MOVING TOWARD A WORLD FREE OF MS FALL 2015
CONNECTION The Official Magazine of the National MS Society South Central Region
MAKING AN
IMPACT
p.12
FEATURED ARTICLES
6 • RESEARCH: NO OPPORTUNITY WASTED 10 • I AM AN MS ACTIVIST: DR. EDWARD FOX 20 • TEAM WINGMAN’S GOT YOUR BACK!
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.
Marilyn MMOOTTHHEERR Diagnosed
in 1998
D E NT LLEG E STU O C i x Le Diagnose
d in 20 09
“People “People affected affected by by MS MS can can live live their their best best lives lives as as we we STOP STOP MS MS in in its its tracks, tracks, RESTORE RESTORE what what has has been been lost lost and and END END MS MS forever.” forever.”
NationalMSSociety.org
800-344-4867
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.
CONTACT
2
IDEA
LEARN
CONNECT
MS CONNECTION • 800-344-4876 • FALL 2015
SIGN UP
SHARE
GET CONNECTED: Look for these icons throughout MSConnection Magazine
REGIONAL UPDATE
No Opportunity Wasted M A K I N G A N I M PA C T TO G E T H E R
I
can’t believe the end of the year is upon us. Thank you for the impact you have made as together we did something about MS now. This time of the year is always exciting as we gather together for the Society Leadership Conference, November 5-7, in Fort Worth, Texas. This annual opportunity brings together volunteers from across the country to celebrate, inspire, educate, and share so we are equipped for the important work still ahead to end MS. Volunteers who have demonstrated extraordinary impact and commitment to the Society’s mission will be inducted into the Society’s Volunteer Hall of Fame during the conference. This year, an impressive group of 10 South Central volunteers will be bestowed this honor. The Society’s groundbreaking $250 million No Opportunity Wasted (NOW) campaign accelerated vital progress towards stopping MS in its tracks, restoring what has been lost and ending MS forever. Of the nearly $900 million invested in MS research by the Society since 1946, the NOW campaign fueled more than 25% of that total in just five years. Since the start of the campaign in 2011, the Society launched 732 new research projects and made significant strides to end MS forever. We are now in the homestretch and it’s not too late to give to raise the necessary funds for MS research! Your impact helps us help thousands living with MS, their families and caregivers. You allow us to foster the scholars of today who are essential to the MS movement. The momentum is building and for that we cannot thank you enough! Thank You,
Regional Executive Vice President
MARK NEAGLI Board of Trustees Chairman
WILLIAM BYERLEY Houston, TX Treasurer
DON McCORMACK Houston, TX Secretary
DAVID CARDER Tulsa, OK
Fort Worth, TX is proud to again host the
Society Leadership Conference, November 5-7.
Volunteers from across the country are invited to join us this year as we come together for general sessions and workshops designed to connect volunteers around fundraising and meeting the needs of people living with MS. There will be an opportunity to hear from organizational leaders, including Society CEO Cyndi Zagieboylo.
Mark Neagli
e Vice President Regional Executiv gion South Central Re
To learn more or to register, visit
nationalMSsociety.org
3
SOUTH CENTRAL REGION
ARKANSAS https://MSarkansas.org
Heather CAMP COUNSELOR
@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
TEXAS
@NMSSLouisiana
Metairie/New Orleans
4613 Fairfield St. Metairie, LA | 70006 | 504-322-3790
NEW MEXICO https://MSnewmexico.org /MSnewmexico | @MSsocietyNM Albuquerque
@MSsocietyTX
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
facebook.com
twitter.com
Call. Click. Connect.
MS Navigator 速 800-344-4867, option 1, contactusnmss@nmss.org
MSConnection.org
CONTENTS PHOTO CREDI T: MARK KIRYLUK
William #Strongert hanM S Diagnosed
in 20 02
06
10
NO OPPORTUNITY WASTED
ADVOCACY
I AM AN MS ACTIVIST
First-time State Action Day attendee Dr. Edward Fox, MD, PhD learned last year just how important his background and experience could be in the legislative process.
12 MAKING AN IMPACT
COVER STORY
RESEARCH
How the National MS Society scholarship program is changing lives and inspiring action
Attending college is hard enough, but the financial burdens of MS can make it impossible. While the scholarship helps ease the budget stress, the impact of the program goes far beyond just financial.
16
PROGRAMS
DELIVER A SMILE The more people in the community who deliver smiles, the more people we are able to reach.
18 “I AM POLARIS, THE NORTH STAR.” 20 “WE’VE GOT YOUR BACK!” - BIKE MS
EVENTS - WALK MS
MEDICINE
22
PARTNERS IN MS CARE
24 26
MS ENTREPRENEURS: A HIKE FOR ALL ABILITIES
28
SUMMER PHOTOS, 2015
LEADERS IN THE MOVEMENT
30 DIY
31 CALENDAR
VOLUNTEERS
BE SEEN
GET CONNECTED
5
RESEARCH
NOW:
NO OPPORTUNITY WASTED
Q&A WITH DR. MATTHEW RASBAND
In 2010, the National MS Society launched the groundbreaking $250 million NOW MS Research campaign – the largest MS research campaign in history – to accelerate vital research progress towards our goal of stopping the disease in its tracks, restoring lost function, and ending MS forever. As the NOW campaign comes to a close, we can see the impact being made. MS treatment options are rapidly increasing, with five new treatments approved in just the last five years. The MS treatment pipeline has expanded, with more potential treatments in trial now than any other time in history. The promise of myelin repair is now a reality. Our understanding of the causes of MS has expanded, with over 100 genetic variants identified in just the last five years and several risk factors confirmed. We have galvanized the world around solving progressive MS, and we have recruited more than 900 new researchers to the field, researchers like Dr. Matthew Rasband. Matthew N. Rasband, PhD, is a professor and the Vivian L. Smith Endowed Chair in Neuroscience at Baylor College of Medicine. He received a Bachelor of Science in Physics from Brigham Young University, and a master’s and doctorate degree in biophysics from the University of Rochester School of Medicine. For the last 20 years he has
6
MS CONNECTION • 800-344-4876 • FALL 2015
worked to understand how glia (the cells that make myelin) change the structure and function of axons in both the healthy and diseased nervous system. From 2006-2011 he was a Harry Weaver Neuroscience Scholar of the National MS Society. He runs a large and productive research laboratory with many students and postdoctoral fellows from around the world, and is currently funded through the NOW campaign.
Q: Why did you choose to research multiple sclerosis?
A: One of the laboratories I rotated through during
my first year in graduate school was working on the problem of how ion channels (the proteins necessary for the generation of electrical signals in the nervous system) are affected by demyelination and remyelination. Two things caused me to decide to work on MS. First, I was fascinated by the exquisite molecular organization of myelinated axons, and second, I wanted to work on a problem that had the potential to impact people’s lives. Remarkably, while I was deciding which lab to join, my cousin was diagnosed with MS. That sealed it for me.
Q: Why is funding research important? A: Funding research is important because it is
impossible to predict from where the next breakthrough will come. Transformative discoveries are almost always serendipitous, expensive and take time. Unfortunately, few organizations can or are willing to support high-risk research. The major funder of biomedical research in the US, the National Institutes of Health, has seen its purchasing power diminish significantly. If there was a clear path from disease to cure, then pharmaceutical companies would have run that path again and again. But the path is not clear. Thus, a cure or effective treatments for MS will require patience, perseverance and investment by those who are most committed to the goal. Fortunately, the National MS Society has this view and is willing to support this kind of research.
Q: What are some challenges you face in your work?
A: The major challenge I face is finding the time
necessary to do research. The administrative burden required to continually obtain research funding significantly impairs my ability to do research.
The National MS Society’s groundbreaking $250 million No Opportunity Wasted (NOW) campaign accelerated vital progress towards stopping MS in its tracks, restoring what has been lost and ending MS forever. Your contributions to the NOW campaign transformed the pace of MS research progress – accelerating breakthroughs that will change lives and end MS forever. Achievements include, but are not limited to: • Improved tools to speed the diagnosis of MS • Uncovered new evidence for disease progression risk factors • Founded the International Progressive MS Alliance in partnership with MS Societies of Italy, United Kingdom, Netherlands, Canada and the MS International Federation • Established the MS Outcome Assessments Consortium to develop measures of MS progression and speed clinical trials/FDA approval of new therapies • Advanced myelin repair strategies • Identified important leads regarding environmental and lifestyle factors that increase MS risk • Discovered genes that make people susceptible to MS • Expanded the Network of Pediatric MS Centers
We are now in the homestretch of this campaign. Stay tuned as we recap the final successes in the next edition of MSConnection! Make your annual gift at
giving.getconnectedMS.org and help us raise the necessary funds to successfully complete this historic achievement.
RESEARCH
Q: What do you see as some of the most Q: What are you currently working on related to multiple sclerosis?
promising research for individuals living with MS? What new studies excite you?
A: Current treatments for MS are
immunomodulators and do not address the need for remyelination or prevention of axon degeneration. This is a major problem. I think the field of glial biology has made significant advances in our understanding of how oligodendrocytes develop and make myelin, which I expect will lead to treatments in the next several years. In contrast, we still know very, very little about how and why axons degenerate in MS. I am very excited about studies in my own lab that are beginning to uncover the mechanisms that control the structural integrity of axons. I think understanding these properties of axons will be essential to inhibit axon degeneration in primary and secondary-progressive MS.
A: First, we are working to understand how ion
channels are clustered in myelinated axons to mediate the efficient and rapid propagation of electrical signals in axons. This is important because ion channel clustering must be re-established during myelin repair. Second, we want to determine the molecular mechanisms responsible for axon degeneration in primary and secondary-progressive MS. We are focused on the role of the axonal cytoskeleton in these events.
Q: You’ve been connected to the National MS
Society for many years, and in many different ways. Can you share a few of your favorite memories, moments or successes?
A: I served for six years on a Society grant review
panel, which was very satisfying as I got to read about the most cutting-edge ideas and recommend proposals that I thought were the best. I’ve had the privilege to speak to groups organized by the Society about my research and the future of Society funded research. Every time I interact with patients or their families I’m reminded of the importance of my work.
Q: What did it mean to be a National MS
Society Harry Weaver Neuroscience Scholar recipient?
Q: How do you like to spend your time when you are away from work?
A: I most enjoy being with my wife and four
children. When we aren’t together as a family I’m often running, swimming or biking. I’m an avid triathlete and have completed Olympic, halfIronman, and full-Ironman distance triathlons.
Q: The work you do is significant in helping
individuals and families affected by MS live their best lives. How has that impacted your life?
A: Besides the intellectual stimulation that comes
from studying how the nervous system is built and responds to disease or injury, I definitely feel a great sense of satisfaction and purpose knowing that what I learn will help those affected by MS. Because of this, I have not had a single day in my entire career where I haven’t been excited to go to work. How many people can say that?
A: It was a tremendous support at a critical time
in my career to receive the Scholar award. As I described above, the major challenge faced by most investigators is having the financial resources and freedom available to test their most compelling ideas. The Harry Weaver Neuroscience Scholar award does just that. I can also tell you that it is very satisfying (and encouraging) to be recognized with the award. In my case it further strengthened my commitment to MS research.
8
MS CONNECTION • 800-344-4876 • FALL 2015
. Learn more about the latest in MS research, including the impact of the NOW campaign by visiting nationalMSsociety.org/research
BOARDNOMINATIONS NOMINATIONS BOARD
ACCEPTED NOW ACCEPTED Nominations Nominationsare arenow nowbeing beingaccepted acceptedfor forthe the South SouthCentral CentralBoard BoardofofTrustees. Trustees. •• The ideal candidate will The ideal candidate willexemplify exemplifyour ourcore core values valuesof ofcommitment, commitment,integrity, integrity,leadership, leadership, excellence excellenceand andteamwork. teamwork. •• Individuals interested Individuals interestedininbeing beingconsidered considered for nomination to the National for nomination to the NationalMS MS Society SocietySouth SouthCentral CentralBoard BoardofofTrustees Trustees should shouldsubmit submitaaletter letterofofinterest interestand andaa biography, along with full name, mailing biography, along with full name, mailing address, address,email emailand andphone phonenumber. number. IfIfyou are nominating a third party, you are nominating a third party,please please include includetheir theirconsent consenttotothe thenomination. nomination. •• Nominees Nomineeswill willbe benotified notifiedofofboard boardmember member expectations, responsibilities, and fiduciary expectations, responsibilities, and fiduciary and andtime timecommitments. commitments. Final candidates Final candidateswill willbe beinterviewed interviewedby byaa member memberof ofthe theGovernance GovernanceCommittee. Committee.
Please Pleasesubmit submitnominations nominationstotoMireya MireyaZapata, Zapata, mireya.zapata@nmss.org by October mireya.zapata@nmss.org by October15. 15.
TAB TITLE ADVOCACY
IAnam an MS Activist: interview with Dr. Edward Fox
By Holly Ridgway, Contributing Writer
The voices of people affected by MS are heard and drive change wherever it is needed. Few places is this more evident than at a State Action Day, where MS Activists come together at their state capitol to learn about MS advocacy priorities and share their story with their State Senators, Representatives and policy makers. No matter what your background, experience or connection to MS, your voice has the power to drive change. Your unique experiences can have a remarkable impact because you never know when your story, your background and your connections will spark something with an elected official. First-time State Action Day attendee Dr. Edward Fox, MD, PhD, learned last year just how important his background and experience could be in the legislative process. A practicing neurologist since 1992, Dr. Fox specializes in the care of MS. This past year he decided he wanted to do more, so he attended his very first State Action Day in Texas. “I thought I would get there, be handed some information, a map and some names of some legislators to go visit,” he said. He was pleasantly surprised to find quite a bit more direction and support. There was a large room that all of the activists were meeting in, many first time activists like himself. They did introductions, broke into
10
MS CONNECTION • 800-344-4876 • FALL 2015
groups, reviewed priority issues and had the opportunity to ask questions about their upcoming meetings before setting out on their way to meet their legislators. He felt that staffers and legislators alike were a very welcoming audience. The legislators were overall very impressed that he had taken time out of his busy schedule to make the trip. One of his scheduled meetings for the day was with Representative Greg w to discuss a bill to protect consumer access to medications during an insurance appeal. Rep. Bonnen, a neurosurgeon, was asked to sponsor the legislation prior to State Action Day, but he was undecided. However, when Dr. Fox met with him during State Action Day, it suddenly became a peer-to-peer conversation. “The situation regarding insurance coverage of medications for many diseases was that without forewarning, a patient may instantly be denied coverage for a medication currently being used because of decisions made unilaterally by the insurance companies regulated by the State of Texas,” Dr. Fox said. As a board member of the Texas Neurological Association, and the subspecialty representative to the Texas Medical Association, he was able to speak on behalf of what patients and their families go through from diagnosis to treatments to hurdles that may have to be overcome with insurance companies. His experience as a neurologist dealing with this issue with his patients was one that Rep. Bonnen
“You are not alone, you have teammates. If we work as a team, together we can achieve great things.” ~ Dr. Edward Fox
Rep.Bonnen & Dr.F ox fully understood, and they quickly found other connection points during the visit. As a result of their meeting, Rep. Bonnen signed on as the sponsor of the bill. It was approved through the House and Senate and signed into law. “Dr. Fox was instrumental in making that happen. His experience in this case opened doors and backed up the personal stories shared by other MS Activists,” said staff member Simone Nichols-Segers, who leads MS advocacy efforts for Texas. Not only did Dr. Fox make an impact on the legislation, but the State Action Day made an impact on him. By the end of the day he realized how much hard work had gone into that one day. He was very impressed with not only the activists, but the National MS Society staff who worked so hard to make that day so easy for him. He never thought that just a few hours out of one day at the state Capitol would get him hooked.
Sign up today to stay informed on MS advocacy priorities and opportunities: visit nationalMSsociety.org/activist to join the MS Action Network. State Action Days are being planned for Arkansas, Louisiana, Oklahoma and New Mexico next spring. Because the Texas legislature only meets every other year, Texas MS Activists will focus on implementation of the bills passed this year and developing key legislative relationships. Learn how you can get involved in your state by calling 800-344-4867. Follow more MS Advocacy news on Twitter: #MSActivist
He now sees the value in staying involved with advocacy. As a physician, he can give a different perspective that may not always be recognized. Dr. Fox knows that it does not matter what party a legislator is in, what matters is that they listen, understand and hear the advocates. “I would encourage everyone to speak up and get involved,” he says. “You are not alone, you have teammates. If we work as a team, together we can achieve great things.” MOVING TOWARD A WORLD FREE OF MS
11
COVER STORY
MAKING AN
IMPACT
How the National MS Society scholarship program is changing lives and inspiring action
“I quickly learned why the Society invests in scholarships and the impact it can make.”
GRIFFey FAMILY
I
t is said that success is where preparation and opportunity meet. The National MS Society Scholarship Program takes outstanding students those who have put in the preparation by studying hard, earning good grades, serving as leaders and contributing to their community – and presents them an opportunity to find success.
The National MS Society Scholarship Program exists to make sure MS doesn’t stand in the way of an education. When an MS diagnosis strikes a family, it can have unpredictable, emotionallychallenging and expensive effects. Attending college is hard enough, but the financial burdens of MS can make it impossible. While the scholarship helps ease the budget stress, the impact of the program goes far beyond just financial. Students are given the opportunity to grow, achieve and give back. Arkansas-native Melanie Griffey actually forgot she had applied for a National MS Society scholarship
when she was awarded $2,500 last year, which happened to be the exact amount she still needed to fully fund her education. “I remember when applying that maybe this money would be better spent if it went to research,” she said. “But I quickly learned why the Society invests in scholarships and the impact it can make.” Melanie’s father, Phil, was diagnosed with MS in 2001. The impact of his diagnosis led Melanie to action. At the age of nine, she started a coin drive at her school that to date has raised more than $30,000. She took this same passion with her to college and used the scholarship as a way to share her experiences with people she met. Melanie’s new friends donated to the National MS Society in her honor as a birthday gift, her sorority Alpha Gamma Delta planned their own fundraiser and Melanie was asked to share her story at last year’s A Vintage Affair for MS in Little Rock. Countless fundraising and awareness opportunities have resulted from Melanie’s efforts. “I can tell you that the $2,500 I received more than paid itself back and will continue to do so for years to come.” Melanie returns as a college sophomore this year armed with a renewal scholarship and continued passion for MS awareness and fundraising.
Megan
F
or college junior Megan Butterman, receiving a Top Scholar award from the National MS Society has enabled her to change her life. Growing up, Megan was the primary caregiver for her mom, who lives with secondary-progressive MS. But after her own immune system shut down from the stress, Megan decided she needed to make some lifestyle changes, starting with pursuing her dreams of helping other children dealing with stress. The scholarship she received from the Society has aided her on that path.
“Being away at school has been good, but also hard. I couldn’t have moved away if my brothers hadn’t been able to stay and take care of our mom,” ...My brothers are really proud of me and see college as a great decision.”
“Being away at school has been good, but also hard. I couldn’t have moved away if my brothers hadn’t been able to stay and take care of our mom,” the Rio Rancho, New Mexico native stated. “My goal was to go out of state for college so that I could become more independent, and I think I achieved that. I have my own apartment, earn straight A’s, am meeting new friends, and finding ways to give back. My brothers are really proud of me and see college as a great decision.”
Megan is studying elementary education and psychology, and now helps other students learn the scholarship process. She speaks to students at the high school she attended to educate them on the importance of scholarships and helps them with the application process. “Each year, I also have to reapply, and I really enjoy that process,” she says. “It makes me think through my goals for the upcoming year, and helps me reflect on all that happened the year before.”
Megan says she feels like a normal college student, but can see how her experiences have made her different than her fellow students. “Being a caregiver really impacted my ability to keep close friendships. I have a harder time coming out of my shell, but I really like getting to know my classmates and going to different campus activities with my roommate.“
With the 2015-2016 academic year in full swing, the National MS Society is excited to see the impact its scholars continue to make on the world around them. Thanks to the generosity of donors, the South Central Region of the National MS Society was able to fund $189,750 in scholarships this year, making education possible for 152 new and returning college students. Congratulations to all the scholars, and best of luck on your school year!
She not only focuses on improving her emotional health at school, but also her physical health. “I’ve been having some jerks or spasms, which could be an early symptom of MS, but I know the best thing I can do is to exercise and eat healthy.”
MOVING TOWARD A WORLD FREE OF MS
13
“My experiences make me want to be part of finding the cure for MS.”
S c h o l ar s h i p Pro g ram FAQ :
WHO • Individuals who have MS or wh o have a parent with MS and • Are either a US citizen or legal res ident and ~Daniel Seelig • Will be attending an accredited 2015 Scholar from Edmond, OK. undergraduate program (for any year of Daniel’s mom lives with MS. He undergrad) and plans to major in Chemistry/Pre-Med • Have never completed an underg raduate at the University of Oklahoma degree and • Will be enrolled in at least 6 cre dit hours per sem est er in cou rse work leading to a DEAR NATIONAL MS SOCIETY, degree, license, or cer tificate. WHERE WOULD I BE WITHOUT YOU!?! • Anyone who has previously app lied and t S again been declined may not reapply. Ho I went from a loSt 8-year old girl to a YAMS (youth wever, current scholars are encouraged to MS) advocate and now graduatin g with my ChemiStry degree! apply for renewals. You guyS have Seen me in the be St and worSt of timeS, and you will alwayS be there. The TulSa Office haS alwayS been So WHEN cloSe to my hearth and your support through college cannot • Application Window: be thanked enough! I do plan to continue my education at Oc tober 1 – Januar y 15 the University of KanSaS, studying inorganic chemiStry! Your • You will be notified if you receiv ed chapter paved my way to graduate school where a scholarship by mid -April I have the opportunit y to grow, obtain a successful HOW career in chemiStry, and finally support my family! • Apply online: nationalMSsociety.o rg/ With all the thankS in the world, scholarship • For assistance in filling out the app lication, email mssociety@scholarshipameric a.org or call 507-931-0 471. National MS Society Scholarship Recipient
Daniel
“MS does not have to stop me from living boldly, loving well and conquering one life goal at a time.” ~Naomi Flores
Naomi
2015 Scholar from Channelview, TX. Naomi was diagnosed with MS last year while attending the University of Mary Hardin Baylor. She plans to go into film-making.
LATIONS: CONGRANATTIOU NAL MS SO CIETY SCHO LARS
TO TH E NEW 2015-2016 FIRST
LAST
CITY
Kayla Avery Macie Brady Savanna Jason Liza Hilmi Jyron Maggie Savanna Eugenio Sabrina Kelsea Brooke Alyssa Ashley Alex Daniel Mariah Richard Aubrey Maranda Jillian Alisa Cooper Brandon Alexi Austyn Amber Lauren
Ball Green Martin Miller Harris Genitty Hoeffner Hussein Walker Carrico Nelson Padilla Sullivan Bixler Crosby Fritze Maxwell Orta-Fowler Seelig Ackerson Ammons Artzberger Bailey Bass Bautista Begley Breazeale Brewer Carter Crandell Davis
Malvern Conway Hope Harrison White Hall Shreveport River Ridge Chalmette Paulina Albuquerque Edgewood Jarales Albuquerque Stillwater Choctaw Edmond Newcastle Lawton Edmond Blanco Sugar Land LeagueCity Buffalo Woodville Giddings Garland Splendora Fort Worth Plano Denton Fort Worth
STATE AR AR AR AR AR LA LA LA LA NM NM NM NM OK OK OK OK OK OK TX TX TX TX TX TX TX TX TX TX TX TX
FIRST
LAST
CITY
Kendall Charnyce Makenna Leah Naomi Alyssa Samantha Savannah Paige William Michael Gina Joshua Kendall Jonathan Marie Lauren Smythe Victoria Madison Jordan Brandie Zachary Ryan Haley Jessica Kiara Madison Graciela Amanda
Dobbins Doman Dutter Fitzgerald Flores Garcia Glasford Harris Helbig Libey Liggett Litwin Martin Mccorvy Mejia Morgenthaler Mraz Mullikin Ochoa Parham Pellegrini Preuss Quick Scott Sellers Stevens Stewart Trammell Trimble-Quiz Watts
Missouri City Harlingen Fort Worth Channelview McAllen Euless Palestine Katy Fairview Richland Hills San Antonio Glen Rose Nederland Houston Houston Henderson Galveston Euless Aubrey Flower Mound Taylor The Colony Cedar Park Willis Houston Arlington Graford Austin Manvel
STATE
North Richland Hills
TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX TX
Visit nationalMSsociety.org/scholarship to learn more about the National MS Society Scholarship Program, including the application process and how to get involved as a donor. Help select next year’s scholars! Volunteers are needed to help review scholarship applications beginning January 2016. To learn more about this opportunity, visit volunteerMS.org. If you are a student living with MS, the Society has resources available for you, including information on your rights as a student, tips and resources and peer support options. Contact an MS Navigator at 800-344-4867, option 1 or visit nationalMSsociety.org. MOVING TOWARD A WORLD FREE OF MS
15
PROGRAMS
by Kurt Haaland By Tina Dam, Contributing Writer
T
he end of the year brings a season of gift-giving: holiday gifts to friends and family and year-end giving to charities they support. Volunteers of the Deliver-A-Smile program are also hard at work with their own kind of gift exchange: providing gifts and warm company to people living with progressive multiple sclerosis. Program participants are usually unable to leave their homes or are living in nursing homes due to the advanced nature of their MS. As a result, they may be isolated from family, friends, and their community. Volunteers offer companionship and bring gift baskets that include information about how the National MS Society can restore connections to information, resources, community, and people.
brighten the Day of with aDvanceD ms. Become a volunteer and Deliver a smile to an
solated, residing at home or in a long-term care facility.
lerosis Society is looking for volunteer groups who want to adopt the in their community. This is an ideal service project for Self Help Groups, undraising teams, and it will allow you to make a personal impact in the lives Jody has seen first-hand the impact she can make MS. “...eve
by simply visiting isolated individuals. She first connected with the National MS Society
ntually want to we are asking volunteers to put together integrate this and deliver a special gift bag during technology into home base d exer cise and rehabilitation pr ograms to help pe ople with M S streng then their bala nce andbaked include pa handmade cards, ttern of walking.”
Marilyn & y d Jo own gift bag. It can
goods, or gift items rom the community. The Society will provide materials for the gift bag that Above: Jody meets with Marilyn Koonce to share ft recipient to the The information and a gift and information. two posed in front of a resources they need to live their best life framed jersey Marilyn received from a cyclist who rode in her honor in Bike MS: The Mother Road Ride.
mbled, volunteers make personal visits to deliver the gift to individuals living • FALL 2015 CONNECTION • 800-344-4876 16 MS
“Some residents just don’t have the ability to get out very often, or do not have a lot of family that visit so they have become part of my extended family,” because her partner had MS before passing away years ago after battling cancer. For many years, she visited and brought gifts to individuals that were not able to leave their homes as well as those living in nursing homes. She felt it was a natural fit to continue her work by joining the Deliver-A-Smile program when it launched in Oklahoma. Over the years, Jody has formed many friendships with the residents she has met and they look forward to her visits. Her visits are more than bringing a smile. She connects individuals to the support and resources offered by the Society, including financial assistance, care management and peer support. She is selfless in her work and takes joy in helping any way she can - from completing paperwork to getting batteries for powered wheelchairs. “Some residents just don’t have the ability to get out very often, or do not have a lot of family that visit so they have become part of my extended family,” said Jody.
SShheellllyy && JJood dyy
The goal of Deliver-A-Smile is to reach out to those who are isolated either at home or in long-term care facilities, and to increase their connections to information, material resources, community and people. The number of people served is based on available resources, including volunteers and donations. Currently, Deliver-A-Smile is active in Albuquerque, Oklahoma, the Texas Panhandle and Austin, but this year the Society hopes to expand to cover all of South Central Region (Arkansas, Louisiana, New Mexico, Oklahoma and Texas), with opportunities to engage beyond just the holiday season. Jody’s work is just one example of the huge impact that can be made on these residents’ lives. To provide meaningful connections while increasing the reach to those isolated, the Society strives to have one volunteer for every four individuals living with MS in the program. Therefore, the more people in the community who deliver smiles, the more people we are able to reach. Become a volunteer or donor and Deliver a Smile to an individual who is socially isolated, residing at home or in a long-term care facility. To learn more, contact Vicki Kowal: 800-344-4867, ext 33302, or vicki.kowal@nmss.org.
Left: Jody brings a gift and a smile to Shelly Jones during a Deliver a Smile visit this past summer. Deliver a Smile volunteers make visits throughout the year, especially during the summer and winter holidays. This past year, volunteers visited a total of 239 individuals across the 5-state region, but with more volunteers, we hope to see that number grow. MOVING TOWARD A WORLD FREE OF MS
17
EVENTS
“I am Polaris, The North Star.” By Anne Marie Izzo, Contributing Writer
W
hile at a retreat, Lauren Kearbey was asked to write an identity statement. She chose Polaris, the North Star, seeing herself as a light in the dark; a guiding path for those around her. The North Star is actually not one star, but three. The triple-star system orbits a common center of mass, creating the constellation that remains the beacon of direction from 434 light years away. Like both of her parents, Lauren has multiple sclerosis. Which is why, now, Lauren’s identity statement has a deeper meaning. Together, the three of them are shining the light on the effects of the disease, the progress made in disease treatment and the hope that comes from the MS community. The impact the disease has had on her family is the driving force to help raise funds and awareness for the National MS Society. Her first step in this direction will be at Walk MS: Austin on October 24. “This will be my first Walk MS, “said Lauren. “After I was diagnosed, I went to the National MS Society website and thought I should do this and support all of the great stuff the MS Society does.” Lauren remembers the changes in her mother’s health after she was diagnosed in the early 1990s when there were few treatment options for people living with MS. Years later, her father was diagnosed at the age of 55. The progress that has been made in research has provided him options in treating his MS to which her mother did not have access at the time of her diagnosis. Fortunately, each have been able to find a treatment plan that has prevented any major relapses. Having witnessed her parents’ experiences, Lauren knew she immediately needed to see a physician when she began having fatigue, intermittent
LaureN & Husband tingling in her legs coupled with balance issues last year. After a two-month series of appointments, an MRI and lumbar puncture, it was confirmed: Lauren also has MS. “I knew what I was facing and I didn’t have that sense of, ‘oh my life is over’…when I first went to the doctor, I kind of already knew what it was.” For Lauren, the hardest part was waiting for the diagnosis confirmation so she could begin treatment. Although it was still a difficult time for Lauren and her parents, Lauren feels very lucky to have been diagnosed so quickly. Watching her parents live successful, happy and active lives with MS, Lauren knows she can go beyond managing it and thrive despite of it. Like her parents, Lauren has relapsing-remitting MS. But unlike her parents – especially her mother – Lauren walked out of the doctor’s office inundated with information. “My neurologist told me to go home, do research and when I came back, we could make a decision.” Walk MS, a signature fundraising event for the National MS Society, connects people living with
ER G N O R T S E R ’ WE
R E H T E G TO wwaallkk MMSS 22001515
THANK YOU TO OUR PREMIER NATIONAL SPONSOR:
“I “I knew knew what what II was was LOCALLY BY: facing and facingPRESENTED and II didn’t didn’t have have that that sense sense of, of, ‘oh ‘oh my my life life isis over’… over’… THANK YOU TO OUR LOCAL SPONSORS:
MS and those who care about them. Along with her husband, Lauren’s Walk MS Team MSuperheros is well on its way to making an impact. Just like Polaris, Lauren is now a bright fixture in the MS community and will continue to light the path for others affected by MS. When you participate in Walk MS, the funds you raise give hope to the more than 2.3 million people living with MS worldwide. Walk MS started in 1988, and to date has raised more than $870 million nationwide to support life changing programs and cutting-edge research. Register now, connect with others, and start fundraising today at walkMS.org. It only takes one person to inspire hundreds — that’s the power behind being a team captain. As a team captain you becomeREGISTER a leader in a powerful TODAY! movement towards a world free of MS.
WALKMS.ORG
Visit walkMS.org and create 1-800-344-4867 your team today!
WE’RE STRONGER
TOGETHER SED IN 2015
ENTER), DIAGNO
DOMINIQUE (C
BILL, DIAGNOSED IN 2010
ANGELA, IN 2007
ED DIAGNOS
WALK MS PARTICIPANTS
REGISTER TODAY! WALKMS.ORG 1-800-344-4867 THANK YOU TO OUR PREMIER NATIONAL SPONSOR
PRESENTED LOCALLY BY
19
EVENTS
Living with MS? WE’VE GOT YOUR BACK! By Rudy Mendez, Team Captain
Andrew, Chris, Rudy
M
y friend Andrew and I have always known without hesitation we ‘have each other’s back.’ Our friendship and trust ran so deep that we got a “wingman” tattoo to symbolize it. About five years later, we met and embraced Chris, who quickly became our brother from another mother. Although he doesn’t have the tattoo, there’s still hope for him!
After forming our trio, one of us was diagnosed with multiple sclerosis, something none of us knew anything about. We felt inadequate because we lacked any MS knowledge on how to help our friend. In 2012, we found a way to make a difference and support our brother; we decided to buy bikes and ride 150 miles in 90-plus-degree South Texas temperatures in support of our friend and the MS cause.
In order to bring attention to our fundraising efforts, the three of us agreed we wouldn’t say which of us was living with MS until we crossed the finish line for Bike MS: Valero Ride to the River, presented by H-E-B. We designed our jerseys with the simple phrase “One of us has MS!” Not only would this help us raise more money, but it felt appropriate since you can’t always tell from the outside that someone
“One of us has MS!” has MS. After 150 hard miles and raising $13,000, our brother and friend Chris Potter revealed to all at the finish line that he has MS. In true wingman style, Chris announced “but MS doesn’t have me!” Thus, Team Wingman and an amazing journey began. As we began to live life after an MS diagnosis, we connected with the National MS Society in San Antonio in 2013. The staff was quick to help us with recruiting and fundraising strategies, which led to a team of 26 riders raising $52,000. We were so proud, and energized, with our success especially knowing that we were making a difference for
our “wingmate” and everyone living with the diagnosis of multiple sclerosis. Team Wingman is a group of friends and family looking for a cure for their friend, but has taken on a much larger meaning. We now see this as a mission to fundraise for Bike MS and Walk MS events so we can end MS forever. We’ve heard others say fundraising is hard, but it doesn’t have to be. We choose to look at fundraising as fun, and work as a team to share ideas and work. What makes our approach a little different than most is that we fundraise all year long! Our bike team has continued to grow in both registered riders and the dollars raised. In 2014, Team Wingman grew to 81 riders, which included 11 riders living with MS. The team fundraised $155,000, which made us the second largest fundraising team behind Team H-E-B. Team Wingman also participated in Walk MS: San Antonio 2015 with 172 members raising $14,500.
Team Wingman It only takes one person to inspire hundreds — that’s the power behind being a team captain. As a team captain you become a leader in a powerful movement towards a world free of MS.
Our support doesn’t just stay in the San Antonio community. We have participated and fundraised in five other Bike MS events, and in January decided to cool off by participating in the MS Snowmobile fundraising event in Wisconsin. Team Wingman will also be represented in the first MuckFest MS Houston in November. Chris and I have been invited to speak with Society staff, volunteers and fundraisers from across the country to share the Team Wingman experience and help others with fundraising ideas so we can all raise more money to fuel progress in MS research. At the awards ceremony for the 2014 Bike MS: Valero Ride to the River, Team Wingman proudly stood with Team H-E-B and Team Velo Valero as we pledged to the audience and to the Society that we would each raise a historic-record $200,000 for the 2015 ride. Let the competition begin! We’re happy to talk with anyone and share the history of our team and our passion to find a cure. Above all else, we share how we strive to put FUN into fundraising so we can enjoy the effort and prepare to celebrate like there’s no tomorrow when the media announces: The cure has been found for multiple sclerosis!
MOVING TOWARD A WORLD FREE OF MS
21
MEDICINE
Partners in MS Care
The National MS Society’s Partners in MS Care program recognizes and supports quality MS care. The program involves healthcare professionals in the areas of neurology, rehabilitation, mental health and comprehensive MS care. The South Central Region of the National MS Society is proud to announce the following new Partner in MS Care:
Adrian Lacy, M.D. Adrian Lacy, M.D. is a board certified neurologist with 10 yearsexperience practicing medicine. He is the Medical Director of the Childhood Demyelinating Diseases Clinic at Cook Children’s Medical Center in Fort Worth, Texas and specializes in child neurology and epilepsy. Dr. Lacy received his medical degree from the University of Texas Southwestern Medical School at Dallas and completed his residencies at Arkansas Children’s Hospital in Little Rock, Arkansas and Children’s Health (formerly known as Children’s Medical Center) in Dallas, Texas.
Finding the right provider and learning to advocate for the care you need is important.
To learn more about Partners in MS Care in your area, please visit nationalMSsociety.org or call 800-344-4867, option 1.
22
MS CONNECTION • 800-344-4876 • FALL 2015
National MS Society Makes its Mark at Consortium of Multiple Sclerosis Centers Annual Conference
I
n May, the 2015 Consortium of Multiple Sclerosis Centers (CMSC) annual conference connected bright minds and fresh ideas to discuss a variety of multiple sclerosis topics. Taking place in Indianapolis, the conference included presentations, information and sessions to educate and increase awareness on the important aspects that affect individuals living with MS and all those who are partners in their care. The National MS Society is invested in the future healthcare leaders of MS and strives to make an impact in their lives. Recognizing the importance of the conference, the National MS Society provided full scholarships for five students from South Central to attend. These students were able to learn more about MS as well as engage and network with more than 30 healthcare providers who are champions and leaders of MS across the country. “I left Indianapolis with an expanded knowledge base about the pathophysiology of multiple sclerosis, the models of care and the roles and responsibilities of rehabilitation providers.” - Amber Bettencourt, a second year Speech Language Pathology student at the University of Louisiana at Monroe. “Attending CMSC has given me priceless insight into how various professions can bring different strengths to work together and ultimately provide
Pictured from left: Kristen Clifford, Melissa Watson, Amber Bettencourt, Travis Cosby, Sierra Gillette, Lauren Hall and Chloe Rogers
the best care for (MS) patients.” - Melissa Watson, a second year Masters of Occupational Therapy student at the University of New Mexico. “The conference encouraged and reminded me why I want to enter the medical field—to research, and help patients with neurological diseases.” - Sierra Gillette, a third year Biology and Spanish major at the University of Oklahoma The CMSC conference scholarship recipients appreciated the opportunity to attend, and look forward to continuing their connection with the Society through volunteerism and educational programs.
“Attending CMSC has given me priceless insight into how various professions can bring different strengths to work together and ultimately provide the best care for (MS) patients.” - Melissa Watson MOVING TOWARD A WORLD FREE OF MS
23
VOLUNTEERS
A Hike for All Abilities An MS Entrepreneur’s Story
re ideas changing the futu
By Kristina Kaltenbach
I
nspiration emerges from many places and experiences. For MS Entrepreneurs Emily Geery and Danielle Shuryn, their inspiration came from leading hiking excursions in New Mexico and watching people challenge themselves to achieve their personal best. With the help of the MS Entrepreneurs program presented by The Kanaly Foundation, Emily and Danielle created the On the Move program with the goal to ”enable people to have fun in nature, overcome challenges, accomplish goals and make new friends.” Starting with their
24
MS CONNECTION • 800-344-4876 • FALL 2015
passion of hiking and combining it with a desire to volunteer, they were able to impact their local MS community and connect others to the beauty of New Mexico. Both Emily and Danielle have family members living with MS and were first introduced to the National MS Society through Bike MS: Pedal Los Pueblos. For years they have been a part of the same team, Los Monos Ayudante, riding and raising funds to help find a cure. As they started to learn more about MS and hear people’s stories through
Photo: One of Emily and Danielle’s favorite places to lead hikes is the Kasha-Katuwe Tent Rocks National Monument in New Mexico.
Bike MS, they wanted to give even more of their time to help people affected by MS. When looking for ways to volunteer, they ran across an MS Entrepreneurs ad in the quarterly MSConnection magazine and started thinking of a project they could create and implement. After some time, they put together an opportunity to share their passion of hiking in New Mexico with individuals living with MS, including all different skill levels and abilities. They wanted to share the beauty of nature with others and instill a sense of confidence in them that they could achieve anything they put their mind to.
“When people were in nature they felt free to talk openly about their MS” After applying for an MS Entrepreneurs grant and being accepted, Emily and Danielle worked through their Bike MS team and the local office to help promote their new hiking program, On the Move. The grant money they received enabled them to pay for lunches, snacks, admission fees and other necessary items. Almost instantly, people began signing up for the hikes. They had originally planned to lead this program for only one year, but they ended up guiding four hiking excursions over the next three years with the largest hike including around 20 people. The fully supported hikes took place throughout New Mexico, and when possible, offered a wheelchair accessible option. With a variety of experience levels, Emily and Danielle worked to accommodate people’s needs and helped them finish the hike, no matter the circumstances. Some people were experienced hikers and for others it was their first time to encounter nature’s beauty through hiking. The hikes not only challenged people physically, but it also helped them to open up emotionally. ”It was amazing to see when people were in nature, they felt free to talk openly about their MS and be honest about how they were feeling,” Danielle said. On the different hikes, Emily and Danielle enjoyed the open
conversations about the struggles of MS and seeing the bonds made between the hikers strengthen their perseverance to keep moving forward despite MS. When asked about one of their favorite memories, they pointed to a time when they led a hike through the Santa Fe Watershed when an ominous storm began brewing. To their comfort, a member of the Forest Service was guiding the group, but the wind picked up and the rain began. Half of the group went back and half kept going and completed the hike. They each look back at this moment as an accomplishment, because even though it wasn’t the best of weather, they were reminded that through life’s storms you can stay strong and keep moving on. Both women still stay in contact with many of the people who joined their hikes and now call them friends. Even though the On the Move program is coming to a close, they encourage people to “keep hiking and exploring, achieving personal goals and having fun.”
“...want to integrate this ased technolog y into home b n e xercise and rehabilitatio programs to help pe ople with MS streng then their balance and pattern of walking.” Pictured are a group of people that participated in one of the On the Move hikes led by Emily and Danielle.
Have a creative idea that could improve the lives of people living with MS? Check out the MS Entrepreneurs website to learn more and submit an application by October 15 at MSEntreprenuers.org.
MOVING TOWARD A WORLD FREE OF MS
25
TAB TITLE VOLUNTEERS
LEAD | INSPIRE | EDUCATE
LEADERS MOVEMENT IN THE
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.
Maxine Maxine Cooper
summarizes her volunteer journey with the National MS Society by saying, “MS has changed and affected my life in so many ways, but it is what you make of it and how you face it that counts.” Since 2011, Maxine has made an impact in the MS community through her work as a fundraiser, advocate and MS Ambassador, helping to improve the lives of individuals living with MS. After being diagnosed in 2004 and retiring from a long career at Bank of America in 2011, Maxine’s pace of life and focus changed from work to her family. She also decided to fill her time by volunteering for the Society. She began with Walk MS: Fort Worth and soon became a top fundraiser and has been every year since. A couple of years after her first Walk MS, she was invited to attend the Texas Public Policy Conference (now known as State Action Day). Even though she was nervous to meet with legislators, Maxine jumped into her role as an MS Activist head first and never looked back.
26
MS CONNECTION • 800-344-4876 • FALL 2015
Maxine has attended several conferences, including the National Public Policy Conference in 2014, and has testified twice at hearings in Austin, Texas. Standing up for what people with MS need is one of the reasons Maxine is an MS Activist, and for the past four years has served on the Texas Government Relations Committee. Sharing her story became second nature to her, thus leading her to become an MS Ambassador and representing the Society across the North Texas community. She is currently in transition to become an MS Ambassador Program Manager, helping schedule opportunities such as health fairs, giving fairs and speaking engagements for MS Ambassadors to attend. In addition to her role as an MS Ambassador, Maxine will begin training to become a Community Health Relations Representative in order to increase awareness about the Society to the healthcare community. Maxine is continually inspired to do something about MS and encourages others to help create a world free of MS.
“MS has changed and affected my life in so many ways, but it is what you make of it and how you face it that counts.”
TAB TITLE
“I have always strived to take good care of the volunteers... I try to make it so enjoyable they will want to return time and time again.”
Jerry Jerry Irwin began volunteering for the
National MS Society as a Motorcycle Marshal for the Houston to Austin bike ride in 2003, now known as the BP MS 150. Soon after, he lent his 40 plus years of Ham Radio Operator knowledge, experience and leadership to improve the ride’s Motorcycle Marshal Program by becoming the Motorcycle Marshal Chair. Under his leadership, the once small group of volunteers has evolved into a world class team. As Motorcycle Marshal Chair, Jerry did more than simply recruit and train Motorcycle Marshals for the BP MS 150. Jerry’s volunteer tasks and invaluable contributions included holding Ham Radio Operator license classes, training and preparing new Motorcycle Marshals, updating the new rider training program and the Motorcycle Marshal Manual, creating GPS files for the rides, and much more. “I have always strived to take good care of the volunteers and to sufficiently prepare them ahead of time so that all they need to do is show up and go to work,” said Jerry. “I try to make it so enjoyable they will want to return time and time again.” When asked what he has gained from his years as a volunteer and leader with the Society, Jerry shares “The BP MS 150 is by far the neatest thing I have ever been involved in. It is so rewarding to work with the incredible group of volunteers on the Steering Committee that put this event together. To see us safely move a group of 15,000 people from Houston to Austin in two days is nothing
Opposite page: Maxine waits with other MS Activists to testify at the Texas Capitol in support of MS priority legislation. Above: Jerry crosses the finish line at the BP MS 150. short of phenomenal, not to mention the incredible amount of funds raised to support the fight against MS.” Jerry is retiring this year. All involved with the BP MS 150 are deeply appreciative of Jerry’s contributions and will miss seeing him.
We take the guess work OUT of volunteering. Fill out the Volunteer Interest Form and our Volunteer Engagement Specialists will match you with the perfect volunteer opportunity. See where your match will go!
volunteerMS.org Learn how you can find your connection as a volunteer. Visit volunteerMS.org. MOVING TOWARD A WORLD FREE OF MS
27
BE SEEN Over the summer, cyclists and volunteers came together for Bike MS: Valero Ride the Rim in the Texas Panhandle, Bike MS: Cactus & Crude in West Texas and Bike MS: Pedal Los Pueblos in Northern New Mexico to help create a world free of MS!
e Bike MS: Cactus & Crud SOUTH CENTRAL REGION
Summer Photos 2015 More than 30 kids joined us in Argyle, Texas on August 21-23 for this year’s Journey Camp, a weekend retreat for children or teens who have a parent living with MS. The camp, which travels to a different state each year, helps children connect and learn about MS while enjoying fun camp activities like arts and crafts, horseback riding, fishing, canoeing, outdoor cooking, relay races, challenge courses, swimming and more. This year’s camp featured a fun science theme, and group activities from UT Southwestern’s Department of Neurology.
28
MS CONNECTION • 800-344-4876 • FALL 2015
Journey camp
smarty pants trivia Gold Sponsor, Cox Communications, and their team of volunteers show off their nerdy side at the 2015 Smarty Pants Trivia Night on August 6 at the Oklahoma History Center in Oklahoma City.
Everest Climb DIY fundraiser, Brent Laughlin, succeeded in climbing to the summit of Mt. Kilimanjaro along with his daughter, Lucia Leigh, and her friend on Sunday, July 12. Leading up to their journey, they raised awareness and funds for MS in honor of Brent’s sister-in-law, Nancy Hawkins. At the end of the journey, they raised more than $25,000 to help people affected by MS!
DIY fundraiser, Stan Spears and his friend Mike, hiked from rim to rim of the Grand Canyon. Mike, who lives with MS, accomplished this feat in his wheelchair. “We hiked 24 miles in four days over some of the most brutal terrain in the country and desert temperatures,” Stan said. “Mike is a hero.” There are no limits to what Stan and Mike can achieve as they continue to raise funds through this remarkable DIY fundraiser.
MS ACTIVISTS
GRAND CANYON HIKE
While Congress is on recess during the month of August, many MS Activists have the opportunity to meet with their U.S. Senators, Representatives and staff to talk about MS priority legislation, such as advancing research for neurological diseases and access to quality complex rehabilitation technology. Pictured above, staff member Simone Nichols-Segers and Texas Government Relations Committee members Linda Roudebush and Markiesha Harewood meet with Kenneth Depew from Senator Ted Cruz’s office at Pie Haven in Austin, TX for a delicious treat and discussion.
29
DIY FEATURED STORIES
Dorothy ’s Dash | DIY Fundraiser: Kimberly Flower Mound, Texas
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.
ck Par ty raw fish MS Blo C d an e n ag p am Ch Carla Rosenberg DIY Fundraiser: Dallas, T X
Above: Carla and her family, including her mother who lives with MS, at the first annual Champagne and Crawfish MS Block Party in Dallas, Texas.
30
MS CONNECTION CONNECTION • 800-344-4876 • FALL 2015
Cheek
For 11 years, Kimberly Cheek and the staff of the Flower Mound Parks and Recreation have hosted “Dorothy’s Dash” in memory of their friend and co-worker, Dorothy Walkup, who had MS. The town of Flower Mound sponsors Dorothy’s Dash to, “honor her memory, share her example with others who may suffer this terrible disease, and to raise funds to combat multiple sclerosis,” shared Kimberly. Dorothy’s Dash includes a Race Warm-Up, Kid K, 5k Run/Walk, inflatables, sponsor tables, music, refreshments and awards. Kimberly and her team’s recipe for success includes reaching out to local businesses, churches and residents for support. This year’s race is scheduled for Saturday, Nov. 14 and is sure to be another successful event raising critical funds and awareness to end MS forever. Susan Terry combined her love of speed and raising awareness of MS into an annual event of racing motorcycles, go-karts and wing karts on their family owned Cactus Speedway in Bullard, Texas. Need for a Cure Race is more than just a race, it also features a live auction, concert and items for sale with all proceeds benefiting the National MS Society. Susan uses the DIY webpage to raise donations online and spread awareness about MS. Here is Susan’s advice for others looking to start their own DIY fundraiser: “Remember that every penny counts! Every dollar gets us one step closer to a cure.” The third annual Need for a Cure Race is scheduled for Oct. 10, 2015. Who doesn’t love champagne, crawfish and live music? That was Carla Rosenberg’s thought when she created “Champagne and Crawfish MS Block Party” in Dallas, Texas to help raise funds to end MS forever. “It’s wonderful to know that a fun afternoon resulted in creating awareness and money to support a cause that is near and dear to our heart.” Shared Carla. “Our mom is living with MS and she is our greatest love and inspiration.” The Champagne and Crawfish MS Block Party took place on April 18, 2015 and was such a success that they ran out of 800 lbs. of crawfish in just less than four hours. Carla and her brothers plan to make this an annual event and continue the perfect mixture of champagne, crawfish, cornhole, food trucks and live music.
Left: Dorothy’s family showing their support at the 2014 Dorothy’s Dash.
“honor her memory, share her example with others who may suffer this terrible disease, and to raise funds to combat multiple sclerosis” ~ Kimberly Cheek
Get Connected
TAB TITLE
CALENDAR
OCTOBER
1 2016 Scholarship Application Window Opens nationalMSsociety.org/scholarship 2-4 Family Discover Camp | Burton, TX | mstexas.org/camp 3-4 Bike MS: Valero Ride to the River, presented by H-E-B San Antonio, TX | bikeMStexas.org 9 Walk MS: Waco: | Waco, TX | walkMS.org 10-11 Bike MS: Dat’s How We Roll: Hammon, LA - McComb, MS bikeMSlouisiana.org 13 Webinar: Fatigue Management in MS | 7 pm CST mscando.org 15 Uncorking the Cure for MS | Tulsa, OK uncorkingthecureforMSok.org 15 Deadline to Apply for an MS Entrepreneur Grant | MSentrepreneurs.org 15 South Central Board of Trustees Nominations Due 24 Walk MS: Austin | Austin, TX | walkMS.org 24 Walk MS: Sugar Land | Sugar Land, TX | walkMS.org 24 Walk MS: The Woodlands | The Woodlands, TX | walkMS.org
NOVEMBER 5-7 Society Leadership Conference | Fort Worth, TX 8 Walk MS: Houston | Houston, TX | walkMS.org 10 Webinar: Managing Your Nutrition & Diet in MS | 7 pm CST mscando.org 13 On the Move Luncheon | Dallas, TX | onthemovetx.org 14 MuckFest MS: Houston | Baytown, TX | muckfestMS.org
Need for a Cure Race DIY Fundraiser: Susan Terr y Bullard, Texas
Above: Susan at her family’s Cactus Speedway in Bullard, Texas where Need for a Cure Race takes place each year. Learn more about DIY Fundraising by visiting nationalMSsociety.org/diy
21 Walk MS: Kemah | Kemah, TX | walkMS.org 26-27 South Central offices closed for Thanksgiving (offices close early Nov. 25)
DECEMBER 24-25 South Central offices closed for Christmas 31 South Central offices close early for New Year’s Eve
Connect with the information, resources and individuals Esti nam il minvel invelig you need to live your best life.qui Torendis learndero more, contact an entibea senvolor o il minvel inpls. me qui MS Navigator at 800-344-4867 or rend contact us at lee.kilborn@nmss.org visit nationalMSsociety.org. Sign up to receive Society emails at nationalMSsociety.org/signup to stay updatedMOVING and connected. TOWARD A WORLD FREE OF MS
31
National MS Society | South Central Region 8111 North Stadium Drive, Suite 100 Houston, TX 77054
“
So many of our DREAMS at first seem IMPOSSIBLE, then they seem
IMPROBABLE,
and then, when we summon THE WILL, they soon become
”
inevitable. - CHRISTOPHER REEVE
MS CONNECTION