fall 2015 ms conn ection magazine · annual meeting of the americas and european committees for...

fall 2015 gateway area chapter

INSIDe thIS ISSUe

4-5waSh U. StUDeNtS wIN awarD

6-7from grIDIroN to DaNce StUDIo

10bIke mS welcomeS 2 teamS to cIrcle of DIStINctIoN

12-13chapter aDvocateS for thoSe lIvINg wIth mS

UNDerStaNDINg mS geNetIcS reSearchmS coNNectIoN magazINe

story continued on page 3

By claude schofield, phd

people affected by multiple sclerosis sometimes ask me: “it’s great that they found another gene that is linked to Ms, but what does it mean for me?” Well, the genetics research presented at the annual meeting of the americas and european committees for treatment and research in Ms (actriMs-ectriMs), held in Boston this past september, has given me great answers.

how geNeS INteractdr. david hafler (yale university) launched the discussion about genes and Ms when he delivered the keynote lecture during the opening ceremony. he was the founder, with other researchers, of the international Ms genetics consortium, a team that has turned Ms genetics on its ear. “Virtually every Ms geneticist on earth is working together,” he declared and spoke eloquently about where we are in the search for Ms genes. he noted that there will likely be hundreds of Ms risk genes

uncovered eventually. “each [gene] by itself has a small effect on disease risk; but each interacts with the environment,” he noted. “These are not bad genes, and it’s not a bad environment – it’s a bad interaction.”

mappINg mS SUSceptIbIlItydr. philip de Jager (harvard), recipient of the 2014 Barancik prize for innovation in research, presented the consortium’s latest findings – a replication of its pivotal genetics study, published in Nature Genetics (online, september 29, 2013), that identified 48 new genetic variants associated with Ms based on data gathered from 30,000 people with Ms and more than 50,000 controls without Ms. gene research is grueling – data from thousands of people with and without Ms need to be gathered in massive numbers, and then all those data must be replicated. dr. de Jager announced that after studies involving over 80,000 people, they now have

2 mS coNNectIoN: fall 2015

i know i am joined by many welcoming in this beautiful cooler weather. This change of season also marks a close to our fiscal year and a completion of our largest event of the year, Bike Ms: express scripts gateway getaway ride. october also marks the launch of putting our strategic plan for 2016-2018 into action.

This past year the chapter focused on 4 areas: financial stability, Volunteer engagement, staff capacity and increasing connections in the community. The most recent campaign to which these took shape was Bike Ms. not only does this campaign aim to reach it’s $2 million dollar goal, it involves over 3,000 participants, including over 500 are volunteers. The Ms society relies on our event volunteers but also requires a special key group of volunteer leaders who work year round behind the scenes to lead many facets of Bike Ms, from rest stops to route design to recruitment. staff capacity grew tremendously this year as we embraced a highly inclusive and talented team approach to executing a successful Bike Ms campaign. and last, increasing connections in the community is a hallmark of the Ms Movement. not only did the communities through which we rode give us a warm welcome, but the connections that occurred over the celebratory beer in team tent Village, huddling around pancakes, receiving the finisher medal from an Ms champions, the connections that are created at Bike Ms continued to be strengthened.

in 2015, we learned that when we focus, we can make tremendous progress toward achieving our goals which ultimately leads us toward a world free of Ms. it is this reasoning that guides our strategic, and therefore operational plan for 2016. We are more focused than ever across the society on delivering our mission: people affected by Ms can live their best lives as we stop Ms in its tracks, restore what has been lost and end Ms forever. We remain committed to significant investment in Ms research and treatment development, but it is also time to invest in a more consistent and impactful approach to service delivery in our chapter and across the country.

Thank you for the hours of service you’ve given the Ms society…be it advocating, fundraising, donating your time or making a financial contribution, the Ms Movement is stronger as a result.

With gratitude,

inside this issue

Publication of the National Multiple Sclerosis Society

Contact Us at: national Ms society, gateway area chapter | 1867 lackland hill parkway, st. louis, Mo 63146 | 314-781-9020 | 1-800-344-4867 | gatewaymssociety.org Ms connection © 2015 a quarterly magazine published by the national Multiple sclerosis society, gateway area chapter.Writers • Joe cavato • hannah hasselquist • notice: The gateway area chapter of the national Multiple sclerosis society is proud to be a source of information about multiple sclerosis. our comments are based on professional advice, published experience, and expert opinion, but do not represent therapeutic recommendations or prescriptions. for specific information and advice, consult a qualified physician. The national Multiple sclerosis society does not endorse products, services, or manufacturers. such names appear here solely because they are considered valuable as information. The national Multiple sclerosis society assumes no liability whatsoever for the contents or use of any product or service mentioned.

letter from the preSIDeNt

rebecca fehlIg chapter preSIDeNt

research Ms .........................1, 3

Wash. u. students win award .. 4-5

from gridiron to dance ....... 6-7

new pediatric Ms center ..... 8-9

circle of distinction teams ....10

advocacy updates ..............12-13

can do Ms ............................13

parenting with disabilities ......14

learning opportunities ..........15

clinical trials ....................16-17

talk Ms groups ................18-19

Therapeutic recreation .......20-21

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

identified more than 159 genetic variations related to Ms, and more importantly, have begun to identify the specific immune cells and proteins involved, and how much weight each one carries. “We have created a reference map of Ms susceptibility,” said dr. de Jager. “now we turn to the task of understanding the biology of Ms susceptibility.”

explorINg DIffereNceSdr. noriko isobe (university of california, san francisco) and the consortium reported on how genes differ between african americans and caucasians with Ms, following up on a 2013 study published in Neurology (online, June 14, 2013). eight novel genes were identified among african americans with Ms that were not uncovered in the larger gene scans. We’ve seen that the experience of african americans with Ms is different from that of caucasians, and this study is putting us on the road to finding out why.

geNeS aND vItamIN Ddr. Jennifer graves (university of california, san francisco) and the network of pediatric Ms centers reported on findings from an ongoing study led by investigators nationwide of what triggers Ms in children. They showed that vitamin d status, which has been linked to Ms risk, was associated with Ms relapses

only if children have a specific immune gene. The original study included 185 kids, and this group is collecting data on hundreds more. trials of vitamin d supplementation are ongoing, so i’m hopeful that future findings will show who may be helped most by this strategy.

traNSlatINg the Datataking a big step toward translating all of this gene data, dr. nikolaos patsopoulos (Brigham and Women’s hospital) and colleagues from a range of institutions in Boston examined which proteins interact with the 159 genes that have been pinpointed by the consortium. Then they cross-linked this information with the “druggable genome” —a data set on how existing therapeutics interact with the genome—and identified more than 2,000 possible therapeutic interactions.

genetics research is a huge part of our efforts to end Ms forever because by understanding factors that may cause Ms, we’re better able to target research of solutions to those specific factors. This meeting has given me a lot of hope that we are on the right path to doing just that. n

dr. claude schofield is the director of discovery research at the national Ms society.

originally published on www.MSconnection.org/blog.

continued froM page 1


a team of Washington university students on the Medical campus recently won top honors in the neuro startup challenge, a biotech startup competition designed to commercialize promising brain-related discoveries of scientists at the national institutes of health (nih).

The team developed a business plan to commercialize a test for patients with multiple sclerosis (Ms), a nervous system disease that affects the brain and spinal cord. The test detects whether patients with Ms are carriers of a virus that could interact negatively with drugs known to alleviate symptoms of the disease.

“Because there currently isn’t a very effective way to identify carriers of the virus, doctors don’t have a great way of knowing whether their patients will suffer adverse reactions when given monoclonal antibody therapies,” said Washington university team leader Michelle faits. “Therefore, although these types of therapies are highly effective at treating Ms, they aren’t very widely used.”

More than 70 teams competed in the challenge earlier this year and developed business plans to commercialize 13 nih technologies. The Washington university team

was made up of medical student paul gamble, and dana Watt and faits, who are phd students in the division of Biology & Biomedical sciences. James sorrell, a technology project coordinator at the skandalaris center, also participated on the team.

The winning teams have the option to launch startups based on their business plans. heritage provider network, which helped sponsor the startup challenge, has pledged to provide seed funding to help groups get their

startups up and moving.

The three university students serve as board members for the Bioentrepreneurship core, a networking group at Washington university that promotes entrepreneurship and scientific innovation. They credited their success in the competition to faculty members and entrepreneurs in st. louis who were eager to

reSearch

waSh U. StUDeNtS wIN awarD that coUlD help thoSe lIvINg wIth mS


provide assistance.

“We didn’t have to call people across the country for advice,” said Watt, who studies neuroscience. “We could sit with people face to face and hash things out.”

The students also benefited from the Medical campus’ proximity to the corteX innovation community. it’s where they met harry arader, an experienced consultant for life sciences startups.

arader approached the students after hearing them pitch their plan at the healthbio startup weekend, held earlier this year @4240. he offered to advise the budding entrepreneurs free of charge.

“That was pivotal,” said faits, who studies developmental biology. “he connected us with a lot of people in the st. louis biotech scene. We met with a regulatory specialist for advice on guiding products through fda approval, a serial entrepreneur with extensive experience in medical diagnostic startups and the head of a big genomics company.”

The university’s commitment to innovation and entrepreneurship gave the team an

advantage.

“We had some phenomenal mentors,” said gamble, who recognized emre toker, managing director of the skandalaris center, for his personalized attention and school of Medicine faculty for their clinical expertise.

The center for advancing innovation organized the neuro startup challenge and a similar competition in 2014, the Breast cancer startup challenge. another team of students on the Medical campus competed and won the breast cancer competition for a business plan to advance a therapeutic vaccine developed by researchers at the national cancer institute. n

“becaUSe there cUrreNtly ISN’t a very effectIve way to IDeNtIfy carrIerS of the vIrUS, DoctorS DoN’t have a great way of kNowINg whether theIr patIeNtS wIll SUffer aDverSe reactIoNS wheN gIveN moNocloNal aNtIboDy therapIeS,” SaID waShINgtoN UNIverSIty team leaDer mIchelle faItS. “therefore, althoUgh theSe typeS of therapIeS are hIghly effectIve at treatINg mS, they areN’t very wIDely USeD.”


lIvINg wIth mS

from grIDIrIoN to DaNce StUDIoWhen someone is diagnosed with Ms, it’s usually a life-changing event. it certainly was for Micheal curry who was diagnosed in 2013 as he was preparing to play football at southeast Missouri state university (seMo).

after his diagnosis, Micheal didn’t flinch.

“i didn’t know anything about Ms. My mom was freaking out when i was diagnosed, but i don’t let things get to me,” he said. “so i thought that’s fine i can deal with it.”

When Micheal, who played football, wrestled and ran track in high school, couldn’t continue his football career at seMo that stung.

“The thing that hurt me the most was when i couldn’t play football,” Micheal said.

if Micheal ever felt down or depressed, you could never tell by his body language as he could constantly be seen dancing around campus - so much so that his freshman seminar teacher ask Micheal about it.

“i always saw him dancing around on campus,” said philip edgecome, instructor of dance at seMo. “for class he had to give a speech on something you are passionate about and his was on dance. he took a dance class and he eventually became a dance major. he told me he seemed to be spending all of his

time dancing, so why not major in it.”

“dancing became my passion and i feel like it’s my way of giving to the world,” Micheal said.

Micheal began dancing with one of his friends and they even got on the seMo Movie channel. another student asked them to do a video for eB (epidermolysis Bullosa) awareness and they began teaching free classes to any students on campus.

after mIcheal cUrry waS DIagNoSeD wIth mS aND coUlDN’t play football at SoUtheaSt mISSoUrI State UNIverSIty he got INto DaNce aND StarteD a DaNce orgaNIzatIoN calleD fINgerprINt.


eventually it grew into forming an organization on campus called fingerprint dance community teaching free dance classes twice a week drawing about 100 people to each class.

With the growth of the group, Micheal wanted to do more so the group is having a Ms awareness dance competition to raise awareness and funds for the national Ms society.

“We wanted to hit home and at the same time promote our organization to the community,” Micheal said. “We want to raise awareness, give my personal story and tie it all in with dance, something i love. since a lot of people don’t know a lot about Ms it’s important to have an event to highlight it.”

professor edgecome said Micheal’s attitude and work ethic are unique.

“he’s a go getter and is very different than a lot of students,” he said. “he’s very motivated. he’s brand new to dance as far as ballet and those things but he’s a sponge just absorbing it. he’s in a piece now where he’s lifting girls and doing more ballroom things. it’s totally

out of his comfort zone but every time he comes back for rehearsal he’s better and better.”

edgecombe has been impressed with Micheal’s determination and how he has handled his Ms.

“i see Micheal as extremely strong. he has told me about the way Ms has affected him but i think he down plays it,” he

said. “he just says some days he feels a little tired. he didn’t take his diagnosis as any sort of sentence or anything like that. he’s such a strong personality and he always speaks his mind. he laughs, he’s not afraid to make fun of himself, i haven’t seen his Ms hold him back from anything.”

Micheal, who is working on a minor in entrepreneurship, has big plans for not only the fundraising dance competition but after he graduates.

“My friend and i want to own our own dance studio and teach all types of dance,” he said. “We want to have a studio with a gym, counseling sessions and physical therapy.”n

“mIcheal IS a go getter aND IS very DIffereNt thaN a lot of StUDeNtS. he’S very motIvateD. I See mIchael IS extremely StroNg.” - profeSSor phIlIp eDgecombe

how meDIcare aNNUal eNrollmeNt perIoD (for coverage IN 2016)open enrollment season is upon us. The open enrollment period for Medicare prescription drug and Medicare advantage plan (private Medicare Managed care plans) coverage for 2016 is october 15th to december 7th. This is a time when Medicare beneficiaries can evaluate their current prescription drug and Medicare coverage and make any necessary changes. (exception: Medicare advantage plan enrollees who wish to dis-enroll and return to original Medicare may do so between January 1 and february 15, 2015.)


The national Multiple sclerosis society has committed new funding to expand the network of pediatric Ms centers (npMsc) to 12 nationwide, including a new center selected at Washington university in st. louis. expanding this research network by three centers will enhance the ability to understand childhood multiple sclerosis and its treatment, and to unlock the mysteries of Ms in adults.

The Washington university pediatric Ms center will be led by soe Mar, Md, MBBs, Mrcp, associate professor, neurology and pediatrics.what DoeS It meaN to the commUNIty to have a peDIatrIc mS ceNter IN the mIDweSt?having a pediatric Ms center which is connected with the network of national pediatric Ms centers ( npMsc) in the us gives the children and families in st. louis and the Midwest region an access to the exciting research studies going on at the national level. having a dedicated pediatric Ms center with the care provided by the team of child neurologists, nurses, physical therapists, occupational therapists and neuropsychologists who have the familiarity and expertise in pediatric onset Ms and other demyelinating diseases would ensure that these children are cared for in a best possible way.

how harD IS It to DIagNoSe mS IN chIlDreN? it depends on the age and the presentation of the child. it is easy to diagnose Ms if the child presents with the typical symptoms, signs and Mri findings typical of Ms. however, some of the Ms symptoms can be variable, Mri findings could be atypical, and the diagnosis can be missed if you are not familiar with childhood demyelinating diseases. it can be quite challenging in young children, as their presentation can be atypical. it is important to have an in depth knowledge of other demyelinating, autoimmune diseases and hereditary metabolic diseases of children and to not to under or over diagnose Ms.

what are treatmeNt optIoNS for chIlDreNcurrently, we use the same first line immunomodulatory drugs used in adult patients with Ms. The studies are underway to evaluate the effectiveness of oral immunomodulatory therapies in children with Ms.

what ServIceS are offereD at the peDIatrIc mS ceNter?We offer comprehensive investigation and

reSearch

waSh U. SelecteD to JoIN reSearch Network focUSINg oN peDIatrIc mS


for peDIatrIc mS ceNter appoINtmeNtS famIlIeS caN call 314-454-6120. for reSearch StUDIeS coNtact mS team at 314-454-4267 or [email protected].

management of pediatric Ms and other demyelinating diseases and cns autoimmune diseases. We can evaluate these children within 1-2 weeks of referral.

DIScUSS yoUr reSearch StUDyThe purpose of the environmental and genetic risk factors for pediatric Multiple sclerosis study (e & g in peds Ms) is to determine if risk factors identified for adult Ms are also risk factors for pediatric Ms and if there are interactions between risk factors. participants must be 3 – 18 years old. The study is enrolling participants with Multiple sclerosis or clinically isolated syndrome (cis), as well as healthy controls. The study requires that participants come to 1 study visit at st. louis children’s hospital, consent to having their medical data relating to their demyelinating disease entered into a database, provide a blood sample, and complete questionnaires. participants (Ms/cis and healthy controls) will be compensated $50 for completing the study. note: participants with Ms or cis disease onset more than 4 years ago are not eligible.

The purpose of the adherence in pediatric Multiple sclerosis study is (1) to evaluate risk factors for medication non-adherence and (2) to evaluate the effect of behavioral feedback combined with an electronic medication monitoring device on adherence in children and adolescents with Multiple sclerosis (Ms) or other clinically isolated syndrome (cis). participants must be 10 – 18 years old. The study is enrolling participants with Ms or cis

who have been taking an oral or injectable disease-modifying therapy for at least 6-months. The study requires participants to come to st. louis children’s hospital for 2 study visits, consent to being randomized into one of two study arms based type of medication and who administers the medication, completing questionnaires, using an electronic medication monitoring device, and possibly telephone conversations with a behavioral interventionist. participants will be compensated $25 (gift card) for completing the study.

The pediatric Multiple sclerosis and other demyelinating disease (peMsdd) database is sponsored by the network of pediatric Multiple sclerosis centers (npMsc) and the national Multiple sclerosis society (nMss). The purpose of the peMsdd database study is to provide data on patients with Ms and other demyelinating diseases to support hypothesis generation and study design development for clinical trials and observational studies. participants who have been diagnosed or have a suspected onset of Ms or other demyelinating disease before the age of 18 years old are eligible. participants will consent to having their medical data relating to their demyelinating disease entered into the database. There are no study visits required. n


bIke mS

thaNk yoU cIrcle of DIStINctIoN teamS

“it has been my distinct pleasure to help organize and lead such a great team of people to raise money for such an important cause and participate in the best run, most fun cycling event in this part of the world. This is just another way that BJc is focusing on it’s mission to improve the health and well-being of the patients and communities we serve. We have a great team! We have a great time!”

- scott naeger

“i’m proud to be part of express scripts continuing efforts to find a cure for this dreaded disease. We’ve always known that this was not going to be a quick fix, and that’s why we’re dedicated to continuing to do our part to fight multiple sclerosis.”

- steve smith

“BJc healthcare supports the Ms society because of the tremendous difference it is making in the lives of people with multiple sclerosis. at Barnes-Jewish hospital, we are committed as an academic medical center to caring for patients with Ms and working with our Washington university physician partners to support research and innovative treatments. as an avid cyclist i first got involved with the Ms society in support of Bike Ms and have since joined in other efforts to support their excellent work. i’ve personally seen the challenges of living with Ms. The support the Ms society provides not only to patients, but to their families, has a significant impact on care today and the research needed to find a cure.”

- Bob cannon

at this year’s Bike Ms: express scripts gateway getaway ride, we welcomed two new teams to the circle of distinction for eclipsing the $1 million raised mark during their years participating in Bike Ms. team express scripts and BJc joined Kaldi’s coffee in the circle of distinction. congratulations and thank you for your support.

P a i d a d v e r t i s e m e n t


Date and Time: 11/18/2015 at 6:30 PM

Speaker: Myles Goble, MD Columbia, MO

Location: AJ's Restaurant 1407 North Missouri Street Macon, MO 63552

Event Code: TR322821 (1264952)


aDvocacy

NmSS aDvocateS for thoSe wIth mSThe national Ms society and Ms activists advocate at the federal, state and local levels for increased Ms research funding, access to quality care, disability rights, long-term services and supports and awareness and organizational support.

feDeral ISSUeSin March and august/september, we met with several members of congress both in Washington, d.c., and in their home district to advocate on our federal issues. district activist leaders, our government relation committee members, and society staff asked for support of the following:• neurological data - h.r. 292 to create a

centralized data collection system at the centers for disease control and prevention (cdc) that will track and collect data on the epidemiology of neurological diseases, including Ms.

• complex rehab technology refers to medically-necessary products – such as individually configured manual and power wheelchairs, seating and positioning systems. We are asking for support of the ensuring access to Quality complex rehabilitation technology act (h.r.1516/s. 1013).

• current spending caps are having a dramatic effect on government-sponsored research that are vital to people affected by Ms. We are asking for legislation to increase the spending caps instituted under the Budget control act of 2011.

mISSoUrI State ISSUeSin Missouri we continue to advocate for Medicaid expansion as the state has not approved Medicaid expansion.

What does Medicaid expansion mean? The affordable care act provides states with additional federal funding to expand their Medicaid programs to cover adults and children who may have not previously qualified for Medicaid coverage because their incomes are too high or for other factors. in states that have expanded Medicaid, free or low-cost health coverage is available to people with incomes below a certain level regardless of factors such as disability, family status, and financial resources. http://bit.ly/medicaidexemption.

Missouri’s first MS Task Force will begin meeting this fall. The Ms task force will help identify quality of life issues impacting the more than 8,900 individuals and families affected by multiple sclerosis in Missouri. The task force is comprised of members of the Missouri general assembly, a representative of the department of health and senior services, neurologists, social service agencies, and

If you have been impacted by Missouri’s lack of Medicaid expansion, please share your story by contacting Kari Rinker at [email protected] or 316-854-0776.


individuals who live with Ms. IllINoIS State ISSUeSin illinois, we advocated for the elimination of insurance coverage caps for Ms preventative physical therapy. We want to further improve insurance coverage on preventative physical therapy by eliminating treatment limitations and calendar year maximums. We also requested support of a home Modification tax credit. a home modification tax credit will increase the accessibility of someone’s home resulting in increased safety and independence. We will

continue to advocate on these issues in 2016.

The illinois Ms task force has concluded their meetings and they are preparing their final report. n

lIvINg wIth mS

caN Do mS moNthly webINarS2Nd TUeSday oF The MoNTh 7-8:15 P.M.

can do Ms Webinar series brings together a collaborative team of Ms experts for you. 2-3 experts present. 1 topic for discussion. 0 charge to you. Join us live from the convenience of your home or office at no charge for an in-depth discussion on topics relating to exercise, nutrition, communication, symptom management and total health. register at mscando.org.

tired of Being tired? tips, tools & techniques to Keep you going• october 13, 2015 7-8:15 p.m.

getting creative in the Kitchen with Ms• november 10, 2015 7-8:15 p.m.

Can Do Multiple Sclerosis Upcoming Webinars2nd Tuesday of each month 8:00p.m. – 9:15p.m. ET. Reserve your spot now!

Can Do MS’s monthly webinar series offers insight from MS experts representing different medical disciplines so that participants can gain additional knowledge relating to MS. Participants interact with a team of Can Do MS Programs Consultants, by asking questions to learn how to actively co-manage their MS from the comfort of their home, free of charge.

January 13, 2015, 8:00 – 9:15 p.m. ET Get Motivated to Get OrganizedPresented by Can Do MS Programs Consultants:Juliann Hanson-Zlatev, OTR & David Rintell, EdDLife can be pretty complicated these days, and it is difficult to keep track of our appointments, email, family life, relationships and finances. One way to overcome the effects of MS fatigue is to incorporate organizational skills and strategies into your day to day life. Join Occupational Therapist, Juliann Hanson-Zlatev, and Psychologist, David Rintell, in this webinar to learn some excellent tips to help put your life in order, along with ways to motivate yourself to become more organized. Read more.

February 10, 2015, 8:00 – 9:15 p.m. ETFlying Solo with MSPresented by Can Do MS Programs Consultants: Peggy Crawford, PhD & Linda Walls, OTRMost people are faced with changes, losses and the need to make adjustments during their lives, but individuals with MS seem to have more than their fair share of these experiences. And, if you are living alone with MS, these changes can be even more challenging. Join Linda Walls, Occupational Therapist, and Peggy Crawford, Psychologist, as they discuss the strategies in the decisions you can make to maintain independence while functioning at the highest possible level, both physically and emotionally.Read more.

March 10, 2015, 8:00 – 9:15 p.m. ETStaying Vertical: Reduce Risks for FallsPresented by Can Do MS Programs Consultants: Ann Mullinix, OTR/L & Kathy SanMartino, PT, NCS, MSCS, ATP/SMS, CLTLiving with MS can increase your chances of falling and becoming injured. This webinar will help you eliminated fall hazards in your home and make it easier to get around safely. Join Physical Therapist, Kathy SanMartino, and Occupational Therapist, Ann Mullinix, as they discuss risk factors that cancontribute to falling and provide ways to improve your safety at home and in the community. Read more.

Visit Can Do MS’s website to register today! http://www.mscando.org/webinar

Webinar Series Archive If you are not able to view Can Do MS webinars live, then please Can Do MS’s webinar archives. Watch them on your own time. Visit http://www.mscando.org/webinararchive.

SUzaNNe carroN, mS SocIety Staff, chrISta moNtgomery, coNgreSSmaN blaINe lUetkemeyer’S DIStrIct offIce DIrector, aND SUe patterSoN, DIStrIct actIvISt leaDer

how yoU caN get INvolveD IN aDvocacy aND make DIffereNce• Join the Ms activist network and

receive action alerts: http://bit.ly/advocateforchange

• have you met with your elected official and shared how Ms affects you? are you interested in growing relationships to keep people with Ms at the front of their minds of our elected officials as they consider legislation? lead the way in your community by becoming a volunteer district activist leader. http://bit.ly/activistleadeMOS/Advocate-for-Change/Become-an-MS-Activist/District-Activist-Leader-Application.


lIvINg wIth mS

pareNtINg wIth DISabIlItIeSperiodically, parents with disabilities may find themselves in search of adaptive equipment, or alternate approaches to a parenting task. to address this need within the disability community, specially trained clinicians at the Program in occupational Therapy at Washington University School of Medicine in St. Louis, Missouri, partner one-on-one with parents and families to equip them with the skills, knowledge and confidence they need to safely and independently parent the way they want to throughout each stage of their child’s life. The Parent with disabilities Program was developed by carla Walker, otd, otr/l, atp, with the program in occupational Therapy.

as is typically the case with occupational therapy, the exact services will vary depending upon the parent’s individual needs. regardless of the age or stage of the child, however, occupational therapists are ready and available to help empower parents to meet their goals for family participation.

“for parents with mobility limitations, finding ways to manage the environment and keep children safe may be an area of focus, especially during the toddler years,” said carla Walker. “or, if the school environment is not accessible, as it should be and a parent is having difficulty participating in school activities, that’s a way that occupational therapists can help. This program is about

empowering parents with a disability to have the confidence, knowledge and skills they need to be the type of parent they want to be.”

The Parent with disabilities Program is offered through their community practice program. regardless of the family’s stage or age of the children, occupational therapists can:• assist with pregnancy planning, in both

natural births and adoptions• schedule home visits to evaluate the spaces

and equipment for baby care/childcare ease• Manage wheelchair adjustments needed

during pregnancy• complete performance evaluations for skill

development or use in legal matters


• provide ergonomic techniques for protecting the parent’s body during baby care tasks

• suggest resources for managing attendant or family support

• evaluate school and community accessibility• perform developmental follow-ups as the

child grows• lend resources and adaptive equipment for

clients to try before they buy

during a home visit by, an occupational therapist can make recommendations for:• assistive technology and adaptive baby care

equipment needs• seating and mobility health and comfort

during pregnancy as a result of body changes and weight fluctuations

• Best practices in feeding, transporting, diapering, and bathing kids

The Parent with disabilities Program is offered in the following counties: st. louis city and county, st. charles, Jefferson county, Missouri. The program accepts private insurance, Medicare and Medicaid – limited assistance available through a grant. for more information, please contact carla Walker at 314-932-1024. To schedule an appointment, call 314-286-1669.

excerpted from o.t. link, spring 2015

reSoUrceS:someone you Know has Ms: a Book for families – www.nmss.orgKnowledge is power, parenting with Ms, Volume 8 – www.nmss.org n

lIvINg wIth mS

learNINg opportUNItIeSaNNUal UpDate: what’S New wIth the treatmeNt of mUltIple ScleroSIS:Join Barry singer, Md, neurologist, Mark tullman, Md, neurologist and heather popham, anp, neurology to hear the latest Ms treatments along with strategies to reduce Ms symptoms and improve quality of life. groundbreaking research from the world’s largest annual international Ms conference held in october will be presented, including information regarding new medications and myelin repair strategies. a Q&a session will follow the presentations. ThURSday, oCTobeR 29, 6:30-8:30 P.M. ST. LoUIS FRoNTeNaC hILToN 1335 SoUTh LINdbeRGh, ST. LoUIS, Mo To ReGISTeR CaLL: 314-996-5433 oR 800-392-0936.

mS aND the roaD aheaD; reDefININg relapSe, progreSSIoN aND INterveNtIoNspeakers: dr. Barbara green, dr. amy rauchway, Melanie huff, rn, Mscn and Mary lambert, rn, Mscn learning objectives: appreciation for importance for Ms classifications, understanding relapse, pseudo-relapes and treatments, recognition of relapse or disease progression.SaTURday, oCTobeR 31, 9 a.M. - NooN MeRCy hoSPITaL 621 S. NeW baLLaS Rd, ST. LoUIS, Mo 63141 To ReGISTeR CaLL: 636-893-1280 oR aT MSCeNTeRSTL.oRG.

Have you ever taken medicine for an illness? Then you have experienced the benefits of clinical research. Clinical trials help to determine if treatments are safe and effective. There is an urgent need for people with multiple sclerosis who are willing to volunteer in clinical trials testing MS therapies. Studies are enrolling diverse populations, and are monitored to ensure that the rights and safety of all participants are protected. Without the help of people with MS, it would be impossible to develop new and better therapies.

Many factors are involved in making sure that a study is conducted properly and that the results are valid. The U.S. Food and Drug Administration requires therapies to undergo three phases of clinical trials before they can be approved to treat people with MS:

n Phase I – The first step is to determine safety. In a small number of healthy volunteers or persons with MS, the investigators determine how the human body reacts to the therapy.

n Phase II – If the therapy proves to be safe, another study is undertaken to begin to determine the effectiveness of the drug in people with MS. A phase II study may last several months or several years, and involves larger numbers of

people. The study is controlled – that is, the drug is compared with the standard treatment, or an inactive placebo. Studies in this phase are meant to determine if a larger, more definitive phase III trial is worth the large investment of funds that would be required.

n Phase III – If the phase II trial suggests effectiveness and safety, an even larger study is conducted in hundreds of people to definitively determine the drug’s effectiveness and to gain a better understanding of the drug’s possible side effects. These multi-center studies canspan several years and several countries.

Following FDA approval, postmarketing studies (phase IV) might be conducted to assess long-term safety and effectiveness.

Clinical Trial Basics

2

To learn more go to gatewaymssociety.org g Find Resources and Support g Research and Clinical Trials

Learn more about participating in clinical trials at:http://www.nationalmssociety.org/Research/Participate-in-Research-Studies

local clINIcal trIalS recrUItINg partIcIpaNtS

CenterWatchA publishing and information services company that provides information on clinical trials, including a list of MS studies currently recruiting patients. 10 Winthrop Square, Fifth FloorBoston, MA 02110 617.948.5100; Toll-free: [email protected] centerwatch.com

CISCRPThe Center for Information and Study on Clinical Research Participation educates and empowers patients, medical and research professionals, the media and policymakers about clinical research participation. 56 Commercial Wharf East Boston, MA 02110 [email protected] ciscrp.org

Clinical Trials in MSPeople with MS, and sometimes family members, can make a difference by volunteering for clinical treatment trials and other research studies. Read more about these opportunities on the National MS Society: nationalMSsociety.org/research (go to Participate in Research Studies)1.800.344.4867

ClinicalTrials.govA registry of clinical trials that are currently recruiting participants with many disorders in the United States and around the world. Searchable by disease.clinicaltrials.gov

My Life, My MS, My DecisionLiving with a disease like MS requires making many decisions, both personal and medical. This National MS Society DVD program follows three people living with MS as they make decisions about choosing doctors, deciding on medications, participating in clinical trials, and wellness. Learn more on the Society website: nationalMSsociety.org/treating-MS (go to Comprehensive Care/Make the Most of Your Doctor Visits)1.800.344.4867

NARCOMSThis registry of people willing to participate in MS research was initiated by the Consortium of MS Centers to facilitate multicenter studies. As of May 2007, the number of participants surpassed 32,000. Information is available in Spanish.NARCOMS Coordinating CenterThe University of Alabama at BirminghamRPHB 507, 1720 2nd Ave. S., Birmingham, AL 35294-0022Toll-free: [email protected]

ResearchMatch.orgA not-for-profit secure Web site, designed to provide people who are interested in participating in research the opportunity to be matched with studies that may be the right fit for them. A collaborative effort of the national network of medical research institutions affiliated with the Clinical and Translational Science Awards, a part of the National Institutes of Health.researchmatch.org

Resources on Clinical Trial Participation in MS

7

the mS ceNter of SaINt loUISASSESSThe purpose of the trial is to compare 2 doses (0.25 and 0.5 mg) of fingolimod to copaxone and to evaluate the effectiveness of 0.25 fingolimod for the treatment of patients with rrMs.Contact: Jessica schulte, rn, clinical research coordinator636-893-1258, [email protected]

ARPEGGIOa Multinational, Multicenter, randomized, double-Blind, parallel-group, placebo-controlled study to evaluate the efficacy, safety, and tolerability of once daily oral administration of laquinimod (0.6 or 1.5 mg) in patients with primary progressive Ms.Contact: Jessica schulte, rn, certified clinical research coordinator, 636-893-1258, [email protected]

MITIGATEa Multicenter, double-Blind, placebo-controlled study of Montelukast (singulair) on gastrointestinal tolerability in patients With relapsing forms of Multiple sclerosis receiving tecfidera® (dimethyl fumarate) delayed-release capsulesContact: Jessica schulte, rn, certified clinical research coordinator, 636-893-1258, [email protected]

local clINIcal trIalS recrUItINg partIcIpaNtS

the mS ceNter for INNovatIoNS IN careASSESS MS STuDy: FTy720D2312a 12-month, randomized, rater-and dose-blinded study to compare the efficacy and safety of fingolimod 0.25 mg and 0.5 mg administered orally once daily with glatiramer acetate 20 mg administered subcutaneously once daily in patients with relapsing-remitting multiple sclerosis.Contact: delea payne-gates, ccrp, 314-996-7775

INSPIREa multicenter, randomized, double-blind, placebo-controlled study of the efficacy and safety of Bg00012 in delaying disability progression in subjects with secondary progressive Ms.Contact: delea payne-gates, ccrp, 314-996-7775

MONITOR FATIGuE ON SMART PhONE APPThe purpose of this study is to use an application on smart phone to monitor fatigue daily.Contact: dr. pamela newland at [email protected] or 314-454-7538

waShINgtoN UNIverSIty School of meDIcINeARPEGGIO The purpose of this study is to find out whether treatment with the investigational drug laquinimod is safe and effective in reducing the loss of brain volume and Ms worsening in patients with ppMs, along with assessing the safety of the drug and determining the side effects of different dosing levels.Contact: susan fox, research patient coordinator/professional, 314-362-2017, [email protected].

PREvENT The purpose of this study is to determine if eculizumab is safe and effective for preventing relapses in patients with relapsing nMo (neuromyelitis optica).Contact: susan fox, research patient coordinator/professional, 314-362-2017, [email protected] BLOOD FOR RESEARChstudy to identify genes important in Ms development. Contact: laura piccio, Md, 314-362-3306 (leave message)

ESCALATE (TySABRI) a phase 4 Multicenter, open-label, single arm study to evaluate switching from Bracet/gilenya® to natalizumab in subjects with relapsing forms of MsContact: susan fox, research patient coordinator/professional, 314-362- 2017, [email protected] wITh MS soe Mar, Md is conducting a research study to determine if risk factors identified for adult Ms are also risk factors for pediatric Ms, and if

there are interactions between.Contact: laJune grayson: 314-454-4267 or [email protected] vITAMIN D AND COPAxONE IN PATIENTS wITh RELAPSING MSstudy will evaluate whether Vitamin d when given with copaxone reduces the rate of relapse in 2 years. eligible participants will be randomized to receive either low dose or high dose vitamin d (oral) with copaxone. Contact: susan fox, research patient coordinator/

professional, 314-362-2017, [email protected] & MuLTIPLE SCLEROSIS developing a better understanding of whether gut microbiomes play a role in the diagnosis of Multiple sclerosis. This study is recruiting newly diagnosed Ms patients (ages 18-50) who have not taken any disease modifying medication and who do not have any other coexisting chronic inflammatory diseases.Contact: Bridgette Clay, (314) 747-6427, [email protected]


Missouricape girardeau

3rd saturday 10 a.m.

st. francis health & Wellness center, rm. 1 150 s. auburn, cape girardeau, Mo 63703

sharon (573) 332-8148

columbia 3rd Wednesday 6-8 p.m.

rusk rehabilitation center315 Business loop 70 Westcolumbia, Mo 65203

Kim Williams, [email protected] gretchen roberts, [email protected]

crystal city/festus

2nd tuesday 1 p.m.

disability resource association 420B s. truman Bl., crystal city, Mo 63019

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

Jefferson city3rd Monday 6 p.m., restarting sept. 15

coca-cola Bottling, Meeting room605 Washington, Jefferson city, Mo 65109 Vickie [email protected]

Kirksville1st Wednesdayevery odd month, 6 p.m.

annex Building300 n. franklinKirksville, Mo 63501

renee 660-341-9999 or [email protected]

Moberly 3rd Thursday6:30-7:30 p.m.

timberlake christian church1624 gratz Brown, Moberly, Mo 65270

lynelle (660) 833-2037 or [email protected]

new london 2nd tuesday 7 p.m.

ralls county health department Building405 W. 1st street, new london, Mo 63459

debby (573) 267-3365 [email protected]

rolla last Thursday 6:30 p.m.

rolla presbyterian Manor1200 homelife plazarolla, Mo 65401

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

Washington 3rd Monday 6 p.m.

st. peter’s united church of christ, 20 east 5th st., Washington, Mo 63090 anne (636) 359-6037

West plains 3rd Wednesday 4:30 p.m.

ozark Medical ctr. shaw Medical Bldg. 2nd fl. 909 Kentucky st., West plains, Mo 65775

sally (417) 469-4842eZ niles (417) 256-1798 or [email protected]

st. louis Metro

affton 3rd Wednesday 7-8:30 p.m.

tesson ferry library9920 lin-ferry dr, st. louis, Mo 63123 Judy sauer (314) 941-5051

generation optiMistic for people in their 20s, 30s & 40s

1st saturday 10 a.m.

nMss office gateway area chapter 1867 lackland hill pkwy, st. louis, Mo 63146 Michelle (636) 447-5407

Kids group 1st saturday 10 a.m.

nMss office gateway area chapter 1867 lackland hill pkwy, st. louis, Mo 63146 Joel [email protected]

talk Ms groups bring together people who share a common life experience for support, education, and mutual aid. They are led by trained volunteers.talk mS groUpS


illinoisBelleville/ o’fallon

2nd sunday 2:30 p.m.

first united Methodist church 504 east highway 50, o’fallon, il 62269 amy (618) 235-4226

central illinois

4th Monday 7 p.m.

richland Memorial hospital 800 east locust st., olney il 62450

tony (618) [email protected]

herrin 3rd saturday 1-3 p.m.

first Baptist churchroyalton, il709 West 3rd street south royalton, il 62983

donna fisher (618) 751-0638

highland1st & 3rd Wednesday 10:30 a.m.

Weinheimer community center1100 Main streethighland, il 62249

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

Jerseyville 2nd tuesday 6-8 p.m.

1st presbyterian church of Jerseyville 400 s. state st., Jerseyville, il

[email protected]

s’myelin gang of litchfield

4th tuesday 6:30 p.m.

christian church of litchfield 131 yaeger lake trail, litchfield, il 62056

ruth (217) [email protected]

Metro east4th tuesday of even numbered months, 7 p.m.

linc, inc. #15 emerald terrace, swansea, il 62226

diane (618) 235-8823 [email protected]

specialiZed groups

creative art experience

3rd saturday10 a.m.

nMss office1867 lackland hill parkwayst. louis, Mo 63146

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

Ms fun, friends & food

1st tuesday in feb., May, aug. & nov.6 p.m.

david c. pratt cancer center Mercy hospital 607 s. new Ballas rd.st. louis, Mo 63147

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

Veterans with Ms

2nd Wednesday 10 a.m.

Veterans admin. Medical center 1 Jefferson Barracks dr.st. louis, Mo 63125

lynn seymour, dpt [email protected] or 314-652-4100 ext. 64037

talk mS groUpS


ST. LoUIS addReSS CoNTaCT aCT. oFFeRedBridgeton community center 4201 fee fee road, Bridgeton, Mo 63044 314-739-5599carondelet park rec plex 930 holly hills ave, st. louis Mo 63111 314-768-9622center of clayton 50 gay avenue, clayton , Mo 63105 314-290-8511downtown yMca 1528 locust street, st. louis, Mo 63103 314-436-4100edward Jones family yMca 12521 Marine ave., st. louis, Mo 63146 314-439-9622emerson family yMca 3390 pershall road. st. louis, Mo 63135 314-521-1822Jcc - Marilyn fox Building 16801 Baxter rd. chesterfield, Mo, 63005 314-442-3428Jcc - staenberg family comp. 2 Millstone campus dr. st. louis, Mo 63146 314-432-5700Kirkwood family yMca 325 n. taylor. st. louis, Mo 63122 314-965-9622Maryland heights centre 2344 McKelvey rd, Maryland hhts, Mo 63043 314-738-2599Mid-county yMca 1900 urban drive, st. louis, Mo 63144 314-962-9450Mercy Medical Building 12348 old tesson, suite 220, st. louis, Mo, 63128 314-729-0181show Me aquatics 2085 Bluestone dr, st. charles, Mo 63303 636-896-0999south city family yMca 3150 sublette avenue, st. louis, Mo 63139 314-644-3100south county family yMca 12736 southfork rd, st. louis, Mo 63128 314-849-4668st. charles county yMca 3900 shady springs ln, st. peters, Mo 63376 636-928-1928cancer support community 1058 old des peres rd, st. louis, Mo 63131 314-238-2000The lodge in des peres 1050 des peres road, st. louis, Mo 63131 314-835-6150The pointe at Ballwin com. 1 Ballwin commons circle, Ballwin, Mo 63021 636-227-8950riverchase 990 horan dr, fenton, Mo 63026 618-343-0067Washington four rivers family yMca 400 grand avenue, Washington, Mo 63090 636-239-5704

Webster groves family yMca 226 e. lockwood ave., Web. gr., Mo 63119 314-962-9622Wellbridge athletic club 7620 forsyth Bld, clayton, Mo 63105 314-746-1500Wellbridge athletic club 998 Woods Mill rd, town & country, Mo 63131 636-207-3000West county family yMca 16464 Burkhardt pl, chesterfield, Mo 63017 636-532-3100yoga saint louis 3305 Jamieson ave., st. louis, Mo 63139 314-645-9785

therapeUtIc recreatIoN SIteS

studies show exercise not only improves your overall health and well-being, but also helps manage many Ms symptoms. Move forward through exercise and find a program in your community or become an expert in using a healthy lifestyle to help manage Ms.

Financial assistance may be available to help you pay for therapeutic recreation classes and memberships. To apply for assistance call the MS Navigator at 1-800-344-4867. Please contact the facility of choice and determine if the facility will meet your desired needs to ensure a rewarding experience. Please note the Gateway Area Chapter makes every effort to ensure all facilities are accessible to meet the needs of people living with MS. If you think the facility would like education on MS, please contact the Chapter office at 1-800-344-4867 option 1.

Stay healthy wIth mS

aQuatics pilates tai chi yoga ZuMBa


therapeUtIc recreatIoN SIteS

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

MId-MISSoURI addReSS CoNTaCT aCT. oFFeRedcolumbia activity and rec. center 1701 W. ash street, columbia, Mo 65203 573-874-7700

Jefferson city yMca 424 stadium Boulevard, Jefferson city, Mo 65101 573-761-9021Mexico family yMca 1127 adams street, Mexico, Mo 65265 573-581-1540pilates & yoga at chapel hill 2010 chapel plaza ct. suite a, columbia, Mo 65203 573-446-0224ILLINoIS addReSS CoNTaCT aCT. oFFeRededwardsville yMca 1200 esic drive, edwardsville, il 62025 618-656-0436John a. logan college 700 logan college road, carterville, il 62918 618-985-3741 collinsville Maryville troy yMca 1 town center drive, Maryville, il 62062 618-346-5600

columbia-Monroe physical & sports Medicine 880 columbia centre, columbia, il 62236 618-281-9699

o’fallon community yMca 284 north 7 hills road, o’fallon, il 62269 618-628-7701

one-o-one yoga 101 s graham ave # 1, carbondale, il 62901 618-457-8186SoUTheaST MISSoURI addReSS CoNTaCT aCT. oFFeRed

Black river coliseum 301 south 5th street, poplar Bluff, Mo 63901 573-686-8001cape girardeau Municipal pool 1920 Whitener street, cape girardeau, Mo 63701 573-335-4040

parc fitness center 2620 n. Westwood Blvd., poplar Bluff, Mo 63901 573-686-5985simply yoga 1504 preacher roe #2, West plains, Mo 65775 417-293-1184

aQuatics pilates tai chi yoga ZuMBa

get yoUr mS exercISe oN WheRe: Mercy Therapy service gym, 1176 town & country commons, chesterfield, Mo 63017 WhaT: 12-week session - 1 hour class; comprehensive fitness for all levels of ability INSTRUCToR: nancy dollenmeyer, Mpt, Mscs, Mercy Therapy services CoST: $125 for 12-week series (option of a 1 day charge to try out class is $10.42 CLaSS TIMeS: tuesdays or Thursdays, 9-10 a.m. ReGISTRaTIoN: call nancy at 636-893-1107 or email [email protected]



Get inspired. Meeting medical specialists. Connect with others.

All at a Novartis MS Education Link Event.

A Healthcare Professional is talking multiple sclerosis (MS) and treatment. __________________________________________________________

October 20, 2015 at 6:15PM

Speaker: Barry Singer, MD Maggiano's Little Italy

2 The Boulevard, Saint Louis, MO 63117

November 9, 2015 at 6:30PM Speaker: Barbara Green, MD

Old Spaghetti Factory 17384 Chesterfield Airport Road, Chesterfield, MO 63005

__________________________________________________________ Save a seat for a friend.

Accessible to folks in wheelchairs or who need assistance. Light meal served. Validated parking.

Space is limited. Please RSVP by calling 1-866-682-7491

Catch a Web event from home at ms-web-events.com




Speaker: Sudhir Batchu, MD Saint Louis, MO

Location: Ruthie D's 4466 Hoursehoe Bend Osage Beach, MO 65065

Event Code: TR323522 (1265921)




Speaker: Mark Tullman, MD Medical Director The MS Center for Innovations in Care at the Missouri Baptist Medical Center

Location: Table Three 16765 Main Street Wildwood, MO 63005

Event Code: TR324430 (1268098)

fall 2015 ms conn ection magazine · annual meeting of the americas and european committees for...

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