Summer 2015 MS Connection - South Central Region by National MS Society: South Central

MOVING TOWARD A WORLD FREE OF MS SUMMER 2015

CONNECTION The Official Magazine of the National MS Society South Central Region

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Tami Ryan, diagnosed 2005 FEatUREd aRtiClES

8 • Helping ScHolarS acHieve THeir DreamS 10 • reSearcH UpDaTe 18 • FUeling progreSS: volUnTeer proFileS

WELCOME

If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDAapproved 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 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure.

bRIAN hAND CYCLIST Diagnosed

in 2012

Joe ACTOR Diagnose

d in 2010

“People affected by MS can live their best lives as we Stop MS in its tracks, reStore what has been lost and end MS forever.”

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The National MS Society is proud to be a source of information about MS. The content is based on professional advice, review of independent research, published experience and expert opinion. The National MS Society makes no warranties regarding the information provided and the information is provided for your educational purposes only. Any provided medical information is of a general nature and should not be substituted for the individual therapeutic recommendation or prescription by a medical professional. For specific information and advice relating to your personal medical condition, always consult your personal physician.

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MS CONNECTION • SUMMER 2015

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REGIONAL UPDATE

You Make A difference EVERY CONNECTION COUNTS

pring is behind us and I hope each of you is taking time to reflect on our valuable accomplishments and successes as together we create a world free of MS. Each of you has a connection whether it is living with MS, sponsoring an event participant, fundraising for the much needed funds for research or volunteering your time in the office, at an event or on a Leadership Council or Board of Trustees. Every connection counts to create a better world for individuals living with and changing lives of those affected by multiple sclerosis. Each of you serve in your own capacity, reflecting what you truly value to meet the end goal of a world without MS. Leadership is about action and service, not position and power. We know there are many organizations and causes worthy of your service and therefore we never take your time or voice for granted. We truly value each action and connection you make for the Society and those we serve. You are the passionate individuals who want to do something about MS NOW. I ask that each of you please take time and reflect on all we have accomplished together and where we are going in the years to come. Thank You,

Mark Neagli

Regional Executive Vice President

MARK NEAGLI Board of Trustees Chairman

WILLIAM BYERLEY Houston, TX Treasurer

DON McCORMACK Houston, TX Secretary

DAVID CARDER Tulsa, OK

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SOUTH CENTRAL REGION

ARKANSAS https://MSarkansas.org

Anthony COMEDIAN

@NMSSarkansas

Little Rock 10825 Financial Centre Parkway, Ste. 330 Little Rock, AR | 72211 | 501.663.8104

LOUISIANA

https://MStexas.org /NMSStexas

https://MSlouisiana.org /MSlouisiana |

994 Diagnosed in 1

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@NMSSLouisiana

Metairie/New Orleans

4613 Fairfield St. Metairie, LA | 70006 | 504.322.3790

NEW MEXICO https://MSnewmexico.org /MSnewmexico | @MSsocietyNM Albuquerque

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Amarillo 3350 Olsen Blvd., Ste. 1700 Amarillo, TX | 79109 | 806.468.8005 Austin 9600 N. Mopac, Ste. 150 Austin, TX | 78759 | 512.340.2700 Houston 8111 N. Stadium Drive, Ste. 100 Houston, TX | 77054 | 713.394.2900

3540 Pan American Fwy NE, Ste. F Albuquerque, NM 87107 | 505.243.2792

Lubbock 3610 22nd St., Ste. 301 Lubbock, TX | 79410 | 888.999.7992

OKLAHOMA https://MSoklahoma.org /MSoklahoma | @Oklahoma_NMSS

Midland 1031 Andrews Highway, Ste. 304c Midland, TX | 79701 | 432.522.2143

Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK | 73116 | 405.488.1300

North Texas 2105 Luna Road, Ste. 390 Carrollton, TX | 75006 | 469.619.4700

Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK | 74136 | 918.488.0882

San Antonio 9380 Colonnade Blvd. Ste. 130 San Antonio, TX | 78230 | 210.694.3200

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CONTENTS

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COVER COVER STORY STORY

WORkpLACE GIvING: Individual Gift, Collective Impact

GIVING

SChOlArShIpS

SCHOLARSHIp COMMITTEE: Helping Scholars Achieve Their Dreams rESEArCh

RESEARCH UpdATE: Annual AAN Meeting Brings Promising Research

Enjoying the Ride: My Volunteer journey

From the beginning, I made it a point to look at my having MS in a positive way. If you think of the millions of people on this earth, only a few are strong enough to fight MS. So I chose to fight. My motto was “Enjoy the Ride.”

SpECIAl

vOLUNTEER pROFILES: Everyone who wants to do something about MS can fuel progress QUARTERLY pHOTOS, 2015

30 DIy

31 CAlenDAr

bE SEEN

GEt CONNECtED

GIVING

Workplace Giving INDIVIDUAL GIFT, COLLECTIVE IMPACT Workplace giving is a great way for both employees and employers to support charities they feel passionate about through a simple and convenient approach to charitable giving. When companies and organizations participate, employees have the opportunity to donate a portion of each paycheck to the charity of their choice. Employers are seen as a community partner helping to fund important causes, and they are able to do so at little or no cost. Additionally, employees feel good when they can support organizations that are important to them. HOW WORKPLACE GIVING BENEFITS MS This year alone, the National MS Society anticipates receiving more than $150,000 from employees and employers who have selected the Society as their charity of choice. Workplace giving is a cost-efﬁcient way to raise funds that are crucial in supporting the overall mission as we seek to stop disease progression, restore what’s been lost, and end MS forever. Donations are unrestricted, thus allowing us to sustain programs, services and day-to-day operations throughout the year. WHY GIVE THROUGH WORKPLACE GIVING While all donation opportunities further our mission, there are many beneﬁts in workplace giving. By deducting a small amount of money from each paycheck, you can make a larger contribution but pay for it in small, more feasible installments. Donations are tax-deductible, automatic and convenient. Additionally, many companies participating in workplace giving offer matching gifts allowing you to double your impact. HOW CAN YOU GET INVOLVED? If you aren’t sure if your employer participates in workplace giving, please reach out to your company’s human resources department and inquire. If they do not currently have a workplace giving program, you can provide them with more information, including the popular thirdparty agencies who often manage a company’s campaign—Community Health Charities or the United Way.

For more information please visit: nationalmssociety. org/Donate/Workplace-Giving or contact Tina Ward at tina.ward@nmss.org or 501-663-6767 x35307.

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

- THANK YOU! -

Volunteers From your friends at

Bike for MS in 2015-201

Everyone who wants to do something about MS can fuel progress. Register, Donate and Volunteer at bikeMS.org today!

SCHOLARSHIPS

Helping Scho ACHIEVE TH

he National MS Society’s scholarship program exists because MS shouldn’t stand in the way of an education. This program not only connects students to our mission, but also impacts volunteers. In 2015, 52 volunteers gave their time to help review more than 200 college scholarship applications submitted by new and returning students from the South Central region. Scholarship Review Panel members represent various professions, backgrounds and connections to MS. The work of these volunteers is vital to the scholarship program’s goal to have a positive impact on future generations and our leaders of tomorrow.

As a past scholarship recipient, Northwest Arkansas’ Fox Morning Edge Anchor Channing Barker serves on the panel to give back and show her appreciation. Having experienced ﬁrst-hand the difﬁculties of living with MS as a student, she can sympathize with many of the applicants. Channing’s commitment goes beyond the panel; she is an MS Activist, Government Relations Committee Co-Chair, and is an active fundraiser. “I learned how blessed I am,” Channing noted. “I was given the opportunity to go to college with the help of many scholarships and now am able to help select those who will be on the receiving

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

end of it. As a past recipient, it’s important to me to help the Society as much as possible!”

Similar to Channing, Billy King has witnessed the power of connecting people affected by MS to the resources they need to live their best life. Billy, who is retired Air Force, has two brothers, several friends and coworkers living with MS, and his late grandmother had MS. Watching MS affect so many of his loved ones prompted him to volunteer for the Society on the panel as well as at Walk MS and Bike MS events. He applauds the scholarship program and the use of Society funds to assist students affected by MS move their lives forward. “Lots of folks just need that one break to make it,” Billy says.

“Lots of folks just need that one break to make it,”Billy says. This extra lift can mean the difference between whether or not a student attends college. Jody Roberts volunteers with the panel to further these students’ aspirations and goals. When she was 21 years old, Jody’s father, who was diagnosed with MS, passed away. Since MS had such a huge impact on her life, she became an active volunteer with the Society and chose a career in neuroscience to honor her father. Jody is the Chief Operating Ofﬁcer and Director of

thankyou A HUGE

olars HEIR DREAMS

TO OUR VOLUNTEERS

By Tina Dam

Research at the Mind Research Network and serves on the Society’s Leadership Council in New Mexico, as an MS Ambassador and as an event fundraiser and volunteer, in addition to serving on the Scholarship Review Panel. Jody understands the emotional and ﬁnancial challenges of MS; during her high school years, her father was very ill and needed to be in a care facility. Her experience growing up motivates her to make a positive impact on students going through similar situations. Every January, volunteers of the Scholarship Review Panel eagerly await the students’ applications and look forward to learning about each of them and their goals. These volunteers, with their own personal experiences, have the same goals in common: to provide these students with support and help them achieve their dreams. 2015 Scholars will be announced in the Fall MSConnection. To learn more about the scholarship program, including resources available for students, visit nationalMSsociety.org/scholarship. The Scholarship Review Panel is a great opportunity for those looking for virtual ways to make an impact. Visit volunteerMS.org to learn more.

From your friend s at

REGISTER NOW Walk MS: Killeen Area September 19, 2015 Walk MS: Waco October 03, 2015 Walk MS: Austin October 24, 2015 Walk MS: Sugar Land October 24, 2015 Walk MS: The Woodlands October 24, 2015 Walk MS: Houston November 08, 2015 Walk MS: Kemah November 21, 2015 Walk MS: Oklahoma Fall 2015 Learn more at 1.855.372.1331 | walkMS.org

RESEARCH UPDATES

AnnUAl AAn MEEting BRingS Promising RESEARch in PRogRESSivE MS, DiEt AnD lifEStylE AnD MyElin REPAiR Results from trials in progressive MS, diet and lifestyle research and myelin repair strategies took center stage during the American Academy of Neurology’s (AAN) annual meeting held in Washington, D.C. this past spring. Nearly 13,000 neurologists and other researchers convened to share progress in understanding and treating neurological diseases like MS. National MS Society Research staff blogged about the most exciting of the findings on MSConnection.org.

MS REPAiR: RAPiDly Moving oUt of thE lAB AnD into PEoPlE By Dr. Bruce BeBo executive vice PresiDent, research at the national Ms society

hen i was in the lab, my research focused largely on using mouse models of Ms to test concepts that couldn’t be explored in people yet. studies presented at this year’s aan meeting are making it clear how far research has advanced since that time. case in point: i never would have thought just a few years ago that i would be writing about myelin repair in people, not mice. so it was pretty exciting to see a presentation showing the first results of a clinical trial of the myelin repair

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

strategy called anti-linGo, which is being developed by Biogen. this study involved giving this iv infusion or a placebo every 4 weeks for 20 weeks to 82 people who had experienced their first episode of optic neuritis. Optic neuritis involves inflammation of the nerve that connects to the eye, and it’s often one of the first signs of Ms. the study measured the speed at which electrical signals traveled along the optic nerve before and after 24 weeks of treatment. the investigators found that those who had been given anti-linGo therapy had faster nerve signals after treatment, compared to those who were given the placebo. this speeding up of signals is thought to be a consequence of myelin repair. they didn’t find differences between the groups in terms of vision, and the therapy seemed to be well tolerated except for some infusion reactions.

This is exciting stuff! But it is still early. Benefits will need to be demonstrated in larger and longer clinical trials before the FDa will consider this treatment for approval. i’m now really looking forward to seeing the results from a parallel study of anti-linGo in people with relapsing Ms. this study will add important new information on the potential of anti-linGo for restoring myelin and function for people with Ms. We’ve talked before about the potential of various kinds of stem cells to stop disease activity and possibly repair myelin. there have been a few updates at aan about trials of adult mesenchymal stem cells, which are present in many tissues of the body. these trials isolate a person’s own mesenchymal cells from the bone marrow or blood stream, which are then multiplied in the lab, and then re-introduced in greater numbers into the body. Previously, a small phase i clinical trial at cleveland clinic tested the ability of mesenchymal stem cells to both inhibit immune mechanisms and to augment intrinsic tissue repair processes in people with relapsing forms of Ms. this study was led by Dr. Jeffrey a. cohen and supported by the congressionally Directed Medical research Programs. this trial was designed to evaluate safety and not designed to determine benefits, and preliminary results were presented last year suggesting that this approach was safe. the team has done some further probing to try to get at the question of whether these cells stimulated myelin repair and protected nerve fibers. We think degenerating nerve fibers are driving disability progression, so if this works, it could potentially slow down or stop progression. they looked at specific

brain lesions before and after the infusions of stem cells using advance imaging called Dti. they reported that compared to before treatment, measures of axon loss stabilized, hinting that the cells may have stimulated repair and/or protected nerve tissue. a follow up clinical trial, which is now in planning stages, should shed more light on potential benefits of this exciting approach. i’m proud that the national Ms society made strategic investments to encourage research in the area of nervous system repair and protection, and it’s really gratifying to see promising early results with potential implications for people with Ms. We’ll be keeping a close eye on these and other studies that are the translation of many long years of basic lab work.

thE Plot thickEnS on DiEt AnD MS By Dr. nicholas larocca vice PresiDent, healthcare Delivery anD Policy outreach, research ProGraMs at the national Ms society

o think that you might be able to change the course of disease, or at least relieve symptoms, by eating or not eating specific types of food is enticing. However, “the proof is in the pudding,” scientifically speaking, since studying diet is challenging. that’s why it’s been exciting to see how many researchers are trying to do just that. in a small study, Dr. rocco totaro and a team from the university of l’aquila in italy tested whether a six-week diet that was low in saturated animal fats, and high in antioxidants, would be associated with positive changes in body composition and fatigue in 17 people with relapsing-remitting Ms. in their study, the percentage of body fat decreased, and fatigue as measured by a clinical scale lessened significantly as well. We need more and larger studies like this, to show how diet may impact symptoms that affect the lives of people with Ms. What does it

RESEARCH UPDATES mean for you now? a healthy diet certainly can’t hurt, and it may even help both Ms and general health. Previous studies have suggested that caffeine may protect against alzheimer’s and Parkinson’s disease, but there haven’t been definitive studies in MS. I was intrigued by a study by an international team led by Johns hopkins university researcher Dr. ellen Mowry, looking at coffee consumption in two large data sets – in a group of 1,629 swedish people with Ms and 2,807 people without Ms, as well as a group of 584 people with Ms and 581 controls enrolled in the Kaiser Permanente health plan of northern california. in the swedish study, drinking 6 cups of coffee a day was associated with a reduced risk of developing Ms, and four cups a day did the same in the american study. Studies like this may help us figure out how to prevent Ms in the future. What this study doesn’t tell us is whether or how drinking coffee may impact Ms in people who already have the disease, so it’s probably not a good idea to increase coffee consumption until we know more. Gut bacteria is another area where research is increasing, and it presents the exciting possibility that probiotic strategies may ultimately be developed to treat Ms. i’m pleased that a small pilot grant from the national Ms society helped launch the Ms Microbiome consortium, a collaboration of researchers in california, colorado and new york. this week they presented some early findings from their analysis of blood and stool samples from people with Ms treated with glatiramer acetate, untreated individuals, and healthy controls. they found differences in gut bacteria between the treated and untreated individuals and also between those with Ms and healthy controls. the team recently won a collaborative Ms research center award from the society to pursue this promising research. i’m eager to see more from this group, and to see how their findings can be translated into a way of stopping immune attacks in Ms. not so long ago, searching the medical literature for “diet and Ms” yielded little. i’m thrilled to see that we are entering an era where diet and lifestyle are truly considered to be factors that can help lead to innovative treatments and ultimately free the world of Ms.

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

PRogRESSivE MS: looking foR AnSwERS now By Dr. DouGlas lanDsMan associate vice PresiDent, BioMeDical research at the national Ms society

eople who live with progressive Ms have many questions, but one i hear often is, “When will there be treatment options for me?” Based on what i saw and heard at aan, i’m pleased to report that researchers from around the world are making important progress toward treatments and therapies for people living with progressive Ms. several groups presented results or updates from large, ongoing studies involving people living with primaryprogressive Ms. no results are available yet, but some should be next year, and it’s encouraging to see that these trials are getting under way. I hope the findings provide us with new treatment approaches for people with progressive Ms. one aspect of research into treatments for progressive Ms may not seem very intuitive: sometimes scientists need to test treatments in people with very early signs of the disease, such as optic neuritis, much before progression is even evident. they do this because the nerve damage – and if successful, the repair or protection from damage – is more easily observed in this single location. that brings us to exciting results from a trial led by Dr. raju Kapoor (university college london), which recruited 86 people with optic neuritis. they were randomly assigned to receive either phenytoin – an FDa approved oral therapy used to treat epilepsy – or a placebo for 3 months to assess whether the phenytoin could help to protect the retinal nerve fiber layer at the back of the eye from damage. of those completing the study, on average people who received phenytoin had 30% less damage to the nerve fiber layer compared to those who received placebo. the results raise the possibility of “repurposing” a therapy already on the market with a long track record of use. We need to confirm these results in a larger study to really understand if phenytoin can truly protect the nervous system from damage that leads to Ms progression.

in another study, 154 people with primary- or secondary-progressive Ms were given experimental MD1003 (concentrated biotin, a B vitamin), or an inactive placebo, for 48 weeks. the results showed that 12.6% of those given MD1003 showed improvement in disability, using the eDss scale that measures disability progression or improvement in a timed walk, versus none of those on placebo, and there were no serious safety issues reported. More research is needed to figure out who might benefit from this approach and why only 12% responded. the manufacturer, MedDay Pharma, says that another trial is underway in people with Ms and results are expected later this year.

There must be a better way...

Finally, i was impressed with a study from Dr. Mika Komori and a team at the national institutes of health that looked â&#x20AC;&#x153;behind the scenesâ&#x20AC;? to try and better understand why immune-modulating treatments have not succeeded in progressive forms of Ms as they have in relapsing MS. The team examined spinal fluid samples from 386 people with all types of Ms as well as people without Ms, to determine the exact numbers and characteristics of various immune cells. What they observed is that attacking immune cells in people with progressive Ms were more likely to be holed up in the brain and spinal cord, whereas the cells in people with relapsing forms were mobile and circulating. What does this mean? it may be that, for treatments to succeed at modulating inflammation and/or nerve damage in progressive Ms, the therapies will have to be able to track the bad cells within the central nervous system. everyone with Ms lives with the uncertainty of whether it will progress and whether they will lose the ability to do the things that matter most to them. iâ&#x20AC;&#x2122;m encouraged by the research i saw last week and strongly believe this kind of research will drive us to find ways to stop progression and restore or repair lost function.

JOIN THE RANKS OF OTHER MS ENTREPRENEURS

re ideas changing the futu

Read more about AAN at MSConnection.org/blog. Stay up to date on research findings, learn how you can contribute, or find research studies near you by visiting nationalMSsociety.org/research

See an unmet need facing people living with MS and have an idea on how to bridge the gap? Apply for an MS Entrepreneurs grant to accelerate your innovative project into motion!

Visit MSEntrepreneurs.org to learn more and complete your application by October 15, 2015.

COVER STORY

ENjoying the ride MY VOLUNTEER JOURNEY By Tami Ryan

I have indeed “enjoyed the ride” as every position I take on has been valuable and rewarding.

On the Move Luncheon

bike MS Champion Top: Tami with Society staff after giving an inspiring speech at the 2014 Dallas On the Move Luncheon. Bottom: As a featured Bike MS Champion for the 2014 Bike MS: Sam’s Club Round-Up Ride, Tami proudly stands next to her story board.

Left: Tami and fellow MS Ambassadors spreading MS awareness in the North Texas community.

ms ambassadors October 25, 2005 - You have multiple sclerosis.

rom the beginning, I made it a point to look at my having MS in a positive way. If you think of the millions of people on this earth, only a few are strong enough to fight MS. So I chose to fight. My motto was “Enjoy the Ride.” See, life is a journey but you can’t enjoy it if you are too focused on what is ahead.

Fast forward to 2008 - I needed something to do. I wanted to be an active member of the MS community, so I contacted the local Society office and attended Volunteer Orientation. It just so happened plans were being made for Bike MS: Sam’s Club Round-Up Ride in May. I received a call from Lee Kilborn, Director of Community Development, asking if I was available to volunteer for an early morning shift, 5:00 a.m. to be exact. I could never have imagined the journey I was about to embark on. I am an early riser so I arrived a little early only to find that I was the first volunteer to arrive. I helped serve breakfast and then moved on to the bike compound to check out bikes. I quickly earned the name “Chipper Greeter.” Let’s just say I was little too chipper for most at 5:30 in the morning. I had never volunteered for anything that centered around my own life. I’ve supported many causes with time or money, but this – this is personal. It was such a wonderful experience. I met so many great people willing to volunteer and fundraise, all trying to help the National MS Society end MS forever.

Dorothy’s dash

Right: Tami and her husband, Alax, volunteering at Dorothy’s Dash, a 5K and fun run put on by her home town of Flower Mound benefiting the MS Society.

The week following the ride, a cyclist called the Society asking about the super happy volunteer he’d met that morning. He explained he had ridden for several years on a corporate team, simply for the ride experience. But now he had a connection; he wanted to ride for the volunteer he met that morning. It was not difficult for the staff to figure out who he was talking about so next thing I knew, I was playing the role of Bike MS Champion! Still, I needed to do more so I continued to work with Lee to identify more volunteer opportunities. I became an MS Ambassador, which gave me the opening to speak to so many people about our organization and help them find ways to learn more about MS. Later I was asked to serve on a Diversity and Inclusion panel at the Society Leadership Conference, which led to a volunteer position on the national diversity work group. We wanted to make sure that everyone with MS could see themselves in our organization. We wanted to get our services and programs out to diverse groups that may not be aware we exist to serve them. From that experience, I was next asked to serve on an advisory committee to the CEO to work on the Society’s 2016-2018 strategic plan. Not only did we need to develop a mission statement, we needed to develop a statement that captures the MS movement. I was so proud to be a part of that work as it was fulfilling and engaging. At the most recent Society Leadership Conference in November 2014, I was asked to present the mission statement and our goals for 2016-2018 as part of MOVING TOWARD A WORLD FREE OF MS

the closing ceremonies. Even though I was terribly nervous, I was so honored that I found the courage to address such a large group of staff and volunteers.

Below: Longtime speaker and volunteer at Dorothy’s Dash in Flower Mound, Tami helps present the final check to the National MS Society.

Now I am able to use all the skills I have gained over the years in a new position; I was recently voted onto the South Central Board of Trustees. I still volunteer at 5:00 a.m. every single year to serve breakfast to those cyclists and often transfer over to the bike compound where it all really began. And I still serve as an MS Ambassador to help spread our mission and educate new audiences. I recently served as the mission speaker for the Dallas On The Move Luncheon and spoke at a Golden Circle event in Arkansas.

ITER

G WR N I T U B I R T N cO

“When Tami attended that first volunteer orientation, I knew there was something special in her. She was full of hope and happiness and I immediately sensed the determination and grit behind it. Each time we present Tami with a new opportunity, a bigger challenge, a more visible role, she not only accepts it, she attacks it. Courage is being afraid and doing it anyway. That’s Tami…to a T.” –Lee Kilborn, Director of Community Development for the National MS Society, South Central

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

I have indeed “enjoyed the ride” as every position I take on has been valuable and rewarding. Whether you are able to give a few hours early in the morning at a bike ride, or you have professional skills and experience to apply to a work team or leadership position, everyone who wants to do something about multiple sclerosis can fuel progress. Together, we act with urgency to find solutions and change the world for people with MS. I could never have imagined where the journey would take me, but I’m glad I made the first step to get involved.

To begin your volunteer journey, go to volunteerMS.org and follow three easy steps to get connected to our volunteer engagement team: 1) watch the orientation video, 2) check out volunteer opportunities in your area, and 3) complete the online interest form.

#StrongerthanMS

Lisa Smith MS Activist and State Action Day participant

Q: What is your connection to MS? A: I was diagnosed with MS on Feb. 19, 2013.

Barbara Bensonhaver MS Activist and member of the Government Relations Committee (GRC)

Q: What is your connection to MS? A: MS Activist and member of the Government Relations Committee (GRC) Q: What impact are you making? A: I think I make an impact by informing our legislators about issues that affect people living with MS. Many times they arenâ&#x20AC;&#x2122;t aware of the importance of the bills we present to them. I can help make it personal, like I did when I testified before committee. When a bill passes and gets signed into law, it is very exciting. Q: Why should others volunteer? A: The more people get involved, either in person, in writing or by phone, the bigger the impact.

Q: What impact are you making? A: I know that the Society does a lot to help individuals living with MS and their loved ones, so if I have contributed to those efforts in any way by volunteering, I am completely thrilled. I cherish the connections I have made with other activists. Iâ&#x20AC;&#x2122;ve met so many wonderful, loving and giving people who truly make a difference in the lives of those they are helping. Our work this year at the State Capitol led to two new laws being passed that protect families living with MS. It was an honor to be part of that work. Q: Why should others volunteer? A: Volunteering is a wonderful way to make a positive difference in this world. I love that my attention is focused on the needs of others and away from myself, which brings immeasurable physical and mental health benefits and unexpected blessings to my life. LEARN MORE: volunteerMS.org LEARN ABOUT: Sign up for the Action Network: nationalMSsociety.org/msactivist Follow MS Advocacy on twitter: #MSActivist MOVING TOWARD A WORLD FREE OF MS

VOLUNTEER PROFILES Q: What impact are you making? A: Being kind is cool. So is smiling, and wearing crazy amounts of orange. While volunteering, if I can make someone’s day doing those thing then that is the great impact I could hope to make. The thing I enjoy most about volunteering is all the wonderful people I’ve met over the years who have truly impacted my life in ways I never thought possible. Life is short. Everyone has a story, and every connection counts. Q: Why should others volunteer? A: Others should volunteer because something truly magical happens when people come together all in one place all advocating for the same purpose. Big or small, we all make a difference. I can’t wait for the day when we can all say, “Together, we found a CURE for MS.”

Donna and Tom Hildebrandt

stop people from leading a full, productive and rewarding life. We try to encourage caregivers that things can still be great with some adaptation, but also that sometimes it’s okay to get frustrated. Q: Why should others volunteer? A: Others should volunteer because there is a need to help the growing number of people living with MS as well as participating in fundraising activities to support the programs, services and research activities of the Society. LEARN MORE: volunteerMS.org LEARN ABOUT: programs and services available to help individuals and families impacted by MS by contacting an MS Navigator: 800-344-4867, option 1, or visiting nationalMSsociety.org. Wellne ss Co ach

Self-Help Group Leaders

Q: What is your connection to MS? A: In 1972, Donna was diagnosed with MS. Q: What impact are you making? A: It is very rewarding to be of service to others in the MS community and those in need of assistance. The biggest success for both of us is to be able to help others, especially newly diagnosed and their caregivers. Due to the networking through the MS Society, we receive many inquiries. We are able to meet and discuss needs and concerns for those diagnosed with the disease and caregivers. We have been blessed with the ability to assist others through difficult times, and help them internalize that a diagnosis of MS does not

S elf- Help

G roup L e

ader

Betsy Berry Day-of-event volunteer

FUNDRAISING

OPPORTUNITIES TO GET INVOLVED: >> Day-of-Event Volunteer >> DIY Fundraiser >> Event Committee Member >> Team Captain

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Event Committee Members, Spike MS Fundraiser

MS CONNECTION â&#x20AC;˘ 1.800.344.4876 â&#x20AC;˘ SUMMER 2015

Q: What is your connection to MS? A: I have two friends that have MS. Q: What impact are you making? A: I think the more we help out, the more we can get others to do so. After many conversations with people with MS over the last eight years, I realize my volunteer work gives them hope and is much appreciated. I truly enjoy meeting new people and giving back to the community. It is also a lot of fun working the different events. The MS community is such a special group, and I realize how blessed I really am. S

Q: Why should others volunteer? A: Others need to volunteer and help raise awareness and money to help bring an end to this disease that affects so many.

VOLUNTEER PROFILES

Lari Ainsworth Walk MS Team Captain

Q: What is your connection to MS? A: In 1996, I was blessed by being diagnosed with this disease for it has afforded me many opportunities to share my story and help others with and without the disease. Q: What impact are you making? A: Hopefully, my impact as a volunteer for the Society has gone beyond the money raised through Walk MS events. We want to find a cure and I hope our story has brought hope, peace and an understanding that a positive attitude has planted seeds in the minds of everyone we meet. I enjoy meeting the many new faces that are affected by this disease, sharing our story and raising funds to find a cure. Q: Why should others volunteer? A: #1- because it is fun, and #2- we can always use more volunteers. Your money raised could be the last penny needed to find the cure for there is no amount too small or too great!

Laura Steen Smarty Pants Trivia Night Co-Chair

giving time is sometimes needed even more than the money! Hosting events, creating new ways to raise money and spreading the message of the MS Society require time and effort that is always needed. I love the friendships I’ve created with other volunteers and members of the staff, as well as the people living with MS that I have met through the Society. The opportunities are also so different that it keeps it exciting. I’ve delivered goody bags to nursing homes, judged scholarship applications, helped with the finish line at Bike MS, helped with registration at Walk MS, served on the Leadership Council for Oklahoma, serve as an MS Ambassador and continue to cochair Smarty Pants Trivia Night. None of those experiences have been the same but they have all been great! Q: Why should others volunteer? A: When you volunteer for the MS Society, you can see the impact you have. Whether you answer phones in the office for a few hours each month or host a Golden Circle event, everyone is needed and helps make the MS Society as great as it is. LEARN MORE: volunteerMS.org LEARN ABOUT: Sign up to volunteer, participate or form a team in bikeMS.org or walkMS.org.

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Q: What is your connection to MS? A: My mom’s sister has MS. Q: What impact are you making? A: I have always said that I have more time than money to give, and I can see how

Michael Wentink MS Blogger

Q: What is your connection to MS? A: I have MS.

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AWARENESS & COMMUNITY ENGAGEMENT OPPORTUNITIES TO GET INVOLVED: >> Contributing Writer/Blogger >> MS Ambassador >> MS Entrepreneur

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

Q: What impact are you making? A: I hope to raise awareness and understanding of multiple sclerosis, the varying symptoms that accompany it and the impact it has on the quality of life, not just on the individual who has it, but also their family and friends. I love it when I hear from others that my stories, from my website at mjwentink.com (I also write for MSConnection.org and TheMighty.com), have positively influenced them in some way. Q: Why should others volunteer? A: Volunteering can be a way to use your natural skills and talents for something GOOD; to connect others living with MS; to reconnect with yourself as a “professional” if you can no longer work because of MS; to do something about MS NOW!

VOLUNTEER PROFILES

Kelli Tiffin MS Ambassador

Q: What is your connection to MS? A: I was diagnosed with MS approximately six years ago. Q: What impact are you making? A: I feel that getting information to people living with MS and their families is so vital to the improvement of their lives. I provide information on MS medications, items that help everyday living, exercises we can all do to help with mobility, or just symptoms. I enjoy meeting the people living with MS and hearing their stories. I sometimes hear frustration about the problems they suffer because of MS and it makes me want to help in any way I can.

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Q: Why should others volunteer? A: Others should volunteer because you will be able to see an impact immediately. You will help enrich the lives of people living with MS as well as enriching your life by getting to know these fabulous people!

LEARN MORE: volunteerMS.org LEARN ABOUT: Follow our bloggers and join the discussion on MSConnection.org.

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Put your idea into action by learning about the MSEntrepreneur program at msentrepreneurs.org.

Nannette Houston Office Volunteer

Q: What is your connection to MS? A: I am a person living with MS and have since 2003. M ake Your M ar k Da

SUPPORT AND LEADERSHIP OPPORTUNITIES TO GET INVOLVED: >> Make Your Mark Day Participant >> Office Volunteer >> Volunteer Connection Facilitator >> Workgroup Member >> Leadership Council Member >> Board of Trustees

Q: What impact are you making? A: I am now disabled and volunteer as much as I am able as a way of emotional therapy for myself after having to give up my own business. I enjoy being around other people with MS and knowing that I am still useful and have ways that I can give back to society and my fellow peers living with MS. Q: Why should others volunteer? A: I would encourage anyone living with MS, or others, to volunteer because there is a sense of self-worth and just an overall immense feeling of accomplishment one feels when you give your time to help others.

VOLUNTEER PROFILES

James Kitzmiller Leadership Council Member

Q: What is your connection to MS? A: My brother-in-law has Primary Progressive MS, and his great-aunt and second cousin lived with MS. Now, I have many friends and co-workers who either live with MS or are directly affected by it. Q: What impact are you making? A: When I volunteer, I directly see how my assistance impacts those people at events who are living with MS. I see their tears of joy and the hope that one day we will all live in a world free of MS. As long as those of us who volunteer and fundraise continue to do so, and those who are fighting the fight to make this a world free of MS continue to do so, one day we can achieve that dream for everyone who lives with and is affected by MS. Q: Why should others volunteer? A: Thereâ&#x20AC;&#x2122;s a great slogan one of our Bike MS teams uses: Because we can. I see those with MS try so hard just to do some tasks I take so much for granted. Why should others volunteer? Because they can. Because they can make a difference. Because they can help so many. Because even by just cheering on a cyclist at Bike MS or helping with registration or T-shirts for a Walk MS event, you can make a difference.

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LEARN MORE: volunteerMS.org LEARN ABOUT: Who serves on the South Central Board of Trustees? MSsouthcentral.org/ boardoftrustees

MOVING TOWARD A WORLD FREE OF MS

BE SEEN

Dinner of Champions

Walk MS

On the Mo

SOUTH CENTRAL REGION

Quarterly Photos 2015

An internationally acclaimed artist living with MS, Lydiaemily is traveling across the country to paint street murals as a way to connect the MS community. In March, she painted one of her murals at the Hops & Grain Brewery in Austin, Texas, and she invited individuals affected by MS to come out and get the first look. The mural, which will stay up indefinitely, is intended to bring people together and inspire them around a powerful and relevant symbol of connecting to end MS forever.

Lydiaemily MS

Walk MS: El Paso 2015 brought the community together, including dedicated volunteer groups from Sam’s Club, Bel Air High School and Chapin High School.

MS CONNECTION • 1.800.344.4876 • SUMMER 2015

Spring Walk MS events were held in 16 cities across South Central, uniting friends, families and organizations for a day of celebrating, connecting, and raising funds that will bring us closer to a world free of MS. Hope Award Recipient, Steven H. Pruett, and his wife Debbie at the 2015 Dinner of Champions in Midland, Texas on April 30. Steve was honored for his leadership in community service to the people and businesses Fort Worth Mayor Betsy Price celebrates the completion of West Texas and the Permian Basin. of her two-day journey to raise funds and awareness for Keynote Speaker Kristie Salerno Kent and Dr. MS at the Bike MS: Samâ&#x20AC;&#x2122;s Club Round-Up Ride 2015 finish line in Sundance Square. Mayor Price cheered on Gabriel Pardo inspire attendees at the 2015 the riders as they crossed the finish line along with Leah Oklahoma City On the Move Luncheon on Weatherl, Vice President of Development, and Mark May 5 at the historic Skirvin Hilton Hotel. Neagli, Regional Executive Vice President.

Bike MS

Awareness Mural

Camp Can Do Camp Can Do got animated this year, as individuals living with MS celebrated being able to do whatever they wanted in the completely accessible environment at Camp For All in Burton, Texas. Held in May, the annual recreational program allows campers of all abilities to enjoy canoeing, horseback riding, ropes courses, swimming, arts and crafts, parties and more. More importantly, campers are able to connect with one another and make lasting friendships.

MS Entrepreneur

Georgetown, Texas teen Kylee Hall launches her cookbook, Trixieâ&#x20AC;&#x2122;s Delights, to raise funds for MS research. Kylee, an MS Entrepreneur grant recipient, is pictured with her mother, Kimberlee who lives with MS.

DIY FEATURED STORIES

Do It Yourself (DIY) Fundraising is an opportunity for people with a deep commitment to the MS cause to raise awareness and critical funds for the MS movement in new and creative ways. By putting their own spin on fundraising, these individuals are able to take their passions and put them into action.

MS CONNECTION CONNECTION • 1.800.344.4876 SUMMER 2015 • SPRING 2015

“For years I have wanted to do something to help cure MS, and now I’ve decided to ride my heart out,” said cyclist Ray Moore. Driven to help his sister and niece who live with MS, Ray morphed his passion for bike riding into a DIY fundraiser called “MS One Million.” The one million in the title is in reference to the one million vertical feet Ray will strive to bike in one year. Ray feels empowered against MS as he rides through rain and cold because he knows his efforts are helping people who are affected by MS live their best lives. Hiking the Grand Canyon from rim to rim is the challenge of a lifetime. For Stan Spears and his friend, Mike, their adventure begins in July as they traverse 24 miles of steep terrain. Although, there is one caveat; Mike is living with MS and will make the trek on crutches! Their story is one of friendship and perseverance as they attempt this extraordinary crossing armed with only two backpacks that weigh no more than 25 lbs, light one-man tents, sleeping pads, and a first aid kit. Stan created this hike as a DIY fundraiser because he wanted, “…the world to know about Mike’s effort and his ability to overcome the obstacles of MS.” Brent Laughlin has always been interested in climbing Mount Kilimanjaro. After some encouragement from his daughter, he finally decided to make the climb in honor of his sister-in-law, Nancy Hawkins, who has lived with MS for 32 years. Inspired by Nancy’s life as a mom, friend and active community volunteer, Brent, along with his daughter and two friends, will ascend Mount Kilimanjaro on July 3. “Our eight-day, 50-mile trek to the summit of Mount Kilimanjaro is dedicated to Nancy in recognition of her perseverance in her struggle with MS. She has let nothing stand in her way and she will be our example as we push to the top,” shares Brent on his DIY fundraising webpage.

“For years I have wanted to do something to help cure MS...now I’ve decided to ride my heart out,” ~ Ray Moore

Get Connected

CALENDAR

JULY

14 Webinar: Fatigue Management with MS

mscando.org

7 pm CST

21 Telelearning: Gender Differences in MS 6 pm CST nationalMSsociety.org/telelearning 23 Telelearning: Gender Differences in MS 9 pm CST nationalMSsociety.org/telelearning 25-26 Bike MS: Cactus & Crude, presented by Apache Midland - Lubbock, TX | bikeMStexas.org

AUGUST 6 Smarty Pants Trivia Night 7 pm CST Oklahoma City, OK | MStriviachallenge.org 11 Webinar: Mood and MS, Managing Depression 7 pm CST mscando.org 21-23 Journey Camp for Kids of Parents with MS Argyle, TX | MStexas.org 29-30 Bike MS: Pedal los Pueblos | Pojoaque, NM bikeMSnewmexico.org

SEPTEMBER 8 Webinar: Disease Progression in MS 7 pm CST mscando.org 12-13 Bike MS: Rock’n Hot Ride Little Rock – Hot Springs Village, AR | bikeMSarkansas.org 15 Telelearning: Preparing for MS Doctor Visits 6 pm CST nationalMSsociety.org/telelearning 17 Telelearning: Preparing for MS Doctor Visits 9 pm CST nationalMSsociety.org/telelearning 17 A Vintage Affair for MS | Little Rock, AR 6:30 pm CST aVintageAffairMS.org 19 Walk MS: Killeen Area | Harker Heights, TX | walkMS.org 26-27 Bike MS: The Road Divided | Norman - Stillwater, OK bikeMSoklahoma.org

Learn more about DIY Fundraising by visiting nationalMSsociety.org/diy

Connect with the information, resources and individuals you needEsti to nam live qui your bestdero life.il minvel invelig rendis To learn more, contact entibea an MS senvolor Navigator at 800-344-4867 o il minvel inpls. me qui or visit nationalMSsociety.org. Sign up to receive Society rend contact us at lee.kilborn@nmss.org emails at nationalMSsociety.org/signup to stay updated and connected. MOVING TOWARD A WORLD FREE OF MS

National MS Society | South Central Region 8111 North Stadium Drive, Suite 100 Houston, TX 77054

...because I believe with or without MS, you can say

"Yes"

to life.

- ZOE KOPLOWITZ, 20 TIME NYC MARATHON FINISHER LIVING WITH PROGRESSIVE MS.