summer 2014 msconnection: south central edition

SUMMER 2014

M O V I N G T O W A R D A W O R L D F R E E O F M S

In this issue:

MyStoryThis Is

Erin HulinInspiring others atthe 2014 NationalPublic Policy Conference

Volunteers Leadingthe Movement byLeading Others

On the Move Luncheonis More Than an

Inspirational Story

PlanningWise Brings Financial, Career &Life Coaching After

MS Diagnosis

Arkansas • Louisiana • New Mexico • Oklahoma • Texas

1-800-344-4867NationalMSSociety.org

The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.

Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.

We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.

If You or SomeoneYou 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 MS Society at

nationalMSsociety.org or

1-800-344-4867 to learn

about ways to help manage

multiple sclerosis and about

current research that may one

day reveal a cure.

MS STOPS PEOPLEFROM MOVING

WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT®

Board of Trustees ChairmanERNEST JOHNSON

HOUSTON, TEXAS

TreasurerDON McCORMACK

HOUSTON, TEXAS

SecretaryDAVID CARDERTULSA, OKLAHOMA

Regional Executive Vice PresidentMARK NEAGLI

Summer 2014VOLUME 8 • ISSUE 3

ARKANSASLittle Rock

1100 N. University, Ste. 255Little Rock, AR 72207Phone: 501-663-8104

LOUISIANAMetairie/New Orleans

4613 Fairfield St.Metairie, LA 70006

Phone: 504-322-3790

NEW MEXICOAlbuquerque

3540 Pan American Fwy NE, Ste. F

Albuquerque, NM 87107Phone: 505-243-2792

OKLAHOMAOklahoma City

730 W. Wilshire Blvd., Ste. 103Oklahoma City, OK 73116

Phone: 405-488-1300

Tulsa4606 East 67th St., Ste. 103

Tulsa, OK 74136Phone: 918-488-0882

TEXASAmarillo

3350 Olsen Blvd., Ste. 1700Amarillo, TX 79109

Phone: 806-468-8005

Austin9600 N. Mopac, Ste. 150

Austin, TX 78759Phone: 512-340-2700

Houston8111 N. Stadium Drive, Ste. 100

Houston, TX 77054Phone: 713-394-2900

Lubbock3610 22nd St., Ste. 301

Lubbock, TX 79410Phone: 888-999-7992

Midland1031 Andrews Highway, Ste. 201

Midland, TX 79701Phone: 432-522-2143

North Texas2105 Luna Road, Ste. 390

Carrollton, TX 75006Phone: 469-619-4700

San Antonio9830 Colonnade Blvd., Ste. 130

San Antonio, TX 78230Phone: 210-694-3200

South Central Offices

Are you connected towhat’s happening in theMS Community?

getconnectedMS.orgSign up to receive Society email communications,

including our monthly MS eConnection newsletter.

MOVING TOWARD A WORLD FREE OF MS 3

The connections we make are stronger than the connections MS can destroy. Get connected with the

MS Community through events, peer support, wellness, volunteer opportunities, and advocacy. For questions

about any of the items on our calendar, or to learn about self-help groups and wellness classes, call 1-800-344-4867

or visit nationalMSsociety.org.

GET CONNECTED

AUGUST7 Smarty Pants Trivia Night, Oklahoma City

12 Can Do MS Webinar: Recognizing &Rebounding from an MS Relapse

SEPTEMBER5-7 Journey Camp, OK

6-7 Bike MS: Rock ‘N Hot

6-7 Bike MS: Pedal los Pueblos

8 Free From Falls Program Launch, OK

9 Can Do MS Webinar: Managing Your

Mood & Cognition Issues

18 Volunteer Orientation

20-21 Bike MS: Mother Road Ride

20 Walk MS: Killeen Area, TX

23 Uncorking the Cure for MS, Tulsa, OK

24 Everyday Matters Program Launches, Fort Worth, TX

25 A Vintage Affair, Little Rock, AR

CalendarNorthlake Self Help Group

(Mandeville, LA)Meets: 1st Monday of the month, 6:30-8pm

Location: St. Timothy United Methodist ChurchContact: Anna Moss, 504-322-3781

Las Cruces Self Help Group(Las Cruces, NM)

Meets: 1st Thursday of the month, 7:30pmLocation: Good Samaritan Society Las Cruces Village

Contact: Celinda Levy, 575-373-5130

Norman MS Self Help Group(Norman, OK)

Meets: 3rd Saturday of the month, 2-4pmLocation: Trinity Baptist Church Norman

Contact: Angela Dean 405-246-6267

Stillwater MS Self HelpGroup & Carepartners

(Stillwater, OK)Meets: 3rd Tuesday of the month, 6:30-8pm

Location: Stillwater Public Library room #138Contact: Kim Seagraves 405-612-0240

Daily Challenges withMS Support Group

(Houston, TX)Location: Metropolitan Multi Service Center

Meets: 1st Monday of the month, 4:30-6:30pmContact: Rebecca Torres, 713-365-9590

For a complete list of peer connectiongroups, or to learn more about how to start

a group in your community, please call800-344-4867, option 1.

Make a Connection: New Self Help Groups

Every connection counts.Join thousands of people supporting one

another and exploring the issues that shapeyour world on MSConnection.org.

MS

MSConnection • SUMMER 20144

R E S E A R C H

Progressive MSAlliance FostersInnovation in FirstRound of FundingInternational leaders from the Progressive MS Alliance

met on June 11, 2014 in Washington, D.C. to make recommendations on the first round of grants aimed at fostering innovative research to improve understanding of genetic and biological processes in progressive MS, improve clinical trials and explore re-purposing of existing drugs. The initial call for proposals for these “Challenge Awards” generated an unprecedented response – 195 applications from the best and brightest minds across 22 countries – demonstrating the power of a global approach. Funding these commitments, expected to total $1.8 million, will mark an important milestone in the international community’s commitment to solve progressive MS. This initial work is anticipated to lead to more extensive scientific collaborations through a second round of grants focused on speeding drug development and symptomatic solutions.

About the Progressive MS Alliance:

The Progressive MS Alliance is an unprecedented and rapidly growing global initiative to end progressive MS. In 2010, the Society convened the world’s leading experts in multiple sclerosis representing academia, industry, the government and sister MS Society representatives to review progress and barriers in addressing MS progression. As the most ambitious project in the history of progressive MS,

the Alliance grew out of this meeting as scientists and leaders worldwide committed to a focused approach for identifying and addressing critical knowledge and treatments gaps, and achieving breakthroughs in understanding, treating and ultimately ending progressive MS. With key leadership from the National MS Society, the Alliance harnesses the knowledge, resources and determination of organizations, donors, researchers, industry and other partners to accelerate solutions for people with progressive MS through a carefully planned and ambitious program with four key priorities:

• Better understand treatment and progression to identify treatments.

• Design shorter, faster trials to speed effective treatments to people living with progressive MS.

• Conduct trials to test existing agents to expand the pool of potential treatment options.

• Develop and evaluate new therapies to manage symptoms and improve quality of life.

With the participation of each person, organization and partner, the Progressive MS Alliance will bring an end to progressive MS.


E V E N T S

On the Moveto End MSSomething as simple as connecting for lunch and

sharing stories can inspire a group of people into raising millions to help end multiple sclerosis. MS communities in Baton Rouge, Dallas, Houston and Oklahoma City are connecting each year through On the Move Luncheons to support their family members, friends, and colleagues. They come together for an afternoon to hear passionate speakers with personal ties to MS, and they give from the heart to fund programs, services, and the vital research that will stop the disease course, restore function, and end MS forever. Houston’s On the Move Chairman Franelle Rogers enjoys hearing the speakers’ personal journeys of living with MS at each of the luncheons. “We never know what people are going through at home, but their courage to share how they live day-to-day life with MS, while maintaining a positive outlook, amazes me and touches everyone who is involved with On the Move,” she says. Past speakers have included authors Cami Walker and Lester Smith, Grammy winner Steve Tyrell, MS Ambassadors Tyler Campbell and Sue Thomas, Olympian and Basketball Hall of Famer Nancy Lieberman, reality star Austin Carty, actress Teri Garr, and researchers like Dr. Nancy Monson, PhD. Community leaders with the National MS Society are also recognized during the luncheon by Person on the Move and Company on the Move awards.

Since 2002, On the Move has raised more than $2.6 million for MS research and services within the South Central region of the National Multiple Sclerosis Society. But beyond the fundraising, the event provides connection opportunities for everyone involved. Scott Burford was diagnosed with MS in 2008, and in 2012 he began searching for a way to help others living

with MS. Timing could not have been better, because that year, Scott and his wife, Paula, were asked to be Chairs of Dallas’ On the Move Luncheon. As leaders in the MS movement, Scott and Paula see On the Move as a fun and accessible event for people living with MS, and a great way to give back to an organization that has personally helped them. “Without the National MS Society, we would not know about all of the current research and forms

of treatment that have improved Scott’s quality of life,” says Paula. “The Society’s global collaboration to find a cure for MS gives us hope for the future.” On the Move chairs, committees, and supporters work tirelessly every year to raise critical funds for the National MS Society. These successful luncheons significantly impact the Society’s ability to invest money into groundbreaking research and programs. On the Move continues to educate the public on MS, inspire people do something about MS NOW, and foster awareness to the Society’s integral role toward finding a cure. Franelle Rogers believes in On the Move’s power

Kirk Dooley (Host Committee Member & Interview Host), Jean and Walker Bateman (Honorary Chair Emeritus’), and Paula and Scott Burford (Chair Emeritus’) at the 2013 Dallas On the Move Luncheon.


to bring people together. Franelle encourages everyone, men and women, to participate in an On the Move Luncheon, because of its special attention to supporting the MS community as a whole, now and for years to come. Unique On the Move sponsorship opportunities for individuals and companies are available with levels ranging from $2,000 to $25,000. Additionally, attendees have the opportunity to win fun grab bags, featuring items like Kendra Scott jewelry, or bid on top raffle items like a private dinner with a celebrity. On The Move is one more way, along with Bike MS or Walk MS, to support loved ones affected by MS and join the larger community of individuals fervently working to create a world free of MS. Our next On the Move Luncheon is set for October 10 in Dallas, featuring country singer Julie Roberts as the keynote speaker. Baton Rouge, Houston and Oklahoma City Luncheons will take place in Spring 2015. To learn about any of these events, contact your local National Multiple Sclerosis Office at 800-344-4867, or visit nationalMSsociety.org.

Guests Deborah Duncan and Katie Brass pose with Keynote Speaker Steve Tyrell (center) at the 2014 Houston On the Move Luncheon.

Ginger Kanaly and Debbie Kanaly, guests at the 2014 Houston On the Move Luncheon


Dawn SandersWhen Dawn was diagnosed with MS in 2009, one of her first calls was to the National MS Society office in

Little Rock. Since then, she has become a true Leader in the Movement to create a world free of multiple sclerosis through volunteerism, leadership, advocacy, and fundraising. Her contributions to the Society include volunteering in the Little Rock office and for various projects and events; serving as a committee member for Walk MS: Little Rock, Bike MS: Rock’n Hot Ride, Government Relations Committee; advocating on behalf of people affected by MS in Arkansas; team captain and fundraiser for Walk MS: Little Rock; and recently serving as Auction Chair for the highly successful A Vintage

Affair in 2013. Dawn is a firm believer that everything in life happens for a reason and that she, as a person living with MS, has a purpose. Her unyielding determination to doing something NOW about MS is both evident and inspirational. Dawn currently serves as the MS Ambassador Program Manager for Arkansas.

Jeff WaltersJeff began his journey with the National MS Society in 1994 as a SAG driver for the BP MS 150 Houston-to-Austin Bike Ride. His experience as

a volunteer that weekend has led to more than 20 years of dedication, commitment and leadership to the MS movement. Currently the BP MS 150 Steering Committee Chair, Jeff commits more than 500 hours throughout

Leaders in the Movement

VO L U N T E E R

Each quarter, the Leaders in the Movement: South Central program recognizes volunteers who model the culture we envision for the entire Society; a culture in which volunteers lead, inspire and educate other volunteers. Thank you to our spring Leaders, for all the work you are doing to help create a world free of MS!


the year to ensure a safe, well-executed, successful and fun experience. That is no small task for an event the size of the BP MS 150 - an average of 13,000 cyclists that participate and over 3,000 volunteers that support it each year. He is responsible for the management and function of all committee and subcommittee members, which includes their execution of tasks, training and development, and procedures and protocols to improve efficiency and safety for all participants. Jeff is inspired by the cyclists he has met along the route. Their struggles and determination drive his reason for doing what he can to make an impact on everyone affected by MS.

Nicole Lemelle In some ways, Nicole Lemelle considers herself lucky. Living with a chronic disease is costly and can wreak havoc on a person’s finances.

Thankfully, Nicole has good insurance coverage and is able to manage the costs of healthcare and prescriptions without much trouble. Quickly after becoming involved

with the National MS Society, she realized others living with MS were not necessarily so lucky and made a decision to use her voice and talents to advocate on their behalf. As a member of the Government Relations Committee, Nicole has built solid relationships with elected officials. Through her participation in the Louisiana Public Policy Conference and advocacy efforts she lobbied to pass Louisiana House Bill 345/Prescription Drug Coverage and the expansion of the Medicaid program. Nationally recognized as a top blogger for the MS community (www.mynewmorals.com), Nicole does all she can to educate people about multiple sclerosis while reassuring and inspiring those living with MS to seize command of their own lives and to be their own advocate. She has been a contributor for the National MS Society blog and featured in Society marketing materials and programs. Nicole’s efforts on behalf of those living with MS and the Society are true testaments to her dedication to make an impact, and proof that connections count.


My StoryThis Is

C O V E R S T O R Y

by Erin Hulin

This past March, Erin Hulin joined 26 MS Activist volunteers and staff from South Central at the National Public Policy Conference in Washington D.C. It is an opportunity for individuals affected by MS to connect with their legislators, share their personal stories and urge Congress to support the priority MS issues. For many first time MS Activists, a Public Policy Conference can be an intimidating process – Will it be political? Will legislators be too busy to listen to me? Will I know what to say? Can I make a difference? However, Erin encouraged the room of Activists to understand the power of their story. Together, we can affect policies and programs that will benefit people with MS and their families across the country.


My StoryMy mom says that ever since I was born two days

early, I have had a mind of my own. That held true when I was diagnosed with multiple sclerosis three years ago at the age of 21. I had a trip planned to Little Rock, AR literally the day after an MRI showed 10 lesions on my brain. While my parents were devastated about my diagnosis, I was more worried about my trip to visit my boyfriend (who is now my fiancé) for his birthday. Even though I could barely walk and despite the obvious concerns that initially come with an MS diagnosis, I did not change my plans. During my first methyl prednisone treatment, I learned what the nurse was doing, and I packed my liquid medicine and flew to Arkansas with an IV port in my arm. That’s my story. Each of us has a unique MS story. Maybe you were diagnosed with MS, or you are a parent or a child or a spouse of someone living with MS. The disease has affected all of us in some way, and it’s time for us to do something about it. I recently traveled to Washington DC for the 2014 National Public Policy Conference. I met with legislators and staffers who have the ability to create change throughout the country. They just need our stories to help them really see what change is possible. I am 24 years old now, facing 41 years ahead of me before I am expected to retire. I graduated with a Bachelor of Science from LSU in 2010, and I achieved a Master of Science in Health Care Management from the University of New Orleans this past May. I have a lot of potential to accomplish many great things in the next 41 years before I retire; but unfortunately, my MS limits me. Although it may look as though I do not have a disability, I am challenged by my MS every single day. Knowing that I might have a lifetime of living with MS ahead of me is sometimes worrisome. MS is an unpredictable disease, which is scary. I don’t know what could happen to me in the next 5 years or 10

years or 50 years, but it’s easy to be optimistic about having MS today because of the advances in MS research over the past decade. There is so much momentum in MS research right now! It is important for research to continue so everyone struggling with MS will have medicine that works for them. Most people can’t stay on one MS therapy forever. Often times they become intolerant to it and have to switch after a few years. We need more medicine so that those living with MS can live a normal life, with as little limitations as possible. This is why I am an MS Activist and a member

of the Government Relations Committee in Louisiana. I am hopeful with the appropriate funding, we can find a cure for MS in my lifetime. If we can’t find a cure, we can at least make more medications available that will work for everyone. Some people say that I am an inspiration – being so young and determined to help those affected by MS. But in fact everyone impacted by this disease can be an inspiration, too. Legislators need to hear your story and nobody knows your story better than you do. Sign up to be an MS Activist. Connect with your members of Congress just by telling your story. The same way you would tell a friend. Just relax, be genuine, and inspire them. I would not be as healthy as I am today if it were not for

the research that happened before I was diagnosed. I am so grateful for the people who came before me and who thought it was important to figure out new treatment options for those living with MS. I intend to have a long, productive life based on the research of tomorrow. In 15 years, I want to be looking at someone who is 24 years old and be able to say she was diagnosed with MS, but because of what we are advocating for today, she is healthy. She was cured.

To learn more about Erin’s story, visit her blog at ErinHulin.com. Join Erin as an MS Activist bysigning up at nationalMSsociety.org/msactivist.

Louisiana GRC member Erin Hulin, addresses the conference attendees to the about her first-time activist experience.


South Central Region MS Activists and Society staff congratulate Arkansas GRC Chair and Volunteer Hall of Fame advocacy inductee Julie Cawthron.

Texas GRC Co-Chair Linda Roudebush and Society staff Kim Suiter prepare to meet with Texas congressional delegates on Capitol Hill.

Louisiana Government Relations Committee (GRC) members meet with Senator Charles Boustany, Jr. MD. Left to right: Jimmy Fahrenholtz, Crystal Smith, Erin Hulin, Senator Boustany, Phyllis Richard, Roi Lynne Hulin.

Oklahoma Congressman Tom Cole discusses National MS Society 2014 priority issues, including research funding and access to complex rehabilitation technology, with OK MS Activists and Society staff (left to right: Congressman Cole, Mireya Zapata, Ray Mack, J’Nell Ash and Sandra Payne).

Ever wonder what happens at the National Public Policy Conference?Here are a few photos of your SouthCentral crew in in Washington D.C.


Erin Hulin and her mom, Roi Lynne Hulin, head to meetings on Capitol Hill.

Julie Cawthron (center) Arkansas Government Relations Committee Chair, was inducted into the Volunteer Hall of Fame for Advocacy at this year’s Public Policy Conference. Left to right: Cyndi Zagieboylo, President and CEO, National MS Society; Julie Cawthron; Julius W. Hobson, Jr., National Board of Directors, National MS Society.

Texas GRC member Karen Swartz asks a question of guest speaker Mark Shriver, Senior Vice President for Strategic Initiatives and Senior Advisor to the CEO Save the Children.

South Central Region MS Activists and staff participate in a group strategy session. (Left to right, seated): Holly Ridgway, Claire Mitchell. Linda Roudebush, Julie Cawthron, Phyllis Richard, Simone Nichols-Segers. Standing, left to right: Jimmy Fahrenholtz, Crystal Smith, Mireya Zapata.

Oklahoma MS Activists Sandra Payne and J’Nell Ash, along with Society staff Mireya Zapata and Ray Mack, prepare to meet with Oklahoma Congressman Tom Cole (R- OK).

A delegation of 26 MS Activists and staff from the South Central Region (Arkansas, Louisiana, New Mexico, Oklahoma and Texas) attended the 2014 Public Policy Conference in Washington DC.


PlanningWiseHelps People Navigatethe Future

There are many issues a person has to deal with after receiving

a multiple sclerosis diagnosis. Aside from the obvious physical and emotional aspects of the disease, a chronic illness can present additional challenges to family finances, employment and future plans. To help people living with MS evaluate and plan their career path and financial future, the National Multiple Sclerosis Society offers a dynamic career, financial and life-planning program, called PlanningWise. PlanningWise provides an opportunity for one-on-one career coaching, financial planning and insurance benefit counseling via telephone, by professionally trained career coaches and financial planners. The program is designed to help people navigate the road ahead after an MS diagnosis and is available at no cost to participants. Andrea Hanson, who started working with the National Multiple

Sclerosis Society as a career coach this past year, offers a unique perspective to coaching as she’s been living with MS for the past 14 years. “Having MS helps me understand my clients,” she says.

Hanson explains that most people who are newly diagnosed have a lot of questions. They want to know if and when they should tell their boss, how to tell family

and friends and what the laws are regarding employment and having a chronic illness. “My goal is to help remove some of the fear about what’s going to happen next. I help the client learn to set boundaries and help educate them on what accommodations they can ask for in the workplace,” she explains. Because every situation is different, Hanson uses a personalized approach. “It’s important to meet a client where they are and help them work toward a goal,” says Hanson. Career coaching helps empower participants. “I want to help people take control, find acceptance and find their voice,” says Hanson. “I help people thrive because of their perceived limitations, not in spite of them. MS is something they have, not who they are,” she concludes. Mel Myers, a financial planner with more than 40 years experience, started volunteering for the PlanningWise program two years

P R O G R A M S

by Lori A. Boyd

Andrea Hanson


ago. He became involved after a friend asked if he would help provide financial counseling through the organization. “We offer several different services through the PlanningWise program, “ explains Myers. “Primarily, the work we do is trying to get people covered due to loss of health insurance. We also offer services on debt management, financial planning and can refer clients to attorneys to help set up wills, advanced directives and power of attorney,” he says. Myers provides advice on how people can preserve assets, especially while employed. “One person I advised was still working and I was able to help him structure his assets so if he had to leave the workforce he was prepared financially,” he says. Unfortunately, that isn’t always

the case. Myers says many people are reluctant to seek out help. “Mentally, they’re just not ready to admit they have a disability so it may

take a while before a person admits they need help. Sadly, a lot of people come to us after it’s too late – their

resources are gone, the money they saved was used to pay medical bills.” In these situations, Myers helps identify possible solutions, which may include getting the person in a Medicaid program or collecting Social Security. He also advises those who are still working on how to get the most out of the benefits their employer offers, like taking long-term care insurance. “PlanningWise is a great program and is offered to everyone,” says Myers. “It’s up to the individual if they want to avail themselves of the services that are offered.”

If you or someone you know wants to learn more about the program, contact the National MS Society at 800-344-4867 or visit nationalMSsociety.org.

Mel Meyer


National Multiple Sclerosis SocietySouth Central Chapter8111 North Stadium Drive, Suite 100Houston, Texas 77054

summer 2014 msconnection: south central edition

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