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A Milestone Report on Progress in Fiscal Year 2009 by the National Multiple Sclerosis Society: Lone Star

movingothers

toward a world free of MS

About Multiple Sclerosis Multiple sclerosis is a chronic, unpredictable and often disabling disease of the central nervous system; it interrupts the flow of information within the brain, as well as between the brain and body. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory, concentration issues, paralysis, blindness and more. These problems may be permanent or may come and go. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances are being made in research and treatment. Most people are diagnosed between the ages of 20 and 50, although MS can appear in children and teens, as well as in much older adults. At least two to three times more women than men are diagnosed with the disease. MS affects more than 400,000 people in the United States and 2.1 million worldwide.

In Fiscal Year 2009, the National MS Society: Lone Star raised $24.2 million. Eighty-three cents of every dollar went to support research, services, education and national activities. How the Money is Raised Bike MS - 88% Walk MS - 5% Strategic Philanthropy - 4% Leadership Events - 1% Third Party Events - 1% Gifts Received from National - 1%

Where the Money Goes MS Research - 31% National Activities - 17% Direct Services for Persons Living with MS - 16% Lone Star Fundraising - 11% Community Programs - 10% Public Education - 7% Administration - 6% Professional Education & Training - 2%

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About the National MS Society: Lone Star and Louisiana Founded in 1955, the National Multiple Sclerosis Society: Lone Star is committed to providing quality programs and services to everyone impacted by the daily challenges of MS. Through events such as our annual Bike MS rides, Walk MS, Women on the Move Luncheons and more, we also raise awareness and money to fund research into the cause of and cure for multiple sclerosis. In October 2009, a new chapter in the MS movement began: the Lone Star and Louisiana Chapters united to better serve more than 24,000 men, women and children living with multiple sclerosis in 174 Texas counties and 64 Louisiana parishes. It was the first step in our regional collaboration that will also unite New Mexico, West Texas, Arkansas and Oklahoma in 2010 and 2011. 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. The National MS Society’s medical advisors recommend that people with MS talk with their health care professionals about using these medications and about effective strategies and treatments to manage symptoms. If you or someone you know has MS, contact the Society at nationalMSsociety.org or call 1-800-344-4867. 4

Moving Others Toward a World Free of MS

Never Stop Moving Others MS stops people from moving. We exist to make sure it doesn’t. That’s more than a slogan for us at the National MS Society. It’s our mission and describes what drives us. As you’ll read in our 2009 Milestone Report, we continue to lead the way in providing outstanding services, programs, research funding and events for everyone impacted by MS, including those living with this unpredictable disease, their friends, their families and all those who – like everyone at the Society – want to do something about multiple sclerosis now. We recognize our achievements in 2009, while also recognizing there is still much to do, in 2010 and beyond. Movement is at the core of who we are and what we do. We cannot and will not stop moving; our mission is too critical and our momentum is too great. Keep moving others. Together, we will all move toward a world free of MS.

Mark Neagli Regional Executive Vice President National MS Society

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Activist Shares Personal Story with Lawmakers Teresa Wynne of Mansfield, Texas is one of many dedicated and passionate MS activists who is making her voice heard. Following is Teresa’s personal story she shared with state lawmakers in 2009:

Since my diagnosis, I choose to emphasize those things I can still do and not focus on my limitations.

I was diagnosed with multiple sclerosis in 2003. I have been married for 20 years, and have two grown sons and three granddaughters. Currently, I work from my home office performing software training over the Internet. Since my diagnosis, I choose to emphasize those things I can still do and not focus on my limitations. I am actively involved in the National MS Society as a Self-Help Group Leader, a Walk MS team leader and an MS advocate. As an advocate, the Texas Health Insurance Risk Pool is especially important to me, as it represents one of the only insurance options available for self-employed people who live with a chronic health condition. Even so, the monthly costs of the Texas Risk Pool are almost 1/3 of my gross income. The deductible is so high that we are depleting our savings to pay for our many doctor visits and annual preventative tests. Sometimes we must opt to avoid treatment or tests because the high cost is prohibitive. Therefore, I urge you to reduce the costs and improve the coverage of the Texas Health Insurance Risk Pool. Help every Texan have an affordable insurance option. Thank you for your support!

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Moving Others Toward a World Free of MS

2009Milestones

Moving Others Through Advocacy • A record 120 MS activists from across Texas attended the 2009 MS Texas Public Policy Conference in Austin • 100% success was achieved on Lone Star’s top three priority legislation issues: - Health Insurance Risk Pool Premium Discount - Family Caregiver Support - Family Caregiver Outreach • 27 calls to action were sent to the Action Alert advocacy e-mail network • Membership in the Action Alert e-mail network increased by 40% • 4,325 e-mails were sent to Texas legislators from MS activists • 130 in-person visits were made to Texas legislators by MS activists • Five MS activists gave testimony in legislative hearings

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Moving Others Toward a World Free of MS

2009Milestones

Moving Others Through Programs & Services • 4,074 individuals were served through MS Navigator, a service provided by skilled professionals to respond to the needs of persons with MS and their families • Lone Star financial assistance requests rose 125% from 2008 to 2009 • To meet the needs of individuals with MS seeking financial help, the Lone Star financial assistance budget increased by 258%

• 46 individuals have been served since the inception of the Planning Wise program, which offers one-to-one consultations on career coaching, financial planning, insurance benefit counseling and COBRA assistance • 254 children and adults affected by MS, along with their families, took part in Family Discovery Camp, Champ Camp, Camp Can Do and Journey Camp, annual getaways at accessible locations where everyone can enjoy all activities, regardless of abilities

• 520 requests for financial assistance were approved; of these, 113 (22%) leveraged additional community resources to fulfill requests

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Yoga Class Boosts Life with Instruction, Friendship and Support by LEONARD M. ROTH

I have been involved with the assisted yoga class for several years and it has been an answer to my prayers.

As a person living with multiple sclerosis for 30 years, I have a great desire to remain as active as possible. I have been blessed with a very mild case of MS that went into what was then called chronic progressive about 25 years ago; my disease has not advanced appreciably since that time, without any of the medications currently available. I fall from time to time and balance is my general disability area; stairs and uneven ground are my nemeses. Reducing stress is an ongoing goal. Enter yoga. I have been involved with the assisted yoga class for several years and it has been an answer to my prayers. The instructors are wonderful. They are ever-compassionate and supportive of our individual disabilities. The instructors make us feel good about ourselves and our efforts. Another real plus of the class is the stretching poses that make us more limber. I really enjoy that aspect of yoga. Last, but certainly not least, is the camaraderie of the class. We are brothers and sisters in the fight of our lives; we love each other and encourage each other (when we are not joking with each other). As one of us is faced with an exacerbation, we all are faced with the setback until we can all be back at yoga as good – or almost as good – as new. We have great fun and get a real workout in the process. It is the highpoint of the week.

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Moving Others Toward a World Free of MS

2009Milestones

Moving Others Through Wellness & Exercise • Lone Star Wellness and Exercise classes in 2009 included: - Adaptive Yoga - Aquatics - Art Therapy - Pilates - Tai Chi - Assisted Physical Training - Therapeutic Horseback Riding • There were 10,405 wellness interactions in 2009 • Nearly 40 Lone Star Self-Help Groups provided fellowship and support in 2009 A Milestone Report on Progress in Fiscal Year 2009

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2009Milestones

Moving Others Through Research & MS Clinics • The National MS Society: Lone Star funded more than $6.7 million for ongoing investigations and research at medical institutions such as The University of Texas Southwestern Medical Center at Dallas, The University of Texas Health Science Center, Texas A&M University Health Science Center, University of Houston and Baylor College of Medicine • Persons with MS in the National MS Society: Lone Star and Louisiana region are served by 12 MS Clinics, including: - Ben Taub MS Clinic - Louisiana State Health Science Center/Shreveport MS Center - Maxine Mesinger MS Clinic - MS Clinic of Central Texas - MS Clinic of New Orleans at LSU - Neurology Institute of San Antonio - Texas Children’s Hospital MS Clinic - Texas MS Center

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Moving Others Toward a World Free of MS

- Texoma Area MS Clinic - The University of Houston MS Eye Care Clinic - The University of Texas Health Science Center MS Clinic - The University of Texas Southwestern Comprehensive MS Center of Excellence

Eye Exam Leads to New Focus on Successful Drug Therapy by LESLIE MARTONE My story begins about five years ago when my visit to an eye doctor was more than what was expected. Through a series of referrals to specialists, I learned I had optic neuritis, commonly found in MS patients. Only months later, the diagnosis was confirmed by my neurologist.

I’m excited for what my future holds. I have many more active years ahead of me with my two boys and husband.

We hit the ground running. I began to learn about what drug therapies cost and the efforts that millions of people take to help raise money to fund research. Almost immediately, I was approached for a two-year study with one of the drug therapies. After the research study was finished, I remained on the medicine, but found it was not doing what I expected in stopping my disease progression. I had a number of flare-ups and began researching Tysabri. I have now been on Tysabri a little more than 18 months and am in full remission, as confirmed with the discovery of no new or active lesions by a neurologist. I know that, with drug therapy and support of my family and friends, I can beat MS. My friends and family have always supported me by raising funds and riding in the Bike MS events for the entirety of my illness. I’m excited for what my future holds. I have many more active years ahead of me with my two boys and husband. We will always support the fundraising and research for finding a cure for MS.

Leslie and her husband have raised more than $4,000 during the last two years to support more research to find a cure for multiple sclerosis. A Milestone Report on Progress in Fiscal Year 2009

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Scholarships Support College-Bound Students Affected by MS The Society established its scholarship program in 2003 and the program continues to grow in terms of support and scholarships awarded.

“I want to go to college, but I just don’t know if my mom can afford it,” wrote Marva Cash, a high school senior living with MS. “It is my goal to get a degree in physiology to help others. I have the drive and determination, and it is my dream to go to college.” As a recipient of a 2009 scholarship from the National MS Society: Lone Star, Marva and her fellow scholars affected by MS are moving forward in achieving their dreams. Multiple sclerosis shouldn’t stand in the way of an education. This is why the National MS Society’s scholarship program exists: to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The Society established its scholarship program in 2003 and the program continues to grow in terms of support and scholarships awarded. In its first year of operation, the program awarded 36 scholarships for a total of $68,000; in 2009, a total of $1.02 million was awarded to 510 scholars throughout the United States. The increased scholarship funding demonstrates our ongoing commitment to supporting students affected by MS throughout their academic careers. As 2009 scholarship recipient Sharon Finn wrote, “My dad’s disease has taught me that no matter who you are or what disabilities you have, you should use your talents and optimistic attitude to achieve your dreams.”

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Moving Others Toward a World Free of MS

Some of Lone Star’s 2009 scholarship recipients include: Sharon Beard Joseph Calhoun III Kyrie Cameron Heather Dykes Kristin Fields

Jared Greenfield Allison Hughes Naomi Lopez Machella Luna Matthew McVay

Ashley Mitchell Scott Salisbury II Alexandra Thomas Alexandria Vargas Mary Warren

Moving Others Through Scholarships • 14 new scholarships were awarded in 2009 • 15 scholarship renewals were made to previously-awarded students

• Scholarship amounts ranged from $1,000 to $3,000 per award • Total scholarships awarded in 2009: $77,317

2009Milestones • The 2009 scholarships total was nearly double the amount awarded in 2008

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Moving Others Toward a World Free of MS

When It Rains, Our Riders Shine Lone Star Weathers Historic Storms and Keeps On Rolling Texas weather – like MS – is unpredictable, and that was certainly the case with Lone Star’s three fundraising Bike MS rides in 2009. For the first time in its 25-year history, the first day of the Houston-to-Austin BP MS 150 was canceled after April storms dumped as much as 11 inches of rain in areas along the route. Lone Star personnel – working with police, support crews and community partners – were able to stage a one-day ride from the La Grange town square to Austin. More than 11,000 riders turned out for the abbreviated but sunny ride, joined by thousands of volunteers and supporters. In North Texas, seasonal storms forced the cancellation of the second leg of May’s Bike MS: Sam’s Club ride from Frisco to

Fort Worth. More than 3,100 registered participants signed up for the Metroplex-area ride. Later in 2009, South Texas riders hoping for a dry cycling spell were in for a soggy surprise. Day Two of the Bike MS: Valero ride from San Antonio to New Braunfels and back was canceled as October thunderstorms rumbled, rolled and poured through the state. The spirit and determination of riders, volunteers and supporters, however, could not be dampened. Large turnouts for all three events and subsequent fundraising records were reflections of participants’ intense drive to do whatever they can to help others affected by multiple sclerosis.

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Cyclist Gets Feisty to Propel MS Movement As Co-Team Captain of the Feisty Devils, a Dallas-based Bike MS team, Doug Levy is saddling up to move others and drive the mission forward.

Over the course of eight years, the Feisty Devils evolved into a large force to be reckoned with as they burned up the road with 230 hard-pedaling cyclists who raised $281,004 in 2009.

The Feisty Devils began as a small but determined group of 12 cyclists who raised $9,984 in 2001. Over the course of eight years, the Feisty Devils evolved into a large force to be reckoned with as they burned up the road with 230 hard-pedaling cyclists who raised $281,004 in 2009. In that time, Doug – along with Co-Captains Alyce Levy, his wife and team founder, and Steve Levy, his father – has led his bold bicycling band to become the top fundraising team of the Bike MS: Sam’s Club ride. Cumulative fundraising for the Feisty Devils passed the $1 million mark in 2008, a crucial and empowering team milestone. Doug has also become a trusted Lone Star advisor. Volunteering his time and talents to the 2009 Bike MS Task Force, as well as providing PR and media counseling, Doug has leveraged his professional expertise to further the Society’s mission. Doug’s passion for a world free of MS springs from his wife, Alyce; she rides beside him to motivate the Feisty Devils to do all they can to fund research and, ultimately, the cure for multiple sclerosis. “I definitely draw my inspiration from Alyce,” said Doug. “I’m so impressed with her and how she helps people realize they can rise above whatever gets in their way. She really is the heart of the team.”

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Moving Others Toward a World Free of MS

2009Milestones

Moving Others Through Fundraising • 18,686 cyclists – led by nearly 700 bike teams – participated in Lone Star’s three fundraising bike rides: the Houston-to-Austin BP MS 150 in April, the Frisco-to-Fort Worth Bike MS: Sam’s Club in May and the San Antonio-based Bike MS: Valero 2009 Alamo Ride to the River in October • 9,957 people stepped out at 13 Walk MS events in Austin, Corpus Christi, Dallas, Fort Worth, Harker Heights, Houston, Katy, Kemah, San Antonio, Sugar Land, The Woodlands, Tyler and Waco • 420 individuals attended Women On the Move Luncheons in Dallas and Houston • $21.4 million was raised through Lone Star events in 2009 • 191,505 individual donations were made through events • Events were supported by more than 240 sponsors • $1.8 million was raised through cash and in-kind sponsorships A Milestone Report on Progress in Fiscal Year 2009

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Moving Others Toward a World Free of MS

Mother-Daughter Team Takes Steps for a Cure by SHERRI KARLEY “Mom, Dad, I feel like my feet and hands and my abdomen are numb and tingly. What do you think is wrong with me?” That is what my husband and I heard from our then 18-year-old daughter early one morning in March 2007 when she was a high school senior. We had no idea what could be wrong, but took her to her doctor and, within a month, had a diagnosis: multiple sclerosis. We were shocked and scared, but, with the help of doctors, friends and family, we learned that MS is not as shocking or scary as we first thought; we had their support to deal with this disease and all that goes with it. Amber has an amazing attitude, has adapted well to her shots three times a week and is an active college student with the goal of being either an occupational therapist or physical therapist in the near future. We participate in the Walk MS: Austin because of Amber and now because of me: I have recently been diagnosed with MS after experiencing numbness and tingling in my fingers, starting in May 2008. Amber has been such a support to me. I truly appreciate now what she has been through the last couple of years. We are in this together, along with our family and friends; we have been so encouraged by their support and love. I am serving as a Task Force Member for the Walk MS so I can make a difference and help raise as much money as I can. Almost everyone I meet seems to know someone affected by MS and they want to help; we just have to ask.

“Mom, Dad, I feel like my feet and hands and my abdomen are numb and tingly. What do you think is wrong with me?”

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Lone Star Entrepreneur Is on Classified Mission by PAULA JOINER

My dream was to create a Web site to exchange goods, services and information in the MS community.

When I was first diagnosed with multiple sclerosis, I was devastated. The loss of independence had tremendous effects on my emotional well-being, but I decided to take control of my loss. I started by sharing my life as a Self-Help Leader and an MS Advocacy Representative. The people I met with MS were an inspiration. The accomplishments they achieved despite being diagnosed with MS motivated me to live my life to the fullest and give back. My dream was to create a Web site to exchange goods, services and information in the MS community. This dream became a reality when I received a grant from the National MS Society: Lone Star’s MS Entrepreneur grant program to fund my site. This new Web site – www.MSLSC.net – is a place to network in commerce and share information via our forum section. MS Classifieds provides a place for the MS community to post items for sale, trade or barter. Donated items can also be found on our Web site. Person-to-person posts are free. All posts and advertisements are answered by e-mail on a secure network. Area Self-Help Groups are also welcome to post notices about their meetings and upcoming events.

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Moving Others Toward a World Free of MS

A Blooming Good Idea Takes Root by JENNIFER L. NORTHROP, M.D., PH.D.

An enabling garden is constructed with the principle that anyone who wants to garden should be able to do so regardless of ability or disability.

The Enabling Garden Project was created in 2009 through the National MS Society: Lone Star MS Entrepreneur Program, which is provided through the generous support of Kanaly Trust. The Enabling Garden Project started when I became tired of losing things important to me to MS. I had loved to garden when I lived in Seattle; however, between MS and the Texas gumbo soil, heat and fire ants, I quickly realized that gardening by traditional methods was too strenuous for me. An enabling garden is constructed with the principle that anyone who wants to garden should be able to do so regardless of ability or disability. It integrates different bed designs with modified tools and other features that enable any person to be able to garden. This Enabling Garden Project also benefits others beyond the MS audience. Research in the aging and pediatric populations has shown that horticulture therapy mediates emotional, cognitive and sensory motor functional improvement, increased social participation, health, well-being, and life satisfaction. There is often great loss associated with the diagnosis of multiple sclerosis, but the Lone Star MS Entrepreneurs Program provides individuals living with MS with the ability to continue to be active in their own gardens and their communities. A Milestone Report on Progress in Fiscal Year 2009

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Moving Others Through Volunteering

2009Milestones

• 9,000 volunteers kept participants moving in three Bike • 123 skill-based volunteers shared their talents and MS and 13 Walk MS fundraising events professional expertise in needed areas, including financial, legal, life-planning, marketing, professional • 461 volunteers served in leadership capacities, such as coaching and public relations the Board of Trustees and committees for government relations, clinical advisory, finance, long-term care, • 762 volunteers pitched in to assist Programs and scholarships, Walk MS, Bike MS, Women On the Move, Services, including MS Ambassadors, Self-Help Group major gifts and more Leaders, advocates and more 24

Moving Others Toward a World Free of MS

Volunteering is a Lifelong Passion by COLTON BRUGGER I have been a volunteer for the National MS Society: Lone Star since the day I was born.

There is nothing more rewarding than helping an organization with the compassion and dedication to helping others that the National MS Society displays every day.

My great aunt, Debbie Brugger, was diagnosed with MS a year before I was born. Shortly after her diagnosis, Aunt Debbie spoke at the Overnight of the first Houston-to-Austin MS 150. Ever since, my family has been involved; as I grew older, I have been able to volunteer more of my time. In high school, I helped recruit and coordinate volunteers from several school organizations. I quickly became known as the “luggage man� for my work with high school organizations that oversaw the luggage area in La Grange. Immediately after moving to Austin to attend the University of Texas, I was invited to join the Austin Steering Committee, where I served in several capacities before becoming Chairman in 2008. My involvement with the National MS Society: Lone Star continues to prove itself a very special opportunity. I have been able to develop lasting relationships and grow as an individual during my time with the organization. I have also become part of the single largest event with the purpose of helping folks like my Aunt Debbie. There is nothing more rewarding than helping an organization with the compassion and dedication to helping others that the National MS Society displays every day. I look forward to continuing my service until we have eliminated MS.

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Reserves Move Research Forward After extensive research and discussion, the Special Committee regarding Reserve Allocation Process (SCRAP) made its recommendations to the Board of Trustees on how to best allocate $2.54 million in reserve funding to drive MS research. This funding was made possible through a successful 2009 event season. Thanks to the support of our donors, the National MS Society: Lone Star was able to expand several research and program initiatives, some of which include:

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$580,285

To support research into progenitor cell-based myelination of the dysmyelinated central nervous system; this research is being conducted by Steven A. Goldman, M.D., Ph.D., with the University of Rochester Medical Center

$225,987

To fund a validation study of diffusion tensor imaging as a physiologically relevant biomarker of brain tissue integrity, conducted by Robert J. Fox, M.D., with the Cleveland Clinic Foundation in Cleveland, Ohio

$225,987

To support a study into MMPs, IgCAMs and synaptic injury in MS, led by Katherine Conant, M.D., with the Department of Neurosciences at Georgetown University Medical Center in Washington, D.C.

$185,000

To fund research on modeling the pathophysiology of Uhthoff’s phenomenon in multiple sclerosis, a study being led by Elliot Frohman, M.D., Ph.D., at The University of Texas Southwestern Medical Center at Dallas

$172,741

To support an investigation of antigen targeting and tolerance in murine EAE, conducted by Sally Ward, Ph.D., at The University of Texas Southwestern Medical Center at Dallas

$150,000

To fund two clinical or research fellowships

Moving Others Toward a World Free of MS

2009 National MS Society: Lone Star

Board of Trustees Jim Tidwell, Chairman Henry Noey, Chairman Emeritus Brad Robbins, Vice-Chairman Ernest Johnson, Secretary Lari Ainsworth Davis Baldwin Russ Bookbinder William Bradley, M.D. William Byerley Marshall Cohen Sam Crocker Becky Cunningham Laura DiStefano Lisa Dollinger Michael S. Fagan I.D. Freed, R.Ph. Elliot Frohman, M.D., Ph.D. Randy Golden

Trevor Hale, Ph.D. Jim Harvey George Hutton, M.D. Janean Jenkins, MSN, RN, CNRN Kep Kepner Melanie Lawson J.D. MacArthur Raymond A. Martin, M.D. Mark McLeland Gerald Merfish Brook Minx Mike Murphy Sean Murphy John Norden

Mimi Parsons John Pearson Francisco Perez, Ph.D. Sue Porretto Dwight Riskey Carla Rosenberg Rana Russell, MSN, RN, FNP Jodi Lee Ryan Doug Sanders Stephen Speier Jill Wasserstrom Wayne Ziegler

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MS STOPS PEOPLE FROM MOVING.

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

Regional Headquarters:

National Multiple Sclerosis Society: Lone Star 8111 N. Stadium Drive, Ste. 100 • Houston, TX 77054 tel +713-394-2900 • fax +713-394-7422


National MS Society: Lone Star FY09 Milestone Report