MSConnection Oklahoma: Summer 2012
The summer edition of MSConnection, a local quarterly newsletter published by the National MS Society with news of interest for Oklahoma residents affected by multiple sclerosis.
OKLAHOMA M OV I N G TO WA R D A W O R L D F R E E O F M S SUMMER 2012 2012 MS Scholarship Recipients Awarded By BJ McBride Each year, the National Multiple Sclerosis Society offers a scholarship program open to highly qualified high school seniors who have been diagnosed with MS or have a parent living with MS. Students are asked to apply and additional criteria include financial need, academic record, participation in school or community activities, and an essay (written by the applicant) on the impact of MS on his or her life. Awards range from $1,000â€“$3,000 and a small number of four-year awards are offered. These scholarships are made possible by foundations, individual donors and other sources. For the 2012 program year, the South Central Region of the National MS Society was able to offer 48 scholarships to High School Seniors. In Oklahoma, 10 students were awarded scholarships for the 2012-13 school year. Save the Date: Annual Close/ Women Against MS MS Regatta PAGE 2 Luncheon PAGE 4 Taylor Aldridge One of the recipients, Taylor Aldridge, is recognized as a 2012 National Top Scholar. Taylor is a graduate of Poteau High School and plans to attend Carleton College in Northfield, Minnesota. Her future goal is to major in Neuroscience/Biology, and then she hopes to pursue her MD/PhD where she will research the nervous system and neurological diseases/ disorders to one day find a cure for MS. Continued page 3 Oklahomans Join Walk MS Volunteer Highlight PAGE 10 PAGE 16 MSCONNECTION is published by the National Multiple Sclerosis Society, Oklahoma, Building 7, Suite 103, 4606 E. 67th St., Tulsa, OK 74136-4950. Save the Date: 33rd Annual Close/MS Regatta Tulsa Office 918-488-0882 Outside Tulsa 800-344-4867 Oklahoma City Office 405-488-1300 Tulsa Fax 918-488-0913 Oklahoma E-mail staff’s first name.last firstname.lastname@example.org Website www.nationalmssociety.org/ok The 33rd Annual Close/MS Regatta will host its launch party on Thursday, Aug. 16 from 6 p.m. to 9 p.m. at the Home Builders Association. The Close/MS Regatta is scheduled to set sails on Saturday, Sept. 8 at the Windycrest Sailing Club on Lake Keystone. The theme for 2012 is “33 RPMS: Race to Pursue an MS Cure” and marks 33 years of fundraising for the National MS Society: Oklahoma. This is the perfect opportunity for you, your family, your company and friends to join the crew in the efforts to create a world free of MS. Sponsorship is available on multiple levels! Special thanks to Chairman Mark Lobo, members of the Windycrest Sailing Club and the terrific event committee members! Vice President of Development • Ray Mack Communications Manager • Brandi Davidson Moore Strategic Philanthropy Director • Lucy Fraser Development Manager • Cristy Racy Development Coordinator • Rachel Klenda Development Coordinator • Shannon Blackwell Dir. of Programs & Services • Sharleen Dupee Programs & Services Managers • Lisa Rutledge, Jennifer Philp Volunteer Coordinator • Beth Snyder Programs & Services Coordinator • Donna Bolain Youth Programs Coordinator • B.J. McBride Finance Manager • Denise Allen Data Mgmt Coordinator • Lisa Gray Newsletter Editor • Brandi Davidson Moore Newsletter Proofreader • Lisa Gray For more information contact Rachel Klenda at 800-344-4867, option 2, ext. 35124, or visit the website at nationalmssociety.org/ok. 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. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned. ©2012 National Multiple Sclerosis Society, Oklahoma Mike Keim and Mary Benes enjoying their time on the Party Barge during the 2011 Close/MS Regatta. 2 I JOIN THE MOVEMENT: nationalMSsociety.org From Page 1 news Another recipient recognized as the 2012 Linda Chance Memorial Scholar is Sean Barger of Broken Arrow, Okla. This award is given in honor of our beloved Linda Chance whom we lost in 2008. Linda was a loyal friend and devoted volunteer with the National MS Society: Oklahoma. She will forever be remembered throughout the United States as the creator of the MS Ribbon of Hope. Her MS never got in the way of what she wanted to accomplish. We are honored to have a scholarship named in her memory. This award is offered to students affected by MS. The award is based on financial need, academic record and a personal essay. Sean Barger Additionally, there are three recipients recognized as the Robert Long Memorial Scholars, which is an award given in honor of Robert Long who had multiple sclerosis and passed away at the age of 53. In 2007, with the encouragement of Oklahoma Chapter Board Trustee Bill Harris of Enid, the Harris Foundation created this award. This yearâ€™s recipients are: Whitney Force of Kellyville, Okla., Macayla Potter of Cyril, Okla., and Shelby Reeves of Woodward, Okla. We would like to congratulate the following scholars on their hard work and wish them the best of luck as they begin their college careers: Taylor Aldridge Poteau, Oklahoma* Christopher Basden Okemah, Oklahoma Colby Gibson Newcastle, Oklahoma Shelby Noland Tulsa, Oklahoma Macayla Potter Cyril, Oklahoma*** Whitney Force Sean Barger Broken Arrow, Oklahoma** Whitney Force Kellyville, Oklahoma*** Alli Martin Tulsa, Oklahoma Jessica Potter Cyril, Oklahoma Shelby Reeves Woodward, Oklahoma*** * Recognized as a 2012 National Top Scholar ** Recognized as a 2012 Linda Chance Memorial Scholar *** Recognized as a 2012 Robert Long Memorial Scholar Macayla Potter Shelby Reeves View the 2012 scholarship recipients on the website: www.nationalmssociety.org/ chapters/oke/programs--services/ college-scholarships/index.aspx MS shouldnâ€™t stand in the way of an education. If you would like to make a donation to the scholarship program or for additional information about donating, contact Ray Mack at 918-488-0882, ext. 35119. TOLL FREE NUMBER 1 800 344 4867 I 3 news 11th Annual Uncorking the Cure for MS Please join us for our 11th Annual Uncorking the Cure for MS Live and Silent Auctions benefiting the National MS Society: Oklahoma. This event will be held Friday, Aug. 17 from 6 p.m. to 9 p.m. at The International Center. The event will include our live and silent auctions, Wine and Restaurant Gift Card Pull, delicious cuisine from Lambruscoâ€™z and award winning wine from Triumph Wines produced by Calistoga Cellars. Special thanks to the fabulous event committee members and Uncorking Chairs: Debbie and David Carder, Patron Chairs: Brent and Lucia Laughlin and Wine Masters: John and Leigh Reaves. For more information, please contact Rachel Klenda at 800-344-4867, option 2, ext. 35124, or email@example.com. Tickets, patronage opportunities and our new silent and live auction previews are available online at UncorkingTheCureForMSok.org. Women Against MS Luncheon was Delightful The 2012 Women Against MS Luncheon took place in Oklahoma City on May 15. One hundred fifty guests enjoyed a new twist to the program as emcee and past Society scholarship recipient Channing Barker interviewed guest speaker Cynthia Kragthorpe, wife of LSU Tigers quarterbacks coach, Cynthia Kragthorpe, Guest Speaker, along with Ray Mack, Channing Barker, Emcee, and Patti Barker. Steve Kragthorpe. With donations and sponsorships of $40,000, the event has raised $800,000 in the efforts to create a world free of MS over the past 11 years. Special thanks to our raffle donors: Naifeh Fine Jewelry; Mathis Brothers; Ruth Meyers; and Patsy Pollard and Cheryle Taylor. 4 I JOIN THE MOVEMENT: nationalMSsociety.org Art Bike Tulsa on Display at Tulsa International Airport news Art Bike Tulsa had a terrific launch at the Tulsa International Mayfest. For those who missed it, you can now see it on display at the Tulsa International Airport in the baggage claim area in each terminal from now until September 14. Many special thanks to our returning presenting sponsor, SCFM Compression Systems, Inc. for making this awareness opportunity possible. Art Bike Tulsa is an installation of colorful, uniquelydesigned bicycles, transformed by some of Tulsa’s leading artists and high school students to bring awareness to multiple sclerosis, the Society and Bike MS. We would like to extend a special thank you to our participating artists and sponsors! Artists: Jan McKay – Riding for Brighter Days, Janet Fadler Davie – The Lighted Path, Jim Coles – Join the Movement, Kate Johnson – Neon Okie, Mary Jane Porter – You Must Have Silliness, SCFM Compression Systems, Inc. – Standing on Your Own, and Union High School students - April Robertson – Test of Hope, and Erika McGovern – Life Within. Donated bike parts from: Caleb Green, Carolyn Farris, Dick Banks, Lee’s Bicycles, T-Town Bicycles, Tom’s Bicycles, Sun & Ski and the Walker family. Other sponsors & supporters: Union High School and Art Instructors, Jesi McGhee and Roxann Hulsey, Tulsa International Mayfest and the Arts & Humanities Council of Tulsa. For any questions, please contact Brandi Moore at 918-488-0882, ext. 35113 or firstname.lastname@example.org. Get Connected and Raise Awareness with New Online Community What if everyone living with multiple sclerosis could connect with one another, with those who care for someone living with MS, or with those who research ways to stop, restore or end the disease? The National MS Society is virtually making those connections a reality. You can join the Society’s new MS Connection online community and make meaningful connections when, where and how you want. Best of all, you can connect with free, easy access to the best content and resources the MS community can bring you, including photos, group discussions, updated blogs, videos and more. You’ll learn about topics that are most important to you, connect with others, and have expert MS information and opinions right at your fingertips. Check out this new connected community at MSconnection.org today. TOLL FREE NUMBER 1 800 344 4867 I 5 NEWS Welcome New Vice President of Development, Ray Mack • Ray Mack joined the Society as the Vice President of Development for Arkansas and Oklahoma on April 23. • He previously worked for Marathon Oil in Project Management. • Ray graduated from Regis University with a Masters of Business Administration. • He is married to his beautiful wife, Jennifer Mack, and is a proud father to his daughter, Delaney, and son, Dante. They all reside in Oklahoma City. • “After volunteering for over 13 years with the Society as Co-Chair of Bike MS Oklahoma and National Team Captain for Marathon Oil, I realized that I wanted to join the Society to fulfill my passion Ray Mack with daughter, Delaney to create a world free of MS.” Welcome New Bike MS Coordinator, Shannon Blackwell • Shannon Blackwell joined the Society as the Development Coordinator (Bike MS Coordinator) in May. • She previously worked at the corporate office of Daylight Donuts. • Shannon graduated from the University of Arkansas with a degree in advertising and public relations. • When not at the Society, she can be found cheering on the St. Louis Cardinals and spending time with family and friends. • “My sophomore year of college a close family friend of mine was diagnosed with MS. A tri-athlete in her prime, she was hit hard Shannon Blackwell by the disease. Since then I have been active in educating myself and others about the disease as well as raising funds to support finding a cure. During my time at U of A I was lucky enough to co-found an organization on campus called Students Supporting MS Research. This group not only held educational meetings for the student body, but hosted the first ever, student-run MS walk on a college campus, a tradition that continues today. I am motivated and inspired by those I have met with MS and want nothing more than to succeed for them. Despite her MS, my friend is still an avid cyclist, giving my new position as the Bike MS Coordinator an even greater meaning. Bike weekend is just around the corner and I can’t wait!” 6 I JOIN THE MOVEMENT: nationalMSsociety.org Are you a Smarty Pants? Join us August 16 News The 2012 Smarty Pants Trivia Night fundraising event will take place at the Oklahoma History Center on Thursday, Aug. 16 from 6 to 9 p.m. Team tables of ten will compete for the title of Smarty Pants Champ, a trophy and bragging rights for the year. Local media spokesman, Brent Skarky, will emcee the evening, which includes seven trivia categories, a Pick-Your-Package Raffle and a traditional wine pull. Five theme-based raffle packages will be up for grabs including: Thunder, OU and OSU bundles, Fitness & Beauty and a Gift Card Basket. Chances for the drawing and the wine pull will be $20 per ticket or 3 for $50. Team Tables are on sale now for $400 online and individual tickets for $40 each will be available beginning mid-July. For more information, contact Lucy Fraser at 405488-1300 or email@example.com. Praiz 101 Takes Home Judges Choice Award at the YAMS Battle of the Bands The 2012 Youth Against MS (YAMS) Battle of award went to He & She- Zach Benge and Haley the Bands just finished up its fourth year! This Huddleston. Thank you to everyone who helped year, the battle was held at Veteran’s Park on make this year another amazing success! Saturday, April 21, in conjunction with the 25th Anniversary celebration of Walk MS Tulsa. Ashlie Walker and our friends from K95.5 FM’s Cash & Carey Morning Show- Natalie Cash and Jim Carey served as our trio of emcees for the event. Our celebrity panel of judges consisted of Dave Armstrong, Scott Pendergraft, and Dave Thayer. This year we had the opportunity to showcase the talent of four bands: Praiz 101 from Pryor, OK; He & She from Bixby, OK; Stone Crow from the Tulsa area; and Bruce Flea from Cleveland, OK. Our “Judge’s Choice” award went to Praiz 101, who has played in the last three battles. Judge’s Choice Award Winner, Praiz 101 Our “John Walker People’s Choice” TOLL FREE NUMBER 1 800 344 4867 I 7 NEWS Orange You Glad for MS Awareness Week? By Beth Snyder Danker, the teacher responsible for organizing the walk, and Principal Tilley, the reason for the event. During MS Awareness Week, I had the pleasure to I assumed that the school was hosting a walk and attend an area school’s Walk MS event. When nothing more, but as I looked around the hallways asked if I would accompany one of our Programs I noticed that a whole week of festivities had been and Services staff, BJ, to a local walk, I jumped at the planned—a night of bowling, a basketball game, a chance to see an event firsthand. Little did I know pie-eating contest, and even a penny war. that this walk would leave a lasting impression. To understand how impressive this school’s efforts BJ and I headed to Ripley, Okla. without much truly were, we need to go back to summer 2011. knowledge on what to expect. As we turned Mrs. Danker is the faculty advisor for Family, Career onto a road unsure if we were traveling in the and Community Leaders of America (FCCLA), right direction, we saw the Ripley Schools’ which is a group of outstanding student leaders marquee declaring ‘MS Awareness Week from grades 9-12. They met last summer and March 12-16’ and we knew we had arrived. decided that they needed to do something for Principal Tilley who was diagnosed with multiple BJ and I approached the school to find Mrs. sclerosis the previous school year. The students figured out the dates for MS Awareness Week (MSAW) 2012 and started planning. The entire Below: Ray Mack, Vice President of Development, and Juana Driver, MS ambassador, accept the wonderful donation from Principal Tilley and the school. 8 I JOIN THE MOVEMENT: nationalMSsociety.org building for Ripley schools houses pre-K all the way to high school seniors, which is about 500 students, so FCCLA pushed the whole school to get involved. BJ and I returned to Ripley with other NEWS MS staff and an MS ambassador to thank the whole school in person for their efforts and to receive their donation a Mrs. Danker and her students started by month later. So how much did Ripley raise? The designing orange t-shirts to sell for $12 prior to goal was to raise $1,000 and they raised… MSAW. The front of the shirt had a simple design $2,000! This local community managed to raise and the phrase “Rock n’ Roll.” The back elaborated twice as much as they anticipated. Their by declaring, “We rock the orange to roll over MS. generous donation allows the Society to fund Team Tilley.” For me, this was the first sign that BJ medical research to find a cure and offer and I were part of something personal and powerful. programs, services, and treatments to those living with MS now. The time had finally come – All students and faculty wearing their orange shirts were to report Ripley is proof that when we come together for a outside at the starting line. We huddled around cause we can accomplish more than we think. the Walk MS banner at the starting line, the gun Imagine if other schools, organizations, or fired, and the walk was on! As the route curved companies followed suit. Think of the change we around we saw big kids and little kids would see in our alike standing with their arms stretched communities. I was out, cheering us on and yelling, “Team overwhelmed by Tilley! Team Tilley!” Mrs. Danker walked Ripley and no with us and we talked about the whole words can express week of activities. She told us that the what I felt that day. cafeteria staff dressed up as the Village This is why my job People and did a routine to the ‘YMCA’ matters. This is during the basketball halftime show. The why I come to penny war challenged the younger work every day- to students and the class with the most help make a pennies won an orange lollipop party. positive difference Miss Suggs’ pre-K class won - they raised for others. $146 in pennies! I want to thank the We thanked Mrs. Danker for her hard students, faculty, work and tried to express how grateful we were and community of Ripley for rallying behind the for people like her taking the initiative to make National MS Society and joining the movement a difference for our cause, but she wouldn’t take to help wipeout MS. You came together to make much credit. She said the students wanted to a difference for Principal Tilley, but in the process do this, and they were the ones to make it you have made a difference in my life, too, and happen. Ripley isn’t just a school; it’s a family. for that, I’m forever grateful. While these kids are in class all day, they are part of one big, happy extended family. Principal For the extended version of Beth’s story, please Tilley isn’t some man. He isn’t just the principal; visit nationalmssociety.org/ok. he’s also their friend and someone that these students truly care about. TOLL FREE NUMBER 1 800 344 4867 I 9 Team Talk Oklahomans Join the Movement at Walk MS Events By Cristy Racy Across the state, Oklahomans really hit their stride for the Societyâ€™s four spring Walk MS events. In Lawton, Tulsa, Oklahoma City and Ardmore, more than 4,000 participants laced up and stepped up in this important journey to help over 24,000 Oklahomans served by the National MS Society: Oklahoma. So far, nearly $360,000 has been raised! Save the Date! Two more Walk MS events are being planned for this fall. Mark your calendars and join us in one of these communities: Walk MS Stillwater Saturday, October 6 Boomer Lake Site opens: 8 a.m. Walk begins: 9 a.m. Walk MS Muskogee Saturday, October 6 Honor Heights Park Site opens: 9 a.m. Walk begins: 10 a.m. Register today at walkmsok.org or call 1-800-344-4867, option 2. Volunteers from Walk MS Ardmore gathered at the 3rd Annual event May 21. Walk MS Committee Chair, LaDona Hays, celebrates at the finish line. The Walk MS event in Garber raised $7,189.25 for people with MS! Laurie and Aimie Dwyer presented a check for $1,420 to the Society from their DIY event â€“ the MS Spring Market. With a total of 35 booths from local Oklahoma vendors and 11 volunteers, they raised the money in support of their Walk MS team, Team M.O.M. (Moms Team DMS includes 79 team members and raised a total of $2,029 for Walk MS Lawton! on the Move). Many thanks to Mingo Valley Christian School for hosting the event. 10 I JOIN THE MOVEMENT: nationalMSsociety.org Club 66 Spotlight: Bill Taylor By Shannon Blackwell Introduced to cycling and the MS 150 by his son Matt, Bill Taylor rode in his first Bike MS ride in 2010, along with his three sons Matt, Mike and Jason. Riding to support a close family member and a colleague, Bill is motivated by the difference he’s making, “I am motivated just knowing that every mile we ride wearing our MS jerseys and every dollar we raise helps create awareness and funding to help find a cure for MS.” Bill is a proud member of Rollin with the Homies. “The best thing about our team is that all three of my sons are active members and we get to spend time together training and raising funds for MS. Our team began in 2010 with 6 members, Bill Taylor. Bike MS growing to 23 in 2011. Rollin with the Homies has 38 team members registered so far for the 2012 Bike MS Team Talk Oklahoma: The Mother Road Ride. Just recently we held a team training ride on a Saturday morning. Following the ride, we grilled hotdogs and hamburgers and just spent some time hanging out together.” Being a fairly new cyclist himself, Bill had this advice for someone new to the ride: • Find a good team and join! Joining a team will be a great source of encouragement to you in your training rides and in your fundraising. • Find and follow a good training and nutrition regimen. This will give you the strength and confidence you’ll need to finish your first 150! • Fundraising and Awareness. Ask everyone you know to support you! Utilize the MS participant website to put together your fundraising campaign. You’ll be amazed at the number of people you can reach and how many have their own connection to MS. For more information, check out our team page at bikemsok.org or find us on Facebook. Remember, The Mother Road Ride is on September 15 & 16. Sign up today at bikeMSok.org. Become a Champion for Bike MS The CHAMPS program is the link between Bike MS participants and people living with MS. Participants receive CHAMPS ride bibs personalized by someone living with MS. The bib symbolizes the CHAMPS connection, which fosters education, awareness and friendship. Participants are encouraged to contact their Champion (Person with MS) after the event. Many form friendships that continue well beyond the Finish Line. This is a FREE program for both event participants and people living with MS. If you are a Champion and are interested in joining the program, please fill out the CHAMPS survey at the following website: http://biketxh.nationalmssociety.org/site/ Survey?ACTION_REQUIRED=URI_ACTION_ USER_REQUESTS&SURVEY_ID=58271. TOLL FREE NUMBER 1 800 344 4867 I 11 Programs One Hot Fiesta, Getaway Weekend November 9-11 Tulsa, OK By Sharleen Dupee This year’s Getaway Weekend will be muy caliente (very hot)!! Save the dates and soon you’ll receive more information with all the details in the mail. Getaway Weekend is designed for people with MS and their spouse and/or care partners. This is a three-day, fun-filled retreat with games, indoor and outdoor activities, prizes, and opportunities to fellowship and “vacation” with other couples and individuals who are also living with MS. We will let you know as soon as registration is open…in the meantime, stay tuned and get ready for a fiesta! Moving Forward: A Program for the Newly Diagnosed Saturday, August 25 Tulsa, OK 9:00 a.m. - 2:00 p.m. This is a program for individuals who have been diagnosed for two years or less, or who have never attended this program. Individuals will learn to “break through the barriers” and gain knowledge on these topics: • MS Treatments and New Research • Wellness and MS • Talking with friends and family about MS • Managing the impact of MS on employment and the National MS Society For more details and to register online, go to nationalmssociety.org/ok or by phone at 1-800-FIGHT MS (1-800-344-4867, option 1). 12 I JOIN THE MOVEMENT: nationalMSsociety.org 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? PROGRAMS 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 For parents, there are additional questions: What parents told him and his brothers that repairs do I tell my children? When do I tell my children? needed to be made to the cord and things had to be done to take care of the lamp. Garry Teeter, a licensed professional counselor, National Board certified counselor and certified “Don’t over communicate too much information brain injury specialist and trainer in Bryant, Ark., that they can’t process or understand,” Teeter said. understands growing up in an MS family. Also, be aware of teaching moments, he said. His dad, Charles Teeter, was diagnosed with the When an MS symptom occurs is a good time to disease in 1954. Garry Teeter and his twin brother were born in 1955. MS was just part of life for them. sit down with the child and explain it. However, a good frame of mind at the time is key. If a child Now, Teeter works to help other families deal senses anger, then he may believe the parent is with MS. mad at him, not the disease. 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. 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, Ark. Children find their safety and security in their TOLL FREE NUMBER 1 800 344 4867 I 13 programs Memory Rehabilitation Research Project at the University of Tulsa Dr. Michael Basso of the University of Tulsa has received funding through the Pilot Research Program of the National MS Society to examine whether a memory rehabilitation program can help people with MS to function more independently. Although memory impairment is a common problem in people with MS that corresponds with challenges in their ability to manage day-to-day responsibilities, there are currently no systematic treatment programs to improve memory problems in MS. problems and methods of correcting them. While at home, they will practice the methods to improve memory function. After 12 weeks of weekly sessions, participants will complete another psychological examination to determine how they are functioning. Individuals will receive financial compensation for their time spent during the research. The proposed research will develop a standardized psychological intervention program to improve memory function in people with MS, incorporating multiple memory enhancement strategies that have been tested in previous research. After the treatment program is developed, it will be tested to determine its effects upon memory function and ability to manage daily responsibilities. Because this is an initial study, the pilot research will include only a small number of people with MS. If initial results show benefits of the treatment program, the research will be extended to a larger study; and if successful, the research will yield a treatment program that can be used by therapists who treat cognitive problems in people with MS. The researchers are interested in recruiting participants with memory problems for the treatment study. Participants will undergo an initial neuropsychological examination, and their memory will be evaluated. During weekly sessions, participants will discuss memory 14 I JOIN THE MOVEMENT: nationalMSsociety.org Individuals who are interested in participating in the study should contact Dr. Michael Basso at the University of Tulsa (918-631-3151 or firstname.lastname@example.org). Oklahoma Advocacy 2012: A Lot to Be Proud Of! By Claire Mitchell Thanks to the outstanding efforts by the Oklahoma Government Relations Committee members and dedicated MS Activists across the state, we are very proud to report the following achievements in Oklahoma advocacy for the first half of 2012: programs inspiration to the crowd, many of them first time advocacy participants, as they prepared for their visits to Capitol Hill. For more information on how to become an MS Activist, visit nationalMSsociety.org/MSactivist. • The 2012 Oklahoma Public Policy Conference (PPC) in February brought together 22 MS Activists from across the state to attend professional activism training and in-person meetings with state legislators. • MS Activists advocated in support of Continuity of Prescription Drug Coverage legislation (HB 2606), authored by Rep. Gus Blackwell. These efforts laid important groundwork for 2013, when work on this critical legislation will continue. • MS Activism leaders and National MS Society advocacy staff have created a Continuity of Prescription Drug Coverage coalition that includes organizations involved in health and human services from around the state. • Oklahoma GRC members and activism leaders travelled to Washington DC in March to represent Oklahoma at the National MS Society Federal Public Policy Conference. • During the Federal PPC, Channing Barker, who hails from Tulsa and was diagnosed with MS in 2006, spoke to attendees from across the US about her experiences in MS Activism, and encouraged them to realize the value of their participation. The wit, passion and enthusiasm in her comments was a great National MS Society 2012 Public Policy Conference: MS Activists Tom & Emily Teasdale and Ray Mack travelled to Washington, DC to meet with Oklahoma Congressional Leaders and ask for continued funding of MS Research and support for family care partners. TOLL FREE NUMBER 1 800 344 4867 I 15 Programs Volunteer Highlight – Gwen Kelley, Tulsa Volunteer Whether you see them or not at an event or around the office, volunteers contribute a great deal of their time and talents to further the mission of the Society. We’d like to highlight Gwen Kelley for her years of service behind the scenes: Years Spent Volunteering for the Society This year’s Bike MS marks her 10th year Volunteer Area Money Counter for Walk MS Tulsa and Bike MS Oklahoma Reason for Volunteering Her former boss had a connection to MS She loves it so much that she continues to help year after year The Best Part about Volunteering The people Her Biggest Accomplishment Gwen says, “Knowing that by volunteering, I am contributing to finding a cure.” Staff Says • She is our go-to person for mistakes • We do a happy dance every time she says ‘yes’ to volunteering • We notice and appreciate her dedicationshe only missed once when she had knee surgery To Gwen and all the other volunteers who serve year after year, THANK YOU! Gwen Kelley along with Denise Allen, Oklahoma staff member, in the room they do the money counting for Walk MS Tulsa. 16 I JOIN THE MOVEMENT: nationalMSsociety.org Connect to the Cause by Volunteering By Beth Snyder During walk season, I send e-mails and call numerous volunteers making sure that they feel prepared to serve the day of their event and tie up any loose ends. Unfortunately for me, most of these volunteers are a name without a face. One gentleman, though, made quite an impression on me with his words alone that when I did finally meet him face to face, I felt like I had known him for years. This gentleman in addition to volunteering was going to walk with his team. Overjoyed about their shirt design, he asked me if I would like to see a picture of it. I’m always impressed with how clever the shirts are that I definitely wanted him to share his with me. His shirt said (in orange, of course), “We don’t know how strong we are… until being strong is the only choice we have.” programs a great time. I was having a blast myself, but my day brightened even more- this gentleman gave me his team shirt to keep! I thanked him and we hugged as if we were old friends. I want to invite you to experience the overwhelming joy that comes from volunteering for a cause. It creates an opportunity to help in your community as well as the chance to build lasting connections with other volunteers and even those who benefit from your service. Like this man’s shirt said, we don’t know how strong we are until it’s our only choice, but when we come together to support one another or lend an extra hand, we’re even stronger. If you want to volunteer and help serve Oklahomans with MS, contact Beth Snyder at email@example.com or (405)488-1300. For more information, visit www.volunteerms.org. We exchanged a few more e-mails and he said something that washed away the stress of organizing event volunteer needs: “I am happy, proud, and honored to volunteer and raise money for our cause! I will always be here for the Society, as you all have been there for me! Thank you, again!” When I read things like the shirt and this man’s e-mail, they are so encouraging. His spirit is not broken and his attitude inspires the rest of us. When things happen to bring us down we have to pick ourselves back up. The day of the walk, I met this man at volunteer check-in and he greeted me with the biggest smile. I saw him again toward the end of the walk thrilled to hear that he and his team were having TOLL FREE NUMBER 1 800 344 4867 I 17 Research Hotter Days May Worsen Mental Task Ability People with multiple sclerosis often report worse symptoms when the weather is hot. A recent study concludes that hot weather may also worsen the ability to perform mental tasks in some people with MS. The research may help people plan activities and may improve the design of future clinical trials. Warmer weather tends to worsen many people’s neurological symptoms of MS. Research also suggests that relapses are more likely to occur in warmer months; some people may have more MRI-detected active MS brain lesions during these months. This study examined a possible link between outside temperature and the ability of people with MS to perform various mental tasks. Researchers compared 40 people with MS and 40 people without MS or any other condition that might have affected the results. Each participant was tested for the ability to process a mental task and for learning and memory. The average outside temperature on the testing day was recorded. The results showed that people with MS tended to perform worse when the weather was hotter than when it was cooler. People without MS performed equally as well regardless of the outside temperature. This study has several implications. Awareness of heat-related problems with mental tasks may impact lifestyle decisions; for example, whether to take a mentally-challenging college course in the summer or winter. The results also suggest that clinical trials involving people with MS should take temperature into consideration when designing the study and interpreting the results, especially when cognitive testing is used as a treatment outcome measure. 18 I JOIN THE MOVEMENT: nationalMSsociety.org Eye Movement Training Focuses on Improved Balance A controlled study suggests that a six-week balance and eye movement-focused exercise program improved balance, reduced fatigue, and reduced disability because of dizziness or disequilibrium in a group of people with MS. The effects lasted for at least four weeks following supervised training. Larger and longer studies are needed to determine how long the benefits last, and which people with MS would be most likely to respond to the program. The study by Jeffrey Hebert and colleagues at the University of Colorado, Aurora was partially funded by a pilot research grant from the National MS Society. This study is the first to examine the effects of an exercise program involving balance and eye movement training – or “vestibular rehabilitation” -- in people with MS to see if it improves both fatigue and balance. For this controlled study, 38 people with MS were divided into three groups: one group did not participate in an exercise program and only received normal MS medical care; one group participated in a general exercise program involving endurance and stretching; and one group participated in the vestibular rehabilitation program specifically designed to improve balance. The endurance and stretching exercises included bicycle riding and exercise designed to stretch various muscles. The vestibular rehabilitation program included balance exercises on various surfaces, arm movements while kneeling, head movements on a trampoline and while fixating on different objects, and ball catching while walking; the program also included three types of eye movement exercises. Exercise programs were performed for 60 minutes twice a week in the clinic; a daily home exercise program, consisting of a subset of exercises performed in the clinic, was also assigned to each participant. The exercise training programs lasted for six weeks. Effects on balance, fatigue, dizziness, depression, and walking ability were examined at the end of the six-week program and then four weeks after the program had ended. At the end of the six-week period, the group that underwent the vestibular rehabilitation program showed improved balance, reduced fatigue, and reduced disability due to dizziness or disequilibrium. Depression and walking ability were minimally improved. Four weeks after the exercise program ended, those in the vestibular rehabilitation program group continued to show benefit. Based on these preliminary results, balance and eye movement training may help people with MS who are experiencing fatigue and balance problems. Those wishing to explore this option should consult with their neurologists, local rehabilitation facilities or hospitals to see whether this type of training is available. Dallas and Houston Researchers Examine MS Triggers in Kids Investigators nationwide are recruiting children with early relapsing-remitting MS or CIS (clinically isolated syndrome, a single episode of MS-like symptoms), and children without MS or CIS for a four-year study to determine environmental and genetic risk factors that make children susceptible to developing MS. The study, funded by the National Institutes of Health, leverages the National MS Society’s support of the Promise: 2010 Pediatric Network of Centers of Excellence. Findings from the study should help researchers understand more about how MS begins in children; this better understanding can eventually be applied to adult forms of MS. Those under age 18 who had disease onset (MS or CIS) in the last two years may enroll in this study with the consent of their parents. Children without MS or CIS can enroll if they are 19 or younger and don’t have a demyelinating disease or an autoimmune disorder (except asthma). Texas sites that are enrolling participants include the MS Clinic for Pediatric Neurology at Texas Children’s Hospital in Houston and The University of Texas Southwestern Pediatric Demyelinating Disease at Children’s Hospital in Dallas. For further information on this study, contact Janace Hart with the University of California – San Francisco at 415-514-2476. For more information on these and other MS research advances, visit the Society online at nationalMSsociety.org and click the Research tab. Self-Help Groups Self-help groups include persons with MS, spouses, adult family members and friends. Please call the group leader or community contact for information. Ardmore: Linda, 580-223-2427 Duncan: J’Nell, 580-255-0886 Kassie, 580-475-0576 David, 580-252-2439 Oklahoma City: Quail Creek Group Jody, 405-755-5756 Women’s Luncheon Group Janice, 405-943-1103 ATOMS Joe, 405-478-7990 Tom or Emily, 405-607-2861 Stillwater: Connie, 405-372-8617 Tulsa: PACE Dave, 918-645-0880 Sandra, 918-481-9928 Don, 918-355-9809 TOLL FREE NUMBER 1 800 344 4867 I 19 NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Tulsa, OK Permit # 157 Oklahoma Chapter National Multiple Sclerosis Society 4606 East 67th Street, Suite 103 Tulsa, OK 74136 CHANGE SERVICE REQUESTED POSTAL CARRIER – DATED MATERIAL PLEASE DO NOT DELAY Save the Date August 16 Smarty Pants Trivia Night (OKC) 16 Regatta Launch Party (Tulsa) 17 Uncorking the Cure for MS (Tulsa) 25 Newly Diagnosed program September 8 Close/MS Regatta (Keystone Lake) 15-16 Bike MS Oklahoma November 9-11 Getaway Weekend (Tulsa) WALK MS Events: October 6 – Stillwater October 6 – Muskogee