FALL 2016 SOUTH CENTRAL CHAPTER
MS CONNECTION NEWSLETTER
EVERYDAY MATTERS: LIVING YOUR BEST LIFE WITH MS
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INSIDE THIS ISSUE GET CONNECTED Calendar p.23
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SCHOLARSHIP: THE FIRST YEAR
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SOUTHERN SMOKE RETURNS FOR A SECOND HELPING
12 16 NEW PARTNERS IN MS CARE
IN PRAISE OF CAREGIVERS
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WELCOME
TOGETHER WE ARE STRONGER
FIND YOUR EVENT THIS FALL As we wrap up another successful year, we reflect on progress made towards our vision to create a world free of MS. It is because of your generous giving and participation in Bike MS, Walk MS, Muckfest MS, On the Move Luncheons, Gala events, DIY fundraisers and more that we are able to fund services, programs and research to change the lives of people affected by MS. MS research remains one of the Society’s highest priorities. To date we have funded $924 million in MS research and leveraged additional funding from other organizations and the government. It’s critical that there are programs and services that connect people to information, resources and each other. It is this comprehensive and focused approach that can propel knowledge, better treatments, health care policies, and new disease management therapies forward, faster. And, there is still more work to be done and you can help! Fall Walk MS events are taking place in communities. Walk MS helps us team up with friends, loved ones and co-workers to change the world for everyone affected by MS. Together, we become a powerful force. Together, we will end MS forever. Visit WalkMS.org to find a walk in your area.
South Texas’ Bike MS: Valero Ride to the River will take place October 1-2 and Louisiana’s Bike MS: Dat’s How We Roll, October 8-9. Register at BikeMS.org and spin your wheels for MS. Have fun, get muddy and raise funds for MS at MuckFest MS in Houston, October 15 and Dallas, October 29. Register at MuckFestMS.org and find yourself in the mud! If you are in the Dallas/Fort Worth area, co-chairs and father-daughter duo, Robbin Raskin Solis and Dr. Philip Raskin, invite you to attend the Dallas On the Move Luncheon on October 14. This year we are celebrating two incredible milestones: the event’s 10 year anniversary, and raising over $1 million. Visit onthemovetx.org for registration and sponsorship opportunities.
Uncorking the Cure for MS, November 3 at Cain’s Ballroom in Tulsa, raises money for Society research initiatives. This fun night features food, wine and fantastic silent- and live-auction items. Special thanks to our generous donors, Rick and Gail Muncrief, Joe and Denise Griffin, and John and Nancy Hawkins, who have together committed to match each of the first $20,000 in gifts we receive through this event. Your donation, in any amount, can go twice as far in helping us create a world free of multiple sclerosis! Visit uncorkingthecureforMSok.org for more information. Give the gift that keeps on giving: a year-end gift to the National MS Society. Your tax-deductible gift moves us closer to a world free of MS by funding breakthrough research and local programs to help people living with MS. You make the change. Thank you for your contributions and involvement over the past year. Together we are stronger!
On the Cover: Everyday Matters, Houston
SOUTH CENTRAL CHAPTER
OFFICE LOCATIONS ARKANSAS
MSarkansas.org @NMSSarkansas
Little Rock 10825 Financial Centre Parkway, Ste. 330 Little Rock, AR | 72211 | 501-663-8104
LOUISIANA
MSlouisiana.org /MSlouisiana |
@NMSSlouisiana
Metairie/New Orleans 4613 Fairfield St. Metairie, LA | 70006 | 504-322-3790
NEW MEXICO
MSnewmexico.org /MSnewmexico |
@MSsocietyNM
Albuquerque 3540 Pan American Fwy NE, Ste. F Albuquerque, NM | 87107 | 505-243-2792
OKLAHOMA
MSoklahoma.org /MSoklahoma |
@Oklahoma_NMSS
Oklahoma City 730 W. Wilshire Blvd., Ste. 103 Oklahoma City, OK | 73116 | 405-488-1300 Tulsa 4606 East 67th St., Ste. 103 Tulsa, OK | 74136 | 918-488-0882
TEXAS
MStexas.org /NMSStexas
@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
Lubbock 3610 22nd St., Ste. 301 Lubbock, TX | 79410 | 888-999-7992 Midland 1031 Andrews Highway, Ste. 304c Midland, TX | 79701 | 432-522-2143
North Texas 2105 Luna Road, Ste. 390 Carrollton, TX | 75006 | 469-619-4700
San Antonio 9830 Colonnade Blvd. Ste. 130 San Antonio, TX | 78230 | 210-694-3200
MS NAVIGATOR® 1-800-344-4867, OPTION 1,
contactusnmss@nmss.org | MSConnection.org
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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SCHOLARSHIP
MS CONNECTION: FALL 2016
THE THE FIRST YEAR FIRST YEAR LIVING WITH MS
BY EMILY TABERS-KWAK BY EMILY TABERS-KWAK
One year ago, I sat at my desk as my dad gave One yearhis ago,triweekly I sat at my desk as my himself injection to dad treatgave his himself his tri-weekly injection to treat his multiple sclerosis. multiple sclerosis.
Today, for everything everything that that has has changed changed in in my my Today, for life the challenges challenges of of life this this past past year, year, many many of of the having aa parent parentwith withMS MS remain. remain. having Now, as I begin my second semester of college
Now, as I begin my second semester of as a Society scholarship recipient, I reflect college, I reflect upon how I looked to upon how I looked forward to forward attending attending. As an Asian-American, I appreciated my first semester. As an Asian-American, how I was invited learning I appreciated how Iinto was ainvited intocommunity a learning that expanded outside our classroom walls. community that expanded outside ourI classroom walls. I shared in organized events shared in organized events where our teams took where transportation our teams took public to public grappletransportation with some of to grapple withthat somepeople of the with challenges that the challenges disabilities people with disabilities experience. may experience. I put these may into context as I Icontemplated put these into context as I contemplated the resilience it takes for someone the resilience it takes for someone with a with a disease like MS to travel around town disease like MS to travel around town for for daily errands. daily errands.
Another key Another key connection connection IImade madewas wasduring duringaa trip to to aa biotech trip biotech lab lab for formy myclass classininbioethics. bioethics. We got to see DNA and learned about We got to see DNA and learned about stem stem cells. I felt like I was on the cutting edge when cells. I felt like I was on the cutting edge when I was able to share something that nobody I was able to share something that nobody else knew: I had just read an article talking else knew: I had supported just read anbyarticle talking about research the Society about research by the Society where they foundsupported that by blocking a molecule where theyin found that stem by blocking molecule present specific cells, athey may present in specific stem cells, they may be able to be able to stimulate myelin repair stimulate myelin repair (nationalMSsociety.org/ (nationalMSsociety.org/myelinnews2015). It was also relevant dad had just myelinnews2015). It because was also my relevant because had an MRI and, afterward, we had talked about the myelin sheath and how wonderful it would be if it could be repaired.
This year, I learned to integrate academics
Emily Tabers-Kwak with her dad, John Kwak, who was diagnosed with MS in 2010.
EMILY TABERS-KWAK WITH HER DAD, JOHN KWAK, WHO WAS DIAGNOSED WITH MS IN 2010.
“I NOT THIS myWOULD dad had just hadHAVE an MRIMADE and, afterward, VITAL CONNECTION SOsheath EARLY we had talked about the myelin and IN how wonderful it wouldCAREER be if it could be repaired. MY COLLEGE WITHOUT THE SUPPORT OF A SOCIETY This year, I learned to integrate academics and SCHOLARSHIP.” community service within the context of the
world in which we live. I would not have made this vital connection so early in my college career and community service within the context of without of live. a Society the worldthe in support which we I wouldscholarship. not have made vital connection early in Imy Since I this love literature and am anso avid reader, am college career towithout support of a looking forward declaringthe my major in English Society scholarship. and hope to become a head librarian someday. Despite the literature challenges and thatam MSanhas Since I love avidpresented reader, mylooking family, the scholarship has allowed me to Itoam forward to declaring my major in English and hope to become a head grow and start achieving my life goals. librarian someday.
To learnthe more, visit nationalMSsociety.org/ Despite challenges that MS has presented scholarship. n to my family, the scholarship has allowed me to grow and start achieving my life goals. ■
Society Scholar Emily Tabers-Kwak is currently Edgewood College Learn more attending about resources for students living in Madison, with MS andWisconsin. the 2017 scholarship program, including application details, timeline, qualifications and guidelines, by visiting nationalMSsociety.org/scholarship.
SCHOLARSHIPS
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From the National MS Society
NATIONALMSSOCIETY.ORG | 1-800-344-4867
EDUCATIONAL
nationalMSsociety.org/scholarship
Application deadline: January XX, 2017
Because MS shouldn’t stand in the way of an education
SCHOLARSHIPS From the National MS Society nationalMSsociety.org/scholarship
Application deadline:January January 18, Application deadline: XX,2017 2017
Because MS shouldn’t stand in the way of an education
IMANI, SCHOLARSHIP RECIPIENT DIAGNOSED IN 2006
STAND OUT and accelerate your idea into action! The MS Entrepreneurs grant program seeks to fund creative projects
dedicated to improving the lives of people living with MS. IMANI, SCHOLARSHIP RECIPIENT DIAGNOSED IN 2006
Visit MSEntrepreneurs.org to learn more and complete your application by October 15, 2016.
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GIVING
MS CONNECTION: FALL 2016 dream team of Southern chefs and pit makers are participating. Chris will once again turn Underbelly, Hay Merchant and Blacksmith into a massive street party, with the fundraising goal of $200,000.
SOUTHERN SMOKE RETURNS FOR A SECOND HELPING The pits are fired up and ready as the second annual Southern Smoke kicks off on November 6. New and returning chefs are cooking up delicious eats and good times, while raising funds to create a world free of MS.
Chris Shepherd created Southern Smoke to honor his friend of nine years and sommelier, Antonio Gianola, who lives with MS. Last year, the inaugural event brought some of the best Southern chefs and pit masters to Houston, raising nearly $184,000 for the National MS Society. It’s a particular point of pride for Chris that the restaurant industry can have such an impact—using its powers for good and taking care of their own. On November 6, Chris, along with the HOUBBQ Collective, will host the second annual event. A
Antonio Gianola received his diagnosis of MS in 2014 while training for the BP MS 150 Houston to Austin ride. His sister had received the same diagnosis just four years earlier. Antonio is thankful for the support of the restaurant industry, bringing light to this disease and raising critical funds for research. According to Antonio, “This is a disease I didn’t ask for or want. However, if I am able to help others with MS and bring awareness, I will proudly be their voice. My sister and I, along with thousands of others, have MS; MS doesn’t have us.”
The 2016 Southern Smoke Lineup includes: Aaron Franklin:
Austin, Texas-based barbecue cook, restaurant owner, educator and writer. Aaron is a self-taught bbq expert, who has quickly risen to be one of the most wellknown pit bosses in the barbecue world. He never cuts corners on choosing quality meats and spending the time it really takes to make the best bbq in the country—even if it means losing sleep. In 2015, Aaron won the coveted James Beard award for “Best Chef: Southwest.” Rodney Scott:
Rodney Scott is a secondgeneration owner of Scott’s Bar-B-Que, which opened in Hemingway, South Carolina in 1972. He cooks whole hog over custom wood-burning pits, a technique that garnered Scott’s
NATIONALMSSOCIETY.ORG | 1-800-344-4867 Bar-B-Que an American Treasures Award, a Grand Masters award at Meatopia New York City and inspired an oral history project by the Southern Foodways Alliance. Ashley Christensen:
Ashley Christensen is the chef/ owner of Poole’s Diner, Beasley’s Chicken + Honey, Chuck’s, Fox Liquor Bar, Joule Coffee + Table, Death & Taxes and Bridge Club, all located in downtown Raleigh, North Carolina. Ashley’s philosophy of bright, fresh flavors and locally grown, seasonal ingredients has garnered local and national acclaim. She is involved in a number of charities, including the Frankie Lemmon Foundation, the Southern Foodways Alliance and Share Our Strength. In 2014, Ashley was awarded the James Beard Award for “Best Chef: Southeast.” Her first cookbook, Poole’s: Recipes and Stories from a Modern Diner, was just released. Stephen Stryjewski:
Winner of the 2011 James Beard Foundation “Best Chef: South,” Stephen Stryjewski is Chef/Partner of New Orleans’ award winning restaurants Cochon, Cochon Butcher, Pêche Seafood Grill, and Calcasieu, a private event facility. In 2007, Cochon was named a “Best New Restaurant” finalist by the James Beard Foundation, and in 2014, Pêche Seafood Grill won the James Beard Foundation award in the same category. Cochon was recently named one of the 20 most important restaurants in America by Bon Appétit. In 2015, Chefs Stryjewski and Business partner Donald Link, created the Link Stryjewski Foundation to address the persistent cycle of violence and poverty, as well as the lack of quality education and job training opportunities available to young people in New Orleans.
Ryan Prewitt:
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Ryan Prewitt began his culinary career in the farmer’s markets of San Francisco. After working for Chefs Robert Cubberly and Alicia Jenish at Le Petite Robert Bistro, he moved to New Orleans to work with Chef Donald Link at Herbsaint. Ryan then became Chef de Cuisine in 2009. He subsequently moved on to oversee culinary operations at Link Restaurant Group as Executive Chef for the company. His experience and techniques led him to open Pêche Seafood Grill. Ryan received the James Beard Foundation Award for “Best Chef: South” in May 2014, the same year Pêche earned the James Beard Award for Best New Restaurant. Tandy Wilson:
Tandy opened City House in December of 2007 in Nashville’s historic Germantown. Tandy showcases his love of fresh, local ingredients while bridging the gap between authentic Italian cuisine and down-home Southern cooking. After being nominated as a semi-finalist for “Best Chef: Southeast” in 2013, 2014 and 2015, he took home the honor in 2016. His name regularly appears in Bon Appetit and he was named “Best New Chef in the Southeast” by Food and Wine magazine.
HOUBBQ Collective: The HOUBBQ Collective, a cooking collaborative of Houston chefs that are not professional pit masters, will be back. The group, Seth Siegel-Gardner and Terrence Gallivan of The Pass and Provisions, Ryan Pera of Coltivare, Oxheart’s Justin Yu and Chris Shepherd, made their debut at last year’s Southern Smoke. n Visit SouthernSmoke.org for the beefy details on tickets and additional information.
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COVER STORY
MS CONNECTION: FALL 2016
EVERYDAY
MATTERS
LIVING YOUR BEST LIFE
Everyone has their own idea of their best life. For people living with multiple sclerosis, the idea of that “best life” can change due to the challenges of having a chronic, unpredictable and lifelong disease.
shift from focusing on the negative to looking
The Everyday Matters program aims to increase participants’ knowledge of positive psychology principles and develop concrete plans for implementing them in their lives. Videos, presentations, handouts and discussions are utilized to help participants
Results show the program works. Initially launched in 2012 as a five-week program, the first participants reported significant improvements in satisfaction with life, confidence in their management of MS symptoms, and improved outlook.
Put positive psychology to work inatyour life! the positive.
In 2012, the National Multiple Sclerosis Society launched the Everyday Matters program, encouraging participants to live their best life with MS by putting positive psychology to work in their life. Positive psychology focuses on growth and well-being. It focuses on what an individual is rather than what he or she isn’t. At its core, positive psychology is the belief that people actively seek and inherently desire happiness. How this happiness plays out is different from person to person.
The program also utilizes Shawn Achor’s book, “The Happiness Advantage.” Conventional wisdom holds that if we work hard we will be more successful, and if we are more successful, then we’ll be happy. If we can just find that great job, win that next promotion, lose those five pounds, happiness will follow. Shawn Achor’s book explains how discoveries in the field of positive psychology have shown that this formula is actually backwards: Happiness fuels success, not the other way around. When we are positive, our brains become more engaged, creative, motivated, energetic, productive and resilient.
NATIONALMSSOCIETY.ORG | 1-800-344-4867 Participants cited the in-person program’s most beneficial aspects as: • Creating community with like-minded people with similar challenges; • Learning how not to fall into ruts and how to take charge of their own happiness; and
• Learning how to “let it be,” and focus on the good things that happen daily or weekly.
Understanding the impact that this program can have on participants, the South Central Chapter expanded the program offerings this year, adapting it to different formats to accommodate varying demographics and schedules. It was offered in a six-week series in Houston, Texas, as a one-day program in Arkansas and Louisiana, and in Spanish in El Paso, Texas. Coming this fall, it will be part of Oklahoma’s Getaway Weekend, a bi-annual weekend retreat that helps individuals living with MS and their
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carepartner connect with the MS community in a fun and informative getaway at POSTOAK Lodge in Tulsa. This year’s event, taking place October 14-16, is introducing a new wellness-infused format under the name
“HAPPINESS FUELS SUCCESS, NOT THE OTHER WAY AROUND. WHEN WE ARE POSITIVE, OUR BRAINS BECOME MORE ENGAGED, CREATIVE, MOTIVATED, ENERGETIC, PRODUCTIVE AND RESILIENT.”
“RETREAT + RECHARGE: A Getaway Weekend.” In addition to traditional games and activities, participants are able to choose between two wellness program tracks, and the Everyday Matters program is one of the tracks being offered. Whatever the format, the impact remains the same: participants come out of this with
Pictured above: Participants in the one-day class held in Louisiana celebrate at the end of the session. Opposite page: Participants from the Houston six-week program (left) and the El Paso Spanish class (right) complete the Everyday Matters curriculum.
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COVER STORY
stronger relationships and a positive shift in how they see their circumstances. MAKING STRONG CONNECTIONS
In the six-week program, attendees commit to attending in-depth weekly classes to discuss and understand the principles of positive psychology and how to apply them to their life. One benefit of meeting weekly is the increased sense of community and the chance to develop strong bonds with others in the program, hopefully leading to continued interaction and support after the program concludes. Some who attended the Houston program had been involved with the Society for years, while others, like Denise Jones, found the program to be eye-opening about the need for community. “Sixteen years ago I was diagnosed with MS, and life as I knew it changed forever,” Denise shared. “I was shocked by the diagnosis, denial set in fast and fear was not far behind. After receiving my diagnosis, my neurologist suggested that I go by the National MS Society office for some additional information about MS, so I did. I picked up brochures about MS and was given a list of support groups that I might be interested in attending. I took the material home, read it, threw it in the trash and did not enter the doors of the Society again for another 16 years. I wanted nothing to do with this disease and was quite confident that I could do it on my own. “This was until I received a notice that Everyday Matters, a wellness program, was being offered by the Society. I checked my calendar, cleared my schedule and signed up immediately. I did it so fast and things fell into place so easy that I felt it was just meant to be. I learned almost immediately through this program that I had been missing out on something very significant to living each day with MS: the support of others who truly
MS CONNECTION: FALL 2016 understand what living life with MS is like. I also learned that the Society is a wonderful, amazing organization filled with staff and volunteers who are all working tirelessly towards a world free of MS. I met 12 of the most courageous, kind, fun, caring and beautiful people who live everyday with MS just like me. We laughed, we cried, we encouraged and we affirmed each other. I had never in 16 years believed that I needed such a group.”
Denise said that this program has helped her understand life with MS through a new lens. “Sometimes we focus so much on our losses with this disease that we become blind to the opportunities and possibilities that are right in front of us. There is always something to be thankful for even in the midst of a difficult and challenging day. And as someone told me, ‘Most of the time we can do more than we think we can.’ It is just a matter of perspective.” Following the program, Denise took her first step in becoming more involved with the National MS Society by volunteering at the BP MS 150, and she’s looking forward to seeing what the future holds. CADA DIA CUENTA: REACHING THE SPANISH-SPEAKING COMMUNITY
The Everyday Matters program was offered in Spanish for the first time ever when a oneday program was held in El Paso this summer. The program welcomed eight attendees for a personal, small group discussion, allowing for stronger bonds and a better understanding of the material. Kathya Montiel, originally from Mexico City, said this was her first interaction with the National MS Society. “Initially what attracted me to the program was a need for a sense of belonging and the opportunity to meet people living with MS who spoke Spanish. I moved to El Paso about two years ago, and it has been
NATIONALMSSOCIETY.ORG | 1-800-344-4867 difficult to find programs solely dedicated to a Spanish-speaking audience.
“Latinos and Hispanics face the same challenges as any other ethnicities. As a result of not having more programs in Spanish available, we run the risk of many Latinos and Hispanics not having the information to educate themselves about the disease and the issues related to it. They are missing valuable resources that can have a positive impact in their lives.”
Kahtya said she was able to walk away with a life-impacting experience. “One of the big challenges that I face daily is the mental struggle associated with the disease. I often limit myself because I allow the disease to influence my thought process in terms of my future well-being in health, education and employment. Sometimes my cognitive issues frustrate me to the point where I want to stop attending school. It affects my ability to be self-sufficient.
“Through this program, I was able to relate and change my perspective regarding the disease and how it impacts me. There are people in El Paso who have been impacted by the disease more adversely than me, who continue to be positive and don’t allow the disease to stop their lives. Now I know there are people and resources in El Paso that can help someone like me.” ____________________________________________________ To learn more about this program or to bring positive psychology into your life through the self-help toolkit, visit nationalMSsociety.com/everydaymatters
Be Happy. There are a number of proven ways to raise levels of happiness. Here are a few ways that are discussed in the Everyday Matters program: • Meditation • Three gratitudes • Journaling • Finding something to look forward to • Committing conscious acts of kindness • Infusing positivity into your surroundings • Exercising • Spending money, but not on “stuff” • Using a signature strength
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MEDICINE
MS CONNECTION: FALL 2016
SOUTH CENTRAL CHAPTER
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 National MS Society is proud to announce the following new Partners in MS Care:
FINDING THE RIGHT PROVIDER AND LEARNING TO ADVOCATE FOR THE CARE YOU NEED IS IMPORTANT.
Melissa Dufrene, PsyD MENTAL HEALTH: NEW ORLEANS, LA Dr. Dufrene is a licensed clinical psychologist. She earned her doctorate in clinical psychology from The School of Professional Psychology at Forest Institute in Springfield, Missouri and trained at Rogers Memorial Hospital, a nationally recognized residential and behavioral health hospital. She is currently licensed in the State of Louisiana as a Clinical Psychologist and leads the New Orleans Algiers Neurobehavioral Resource’s initiatives surrounding women’s therapy, assessment, and behavioral needs. She works with Dr. Michael Chafetz, a current mental health Partner in MS Care, and is focused on treating more patients with MS, as well as starting therapy groups for women with MS. Dr. Dufrene also serves as an Adjunct Professor at the Chicago School of Professional Psychology at Xavier University of Louisiana.
April Erwin, MD NEUROLOGY: BATON ROUGE, LA
Dr. Erwin is a boardcertified neurologist. She completed her medical training which included her internship, neurology residency and fellowship in multiple sclerosis at Georgetown University Hospital in Washington, D.C. While a neurology resident at Georgetown, Dr. Erwin served as Chief Resident from 2010-2011. Dr. Erwin
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 joined The NeuroMedical Center in 2012 and has since earned recognition for her work in educating the community about multiple sclerosis. As an active participant in clinical trials research, she is the author of multiple articles in medical and scientific journals about MS and has also served as the primary or sub-primary investigator for 10 MS clinical trials. She serves on advisory boards and participates in speaking events nationwide, informing the public about advancements in multiple sclerosis care.
Asher Imam, D.O. (Center)
Asher Imam, D.O. NEUROLOGY: SOUTHLAKE, TX Dr. Imam received his Doctor of Osteopathic Medicine from the University of North Texas Health Science Center at Fort Worth and is the president and founder of Southlake Neurology and Neurophysiology Clinic. He completed his internal medicine internship and residency in neurology at the Medical College of Georgia. He is board-certified in neurology, vascular neurology, clinical neurophysiology and sleep medicine by the American Board of Psychiatry and Neurology. Dr. Imam has been working with multiple sclerosis patients for more than 20 years and regularly attends CME conferences and reviews MS journals to keep abreast on the changes in the disease management. Additionally, he is an affiliate of Baylor Grapevine Hospital for Acute Care and Baylor Grapevine Rehabilitation.
ED IN 2015; LYNNE
OS HAYLEY (L), DIAGN
(R), DIAGNOSED
IN 2008
Walk MS helps us team up with friends, loved ones and co-workers to raise funds that drive groundbreaking MS research, provide life-changing programs and guarantee a supportive community for those who need it most. Together, we will end MS forever. REGISTER TODAY! WALKMS.ORG 1-800-344-4867
THANK YOU TO OUR PREMIER NATIONAL SPONSOR
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MEDICINE
Wael Richeh, MD NEUROLOGY: SAN ANGELO, TX Dr. Richeh is a boardcertified neurologist completing his first year as an attending physician and neurologist at Shannon Clinic, Brain and Spine Institute in San Angelo, Texas. He attended medical school at the University of Damascus, Syria. He completed his neurology residency at Pitie-Salpetriere University Hospital in Paris, France and at Louisiana State University (LSU) in New Orleans, Louisiana under Dr. Amy Gutierrez and Dr. Jesus Lovera. While at LSU- New Orleans he also completed his clinical neurophysiology fellowship. Dr. Richeh devotes his clinical practice and research efforts to the diagnosis and treatment of neurological systems disorders, and his research interests are in MS and neuro-immunology. University of Louisiana.
David Salisbury, PsyD MENTAL HEALTH: DALLAS, TX
Dr. Salisbury is a board-certified clinical neuropsychologist who provides outpatient consultation/ liaison services for Baylor Institute for Rehabilitation (BIR). He received his doctoral degree in clinical psychology from Wright State University in Dayton, Ohio and a neuropsychology internship at the VA Medical Center in Cincinnati, Ohio. He subsequently completed a NIH-funded fellowship at the University of Alabama at Birmingham School of Medicine with a focus on neuropsychology, rehabilitation and neurology populations.
MS CONNECTION: FALL 2016 Dr. Salisbury has specialized in the evaluation and treatment of adult patients with neurological disorders for over a decade. This includes his work as co-director of the Multiple Sclerosis Center of Rehabilitation and Treatment (MSCoRT) at Baylor Institute for Rehabilitation. The Center treats patients with various demyelinating conditions in the Dallas/ Fort Worth region and has recently partnered with the National MS Society for an upcoming patient-centered educational series. In addition to clinical duties, Dr. Salisbury remains active in teaching, student training and research.
Supriya Thirunarayanan (Thiru), MD NEUROLOGY: PLANO, TX Dr. Thirunarayanan (called Dr. Thiru by all her colleagues and patients) joined Texas Institute for Neurological Disorders (TIND) in 2014 and is certified by the American Board of Psychiatry and Neurology. Previously she practiced in Plano, Texas for several years before moving her practice to TIND. Dr. Thiru attended medical school at Sri Devaraj Urs Medical College in Kolar, India and held internships at Madras Medical College in Chennai, India and the University of Texas Medical Branch-Austin. Additionally, she completed her neurology residency and neurophysiology fellowship at the University of Wisconsin Hospital and Clinics in Madison, Wisconsin. She works closely with Dr. Bharathy Sundaram, a current Partner in MS Care, in the treatment and management of MS patients. She also has particular interest in neurophysiological studies, including EMG and NCV as well as EEGs and headaches.
Finding the right partner 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.
Together in 2016, we accomplished so much: More than $50 million was invested in MS research to stop MS in its tracks, restore lost function, and end MS forever. Relationships were forged with more than 270 Partners in MS Care, ensuring individuals affected by MS have access to quality healthcare, no matter where they live; 1,129 self-help groups and 456 online community groups on MSconnection.org engaged individuals living with MS to help them live their best life; 4,546 letters were sent to the Senate by MS Activists as part of a successful advocacy effort to protect MS research through the Congressionally Directed Medical Research Program(CDMRP). Additionally, MS Activists helped pass 46 bills in state legislatures across the country, including a bill in Louisiana that protects access to medication during an insurance appeal process. The FDA approved Zinbryta (daclizumab) as a therapy for adults with relapsing forms of MS and granted Ocrelizumab the “Breakthrough Therapy Designation” for primary-progressive MS.
Don’t stop now. Your year-end donation can help us make
an even bigger impact in 2017. Visit nationalMSsociety.org or contact Shannon Nelson, shannon.nelson@nmss.org, 469-619-4704.
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LIVING WITH MS
MS CONNECTION: FALL 2016
IN PRAISE OF IN PRAISE OF CAREGIVERS LIVING WITH MS
CAREGIVERS
BY JOE SALACKI
My and I will celebrate 23 years BYwife, JOE Becky, SALACKI of marriage this month. We will reminisce through My wife,memories Becky, andofI our will steamy celebrateromance 23 years and the early years of our relationship. of marriage this month. We will reminisce We will not celebrate the numbness in my through memories of our steamy romance and right hand that has been there a long time, the early years of our relationship. We will not nor the tight feeling around my torso that celebrateinthat in my handthat that started thenumbness late 1990s, nor right the fact been there Ihas stumble a lot. a long time, nor the tight feeling around my torso that started in the late 1990s, I saw the first doctor in the spring of 2000. Not nor the fact that I stumble a lot. quite two years later, in 2002, I was diagnosed with multiple sclerosis. I suspected that I had I saw the first doctor in the spring of 2000. Not the progressive type, and that suspicion was quite two years 2002, I was diagnosed confirmed. This later, is notinrelapsing. There is no with multiple sclerosis. I suspected treatment. I’m not getting better. that I had the progressive type, and that suspicion was In fact, I will get worse as time goes on. I told confirmed. This is not relapsing-remitting MS. Becky to go have a life but she wouldn’t hear is no she treatment. I’m not better. ofThere it. I know was hurting thengetting and I know
Joe JOE Salacki SALACKIwith WITH his HIS wife WIFE and AND caregiver, CAREGIVER,Becky BECKY Becky works downtown; her commute retirement community that provides endless is around 75 miles round-trip. We get opportunity to positively impact the livesup of together at 5 a.m. because I need her help 100 or so seniors. I know all of our neighbors showering and dressing. We spend a few by name. I feel safe and secure here, and I know minutes together before she hits the morning that isata7load off of Becky’s mind. rush or 7:30 a.m. She goes to work in the busy, high-stress corporate world and comes Becky works downtown; her commute is home 11 hours later. Then it’s time to fix around She 75 can’t mileseven round-trip. We because get up dinner. eat in peace together 5 me. a.m.If because I need hera help she has toat feed we’re lucky, we get few showering and dressing. moments of downtime before it all starts over We spend a few again the next day. minutes
“BECKY IS together before she hits In fact, I will get worse as time goes on. I told the morning rush at 7 or SO DEDICATED Becky to go have a life but she wouldn’t hear 7:30 a.m. She goes to work “BECKY IS SO DEDICATED AND SO TIRELESSLY GIVING.” of it. I know she was hurting then and I know AND SO in the busy, high-stress it hurts her to see me struggle now, but she is corporate worldare andbusy comes itstrong. hurts her to see now, but she the is The weekends too because there’s When I gotme mystruggle first assistive device, TIRELESSLY strong. When I got my first assistive device, home 11 hours later. Then always something to do. We do what we have mobility was liberating but my confidence and the mobility was liberating, but my confidence to do, and we hope there’s time left over to it’s time to fix dinner. She GIVING.” self-image were really affected. Her strength and self-image were really affected. Her relax enjoy together. We enjoy can’t and even eatsome in fun peace helped me through that first trip. She opened strength helped me through that first trip. She music, friends restaurants becausegood she has to feedand me.good If we’re lucky, we the doors cleared the obstacles as she still opened theand doors and cleared the obstacles as as we can. And we both love theit St. getoften a fewasmoments of downtime before all doesstill fordoes me today. she for me today. Louis Cardinals baseball team. We don’t miss starts over again the next day. a game on TV — unless we are there in person An accessible home, a specially equipped van, An accessible home, a specially equipped van, for to 15 games year, thanks to Becky’s a custom computer work station at home, a The10weekends areeach busy too because there’s a custom computer work station at home, a connections. And she fundraises! Becky shower chair and a ceiling track system have always something to do. We do what wehas have shower chair and a ceiling track system have raised more than $100,000 for the Gateway become part of our daily lives. We live in a to do, and we hope there’s time left over to become part of our daily We live in a Area Challenge Walk MS® and has walked retirement community thatlives. provides endless opportunity to positively impact the lives of 100 or so seniors. I know all of our neighbors by name. I feel safe and secure here, and I know that is a load off of Becky’s mind.
500 miles in 10 consecutive events.
I know she gets tired. I can see it in her face and hear it in her voice. It breaks my heart. It takes a special person to care for someone
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with MS. I am needy. I hate it. But Becky never, never, never makes me feel like a burden. She cares for me like no one else could. Sometimes I feel guilty. I wonder if I could do the same things for her if the situation was reversed. Becky is so dedicated and so tirelessly giving.
“IF YOU HAVE A CAREGIVER, BE SURE TO THANK THEM AND TELL THEM — OFTEN — HOW MUCH THEY MEAN TO YOU.”
Caregivers are special people, and Becky is a special caregiver. Just one last thought. Becky was in charge of a big corporate conference in Hawaii this spring.
She could have buried herself in her work in the tropical paradise, but that’s not my wife. Instead, she talked me into going. Imagine the challenges of getting me to Hawaii! Well, she did it. Not only did she run the conference flawlessly, she made sure that I had an incredible experience as well. I can’t imagine life without my Becky. I tell her so all the time. If you have a caregiver, be sure to thank them and tell them — often — how much they mean to you. Not just this month, but as often as you can. ■
WE ARE ALL ACTIVISTS. AN MS ACTIVIST: Stays informed and learns about critical policies affecting people living with MS. • Shares their personal story. • Boldly asks public officials for support. • Joins with other MS activists in the community. The National Multiple Sclerosis Society relentlessly advocates for local, state and federal policies to benefit people impacted by MS.
November is national caregivers month While caregivers, also known as care partners, play a valuable role in the lives of people with MS every day, now is a great time to tell them how much you appreciate them. For more ideas on how to celebrate the caregiver in your life, visit nationalMSsociety.org/carepartners.
JOIN THE MS ACTIVIST NETWORK. nationalMSsociety.org/msactivist
18 INVESTING IN THE FUTURE RESEARCH
The National Multiple Sclerosis Society has committed $25.3 million to 60 new MS research projects that hold promise toward stopping MS, restoring lost function and ending MS forever. In addition, funding for one-year grants for 11 new pilot projects will allow MS researchers to investigate high-risk, high-potential strategies to understand, treat and manage MS. Studies that delve into genetic and environmental risk factors for MS include how vitamin D might protect individuals from developing the disease and how the influence of genes on immune cell activity might be a clue to stopping or preventing MS. Other studies are focusing on a range of strategies to stop MS progression or restore function. Following is a sampling of these promising projects. THE WHY OF PROGRESSIVE MS
Despite advances that have produced diseasemodifying therapies for relapsing forms of MS, treatments for progressive MS have remained elusive. To address that gap, the Society is supporting a large-scale study, SUMMIT (Serially Unified Multicenter Multiple Sclerosis Investigation), to leverage extensive information from longterm monitoring of more than 1,000 people with MS to understand factors that lead to progression. The five-year study will bring together two MS Centers of Excellence, Harvard’s Brigham
MS CONNECTION: FALL 2016
and Women’s Hospital and the University of California, San Francisco, to develop a database of invaluable information that will be open to researchers anywhere in the world. Another study, led by Dr. Claudia Lucchinetti and Charles Howe, PhD, at the Mayo Clinic and Foundation in Rochester, Minnesota, will conduct “metabolic profiling” of people with MS in order to better understand the role that metabolic stress, which spans a variety of problems in cells, including energy deficits and failure to recycle unneeded proteins, may play in MS progression. An interesting study at Washington University School of Medicine in St. Louis explores the role that sex differences may play in the transition of relapsing-remitting MS, the most common form of the disease in women, to secondary progressive MS. Researchers have found that the entry of harmful immune cells into the brain during MS is partially mediated by a molecule called S1PR2, which occurs in high levels in women with MS. Blocking S1PR2 in mice with an MS-like disease appears to improve disease severity in female, but not male, mice. RESTORING LOSSES
Research dedicated to restoring what’s been lost in MS focuses on understanding how nerves and their protective myelin coating normally work, how we can repair those critical tissues, and how restoring function
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NATIONALMSSOCIETY.ORG | 1-800-344-4867 may also include new strategies to manage common issues of MS. One study at John Hopkins University is focusing on a promising compound that may improve cognitive function in MS. The compound, a molecule called GCPII, was shown in mouse studies to improve cognitive performance, but only in very high doses administered via injection. Now, with the help of a drug discovery team with expertise in GCPII pharmacology, investigators are synthesizing and evaluating 20 to 30 new compounds to try to create an oral version. If they are successful, the compound could move to clinical trials to prove its safety and benefits. Another study at St. Joseph’s Hospital and Medical Center in Phoenix hopes to follow how a type of immune cell called a Natural Killer (NK) cell interacts with brain cells, possibly interfering with the repair process. These cells have been found to remain in the brains of people of MS and in mice with an MS-like disease; eliminating NK cells in the latter was found to significantly improve their recovery.
Recent research has also suggested that some individuals with MS have difficulty in “emotional processing” — specifically, recognizing emotions from people’s facial expressions. A team at Kessler Foundation Research Center in West Orange, New Jersey, is examining the effects of an intervention aimed at improving emotional processing. The intervention includes interactive training and a computer program to help improve facial affect recognition. ■ To learn more about MS research and stay up to date on current studies, visit nationalMSsociety.org/research.
LIVING WITH MS
Restoring function may also include new lifestyle and wellness approaches. Studies focusing on these areas include an international multicenter trial of an online program to reduce MS-related depression. While depression is a common symptom of MS, MS symptoms such as fatigue, cognitive challenges and mobility issues can make it difficult to attend in-person therapy sessions. The online program, called Deprexis, can be used in an individual’s home, eliminating the need for travel. Preliminary results have already indicated that the program may reduce depression in MS and researchers are now conducting a phase 3 trial at five MS centers in the U.S. and Germany in 400 people with MS.
DALLAS | Saturday, October 29, 2016 Southfork Ranch, 3700 Hogge Rd., Parker, TX 75002
REGISTER AT MUCKFESTMS.COM 100% of fundraising dollars go to the National MS Society.
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MS CONNECTION: FALL 2016 10/1- BIKE MS: VALERO RIDE TO THE RIVER, PRESENTED BY H-E-B 10/2-
San Antonio to New Braunfels, TX bikeMStexas.org
10/8- BIKE MS: DAT’S HOW WE ROLL, PRESENTED BY PEOPLES HEALTH 10/9Hammond, LA to McComb, MS and back bikeMSlouisiana.org
10/11- WEBINAR:
Together in MS: Supporting Family and Friends of People with MS nationalMSsociety.org/telelearning
10/14- ON THE MOVE LUNCHEON Dallas, TX
onthemovetx.org
10/14- RETREAT + RECHARGE: A GETAWAY WEEKEND 10/16 Tulsa, OK
MSoklahoma.org
10/15- MS ENTREPRENEUR GRANT APPLICATION DEADLINE MSentrepreneurs.org
GET CONNECTED
10/15- MUCKFEST MS: HOUSTON Houston, TX
CALENDAR
10/29- MUCKFEST MS: DALLAS
OCTOBER
10/29- WALK MS: AUSTIN
9/30- FAMILY DISCOVERY CAMP MStexas.org 10/2 10/1- SCHOLARSHIP APPLICATION
WINDOW OPENS THIS MONTH nationalMSsociety.org/scholarship
10/1- WALK MS: WACO Waco, TX
walkMS.org
muckfestMS.org
Dallas, TX
muckfestMS.org
Austin, TX walkMS.org
10/29- WALK MS: SUGAR LAND Sugar Land, TX walkMS.org
10/29- WALK MS: THE WOODLANDS The Woodlands, TX walkMS.org
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NOVEMBER 11/3- UNCORKING THE CURE FOR MS Tulsa, OK uncorkingthecureforMSok.org
11/6- WALK MS: HOUSTON Houston, TX walkMS.org
11/8- WEBINAR:
Diet and MS: A Neurologist’s Perspective
nationalMSsociety.org/telelearning
11/19- WALK MS: KEMAH Kemah, TX walkMS.org
11/23- OFFICE CLOSURE South Central offices close at noon for Thanksgiving
11/24- OFFICE CLOSURE South Central offices closed 11/25 for Thanksgiving
DECEMBER 12/13- WEBINAR:
Importance of Sleep
nationalMSsociety.org/telelearning
12/23- OFFICE CLOSURE South Central offices closed for 12/26 Christmas 12/30 OFFICE CLOSURE
South Central offices close at noon for New Years
Connect with the information, resources and individuals you need to live your best life. To learn more, contact an MS Navigator at 800-344-4867 or visit nationalMSsociety. org. Sign up to receive Society emails at nationalMSsociety.org/signup to stay updated and connected.
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Participating in your employer’s charitable giving campaign is an easy way to have impact. Simply designate the amount you’d like to contribute, and your gift will be automatically deducted from your paycheck and donated. Remember to look for the National MS Society under Community Health Charities, or select CFC# 11409 in the Combined Federal Campaign.
KAREN (LEFT) DIAGNOSED IN 2007
To give, select CFC# 11409.