january 2013 ms connection newsletter

®

Colorado-Wyoming Chapter

the IndependentSpirit Fund

Independence for People living with MS

MS ConneCtion NewsletterColorado-Wyoming Chapter

Winter 2013

inSide thiS iSSUe:

giFt oF independenCe

4 8 10 11

Fda approVeS aUBagio CeleBrating VolUnteerS mS on the moVe

Denver Walk MSraiSeS $1 Millonpg. 7

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MS connection: Winter 20132

MS Connection is published by the Colorado-Wyoming Chapter, National MS Society900 S. Broadway, Suite 250Denver, CO 80209Info: 800 FIGHT MS (344-4867)

Newsletter Distribution—If you have a change of address or would like to receive MS Connection electronically, please call 800-344-4867.

If you or someone you know has MS—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. talk to your health care professional, or contact the national Multiple Sclerosis Society (nMSS) to learn about ways to help manage multiple sclerosis and about the current research that may one day reveal a cure.

the nMSS does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. the nMSS assumes no liability for the use of contents of any product or service mentioned. information provided by the nMSS is based on professional advice and expert opinion. information provided in response to questions do not constitute therapeutic recommendations or prescriptions. the nMSS recommends that all questions and information be discussed with a personal physician. the nMSS is dedicated to a world free of MS.

Chapter PresidentCarrie H. Nolan

Board of TrusteesBrandt Wilkins, ChairKyle Ocasek, Chair-ElectKathryn Spritzer, SecretaryRob Hartnett, TreasurerCarl BerglindWhit ConantElizabeth Brandon CoorsJohn Corboy, MDClaudia Curry HillChris DoerrJeff HigginsMarley Hodgson IIICraig LopezFrank MonteiroSusan PollardRichard Raymond, MDRandy Schapiro, MDTravis WhiteJo Wilson

Emeritus TrusteesGeorge Garmany, MDRalph HoldenDavid LordJanet Savage

©2013 National Multiple Sclerosis Society, Colorado-Wyoming Chapter

Carrie H. Nolan Chapter President

letter From the preSident

Dear FrieNDs,As we enter 2013 and look forward to a new year filled with promise, I thank everyone for your past year efforts, which once again led to many achievements.

Let's take time to reflect upon and celebrate these successes because they provide a strong foundation that moves forward and continues our momentum.

We hit some new milestones in 2012 including Walk MS Denver surpassing the $1 million mark in fundraising for the first time and our Bike MS events raising a record $3.8 million. Once again, our Chapter contributed more than $1 million to research, continuing our momentum to create a world free of multiple sclerosis. As the Society grows its investment in research, targeting $43 million in 2013, our local support is making an impact.

Last October the FDA approved the second oral therapy – Aubagio – to treat relapsing forms of MS. There are now nine FDA-approved disease-modifying therapies for MS. This is an exciting time in research and we expect FDA approval for several more therapies in the next 12 – 18 months.

As our 3,000 advocates prepare for the legislative session and teams and individuals across Colorado and Wyoming gear up for another inspiring event season, I want you to be aware of the comprehensive range of services the Chapter provides. You may not need a connection, guidance or specific service now, but when an issue surfaces and you may not know who to call, what to ask or where to begin, we are here for you. Guiding you through the unknown and providing important resources and support. Whether you need help with disability benefits, household and personal care assistance, home or vehicle modifications, health insurance or counseling, our information and resource specialists can be your answer and point of access.

We promise to maintain our absolute commitment to serving the 100,000 people affected by MS throughout Colorado and Wyoming and continuing our efforts that take us closer to a world free of MS. Join us and make this the year you increase your involvement, engage a few more friends, form or grow a team and/or volunteer. You’ve heard this before, but the truth never changes. Your support is integral to our success and we couldn’t do it without you.

Sincerely,

COLORADO

CureMSCo-wy.org 1-800-FIgHT MS (344-4867) 3

iN tHe News

Marley Hodgson III, CEO of Mad Greens –Inspired Eats, was elected to the board of trustees of the Colorado-Wyoming Chapter, National MS Society. Hodgson cofounded Mad Greens in 2004 to provide fresh, fast and healthy food options to consumers. Today there are 11 Mad Greens locations throughout the Front Range.

Originally from New York City, Hodgson holds a Bachelor of Arts in Biology from Colorado College and a Master’s in Business Administration from the University of Colorado. He is active in the community as a member of the University

of Colorado Leeds School of Business Board of Advisors and serves on the Board of Directors for the Deming Center for Entrepreneurship at CU. He also devotes time to the Children’s Hospital Foundation.

In 2007 he was recognized as one of Denver’s “40 under 40” top business leaders by the Denver Business Journal and was awarded the 2007 Emerging Business of the Year by the Denver Metro Chamber of Commerce. n

marley hodgSon neW BoarD MeMBer

On your tax return...make your mark to create a world free of MS.

Marley Hodgson III, CEO of Mad Greens

support the 12,000 Coloradans living with Ms and their families.

it's easy, and you will remain anonymous!

Check line 46 on your 2012 state income tax returns.

remember to ask your tax preparer to make a contribution on your behalf.

tax season is upon us! in 2012, you can turn your tax dollars into charitable contributions.

We are BaCk on the ColoraDo State inCoMe tax ForM!

Check line 46 on your Colorado State income tax Form

anD help Free the WorlD oF MS!

the IndependentSpirit Fund

Independence for People living with MS


Chapter and Community leaders Brandt Wilkins, Chapter board chair, and David Alexander generously established the Independent Spirit Fund to help people living with multiple sclerosis maintain their independence.

“Brandt and David have established a unique way to increase support for this very real issue,” said Kristin Gibbs, vice president of development for the Chapter. "This fund will ensure that there are adequate resources available to provide access to vital services, equipment, modifications and technology, all of which help people remain independent,” said Gibbs. Shelley was a 33-year-old payroll processor when she began to experience numbness in both hands. She had no

idea that the symptoms would lead to a diagnosis of MS.“Things mushroomed. I had lost my job, MS was taking a toll on my ability to live on my own and financial concerns loomed as I began to deplete my financial resources,” Shelley said. Because of the Colorado-Wyoming Chapter’s ability to connect her to support groups and disability resources, she has maintained a strong relationship with family and optimal function.

“I was thrilled to learn about the new Independent Spirit Fund, which will be a great help to people trying to maintain their independence.”said Shelley. n

DeVelOPMeNt

the Walker family, of team SugarBee, was recently inducted into the Society hall of Fame for Funding the mission.

For two decades the family has been a staple of Bike mS starting when Kelly, "the SugarBee", was diagnosed with mS at 22. they have raised more than $1 million in 20+ years of participating.

FroM leFt: Tim Walker, Jr., Betty Walker, Eli Rubinstein (National Board Chair), Chris Stroh, Tim Walker, Cyndi Zagieboylo (CEO, National MS Society), Eric Walker

nMSS SnapShot

Give the Gift of independence

to support the independent Spirit Fund, donate online at www.nationalMSsociety.org/iSF or for more information contact kristin Gibbs at 303-698-5430.

Shelley has faced challenges to her independence and thanks Chapter patrons Brandt Wilkins and David Alexander for establishing the Independent Spirit Fund.


aDVOCaCY

Denials of services to Medicare Beneficiaries Living with MS settled

in 2010, the Society joined a lawsuit that challenged the Center for medicare and medicaid Service’s (CmS) practice of denying medicare coverage to people who are unable to show their improvement from certain skilled care services, including therapy. this practice has been particularly impactful for people with chronic, degenerative diseases such as mS. many times therapy may be exactly what is needed to help slow deterioration. this is contrary to the established law and the government has agreed to take corrective action so that this practice will not happen in the future. thanks to our activists for making their voices heard!

mediCal laWSUit

Victory

For more information visit:www.nationalMSsociety.org/coccalendar

UpCoMinG proGraMS

• MS 101 for the Newly DiagnoseddenVer (3-part series) Begins Jan. 7th, 5:30-7 pm

• Support Partner Series: Maintaining Balance Fort CollinS (2nd session) Feb. 4th, 6-7:30 pm

• take Complementary and alternative Medicine and MS teleConFerenCe Feb. 7th, 7:30-8:30 pm

• Control: A Fatigue and Cognitive Skills WorkshopColorado SpringS (Every Wednesday) Feb. 20th-March 27th, 10:30am-12:30pm

• Moving Forward: Living with MS in the Early Years loVeland March 2nd, 9:30am-12:30pm

• How to Remyelinate the Brain in MSgrand JUnCtion March 7, 11:30am-1pm

• Empower Yourself through Physical ActivitymontroSe March 14, 11am-1pm

advocacy at Work in Wyoming Changing tax exemptions for adaptive Vehicles Activists in Wyoming are hard at work alongside Chapter staff and volunteer lobbyist Larry Wolfe to strengthen Wyoming law to exempt from taxes and fees the added value of improvements to vehicles adapted for accessibility. Under the proposed law drafted by our Activist Team, wheelchair lifts, hand and arm controls, pedal extensions, special seating, vehicle kneeling systems, wheelchair securement systems, and other accessibility aids would no longer be reason to increase taxes or fees on an adapted vehicle.

You can help pass this bill by calling your Wyoming State Senator and Representative today and asking that they support the change. If you have been affected by higher fees on your adapted vehicle or if you’d like more information on how you can get involved, contact Allie Moore, Public Policy Coordinator for the Chapter, [email protected], 303.698.5435. n

N A T I O N A L M S S O C I E T Y


eVeNts

Congratulationstop Fundraisers

Herbert & Laura May BaconDorris BakerCarl & Meghan BerglindDonald & Kathryn BerthiaumeJon BinghamJack & Meredith CallisonDr. Jennifer CaskeyAdam & Emily ChereckSusan & Jim ChrismanJean & David CordovaClaudia Curry HillCarol & Rene Daigre Jr.Andrew Doyle

Carolyn DreverRon EricksonChris FlingMark & Nancy FosterCaithlin GrimesDouglas & Ann GrissomDavid & Darla HallerArlene Ham-BurrJustin HartfiledMarley & Jennifer HodgsonDr. Peter & Catherine JensenMary JohnsonRobert Katz & Elana Amsterdam

Robin & Richard KellyGary KoldykeMonty & Paula LoudE. Katie McClureKen MeliesScott MillsRichard & Christine PeeblesDiane PlaceKaren & Jim PossehlPatricia RawlingsSteve SabaStephen SmithDr. Douglas States

Susan & Larry SteffenEmily StumpShane TrueKurt TylerDave & Susie WehrfritzBrandt Wilkins & David AlexanderBarish Family Foundation Harry & Jody Love Family FundLeft Hand Foundation LP Brown Foundation The Estate of Lucy Tyler Zimmerman Family Foundation

the Chapter would like to thank the following members of the golden Circle Club for supporting vital mS programs, services and research through generous donations made from July 2012 to october 2012.

golden Circle members

*Golden Circle members give an outright gift of $1,000 or more.

Congratulations and thank you to our top fundraisers for 2012. Your tireless efforts to fund promising research, provide programs and services and END MS forever are extraordinary. Our Bike MS, Walk MS, Hike MS and MuckRuckus MS events raised a record $ 6 million.

For complete lists of the Top Fundraisers and Teams from each event, visit nationalMSsociety.org/TopFundraisersCOWY.

Alone we can do so little; together we can do so much.” -helen keller

Bike MS Colorado top 10 Bike MS Wyoming top 5

hike MS top 3

Muckruckus top 3

Walk MS top 10

lesley osen Shane true Joseph icenoglelora Wesche Jonna patton

lesley osen

Max Cohen

David alexander

rob hartnett

Frank Monteiro

Brooke raymond

Jackie painter

Scott kaplan

Dorothy Mayes

katy Spritzer

Jennifer Sales

tim Beaudin

David Ballowe

Phil Yastrow

Beth leleck

Susan Chrisman

Steven natali

John obering

James Bender

Melissa o’Brien

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$31,213$11,325$5,445$5,050$3,709

$21,727

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$13,426

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$12,300$5,420$2,495

$9,120$4,490$4,430

Julie Brubakeradam ChereckBrian topping

ali Daigre Marley hodgsonBilly rogers


eVeNts

$1 MillionWalk mS denver raises

“This was a wonderful achievement,” said Kristin Gibbs, vice president of development for the Chapter. “This was one of 15 Walks the Chapter held throughout Colorado and Wyoming that fielded more than 14,000 walkers. We continually appreciate the outstanding support and we look forward to continuing the momentum during Walk MS 2013.” Plan now and save the dates - the 2013 event schedule is on the back page of the newsletter. n

how they Did it!

As participants enjoyed a morning of fun, inspiration and camaraderie, they were also setting a Chapter record by raising more than $1 million!

“For me, fundraising is about connections and being willing to ask for support. I get an early start, usually in February, and talk to everyone—family, neighbors, my sprinkler man, and people I meet for the first time. I have found a face to face ask for support works the best, as well as follow up, follow up, follow up!”

Sheila Sharpe, top individual fundraiser with 140 supporters and 24-year Walk MS participant

“Be persistent and reach out to people from all walks of life. Using Facebook to request support has worked well since it connects friends from the past and present and I personally follow up with past donors. We also use incentives —such as donated restaurant gift cards - to keep our team and donors motivated. We will challenge our team and give a prize for a given month and randomly select a donor who has given in a certain time period. It keeps everyone involved and excited.”

Daniel lifshen, team captain of top team “Down with Disease”, five-year Walk MS participant

“We use many creative approaches at our worksite to fundraise for our team. From March through September we have Denim Days. Employees can donate $5 a day or $20 a week to wear jeans to work. We have raffled donated sports tickets and held bake sales. Last May we sold wooden rosebuds and offered to arrange them into bouquets as Mother’s Day gifts. We also reach out to partners and vendors, and an organization located in our building for contributions.”

Wendy Fisher, co-captain, Homebuyers Warranty, 20-year Walk MS team; first Walk MS team to cumulatively raise $1 million

walkmsco-wy.org


researCH

FDa approves Second oral therapy for MSIn September 2012 the Food and Drug Administration approved teriflunomide, known by the brand name Aubagio, a once-daily oral therapy to treat relapsing forms of MS. This is the second oral therapy now available and joins Gilenya, which was introduced to the market in 2010. Another oral treatment for relapsing MS - BG12 – is currently being reviewed by the FDA for marketing approval.

Aubagio is a small molecule that inhibits the function of specific immune cells that have been implicated in MS. Two different doses have been approved and clinical trial results its effectiveness against MS relapses falls with the same ranges as that of the first generation disease-modifying therapies - interferons and glatiramer acetate.

“This is an exciting time as research is delivering more and more options to treat MS,” said Chapter President Carrie Nolan. “Having more treatment options, which now include oral therapies, is likely to mean more people using and staying on MS therapy, which is one of the best ways we currently have of reducing MS disease activity and potentially slowing the disease progression. Having an additional oral

medication for MS doesn’t necessarily mean it will be easier, safer, or less expensive and it may not be appropriate for everyone. However, it does add another option to our treatment arsenal,” Nolan continued. Every time someone participates in Bike MS, Walk MS, Hike MS or MuckFest MS, attends a Luncheon or Dinner, or makes an outright gift, they are enhancing our capacity to support promising research.” Nolan added.

Oral disease-modifying therapies are only one of many exciting treatments moving through the MS pipeline and other promising research avenues that address ways to stop MS progression, restore function and end MS forever. n

For every dollar donated to the Chapter, 81 cents was spent on programs and research. While the industry standard of the cost to raise $1 is 25 cents, it only costs the Chapter 16 cents.

FinanCial SteWardShip

For more information on

Ms research visit www.

cureMSco-wy.org

oUr reSearCh FUnDraiSinG Goal: We will raise $250 million and devote 25% of total Society revenue to MS research by the end of 2015

oUr reSearCh Goal: We are a driving force of MS research and treatment to:

Stop: We must stop all disease activity and prevent further progression for people already living with mS

reStore: We must restore all function that has already been lost to nervous system damage from mS

enD: We must work to completely eradicate mS and prevent it from ever occurring in the future

STOPPING THE DISEASE RESTORING WHAT’S BEEN LOST ENDING MS FOREVER



nationalMssociety.org

or 1-800-344-4867

NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.

walkmsco-wy.org

REgiStER toDAY

BE INSPIRED. GET CONNECTED. WALK MS.25th year


Nearly 100 constituents attended the all-male event at Sports Authority Field in September and enjoyed a day of making connections, information sharing, laughter and at times brutal honesty - no topic was off-limits. “It was great to be surrounded by guys with the same disease and to speak freely. As a man, having MS can be hard because so many more women are diagnosed than men,” said attendee Kevin Vogt.

Throughout the day of guest speakers, a question-and-answer panel, and much football analogy, there was a newfound level of inspiration. World-renowned sports psychology consultant and event keynote Dr. Jack Llewellyn, spoke of how significantly lives can be impacted by the power of choices and decisions, and the importance of focusing on the positive. Vogt added that he is now enjoying an improved attitude, noting that he learned how “decisions can make my life better or worse each day. With MS, each day can bring a new challenge, but we need to instead look at what is possible.”

For attendee Tom O’Donnell, the event shed light on how valuable all-male MS support can be. He was inspired upon learning about a men’s MS self-help group that meets in Denver, and is now working to begin a similar self-help group in Grand Junction next year.

The event was filled with inspiration, motivation and empowerment for all who attended. n

eVeNts

walk tocreate a worldfree of MS.

touchdown!a day of inspiration for men living with mS

NOW and No Opportunity Wasted utilized with permission from NOW, Inc., and in partnership with Phil Keoghan, tireless advocate and Champion for MS Research.

Walk MS 2013 early registration is NOW Open!

Find a Walk event in your area, Check out the back cover!

each Walk mS participant who registers by February 15, 2013 will

receive an official Walk MS watch* and will be entered to win a $250

amazon.com gift card.

* To be eligible, participants must indicate during registration they are fundraising for Walk MS. Supplies are limited.

26,498HOUrsin VolUnteer time 13 FUll-time employeeS=


VOlUNteeriNG

WYoMiNgMark Howsha - Programs Volunteer of the Year

Fred and Pam Culek - Special Event Volunteers of the Year

Gillette rotary Club - Rookies of the Year

sam’s Club, Casper wY- Community Partner Award

Co WeStern SlopePaulette wheeler - Special Events Rookie Volunteer of the Year

Hilary Kennedy – Special Events Volunteer of the Year

Delilah Mott – Programs Volunteer of the Year

Betty Buck - Volunteer of the Year

Co northernrichard ricchuti - Flash Award

logan Caldwell, sue lamb, Barbara sedmak, and Debra Downing - Behind the Scenes Award

Joseph Flanigan - MS Ambassador Award

Ben reser and Josh McMullen - Rookie of the Year Award

sam’s Club - Community Partnership Award

Co SoUtherntim Beaudin - Fundraiser of the Year

robin rivard - Programs Volunteer of the Year

Joe solano - Special Events Volunteer of the Year

PeNraD imaging southern Colorado - Community Partnership Award

kevin Vogt - Mission Advocate Award

Metro DenVerJulie Gunkel - Programs Volunteer of the Year

larry Cross – Special Events Volunteer of the Year

Brooke iverson – Muddiest Volunteer of the Year

stephanie swift – Behind the Scenes Hero

Volunteers are key to the success of the Chapter. At our Annual meeting in October, we honored Trevor Nelson as our Chapterwide Volunteer of the Year. Trevor has shown great dedication and commitment to supporting our mission.

Trevor hails from Cody, Wyoming. For the past 3 years he has chaired

the Cody Walk taking on the challenge of overseeing all the details necessary to create a successful event, as well as participating in a team that raised over $10,000. He has great ideas, pulls people together and works hard to get the job done. Congratulations to our 2012-13 Volunteer of the Year, Trevor Nelson.

In addition, each local office honored volunteers in their community who go above and beyond by sharing their time, talent and resources. n

of the YEARCo-Wy Chapter honors outstanding Volunteers

VolUnteer

Volunteers are the only human beings on the face of the earth who reflect this nation’s compassion, unselfish caring, patience, and just plain loving one another.” -erMa BoMBeCk

thank you to our 1,500

volunteers. You contributed:

VolUnteer aWardS


David Osmond shared his very personal MS journey through remarks laced with emotion, humor, wisdom and of course song, to a packed crowd of more than 400 attendees at the Denver On the Move Luncheon last September.

David is the son of Alan, one of the original Osmond Brothers, and nephew of Donny and Marie. He was 26 and busy launching his music career following in the footsteps of his famous family, when he began to experience extreme pain in his feet. As the pain quickly progressed to his knees, then his chest, thoughts of a temporary pinched nerve rapidly gave way to a greater health concern. Although his father had lived with MS for years, his symptoms were so different

that he didn’t associate what he was experiencing with MS. Then came the diagnosis.

Today he copes with ongoing pain, but is positive and resilient. Now 33, the married father of two is back pursuing a career as a singer/performer, while raising awareness and resources for the MS community.

Osmond shared that he doesn't ask why he has MS, because he also would have to question why he has his family, his career and success. "Perspective is important. Pain is inevitable, but suffering is optional," he added. These are powerful words of wisdom from a young man with a bright future ahead. n

Ms ON tHe MOVe

denVer on the moVe lUnCheon

osmond Wows Crowd

reaChinG oUt“I have found that being open that I live with MS and sharing my personal story is helpful. Each year I reach out to clients and colleagues asking them to purchase a seat, sponsor a table or donate mystery bag items. I have always found the business community to be very supportive and it’s an ideal way to raise awareness as well as funds."

paige Burkeholder, Vice President, Regional Sales Manager, Premier Trade Solutions, Inc.On the Move Luncheon Planning Committee

a pUBliC SerViCe“I talk about the luncheon and share it as an example of public service with peers and others involved in public service organizations. I’m also a mom and have young children, and will mention it to parents. We live in a state with high prevalence of MS and often when I mention my support of the Society and the luncheon, connections will surface. Also, never hesitate to ask!

Melissa hart, Associate Professor and Director, University of Colorado School of LawOn the Move Luncheon Planning Committee

linkinG in“My LinkedIn profile shares that I am on the Chapter’s board of trustees. I work with a wide range of vendors and suppliers and they often check the site before we meet. My role with the Chapter frequently comes up during the course of a conversation, creating the opportunity to discuss my support of the Society. I let them know about upcoming events and ask if they are interested in supporting the luncheon, Bike MS or other activity. They often do.”

Chris Doerr, Vice President of Information Technology, Gambro Colorado-Wyoming Chapter, Board Trustee

table captains and committee members play a key role in generating attendance and support for the mS luncheon.

For information on 2013 table captain and sponsorship

opportunities, visit www.cureMSco-wy.org or call

Kristin Gibbs (303) 698-5430.

how they Made Connections

yoU Can maKe ConneCtionS

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Broadway Station900 S. Broadway, Ste. 250Denver, CO 80209

MsCONNeCtiON.OrG

SaVe the DateS

ConneCt With US online:

like US. Watch Us: NMSSColoradoWyoming

april 6 Walk mS laramie13 Walk mS Cheyenne20 Walk mS Casper20 Walk mS gillette27 Walk mS rock Springs MAY 4 Walk mS denver4 Walk mS grand Junction11 Walk mS pueblo11 Walk mS northern Colorado18 Walk mS Colorado Springs18 Walk mS glenwood Springs

JUne 8 Walk mS Cody29 Bike mS Ft. Collins loop29-30 Bike mS Colorado’s ride 2 day JuLY 27 hike mS Copper mountain aUGUSt 17-18 Bike mS Wyoming ride SepteMBer 7 Walk mS Boulder County21 muckFest mS denver24 denver mS on the move luncheon tBd hike mS Winter park

january 2013 ms connection newsletter

Documents

volunteers ms

fight ms

national ms society900

world free of ms

walk ms denver

coloradowyoming chaptercarrie

bike ms events

fdaapproved therapy