MOVING TOWARD A WORLD FREE OF MS SUMMER 2014
My Story This Is
Erin Hulin
Inspiring others at the 2014 National Public Policy Conference
In this issue:
Volunteers Leading the Movement by Leading Others
On the Move Luncheon is More Than an Inspirational Story
PlanningWise Brings Financial, Career & Life Coaching After MS Diagnosis
If You or Someone You Know Has MS Studies show that early and
Arkansas • Louisiana • New Mexico • Oklahoma • Texas
ongoing treatment with an
1-800-344-4867 NationalMSSociety.org
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.
Board of Trustees Chairman ERNEST JOHNSON HOUSTON, TEXAS
Treasurer DON McCORMACK HOUSTON, TEXAS
Secretary DAVID CARDER TULSA, OKLAHOMA
Regional Executive Vice President MARK NEAGLI
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.
MS STOPS PEOPLE FROM MOVING
WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT®
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.
Summer 2014 VOLUME 8 • ISSUE 3
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ARKANSAS
Little Rock 1100 N. University, Ste. 255 Little Rock, AR 72207 Phone: 501-663-8104 LOUISIANA
Metairie/New Orleans 4613 Fairfield St. Metairie, LA 70006 Phone: 504-322-3790 NEW MEXICO
Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 Phone: 505-243-2792 OKLAHOMA
Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK 73116 Phone: 405-488-1300
Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK 74136 Phone: 918-488-0882
Lubbock 3610 22nd St., Ste. 301 Lubbock, TX 79410 Phone: 888-999-7992
TEXAS
Midland 1031 Andrews Highway, Ste. 201 Midland, TX 79701 Phone: 432-522-2143
Amarillo 3350 Olsen Blvd., Ste. 1700 Amarillo, TX 79109 Phone: 806-468-8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX 78759 Phone: 512-340-2700 Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Phone: 713-394-2900
North Texas 2105 Luna Road, Ste. 390 Carrollton, TX 75006 Phone: 469-619-4700 San Antonio 9830 Colonnade Blvd., Ste. 130 San Antonio, TX 78230 Phone: 210-694-3200
South Central Offices MOVING TOWARD A WORLD FREE OF MS
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GET CONNECTED
MS Calendar
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.
AUGUST 7 Smarty Pants Trivia Night, Oklahoma City 12 Can Do MS Webinar: Recognizing & Rebounding from an MS Relapse
SEPTEMBER 5-7 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
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A Vintage Affair, Little Rock, AR
MSConnection • SUMMER 2014
Make a Connection:
New Self Help Groups Every connection counts.
Join thousands of people supporting one another and exploring the issues that shape your world on MSConnection.org.
Northlake Self Help Group
(Mandeville, LA) Meets: 1st Monday of the month, 6:30-8pm Location: St. Timothy United Methodist Church Contact: Anna Moss, 504-322-3781
Las Cruces Self Help Group
(Las Cruces, NM) Meets: 1st Thursday of the month, 7:30pm Location: 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, 2-4pm Location: Trinity Baptist Church Norman Contact: Angela Dean 405-246-6267
Stillwater MS Self Help Group & Carepartners
(Stillwater, OK) Meets: 3rd Tuesday of the month, 6:30-8pm Location: Stillwater Public Library room #138 Contact: Kim Seagraves 405-612-0240
Daily Challenges with MS Support Group
(Houston, TX) Location: Metropolitan Multi Service Center Meets: 1st Monday of the month, 4:30-6:30pm Contact: Rebecca Torres, 713-365-9590 For a complete list of peer connection groups, or to learn more about how to start a group in your community, please call 800-344-4867, option 1.
RESEARCH
Progressive MS Alliance Fosters Innovation in First Round of Funding I
nternational 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.
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:
About the Progressive MS Alliance:
• Conduct trials to test existing agents to expand the pool of potential treatment options.
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,
• Better understand treatment and progression to identify treatments. • Design shorter, faster trials to speed effective treatments to people living with progressive MS.
• 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.
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EVENTS
On the Move to End MS S
omething as simple as connecting for lunch and Since 2002, On the Move has raised more than sharing stories can inspire a group of people into $2.6 million for MS research and services within the raising millions to help end multiple sclerosis. South Central region of the National Multiple Sclerosis MS communities in Baton Rouge, Dallas, Houston Society. But beyond the fundraising, the event provides and Oklahoma City are connecting each year through connection opportunities for everyone involved. On the Move Luncheons to support their family Scott Burford was diagnosed with MS in 2008, and members, friends, and colleagues. They come together in 2012 he began searching for a way to help others living for an afternoon to hear with MS. Timing could not passionate speakers with have been better, because personal ties to MS, and that year, Scott and his they give from the heart to wife, Paula, were asked to fund programs, services, be Chairs of Dallas’ On the and the vital research that Move Luncheon. As leaders will stop the disease course, in the MS movement, Scott restore function, and end and Paula see On the Move MS forever. as a fun and accessible Houston’s On the event for people living with Move Chairman Franelle MS, and a great way to give Rogers enjoys hearing the back to an organization speakers’ personal journeys that has personally helped of living with MS at each of Kirk Dooley (Host Committee Member & Interview Host), them. the luncheons. “We never “Without the National Jean and Walker Bateman (Honorary Chair Emeritus’), and Paula and Scott Burford (Chair Emeritus’) at the 2013 know what people are MS Society, we would going through at home, but Dallas On the Move Luncheon. not know about all of the their courage to share how current research and forms they live day-to-day life with MS, while maintaining a of treatment that have improved Scott’s quality of life,” positive outlook, amazes me and touches everyone who says Paula. “The Society’s global collaboration to find a is involved with On the Move,” she says. cure for MS gives us hope for the future.” Past speakers have included authors Cami Walker On the Move chairs, committees, and supporters and Lester Smith, Grammy winner Steve Tyrell, MS work tirelessly every year to raise critical funds for Ambassadors Tyler Campbell and Sue Thomas, Olympian the National MS Society. These successful luncheons and Basketball Hall of Famer Nancy Lieberman, reality significantly impact the Society’s ability to invest money star Austin Carty, actress Teri Garr, and researchers like into groundbreaking research and programs. Dr. Nancy Monson, PhD. Community leaders with the On the Move continues to educate the public on MS, National MS Society are also recognized during the inspire people do something about MS NOW, and foster luncheon by Person on the Move and Company on the awareness to the Society’s integral role toward finding Move awards. a cure. Franelle Rogers believes in On the Move’s power
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MSConnection • SUMMER 2014
Guests Deborah Duncan and Katie Brass pose with Keynote Speaker Steve Tyrell (center) at the 2014 Houston 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.
Ginger Kanaly and Debbie Kanaly, guests at the 2014 Houston On the Move Luncheon
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VO L U N T E E R
Leaders in the Movement
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!
Dawn Sanders When 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
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MSConnection • SUMMER 2014
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 Walters Jeff began his journey with the National MS Society in 1994 as a SAG driver for the BP MS 150 Houston-toAustin 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
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.
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COVER STORY
This Is
My Story 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. 10
MSConnection • SUMMER 2014
M
y mom says that ever since I was born two days years or 50 years, but it’s easy to be optimistic about early, I have had a mind of my own. That held having MS today because of the advances in MS true when I was diagnosed with multiple sclerosis three research over the past decade. years ago at the age of 21. I had a trip planned to Little There is so much momentum in MS research Rock, AR literally the day after an MRI showed 10 right now! It is important for research to continue so lesions on my brain. While my parents were devastated everyone struggling with MS will have medicine that about my diagnosis, I was more worried about my trip works for them. Most people can’t stay on one MS to visit my boyfriend (who is now my fiancé) for his therapy forever. Often times they become intolerant to birthday. it and have to switch after a few years. We need more Even though I could barely walk and despite medicine so that those living with MS can live a normal the obvious concerns that initially come with an MS life, with as little limitations as possible. diagnosis, I did not change my plans. During my first This is why I am an MS Activist and a member methyl prednisone treatment, I of the Government Relations learned what the nurse was doing, Committee in Louisiana. I am and I packed my liquid medicine hopeful with the appropriate and flew to Arkansas with an IV funding, we can find a cure for MS port in my arm. in my lifetime. If we can’t find a That’s my story. cure, we can at least make more Each of us has a unique MS medications available that will story. Maybe you were diagnosed work for everyone. with MS, or you are a parent or a Some people say that I am an child or a spouse of someone living inspiration – being so young and with MS. The disease has affected determined to help those affected all of us in some way, and it’s time by MS. But in fact everyone for us to do something about it. I impacted by this disease can be an recently traveled to Washington inspiration, too. Legislators need to DC for the 2014 National Public hear your story and nobody knows Policy Conference. I met with your story better than you do. Sign legislators and staffers who up to be an MS Activist. Connect have the ability to create change with your members of Congress throughout the country. They just just by telling your story. The same Louisiana GRC member Erin Hulin, need our stories to help them really way you would tell a friend. Just addresses the conference attendees to the see what change is possible. relax, be genuine, and inspire them. about her first-time activist experience. I am 24 years old now, facing I would not be as healthy 41 years ahead of me before I as I am today if it were not for am expected to retire. I graduated with a Bachelor of the research that happened before I was diagnosed. Science from LSU in 2010, and I achieved a Master I am so grateful for the people who came before me of Science in Health Care Management from the and who thought it was important to figure out new University of New Orleans this past May. I have a lot treatment options for those living with MS. I intend of potential to accomplish many great things in the to have a long, productive life based on the research next 41 years before I retire; but unfortunately, my MS of tomorrow. In 15 years, I want to be looking at limits me. someone who is 24 years old and be able to say she Although it may look as though I do not have a was diagnosed with MS, but because of what we are disability, I am challenged by my MS every single day. advocating for today, she is healthy. She was cured. Knowing that I might have a lifetime of living with MS ahead of me is sometimes worrisome. MS is an To learn more about Erin’s story, visit her blog at unpredictable disease, which is scary. I don’t know ErinHulin.com. Join Erin as an MS Activist by what could happen to me in the next 5 years or 10 signing up at nationalMSsociety.org/msactivist. MOVING TOWARD A WORLD FREE OF MS
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Ever wonder what happens at the National Public Policy Conference? Here are a few photos of your South Central crew in in Washington D.C.
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).
South Central Region MS Activists and Society staff congratulate Arkansas GRC Chair and Volunteer Hall of Fame advocacy inductee Julie Cawthron.
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MSConnection • SUMMER 2014
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.
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. Erin Hulin and her mom, Roi Lynne Hulin, head to meetings on Capitol Hill.
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.
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PROGRAMS
PlanningWise Helps People Navigate the Future by Lori A. Boyd
T
here 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
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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.
Andrea Hanson
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
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
Mel Meyer
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 longterm 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.
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National Multiple Sclerosis Society South Central Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054