Fall 2012 MSConnection: Lone Star
The Fall 2012 edition of MSConnection: Lone Star, a quarterly magazine of the National MS Society for Texans and everyone impacted by multiple sclerosis.
Moving Toward A World Free of MS FALL 2012 Back To School! Society Scholarships Support Students Affected by MS In this issue: Big Honor for San Antonio Activists Play Crucial Role Keeping Mobile If You or Someone You Know Has MS Studies show that early and ongoing treatment with an FDA-approved therapy can The Official Magazine of the National Multiple Sclerosis Society: Lone Star The official magazine of the National Multiple Sclerosis Society: Lone Star Amarillo • Austin • Dallas • Fort Worth • Houston • Lubbock • Midland • San Antonio 1-800-344-4867 reduce future disease activity Board of Trustees Chairman Brad Robbins and improve quality of life for Houston, TEXAS many people with multiple sclerosis. Talk to your health care professional or contact the National MS Society at nationalMSsociety.org or 1-800-344-4867 to learn about ways to help manage multiple sclerosis and about current research that may one day reveal a cure. Board of Trustees Chairman Elect ERNEST JOHNSON Houston, TEXAS Treasurer DON McCormack MIDLAND, TEXAS Secretary DAVID CARDER TULSA, OKLAHOMA Regional Executive Vice President Mark Neagli MSConnection Editor James Black © 2012 National Multiple Sclerosis Society: Lone Star The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned. MS STOPS PEOPLE FROM MOVING WE EXIST TO MAKE SURE IT DOESN’T. JOIN THE MOVEMENT Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS. Fall 2012 Volume 6 • Issue 4 Nominees for Board of Trustees Now Being Accepted Individuals interested in being considered for nomination to the Board of Trustees should submit a letter of interest and a biography, along with full name, mailing address, email address and phone number. The Official Magazine of the National Multiple Sclerosis Society: Lone Star Walk and Bike Events Round Out 2012 and Gear Up for 2013 It’s not too late to join, donate or volunteer for our fall Bike MS and Walk MS events. Thousands of people impacted by multiple sclerosis take part in these annual activities to raise both awareness of the disease and money to fuel MS research. In addition, we’re preparing for our Spring 2013 Bike MS and Walk MS events throughout the Lone Star State. Visit bikeMStexas.org and walkMStexas.org for details and to support a 2012 or 2013 event near you. Nominees will be notified of board member expectations, responsibilities, and fiduciary and time commitments. Final candidates will be interviewed by a member of the Governance Committee. Nominations for the Board of Trustees must be submitted by Nov. 15, 2012 to: Volunteer leaders from the National MS Society’s 2012 BP MS 150 were recognized at a June awards dinner underwritten by BP in Houston. Congratulations to Camellia Jacks (pictured, left, with Mindy LeBlanc from the Society’s Houston office). Camellia was the recipient of the 2012 BP MS 150 Stafford Campbell Volunteer of the Year award. The Society thanks all our dedicated volunteers and committee members for supporting the MS mission. Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054 Offices Closed for Upcoming Holidays National MS Society offices will be closed on the following days: Labor Day - Friday, Aug. 31 (half-day) - Monday, Sept. 3 Thanksgiving - Wednesday, Nov. 21(half-day) - Thursday, Nov. 22 - Friday, Nov. 23 Christmas - Friday, Dec. 21 (half-day) - Monday, Dec. 24 - Tuesday, Dec. 25 Moving Toward A World Free of MS 3 GE T INVO LVED Big Steps Lead to Big Honor for San Antonio Volunteers by Alyssa Smith F red and Tracy Gibbons spend nearly all of their free time working to improve the lives of others. The National Multiple Sclerosis Society has been blessed with the friendship, passion, talents and generosity that the Gibbons have shared. Serving as team captains for both Bike MS and Walk MS, Fred and Tracy accounted for more than $50,000 in fundraising in 2011. They also served on both event planning committees, dedicating more than 500 hours per year to anything and everything that involves Walk MS and Bike MS. This year, they served as co-chairs for Walk MS: San Antonio. In this role, the Gibbons led a team of 25 volunteers in the planning and execution of the entire event. Under their leadership, 2012 Walk MS: San Antonio raised more money than ever before – more than $330,000. Their dedication and passion were recently honored in front of more than 1,100 people at San Antonio’s United Way Volunteer Dinner, where they were 4 MSConnection • FALL 2012 named Volunteer of the Year in the family category. Congratulations to Fred and Tracy! This honor is most certainly deserved. Alyssa Smith is the Development Manager for Walk MS in the Society’s San Antonio office. She can be reached at email@example.com. On the Road Again, Thanks to Your Support Dear National MS Society and all of those who support the Society, I want to send a heart-felt thank you for the financial assistance you provided me last year. Because of your generosity, I was able to install hand controls in my vehicle. Your assistance has greatly improved my life! Due to MS, I had not been able to drive since December 2009. I live alone, and felt very isolated and dependent upon others to provide the things I need and, of course, for transportation. Unable to work and having limited resources, the prospect of being able to install hand controls and become more independent seemed unlikely. When I learned of possible assistance through the National MS Society, I regained hope and made a phone call. Everyone was so nice, and the process LIVING WITH MS went so smoothly, quickly and efficiently. I would especially like to thank Marcia Stephens, Information Resource Specialist, and Jessica Fisher, Coordinator of Programs and Services. Both were extremely knowledgeable and helpful. Within a very short timeframe, my vendor was paid, the controls were installed and I began to drive again! I have regained some independence and it has made a significant difference in my quality of life. Thank you so very much for your assistance. I am very grateful to the National MS Society and all they do, and so appreciate the contributions made by so many. With gratitude and appreciation, Kim Dixon We want to hear from YOU! What’s on your mind when it comes to MS? We want and appreciate your feedback, ideas, stories and letters to share. You know you’ve got something to say, so here’s your chance. Contact MSConnection Editor James Black via email at firstname.lastname@example.org. LONE STAR M OVING TOWA RD A WOR L D F REE O F M S Moving Toward A World Free of MS 5 A DVO C A C Y MS Activists Play Crucial, Year-Round Roles in Legislative Process Efforts Drive State and Federal Support for Those Living with Chronic Illnesses by Claire Mitchell MS activist Kim Campbell presented at this year’s Public Policy Conference in Washington, D.C. 6 MSConnection • FALL 2012 Y ou may have heard it said that “all politics is local.” This means that the concerns of citizens and issues that affect their everyday lives can have a strong influence on the legislative process. An MS activist is someone who is willing to talk with his or her representatives in government, tell a personal story of living with multiple sclerosis and discuss legislative issues that are priorities. Those who are willing to take on this role can play a critical part in supporting legislation that creates positive change for those living with chronic illnesses. Their input can give lawmakers valuable perspectives on how public policy will impact their abilities to cope with MS and live full and independent lives. Activists have been busy with efforts focused on building those relationships and laying important groundwork for discussions that will occur during the 2013 Texas legislative session. They have also been busy working with their congressional delegates on issues that are a priority at the federal level. Earlier this year, Texas MS activists traveled to Washington, D.C. to participate in the National MS Society Federal Public Policy Conference. MS activists from across the United States came together to learn, discuss and exchange ideas while preparing for meetings on Capitol Hill with congressional delegates and their staff. The meetings were opportunities to discuss issues such as renewing funding for the Lifespan Respite Care Program, a program to help friends and family caring for a loved one living with a chronic illness; funding for ongoing research initiatives, including multiple sclerosis research, through the National Institutes of Health; and MS research through the Congressionally Directed Medical Research Programs (CDMRP), high risk/high reward research focused on veterans with MS. Activists also spoke about the MS Caucus, a group of dedicated members of the U.S. Congress who seek creative solutions to the challenges facing people with MS and their caregivers. Those legislators who had not yet joined the MS At the Austin finish line of the Society’s 2012 BP MS 150, Congressman Lloyd Doggett showed his support by speaking to reporters about the importance of funding research. Moving Toward A World Free of MS 7 National MS Society GRC member Donna Gosbee (left) and GRC Co-Chair Teresa Wynne presented Texas Sen. Robert Deuell with a Legislative Champion award for his work during the 2011 Texas Legislative session. Caucus were invited to consider doing so. The Federal Public Policy Conference marked the first time activists from the five South Central states – Arkansas, Louisiana, New Mexico, Oklahoma and Texas – were able to connect in person. Activists had another chance to connect with their delegates on home turf when Congress began a month-long recess in August; during that time, they often schedule meetings with constituents in their district offices to hear about concerns and priorities. At the state level, MS activists continued to look for opportunities to engage with Texas officials. Texas Government Relations Committee (GRC) members have had the pleasant task of presenting three Texas legislators with awards in honor of their work during the last session. The GRC is a group of committed MS activists who are leaders in the advocacy movement. Recipients included Rep. John Smithee (District 86, R-Amarillo), Sen. Robert Duncan (District 28, R-Lubbock) and Sen. Robert 8 MSConnection • FALL 2012 Deuell (District 2, R-Greenville). Texas GRC members Teresa Wynne and Donna Gosbee visited Sen. Deuell in Greenville to present him with his award. He was honored for his sponsorship of a bill that prohibits discretionary clauses in insurance contracts, clauses that enable an insurance company to deny benefits at its discretion, regardless of the other terms of the contract. This bill was passed in 2011 and is now law in Texas. Donna said they discussed subjects related to the challenges of people with MS, including employment issues and Medicaid. Donna and Teresa also shared their personal stories of living with MS, and learned that Sen. Deuell’s wife has MS. Sen. Deuell, who is a family physician in Greenville, also discussed the challenges of reimbursement from the physician’s perspective. Donna said, “It was a great meeting and he truly is a champion for people with MS. He cares a great deal and that comes across as you talk to him.” The award presented to Rep. Smithee, Chairman of the House Insurance Committee, was based on his work on the discretionary clause bill, as well as legislative work to prohibit mid-year increases to prescription co-pays and require advance notice of formulary changes. Audra Laminack, Co-Chair of the Texas GRC, was on hand to present the award to Rep. Smithee. GRC member Natalie Steadman presented Sen. Duncan with his Legislative Champion award in his hometown of Lubbock. He also worked on the discretionary clause bill that became law. Natalie said, “As a Texan living with MS, I am grateful for Sen. Duncan’s hard work and ability to get things done in Austin. We are fortunate to have him in the Texas Senate and appreciate his willingness to take the lead on policies that can help improve the lives of families affected by a chronic illness like MS. It is our privilege to honor him as our legislative champion.” Congressman Lloyd Doggett (District 25, D-Austin) has stepped up to show his support for National MS Society efforts. This spring, he attended the Walk MS: San Antonio and visited with many of the leadership volunteers and staff. He was also present at the Austin finish line of the 180-mile BP MS 150 fundraising bicycle ride, speaking to reporters about his daughter with MS and the importance of continuing to fund research. MS activists and National MS Society staff will have their radar up for future legislative champions as we turn our eyes toward January when the Texas Legislature once again convenes. Preparations are also already under way to prepare for the February 2013 Texas Public Policy Conference; during this conference, Texas MS activists will travel to Austin to meet other MS activists, learn about the issues, and attend in-person meetings with state representatives and senators. Claire Mitchell is the Regional Activism Coordinator in the Society’s Austin office. She can be reached at email@example.com. Activists Teresa Wynne and Toni Vogel attended the Society’s Public Policy Conference in Washington, D.C. earlier this year. Moving Toward A World Free of MS 9 L IVING WI T H M S Society Awards Scholarships to 22 College-Bound Students Some Lone Star students are ready to shine in the next step of their academic endeavors. by Kelly Jo Tullberg and James Black In 2012, the National MS Society: South Central was able to offer 48 scholarships to high school seniors. In Texas, 22 students were awarded scholarships. These Society-funded scholarships not only ease the financial burden of college for families impacted by multiple sclerosis, but they also invest in the future of talented, dedicated students. Of the 22 Texas recipients, 14 plan to go into either medical occupations or jobs that impact those living with disabilities. Congratulations to all of our 2012 recipients in the Lone Star State: Rebekah Boone Houston, Texas A graduate of Challenge Early College High School, Rebekah plans to attend St. Edwards University in Austin. In high school, she participated on the womenâ€™s lacrosse team and in the Drama Club, Interact Club, LGBT Club, Live Music Club and Hebrew Club. Rebekah is an active volunteer with the National MS Society and in her community. She plans to major in International Affairs and Relations, and Psychology, so she can help others while learning about different cultures and societies. 10 MSConnection â€˘ FALL 2012 Nicholas Booth Bellville, Texas After graduating from Bellville High School, Nicholas plans to attend Blinn College in Brenham for two years to get his Business degree. He then plans to attend the Houston campus of UTI to take automotive and diesel certification classes. This will give him the background to open his own business and run it successfully. Taylor Felderhoff Gruver, Texas A graduate of Gruver High School, Taylor is now heading to Texas Tech University in Lubbock to major in Sports Medicine and minor in Education to pursue a career as a teacher and coach. In high school, Taylor participated on the yearbook staff and on the cross-country, basketball and track teams. She has been a class officer and member of the National Honor Society. Sydney Flynn Vernon, Texas The next step in this Vernon High School graduate’s academic journey is Texas Tech University in Lubbock. Sydney will major in Interior Design with a minor in Photography. She would love to open an interior design shop for home décor and to design sensory rooms for persons living with disabilities. During her high school years, Sydney was active in the student council, Key Club, Science Club, Crime-Stoppers, yearbook, Robotics Team and JV Tennis. She also served as a PALS Mentor. Jessica Glasscock Mineola, Texas A graduate of Lindale High School, Jessica plans to attend Tyler Junior College in Tyler to major in Business and pursue a career in accounting. In high school, Jessica participated in band, yearbook, Key Club, National Honor Society and Students Against Destructive Decisions. Autumn Howell Dallas, Texas Autumn was recognized as a 2012 National Top Scholar. She plans to attend The University of Texas’ Dallas campus in Richardson; her goal is to earn her bachelor’s degree and then a master’s in Psychology, or to pursue a career as a physical therapist. At Bryan Adams High School, Autumn was active in the National Honor Society, Tri-M Music Honor Society, Key Club, Varsity Show Choir, Varsity Tennis, Environmental Club, Baking Club and Spanish Club. Jessica Klug Schertz, Texas Jessica plans to pursue a bachelor’s degree in Business Management at Texas A&M University in College Station, followed by Veterinarian School at A&M. A graduate of Samuel Clemens High School, Jessica participated in student council, Academic Booster Club, Business Professionals of America, and Gifted and Talented. Reece Magazini Southlake, Texas Heading to The University of Texas in Austin this fall, Reece will major in Engineering. He would also like to continue his education with a graduate degree and begin a career using his knowledge to engineer sports cars. During his years at Carroll Senior High School, Reece was active on the varsity lacrosse, track and JV football teams. He also took part in National Honor Society, Key Club and Mu Alpha Theta, the National Math Honor Society. Tanner Novak Springtown, Texas Tanner plans to attend The University of Texas’ Dallas campus in Richardson to study molecular biology and biochemistry. He then hopes to attend The University of Texas Southwestern Medical School and study to become an oral and maxillofacial surgeon. At Springtown High School, Tanner participated in marching and concert band, and Spanish Club; he was also a class officer. Tanner was very active as a volunteer in his school and community. Megan Pintal Highland Village, Texas A graduate of Marcus High School, Megan will head to Saint Mary’s College in Notre Dame, Ind. this fall. She intends to secure a degree in English Education to become an English teacher. Moving Toward A World Free of MS 11 Annie Randall Pasadena, Texas During her years at Deer Park High School, Annie participated in Health Occupation Students of America (HOSA), National Honor Society, Biology Club, Interact Club, Best Buddies Club, PALS, Cooperative Work Program and Club Volleyball. She plans to attend The University of Texas at San Antonio for a degree in Nursing. Aaron Reyes Austin, Texas Aaron will study basics at Austin Community College this fall, then plans to transfer to a university to major in Engineering. At John B. Connally High School, Aaron was an active mentor, tutor and student aide, while also participating in the orchestra. Briana Rhodes Justin, Texas A graduate of Grayslake North High School, Briana participated in the President’s Council, National Honor Society, Spanish Club, Key Club, Math Team, Health Occupations Students of America, Cross-Country and Track, and Environmental Club. Briana will attend La Salle University in Philadelphia, Texas. She will direct her education in the Pre-Medicine track to follow a career as a surgeon. She hopes to then travel the world with Doctors without Borders to help save lives. Joshua Russell Springtown, Texas A Springtown High School graduate, Joshua now will head to the University of North Texas in Denton to major in Nuclear Physics. He plans to earn his Ph.D. and follow a career in research. Phillip Self Van Alstyne, Texas During his years at Van Alstyne High School, Phillip participated in National Honor Society, marching and concert band, and various UIL teams. He heads to The University of Texas in Austin to obtain a degree in Music Recording Technology and a career in audio engineering. 12 MSConnection • FALL 2012 Kelli Sims Bulverde, Texas Kelli was profiled in the previous issue of MSConnection for her volunteer work with the National MS Society’s Walk MS and Bike MS events. At Smithson Valley High School, she took part in student council; National Honor Society; Sherwood 4H Club; Science Club; Spanish Club; Family, Career and Community Leaders of America; and Texas Technology Student Association. Kelli plans to attend Texas Lutheran University in Seguin and study to become a pharmacist. Carla Warren Sugar Land, Texas A graduate of William P. Clements High School, Carla was active in her school’s German Club, Theatre Club, German National Honor Society and Invisible Children, and played on the basketball, volleyball and crosscountry teams. She will attend Texas A&M University in College Station to major in English and German, with a minor in Theatre Arts. After college graduation, Carla plans to relocate to Germany to teach English and establish a Christian youth ministry. Kendall Willey San Antonio, Texas At Madison High School, Kendall was an active member of the Fillies Dance Team, National Honor Society, C.O.R.E. Student Government, Mavs Make a Difference and Spanish Club. She will attend Oklahoma State University in Stillwater, Okla. to earn her Ph.D. in Psychology. Kendall wants to help others in the community by either working for a governmentoperated clinic or establishing her own to help patients. Ashley Williams Gilmer, Texas Ashley heads to Texas A&M University in College Station to prepare for a career as a pediatric cardiac surgeon. The Gilmer High School graduate has participated in FFA, National Honor Society, Buckeye Cheerleading, Lady Buckeye Volleyball, Yamboree Junior Board, and Gifted and Talented. Shanell Williams Converse, Texas A graduate of Judson High School, Shanell was active in Health Occupation Students or America and Family, Career and Community Leaders of America. She will begin studies at Grambling State University in Grambling, La. to earn her BSN and MSN toward a career in nursing. Abby Wyatt Harleton, Texas A graduate of Harleton High School, Abby enjoyed being a key player on the varsity softball, basketball and cross-country teams. She was also involved in student council, Future Business Leaders of America and National Honor Society. She plans to attend The University of Texas at Tyler for a bachelor’s degree in Athletic Training, then pursuing a career as a physical therapist. Stephanie Wythe The Woodlands, Texas During her years at The Woodlands High School, Stephanie was part of the marching and concert band, National Honor Society, Science National Honor Society, Key Club, Wiffle Ball Club and basketball. At The College of William and Mary in Williamsburg, Va., Stephanie plans to major in Biology and graduate in an honors preprofessional program. She hopes to follow a medical career as a pediatric surgeon, researching endocrinology and neonatology. As this year’s scholarship recipients demonstrate, multiple sclerosis shouldn’t stand in the way of an education. The National MS Society’s scholarship program exists to help highly-qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. The number of scholarships given each year is based on available funding. If you would like to learn more about how you can support students impacted by MS and help their dreams of college become a reality, contact Taylor Mallia with the Society’s South Central Strategic Philanthropy at firstname.lastname@example.org. South Central Marketing Manager Kelly Jo Tullberg can be reached via email at email@example.com. MSConnection Editor James Black can be reached at firstname.lastname@example.org. 2013 Scholarship Applications Available Online The National MS Society offers a scholarship program for students with multiple sclerosis or who have a parent with MS. Applicants must plan to attend an accredited post-secondary school for the first time and to take at least six credit hours per semester leading to a degree, license or certificate. Each recipient is selected based on financial need, academic performance, compelling personal or family circumstances, and an applicant’s essay on the impact of MS on his or her life. Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered. Starting Oct. 1, 2012, scholarship applications for 2013 are available on the Society’s website. There is no application fee for Society scholarships. Completed applications and supporting materials must be submitted by mid-January 2013. For guidelines and applications, visit nationalMSsociety.org/scholarship or call the Society toll-free at 1-800-344-4867 (press 1). The Society’s website also has information on additional scholarship opportunities, including federal assistance and other financial aid resources. Moving Toward A World Free of MS 13 L IVING WI T H M S My National MS Society Scholarship Story: Preparing for the Future by Cara Huggins I attend Lubbock Christian University in Lubbock, Texas, majoring in biology toward becoming a physical therapist. I am very involved on campus and hold leadership positions in the Alpha Chi Honor Society, Pre-Health Professionals Club and my social club, Christliche Damen. I am part of the Ambassador Scholarship Alliance Team on campus which allows me to promote the natural sciences major to future students. Also, I am part of the work study program and am with the LCU Alumni Office for a third year. Throughout all of these activities, I have maintained a GPA of 3.93. My MS story begins with my dad being diagnosed in 2003. I was 13 when he was diagnosed, and I did not really know or understand what this disease was. Over the next few years, my family and I had to deal with different struggles with my dad where some of the situations came from him having MS. Within the next five years, my immediate and extended family became involved in attending the Walk MS. We usually attend the one in Addison, Texas, but I have also taken a group of friends to the one in Lubbock. My family and I have been consistent at attending the walk and have made team shirts to wear every year for about the last seven years. It has become a unique and special way for all of us to support my dad through this disease. Also, since my dad has been diagnosed, I have used MS as a topic in my class projects all the way from papers to speeches to raise awareness of the disease. 14 MSConnection â€˘ FALL 2012 During my senior year of high school, I applied for scholarships and, thankfully, one of the scholarships I received was from the National MS Society. It was such a blessing to find out that I could potentially receive it for all four years of college, especially since I was planning on attending a private university. I have reapplied and been awarded the Society scholarship each year that I have attended Lubbock Christian University. The Society scholarship has been extremely beneficial for my college experience. It assisted in relieving financial stress. As a result of this assistance, I was able to concentrate on my studies and enjoy my college life without seeking a second job. I deeply appreciate the financial assistance of the National MS Society scholarship. From visiting with my older brothers about the financial obligations in education, I know that I will have to finance a portion of my education after I graduate from physical therapy school. This aid from the Society will financially prepare me for the future. My academic experiences and my personal experience with MS continue to confirm my desire to become a physical therapist. I hope to one day be able to work with patients with MS and be able to help them through this disease. I look forward to continuing my education in preparation for this career. I am grateful for this scholarship and will continue to bring awareness to this disease. Sharing a Parent’s Diagnosis with Children by Yavonda Chase A diagnosis of multiple sclerosis usually comes with as many questions as the disease has symptoms. What does this mean? Am I going to become disabled? Am I going to be in a wheelchair? How do I tell my loved ones? Should I tell my employer? Will I have to quit working? For parents, there are additional questions: What do I tell my children? When do I tell my children? Garry Teeter, a licensed professional counselor, National Board certified counselor and certified brain injury specialist and trainer in Bryant, Ark., understands growing up in an MS family. His dad, Charles Teeter, was diagnosed with the disease in 1954. Garry Teeter and his twin brother were born in 1955. MS was just part of life for them. Now, Teeter works to help other families deal with MS. Teeter recommends that parents have a clear understanding of what they are facing and try to get a grip on their emotions before telling their children about multiple sclerosis. He cautions that if the parents haven’t addressed the emotional aspect of the diagnosis, the child will pick up on the emotions instead of what is being said. Children often internalize what they don’t understand, Teeter said. Parents need to be careful to ensure a child doesn’t internalize the diagnosis and believe MS is his fault — that he caused it and that he can fix it. He recommends giving very concrete descriptions when discussing the disease with children. For example, ask a child questions such as, “Have you noticed that mom or dad has had difficulty standing or been really tired lately?” Then, help the child understand that the reason for these symptoms is something called MS. Children find their safety and security in their parents, Teeter said, so if mom and dad are OK with this, the children will be as well. Teeter’s parents used an analogy of a lamp and its electric cord to explain the disease. A lamp that has lost some of the protective coating on the cord will work, but the light may flicker or short out sometimes. Teeter said his parents told him and his brothers that repairs needed to be made to the cord and things had to be done to take care of the lamp. “Don’t overcommunicate too much information that they can’t process or understand,” Teeter said. Also, be aware of teaching moments, he said. When an MS symptom occurs is a good time to sit down with the child and explain it. However, a good frame of mind at the time is key. If a child senses anger, then he may believe the parent is mad at him, not the disease. Teeter also recommends that if a child wants to help, work with him to find areas to contribute. However, be careful not to overload the child and let him sacrifice too much. While most parents with MS are dealing with younger children, some people are being diagnosed with MS at an older age. These cases offer the potential for the child to become the caregiver, so parents need to allow time for the child to process that thought. Teeter said it is a good idea to reassure the child that this conversation is about giving them information and not necessarily about asking them to shoulder responsibility. Teeter recommended counseling as an option for helping a family to develop a long-range care plan, as well as aiding a child who feels burdened or obligated by a parent’s diagnosis. Yavonda Chase is a contributing writer from Little Rock. Moving Toward A World Free of MS 15 National MS Society Staff Mobilizes to Keep Me Mobile by Jennifer McDaniel I ’d like to share my story by way of a thank you to the National Multiple Sclerosis Society. I hope you’ll benefit as I have and enjoy a similar relationship with the Society. My relapsing-remitting MS was diagnosed in December 2007, two years after initial symptoms appeared. By 2009, I decided to fight back by volunteering locally for the National Multiple Sclerosis Society in Texas. I started a Walk MS: Sugar Land Team – Just Cure It – now in our fourth year. I’m also about 16 MSConnection • FALL 2012 to begin my second year on the Walk MS: Sugar Land Committee. I’ve found great satisfaction in volunteering by working tables at events like Bike MS at Discovery Green and The University of Texas Department of Neurology Multiple Sclerosis Family Health Fair. I convinced myself that raising funds and awareness would help others and support research. I never saw myself as a direct beneficiary, but knew others would benefit from what I was doing. Of course, working with the Society, I began to meet others with MS, and found encouragement, humor, friendships and role models. I learned about clinical trials and services that I otherwise wouldn’t have known about through attending events: a study at the Multiple Sclerosis Eye Clinic at University of Houston that offered a thorough eye exam that repeats next year, a study at UT that included MRIs when they weren’t covered by my insurance, networking with other Walk MS team captains and members to share what works for them, and the list goes on and on. It’s definitely been a great decision on my part. Last year, I had to quit work and apply for disability. Leaving my private insurance coverage, I switched to a plan offered by my husband’s employer. I quickly found how lucky I’d been with my former plan; everything my PT doctor prescribed was denied or not covered. When spasticity caused my right Achilles tendon to shorten, leaving me unstable and unable to walk, I accepted that I was couch-bound. Then my doctor wrote a script for a scooter, and I realized I’d given up too soon. Maybe it wasn’t over and I’d have my freedom back. I began the process with an approved vendor to get a scooter, but later learned, to my shock, that our policy excluded any and all motorized or mechanized mobility aids. Unable to work a manual wheelchair, I once more felt like a prisoner at home. Companies I contacted for scooter private-pay pricing either wouldn’t quote me or all used the same price - the one they charged insurance companies. It seemed over before it even began. Later, while talking to Development Manager Calvin Pollard, I mentioned I felt limited in volunteering since my insurance didn’t cover a scooter and my mobility had declined. I explained that while waiting on a disability decision, a scooter purchase was out of the question. Calvin told me that the Society could help. He gave me contact information and I ended up working with Brooke Smith in the Society’s Arkansas office. Brooke is the Manager of Programs and Services, and she is incredible. Within a month, she and Alicia Barron, the Lone Star Programs and Services Manager, had arranged for me to meet with staff at the Scooter Store in Houston to choose my scooter. I think I asked for the news to be repeated because I couldn’t believe it was actually happening. I called the Scooter Store and they were great. I went in and tried various models. The Scooter Store staff advised me on issues such as four-wheel vs. threewheel, features vs. benefits, turning radius, battery life and scooter weight. I left with two scooters in mind, shared my choice with Alicia and Brooke, and then said a prayer. Next thing I know, the Scooter Store’s Lift Services Program Manager Scott Teuton called to tell me everything was ready. They simply needed to schedule an appointment to install my lift. A lift? That was huge that it was included, too, and I hadn’t expected it. In no time, Scooter Store employees Jerry Morrison and Mark Davis had my lift installed. They trained me on safety and use of both scooter and lift before sending me on my way. I’d gone from couch prisoner to proud new owner of a Four-Wheel Pilot Mobility Scooter and lift. They are beautiful. To say I was grateful to the Society, Brooke, Alicia, Calvin and the Scooter Store is an understatement. This appreciation also extends to all those who volunteer and work for the Society yearround to make these miracles possible. You don’t need to be a volunteer to benefit from all the National MS Society has to offer. Of course you get so much more than you give, as I have, but all you need to do is contact your local Society office or an MS Navigator and share your needs. That’s what they’re for, and they’re really good at it. ...working with the Society, I began to meet others with MS, and found encouragement, humor, friendships and role models. To contact your local National MS Society office or to speak with an MS Navigator who can answer your questions, call toll-free 1-800-344-4867. Moving Toward A World Free of MS 17 Stuff Our Stocking for the Holidays and Beyond M any people have holiday wish lists at this time of year. At the National MS Society, our wish list is in season year-round. Financial gifts provide the Society with the most flexibility in delivering programs to everyone affected by multiple sclerosis. However, we recognize that many people have resources and connections to a variety of needed products and services that can also help us reach our goals. If you would like to donate any of the items listed below or know someone who can, please contact Taylor Mallia with Strategic Philanthropy by calling 1-800-344-4867 or via email at email@example.com. • • • • • • • • • • • Airline tickets Art and sporting event tickets Audio/visual equipment and services Banners and signs Beverages Catering Children’s activities Event supplies, such as tents, tables and chairs Florist services Food Gift certificates or gift cards • • • • • • to any store Giveaway items Home modification equipment or services Hotel accommodations Office supplies, including paper, mailing labels and toner Professional photography services Professional printing services for postcards, posters, brochures and newsletters • • • • • • • • Plaques and awards Plastic and paper products Portable toilets at fundraising events Postage Rental and refrigerated trucks Restaurant space and usage for receptions Walkers Wheelchairs Thank you for making the holidays – and the entire year – bright with your support. 18 MSConnection • FALL 2012 Society Launches $18.4 Million in New Research and Training Projects Society awards 52 new grants and fellowships as part of its more than $43 million investment in 2012 research projects I n July, the National Multiple Sclerosis Society committed up to $18.4 million to support 52 new MS research projects and training fellowships as part of its comprehensive strategy to stop MS in its tracks, restore function that has been lost and end the disease forever. This financial commitment is the latest in the Society’s relentless research effort to move closer to a world free of MS. The National MS Society’s long-standing investments in basic and translational research have resulted in new treatments and better methods of diagnosis and disease management for people with multiple sclerosis. The Society continues to pursue all promising paths that lead to solutions for everyone affected by MS. To ensure the scientific merit of each research proposal selected, the National MS Society relies on expert advisory committees that include more than 70 world-class scientists who volunteer their time to carefully evaluate hundreds of proposals every year. The new research projects include: • explorations of what causes people with MS to experience pain; • a DNA bank to aid researchers investigating the genes that make people susceptible to MS; • new approaches to promoting nervous system repair; and • fellowships to train promising young doctors and scientists in MS research and clinical care. These new projects add substantially to the research goals outlined in the Society’s Strategic Response to MS. There are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function. The National MS Society-funded research helped lead to the development of many of these therapies and continues to be a driving force of MS research. Moving Toward A World Free of MS 19 RE S E A R C H Research Round-Up 20 Clinical Trial Shows Promise for New Therapy for Relapsing MS New MS Drug Application Filed for FDA Review In a clinical trial involving 1,169 people with relapsingremitting multiple sclerosis, oral teriflunomide reduced relapses compared with placebo over at least 48 weeks. Of two different doses tested, the higher dose also slowed progression of disability. This is the third completed of five phase III studies involving teriflunomide in multiple sclerosis. An application for marketing approval of teriflunomide was accepted for review by the U.S. Food and Drug Administration last fall. These and results from additional studies should help define the short-term safety and promise of teriflunomide as a potential new therapy for relapsing MS. In June, Genzyme announced that it had submitted a new drug application to the FDA for approval to market alemtuzumab – under the proposed name Lemtrada – for treatment of relapsing MS. The application was based on positive results from several clinical trials involving people with relapsing-remitting MS. Alemtuzumab is given by a cycle of IV infusions only once per year. The FDA review process generally takes from six to 10 months. “People with MS need more treatment options. If the FDA agrees to file this application and its review finds alemtuzumab to be safe and effective, it would represent a significant new treatment advance,” said Dr. Timothy Coetzee, Chief Research Officer of the National MS Society. MSConnection • FALL 2012 Botox Research Moves to Reduce Arm Tremors Botox significantly reduced arm tremor, and improved arm and fine hand movements and function, in a small study of people with MS. If confirmed in a larger study, this research may yield a new strategy to address this common and disabling symptom of MS, which is often resistant to treatment. Italian Study Finds Therapies Reduce Risk of Disease Progression Researchers who studied outcomes for 1,178 people with multiple sclerosis from three MS centers in Italy have concluded that using disease-modifying therapies significantly reduced the risk of progressing from relapsing-remitting to secondary-progressive MS. This study adds to the body of evidence suggesting that MS therapies improve future outcomes for people with MS, having a positive effect not only on inflammation but also on the damage to nerve tissues that causes progression of disability over time. The study requires further confirmation, but it indicates the value of pursuing every novel avenue to answer questions posed by MS. Protein May Hold Key to Immune Attacks According to a new study published in The New England Journal of Medicine, researchers have identified a protein that may be a target of the immune attack in some people with MS. An immune response to this protein â€“ called KIR4.1, which is found on several types of brain cells â€“ was observed in the serum of 47 percent of people with MS who were tested. Further research is needed to confirm these findings, and to fully understand what role this protein may play in MS and its potential for developing new treatments. Moving Toward A World Free of MS 21 Scientists Probe Effects of Stress Management on MS Activity In a recent study, a 24-week stress management program reduced disease activity on MRI scans significantly more than in a control group. However, the benefits seemed to disappear after the weekly in-person stress management sessions were completed. Future studies should provide more clarity for optimizing the potential benefits of stress management in people with multiple sclerosis. The authors are continuing to examine these results. They also suggest that the use of telephone, Internet and mobile phone interventions may help sustain the results of stress management programs after the program stops, since long-term standard behavioral intervention can be burdensome for patients who must make weekly office visits. Christoph Heesen, M.D., and Stefan Gold, Ph.D., with the University Medical Center Eppendorf in Hamburg, Germany, noted that this study may provide the first direct evidence “for a causal link between stress and inflammatory activity in these patients.” Immune B Cells May Harm Myelin-Making Cells Researchers have found evidence that immune cells known as B cells from people with MS may produce toxic factors that harm brain cells, particularly cells that make myelin, the key substance needed for nerve transmission. If these factors can be identified and confirmed to play a role in MS disease progression, it may serve as an important target for developing new MS therapies. In the future, it may also become possible to stimulate B cells to turn off the production of this toxic factor in people with MS. FDA Update Addresses Seizure Risk for Those Taking Ampyra In July, the U.S. Food and Drug Administration (FDA) released a Drug Safety Communication to address the risk of seizures in people with MS who are starting Ampyra (dalfampridine, Acorda Therapeutics). Ampyra was approved in January 2010 to improve walking in people with multiple sclerosis. Seizures are a known side effect of Ampyra and seizure risk increases with higher blood levels of the drug. Based on its evaluation of post-marketing reports of seizures occurring in people with MS on the therapy, the FDA is updating prescribing information for Ampyra. The update advises that kidney function should be checked before starting Ampyra and monitored at least annually, because impaired kidney function can result in high blood levels of the drug. The FDA also emphasized that patients who miss a dose should not take extra doses, since an extra dose of Ampyra can increase seizure risk. In an evaluation of adverse event reports, most of the seizures happened within days to weeks after starting the recommended dose and occurred in patients having no history of seizures. Most of those who experienced seizure were at least 50 years old and were at risk for mild, agerelated kidney impairment. For more information on breakthrough research and clinical trials, visit the National MS Society online at nationalMSsociety.org and click on the “Research” tab. 22 MSConnection • FALL 2012 Neighbor to Neighbor for your support of the Kroger Neighbor to Neighbor Program! CUSTOMER LETTER Step One How many Kroger Neighbor to Neighbor accounts can an organization have? One per organization (Example: ABC HIGH SCHOOL account could represent: PTA, cheerleaders, football, basketball, band, etc.) Unless each entity has their own 501(c) (3). Step Two Can a household “link” their KrogerPlus Card to more than one organization at a time? No, the system allows for one organization per household. To change organizations, you must present your KrogerPlus Card and the new organization’s barcode to the cashier. Step Three Do I have to enroll each program year? Yes, all organization’s and participants must re-enroll for each new enrollment period. The current Neighbor to Neighbor Program is accumulating period is effective July 1, 2012 to April 30, 2013, Organization Enrollment period is June 1, 2012 to Dec. 31, 2012. Read through this letter to understand the advantage of being a part of the Kroger Neighbor to Neighbor Donation Program. Take the letter with you to your neighborhood Kroger store the next time you go shopping. Present the letter with your organization’s barcode to your cashier upon checkout. After they have scanned your KrogerPlus Card you will be enrolled for the current year of the Kroger Neighbor to Neighbor Donation Program. Every time you shop at Kroger and use your enrolled KrogerPlus Card, Kroger will contribute a percentage of your eligible purchases to the Kroger Neighbor to Neighbor Donation fund. Once a card is scanned with the barcode, it will be active for the remainder of the program year. After 7 days, from initial scan, you will start to see your contributions to your organization on your receipt. How much can my organization earn? The Kroger Neighbor to Neighbor Donation Program will donate $1 million annually. Each organization will earn a percentage of the $1 million equal to the percentage of total earned contributions attributable to that organization. How are the funds distributed? Contributions will be paid via check and mailed to the organization’s address and primary contact identified on the organization application form. For schools, it will be mailed to the principal and the funds distributed at their discretion. Kroger Cashier: Please scan customer’s KrogerPlus Card at the beginning of the order, and then scan the above barcode. The customer’s KrogerPlus Card is now enrolled in the Kroger Neighbor to Neighbor Donation Program. Please feel free to contact a Kroger Neighbor to Neighbor Donation Program Representative with any additional questions at 866-866-995-7643 or email to firstname.lastname@example.org. Additional information is also available at www.krogerneighbortoneighbor.com Moving Toward A World Free of MS 23 National Multiple Sclerosis Society Lone Star Chapter 8111 North Stadium Drive, Suite 100 Houston, Texas 77054