MS COnneC tiOn - National MS Society

Spring 2013 OhiO Valley Chapter

MS COnneCtiOn newSletter

inSiDe thiS iSSUe

02a plaCe fOr eVeryOne at walk MS

06wOMen On the MOVe

10eVent VOlUnteering SeaSOn iS here

12regiSter tODay fOr rUn MS, MUCkfeSt MS anD Bike MS

wayS tO giVe

Many wayS tO jOin No matter where you live, what you do and who you are, there are lots of ways to participate in MS Awareness Week, March 11 to 17. We’ve collected ideas nationwide to share what people have done to raise awareness of multiple sclerosis, but MS Awareness Week is also about expressing your own unique experience of the disease. Connect with others to raise awareness at www.MSconnect ion.org o r ca l l u s a t 1-800-344-4867.

Here are some ways to get involved.

take aCtiOn• Join theMS Activist Network to contact

your legislators and urge them to support issues of importance to you and the MS community. Sign up at www.nationalMS society.org/MSActivist.

• Sign up for our monthlyMS eNEWS at

www.nationalMSsociety.org/signup for the latest on research, legislation and more that impacts people living with MS.

jOin an eVent• Register to participate inWalk MS, Run

MS, MuckFest MS or Bike MS. www.WalkMSOhioValley.org

www.RunMS.org

www.MuckFestMS.org

www.BikeMSVentureTheValley.org.• Or visitDoItYourselfMS.org to find out

how to create your own DIY event.

02 MS connection: Spring 2013

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a plaCe fOr eVeryOne at walk MS byLAuRELbENNEtt

In spring 2011, then 93-year-old Rose Hillembarked upon her third Walk MS in honor of her son Michael, who lives with multiple sclerosis. She wanted to do something to help Michael, and so many others who are affected by the disease, live better lives.

toget in shape for thebigday,Rosewalkedlaps around her retirement home, determined to be ready for the four-mile Walk MS route. Onthedayoftheevent,Rosemadeithalfwaybefore she started to feel tired. Her family asked if she wanted a ride to the end and her reply was, “No way!” Grandchildren, children and friends held onto her arms and together they trekked toward the finish line. The next year, at 94,RoseregisteredforWalk2012asco-captainforherteam,ARoseforaCure.

There is a place for everyone at Walk MS. Family members from grandparents to tiny toddlers, people newly diagnosed with MS, people with progressive MS, friends, coworkers and more all take part in Walk MS events across the nation. Walk MS is for anyone who wants to do something about MS now.

Whatever your experience is with MS, we invite you to join us. Be a part of the Walk MS

community. Start a team, join a team, volunteer or be there cheering participants along to the finish line. Connect with new people, learn

about our programs and services, and help us get closer to a cure. Go to www.walkMSOhioValley.org or call 1-800-344-4867 today.

Laurel Bennett is a staff writer for Moore Ink.

the firSt Steptwenty-five years ago, people livingwith MS and those who cared about them decided to take their first steps, literally, toward joining the movement to end multiple sclerosis, walking from downtown Minneapolis to the state capitol in St. Paul in the first Walk MS event. they raised $216,000 towardresearch and service programs for people withMS.theideaquicklyspread,withWalk MS events taking place in more cities across the nation the very next year. today,WalkMS events raise $50milliona year, with more than 330,000 people participating nationwide.

rOSe hill with her twO SOnS, MiChael, at left, whO liVeS with MS, anD larry

03nationalmssociety.org | 1-800-344-4867

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a walk MS BrainStOrMA GuESt ARtICLE by PENNy AkE,SPRINGfIELd,OHIO

Walk MS is approaching for those of us in the SouthwestOhio region. 2012 wasmy firstyear to participate in the Springfield, Ohiowalk. I had been diagnosed with multiple sclerosis in 2011.

While I was able to rally support among family, friends and coworkers, our planning did not begin until March. The walk took place in April. We made the last moment rush worthwhile, raising nearly $3000 in ashort amount of time.

Using the lessons learned from last year’s fundraising, I am taking a much different approach for 2013. I hope some of these ideas will be helpful to you as Walk MS approaches.

I have enlisted the help of two co-captains. This enables our team to recruit the maximum number of people, while also helping with many details. Both co-captains have a connection to MS; one through her husband, the other lives with MS.

This excited group of leaders met at the end ofJanuarytobrainstormideas,andreportanysuccesses.Ourcurrentideasinclude:

Raffleswhichwill be held prior to thewalkdate. We have already approached several local businesses and have successfully received support. One local massage therapist hasofferedafreemassageasaraffleprize.

WeareholdingapartywithaThirtyOnegiftconsultant and using the hostess points to purchase products which we will also use as raffleprizes.Theconsultanthasalsograciouslyoffered to donate 10% of the total party proceeds to our MS effort!

Wehaveawonderfullocaltshirtvendorwhois creating and making our team shirts. We will also sell shirts. This allows us to donate some proceeds to the National MS Society.

One of our most innovative thoughts isapproaching a local tattoo artist to see if he might donate time or proceeds from an MS day in his shop.

youmightask,“Whoisgoingtobuyaraffleticket for a free tattoo?” In my community, there are plenty who would find this a great deal. The point is – use your imagination when thinking of donors and donations. An ideaImayconsidercrazycouldbesomethingof value to you.

knowyourcommunity,knowyouraudience,and brainstorm away! These targets should help guide you during preparation and implementation.

The views, endorsements, and opinions of the guest writer do not necessarily reflect the views of the National MS Society. If you would like to be a guest writer, please email Rich Walburg at [email protected].


reSearCh

prOgreSS On MS therapieSbyMEGANWEIGEL,CNP,ARNP-C,MSCN

In 1993, Betaseron was released to market as the first disease-modifying therapy for multiple sclerosis. With the approval of oral teriflunomide (brandnameAubagio®)bythefdAinOctober,2012, we now have nine disease-modifying therapies to treat relapsing forms of MS—and more on the horizon. The MS Emerging Therapies Collaborative, which includes the Society, provides downloadable information sheets at www.ms-coalition.org/emergingtherapies to facilitate communication between doctors and people with MS about newly approved treatments.

Researchonpotentialtreatmentsforprogressiveforms of MS is also underway and the International Progressive MS Collaborative, of which the Society is a member, plans to do all it can to speed the development of those treatments.

Here are the therapies to keep an eye on as we move forward into 2013.

BG-12 is an oral fumarate that has been used inEuropeforoveradecadetotreatpsoriasis.Although its exact mechanism of action is not known, it is thought to inhibit immune cells active in MS and may even be protective against damage to the brain and spinal cord.

twolargephaseIIIstudies(thedEfINEtrialand theCONfIRMtrial, respectively) foundthat BG-12 significantly reduced relapses and diseaseactivityasdetectedbyMRI.Themostcommon side effects were flushing of the skin and gastrointestinal upset. In 2012, Biogen Idec applied to the FDA for approval of BG-12 to treat relapsing MS, and the review process is now underway, with the FDA’s decision expected within the year.

Alemtuzumab, a monoclonal antibody that depletes circulating immune (t and b) cellsthought to be responsible for MS attacks, would be administered by IV infusion for five days and then for three days one year later.

GenzymeappliedtothefdAforapprovalofalemtuzumabtotreatrelapsingMS,basedonpositive results from several clinical trials, includingonethatshoweda55%decreaseinrelapses compared to interferon beta 1a (Rebif );however,thefdAaskedthecompanyto resubmit its application, so a timeline has not yet been established. While this therapy is


powerful against MS, there is concern regarding adverse events, such as immune thrombocytopenic purpura (ItP, a bleeding disorder), andautoimmune thyroid disorders.

Laquinimod is a once-daily oral immune modulator that proved in phase III studies to statistically significantly decrease relapse rates, though not as robustly as investigators had hoped. This drug is about to be tested in another phase III study in 1,800 people with relapsing-remitting MS.

Daclizumab and ocrelizumab are two other monoclonal antibodies currently under study, with favorable results thus far. A highly concentratedliquidformulationofdaclizumabis under study in relapsing-remitting MS. Experimentalocrelizumab,givenintravenously,significantly reduced disease activity on MRI scans in a study of 218 people withrelapsing-remitting MS. One person died dueto brain edema; however, the relation of this death to the medication is unclear. Additional research, now going on in primary-progressive MS and relapsing-remitting MS, is needed to further determine ocrelizumab’s safety andbenefits.

Clinical trials of treatments for progressive forms of MS are currently underway: theseinclude natalizumab (Tysabri), fingolimod (Gilenya) and ocrelizumab.

Making ChOiCeSWhen we consider treatment now, in particular the possibility of switching therapies, we weigh the safety and efficacy of our older, injectable disease-modifying agents against the seeming

convenience and perhaps superior efficacy of newer agents. The sequencing of therapies is a new consideration, as well, as the effects of medications like natalizumab and fingolimodon the immune system may be prolonged. Questions about new therapies may mean longer or more frequent appointments with neurologists to discuss their risk-benefit ratios.

Additionally, people with MS may choose to see an MS specialist, or be referred to one by a general neurologist, for treatment recommendations.

However, the most encouraging part, in addition to the fact that treatments for MS may be getting more effective, of course, is that the research pipeline is full. Thanks to those who are committed to research funding, science is able to continue searching for the cure, and on that search, discover medications that will keep this disease as quiet as possible.

to follow progress on potential MStherapies, sign up for MS eNEWS atwww.nationalMSsociety.org/signup, or visit www.nationalMSsociety.org/research.

Megan Weigel is a Doctor of Nursing Practice and MS Certified Nurse who has been caring for people with MS for 12 years. This article was originally published in the North Florida Chapter’s MSConnection newsletter.


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VOlUnteerS plan faShiOn ShOw anD lUnCheOn

Ah, spring! Models will walk the runway with flair at the fourth annual “Women on the Move” Luncheon & Fashion Show presented byPerformanceLexusatthekenwoodCountryClub on Monday, April 22. Doors open at 11 a.m.

The fashion show features sweet spring styles from local boutiques including Alligator Purse, CastleHouse,kateandkhakisofHydePark,brooksbrothersofkenwood,Sarabenjamin’sof Mariemont and Donna Salyers’ Fabulous Furs of Covington. Fashions for every member of the family will be showcased.

As an extra special attraction at the show this year, the University of Cincinnati’s Fashion designprogramwillpresentapproximately25

fashions designed exclusively by its students. Ben-Gal and Ben-Gal alumnae will be among the models. two female vocalists from uC’sCollege Conservatory of Music will perform. The crowning of the “2013 Woman on the Move”isalsoontheevent’sagendaandWCPOChannel 9’s Emmy-award winning chiefmeteorologistSteveRaleighservesasMasterofCeremonies.

In addition, auction packages will be offered. Theeventraised$48,000forthelocalChapterof the National MS Society last year and stands as is one of its pre-eminent fundraisers during the year. The Society serves more than 6,000 area residents with MS and their families. It is committed to finding the cause of MS and a cure, while ensuring that people living with MS across the Chapter have the information and quality care they need to live healthy, productive and independent lives. MS interrupts the flow of information between the brain and the body and stops people from moving. The National MSSociety’smissionistomobilizepeopleandresources to drive research for a cure and to address the challenges of everyone affected by MS.

Platinum ($5,000), Gold ($2,500), Silver($1,000)andbronze ($750) sponsorshipsareavailable. ProScan Imaging and Questcor Pharmaceuticals are runway sponsors. Donations for the event are being accepted. Individualtickets:$65;tablesrangefrom$750to$2,500. for reservations and to “join themovement toward a world free of MS,” call MaryWrightat513-956-4110.Seatingcapacityis 400 and tickets sell out quickly


aDVOCaCy

what the legiSlatiOn MeanS bytEdtHOMPSON

After intense negotiations in January, theAmerican taxpayer Relief Act of 2012 wassigned into law, which averted the so-called “fiscal cliff,” a drastic convergence of increased taxes and reduced spending. No more crisis, but what does the new legislation mean to people living with multiple sclerosis?

what’S in the lawSome of the health and other provisions in the new law that may impact people living with MSinclude:

n A delay until December 31, 2013, to a scheduled 26.5% cut to Medicare physicians.

n An extension to the same date of the Medicare therapy cap exceptions process, which ensures that people with MS can continue to access needed outpatient therapy services.

n A repeal of the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insurance program intended to help maintain community residence and independence. However, the law sets up in its place a

bipartisan commission tasked with developing legislative long-term care alternatives.

n A delay of two months to across-the-board cuts (the “sequester”) to defense and non-defense programs, including medical research.

n A limit on itemized deductions for individuals making over $250,000 a yearand families earning over $300,000 peryear; however, no limit or cap on charitable deductions was put in place.

Make yOUr VOiCe hearDThe 113th Congress was sworn in and commenced January 3, 2013. With the across-the-boardcuts only delayed for two months and the debt limit not increased, members of Congress will hit the ground running. Sign up at www.nationalmssociety.org/MSActivist, and follow the MS Activist blog (www.MSactivist.org) andtwitter,@MSActivist to stay tuned for opportunities to weigh in with your legislators over the next several weeks on the importance of protecting medical research and programs like Medicaid and Social Security. n

tedThompsonistheSociety’svicepresidentoffederalGovernmentRelations.

Day Of aCtiViSM in waShingtOn State


awareneSS

faMily tieSTheOhioValleyChapterhas received severalkind notes and photos (from across the country) regardingourNationalMSSocietybowtie.

Herearejustafew:

I just wanted to thank you for helping me get theMSbowtie.Mywifeandfamilylovedtheidea. Her sister gave me a big hug and kiss with tears in her eyes. Here is a picture of us from Newyear’sEve.

- Brandon

My husband loved the bowtie, I attached a picture of him wearing it on New yearsEve.I’vebeenliving with MS for 2 years now and my husband participated

in the MS Bay to Bay bike rides out here in California and was excited to show his support

for our cause with his bowtie as well. It is very much an at-tention grabber and he loved explaining what and how it represents MS.

- Venessa

Get a National MS Societybowtieofyourown!Alimitedamountremainforjust$57each.

The colors are silver and orange. The dots on the tie are depictions of a healthy myelin sheath, making this tie truly connected to the mission of the National MS Society.

to purchase, please email or phone MaryWrightat513-956-4110.AllproceedsbenefittheOhioValleyChapterof theNationalMSSociety.

to share your National MS Society bow tiephotos and stories, please email Mary at [email protected].

Special Thanks to dhani Jones and ChadWilliamson of bow tie Cause for theirdedication to this project!


liVing with MS

whiCh path will yOU take?giVe Up Or liVe well?A GuESt ARtICLE by StEPHANIEMItCHELLOfVANdALIA,OHIO

Living with MS is still about LIVING.

I was diagnosed with Relapsing RemittingMultipleSclerosis(RRMS)inApril2011,andmade a conscious choice that MS does not (yet) define me and I will continue to live my life as best as I possibly can.

Overthelastyear,Ididn’treallylivethatmottoto its fullest.

Now, my mentality is to always be fully engaged in my life. Whether I am taking the dogs out to the bark park, helping Mom move 1,000 miles fromOhio to florida, or simply vacationingwith family and friends, I want to be in the moment 100 percent – naps included.

That’s not to say I won’t have down moments; we all do, we all will. It’s a matter of choosing to allow those moments to take hold of my life, orrealizingthatthis,too,shallpass.

I know I am very lucky. My MS was diagnosed

early in its onset, after one “episode”. Anyone living with MS, and any MS supporter/caregiver, knows that, just like with any other disease, everyone is an individual and each person’s MS stage and treatment method is as equally unique.

Sometimes, I have weakness in my hands and can’t grip a hammer on a home remodeling project. Other times, symptoms from mymedication make me exhausted or severely achey. When I exercise, the tingling in my legs may start sooner versus later.

Do I enjoy exercising? Nope. Never have. Am I glad I did it, once I’m finished? Yep. Always am.

Don’t give up.

Don’t give in.

But never be ashamed to ask for help when you need it.

Stephanie Mitchell lives in Vandalia with her teenage son, and two dogs.


10 MS COnneCtiOn: Spring 2013

prOgraMS

CaMp COnneCt 2013

Camp Connect

June 7th – 9th, 2013

Camp Lazarus, Columbus Ohio

JointheNationalMSSocietyforaweekendoffun and excitement at Camp Connect, a kids’ camp hosted by the National MS Society, OhioBuckeye Chapter.

Throughout the weekend kids will have the opportunity to get to know others sharing in a similar situation – having a parent living with MS.

Activities will include swimming, canoeing, sports, arts & crafts, and more. There will also be informational sessions about multiple sclerosis, feelings experienced, and other hard to d i s cus s top ic s fo r children.

AnyonelivinginthestateofOhioiswelcometo apply. Please click here for full details on submitting an application for a camper or camp counselor.

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it’S eVentVOlUnteer SeaSOnYour gift of time, treasure, and talent has the power to change the world for people living with MS. Are you able to donate a few extra hours to help?

Please signuptOdAytogetyourchoiceofthese2013volunteeropportunities:

n HeartMiniMarathonExpo,March16th:PromoteRunMS,MuckfestMS,andbikeMS at the National MS Society booth.

n WalkMS,April13th,20th,and27th:Plentyof shifts and opportunities available.

n RunMS,April27th:Ournewestevent!n flying PigMarathon Expo,May 3rd and

4th- Promote MuckFest MS, and Bike MS at the National MS Society booth.

n findlayMarket,May11th,18th,and25th:Promote MuckFest MS, and Bike MS at the National MS Society booth.

n And more...formore information, please email RebekahSchraer at [email protected] or phone 513-956-4110.

Volunteer at Walk MS, Run MS, MuckfestMS, and/or Bike MS and you will receive an official volunteer t-shirt on event day.

11natiOnalMSSOCiety.Org | 1-800-344-4867

liVing with MS

frOM My perSpeCtiVeA GuESt ARtICLE bytERRI dEARtHOfMIAMISbuRG,OHIO

I’m new to this type of column writing, but I was diagnosed with MS in 1998.

I enjoyed a very successful 20 year newspaper career, starting in 1983 as an advertising sales assistant. In 1997 I came through the ranks of advertising and marketing and rose to a publisher’s position at newspaper groups, both bigandsmall,inOhio,kansasandIndiana.

In 2003 MS had made my life too complicated and I was forced to retire. During my publisher’s roles I wrote a weekly column titled just as this one is, From My Perspective.

MS and the challenges it presents made my perspective different from others. And while the disease progressed, I enjoyed my two daughters and one son who have blessed me with 6 grandchildren who call me Nana. Ranging in age from 1 to 10, they haveexperienced time with a Nana that could walk to a Nana that is pretty much bed bound. You are never warned about how much your grandchildren will teach you about love, but there is nothing better! I thought that I loved my children a lot, but these new little lives opened up a new dimension of love.

Justlikethesurpriseofhowmuchyoucanlove

these new little ones they say there are 400,000 people dealing with MS and there are 400,000 different cases of MS. The progression of my MS has been pretty much text book. I had my last child in 1986 and one morning in 1988 I woke up and couldn’t get out of bed. twenty-four years later getting out of bed isnot something I can do.

The pain I live with everyday is my biggest challenge, not only for me but for my second husband who has been with me through all of the ups and downs of MS. We met at a country dance club in 1982 and two-stepped our way to marriage in 1984.

I often think about how much he has dealt with, how many times our lives have changed during this 28 years of marriage and how much I am loved by those who cope with me. Along the way he and I have coped with all of the changes in our lives. MS, like any other progressive disease, is unpredictable and our lives change day to day. We are in no way perfect. We both can become angry over things we don’t understand.

I also think MS weeds people out of your life. Think about your own life and the people who have chosen to stay. They too have made a choice about dealing with MS. Friends who can cope with the changes you have had still visit. Those who can’t call and say they will see you soon, but are pretty much MIA. And that’s okay.


OhioValleyChapter4440 Lake Forest DriveCincinnati,OH45242

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rUnMUCkBike

Participate in 3 great events for 1 low price!

Pleasejoinusfor:

n Run MS -Ournew5k run,April27that

Cincinnati’s Yeatman’s Coven MuckFest MS – 5 miles, menacing

challenges,muckingglory!July27thn AND Bike MS–25,50,or75milesper

day. August 24th & 25th, Camp kern,Oregonia,Ohio

Registernow–andparticipateinall3eventsforjust$100!*

PLUS – when you register for all 3 – you receive a Run-Muck-Bike vintage t-shirt!

WehopetoseeyouatRunMS,MuckfestMS,AND Bike MS!

*Each bikeMS rider is required to raise aminimumof$300toparticipateinbikeMS.Rider packets will not be released until the$300fundraisingminimumhasbeenmet.

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