. Louis, MO
Gateway Area Chapter 1867 Lackland Hill Parkway St. Louis, MO 63146
Gateway Area Chapter Gateway Area Chapter 1867 Lackland Hill Parkway
happenings St. Louis, MO 63146
making the most
of life and the least of MS
In this issue Progressive MS Symposium. . . . . . . . 17 Relationship Matters. . . . . . . . . . . . . . 17 Creative Art Therapy . . . . . . . . . . . . . . 18 Deliver a Smile. . . . . . . . . . . . . . . . . . . 19 New Connections . . . . . . . . . . . . . . . . 19 Camp Hope. . . . . . . . . . . . . . . . . . . . . 20 Research MS. . . . . . . . . . . . . . . . . . . . . 20 Acorda Therapeutics Programming. . 21 John L. Trotter Research Program. . . . 22 Family Weekend Touch of Nature. . . . 23 Talk MS Groups . . . . . . . . . . . . . . . 24-25 Therapeutic Recreation. . . . . . . . . 26-27 Beat the Heat. . . . . . . . . . . . . . . . . . . . 28 Wellness Network. . . . . . . . . . . . . . . . 29 Midwest Teleconference Series . . . . . 29 Chapter Calendar. . . . . . . . . . . . . . . . . 30 Registration Page. . . . . . . . . . . . . . . . . 31
Summer has arrived and so has the warm weather. Get some tips on how to beat it (pg. 28). It is also time for summer vacation. Check out the Chapter’s newest program, Camp Hope (pg. 20) — a summer camp for youngsters affected by MS. Learn about the latest in MS research from experts in the field at a Research MS program (pg. 20) or the annual John L. Trotter Research program (pg. 22).
If you’re looking for a unique way to express yourself, join us at a Creative Art Therapy session (pg. 18). You’ll also want to mark your calendar for the always popular Family Weekend at Touch of Nature (pg. 23). Go to gatewayMSsociety.org g Programs & Services g Program Calendar for the latest updates.
Your Source for Knowledge, Wellness, and Support
Summer 2011