M OV I N G TO WA R D A W O R L D F R E E O F M S
WALK MS: Walker Spotlight – Team Squadra Felicia By Rachel Klenda Registration for spring Walk MS events is now open! In 2011, the Walk MS Oklahoma events raised nearly $400,000 for programs and services for people living with MS. Join the Walk MS movement in 2012 and encourage others to join the Movement as well. “In the past four years our ‘big’ Italian family (I have 11 siblings) has suffered from the loss of two beloved family members,” said Emily Prichard-Stangl, Walk MS Oklahoma City team captain. My sister, Felicia Hare, who has been fighting MS for 14 years, has been the backbone of our family during this trying time. Other than my mother, I have never witnessed the kind of strength like Felicia has. In 2010 I decided it was time for me to fight for my sister Felicia. So this is how Squadra (team in Italian) Felicia was formed! With the help of my other two sisters, Clare and Elizabeth,
Some members of Team Squadra Felicia at Walk MS Oklahoma City 2011. niece Kristin, other family members and wonderful, loving friends, we have joined the movement!” Thank you, Emily for your inspiration! Join us at one of the following Walk MS sites this spring and Join the Movement. Continued page 3
Walk MS: Corporate Spotlight PAGE 3
2012 Bike MS: The Mother Get to Know Dr. Farhat Road Ride PAGE 7 Husain PAGE 12
Adaptive Gardening PAGE 14
MSCONNECTION is published by the National Multiple Sclerosis Society, Oklahoma, Building 7, Suite 103, 4606 E. 67th St., Tulsa, OK 74136-4950. 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 email@example.com Website www.nationalmssociety.org/ok Communications Manager • Brandi Davidson Moore Strategic Philanthropy Director • Lucy Fraser Development Manager • Cristy Racy Development Coordinator • Rachel Klenda 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 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.
Save the Date for the 11th Annual Uncorking the Cure for MS By Rachel Klenda Please join us for our 11th Annual Uncorking the Cure for MS Live and Silent Auction benefiting the National MS Society: Oklahoma. This event will be held Friday, Aug. 17 at the new Lambrusco’z To-Go event venue in downtown Tulsa. Special thanks to returning Uncorking chairs, Debbie and David Carder, and our fabulous event committee members. We thank our event patrons and donors for all your support. For more information please contact Rachel Klenda at 800-344-4867, option 2, ext. 35124, or firstname.lastname@example.org.
Save the Date: 6th Annual
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
Thursday, Aug. 16 • 6 p.m. to 9 p.m. Oklahoma History Center, Oklahoma City For more information, contact: Lucy Fraser at 405-488-1300 or email@example.com 2 I JOIN THE MOVEMENT: nationalMSsociety.org
WALK MS: Corporate Spotlight – Newby-Vance Mobility
By Cristy Racy In 2011, more than 4,500 Walk MS participants, sponsors and volunteers Joined the Movement to help create a world free of MS. The success of Walk MS events depends greatly on the support of the local community. The Society thrives on the success of building strong relationships with corporate partners, such as Newby-Vance Mobility Sales and Service. Located in Guthrie, Okla., Newby-Vance serves as a comprehensive mobility and transportation sales and service center. The company specializes in meeting the individual transportation-mobility related needs for the physically challenged. Newby-Vance opened in 1996 and became a corporate sponsor for Walk MS Oklahoma City in 1997. One of their first customers had multiple sclerosis, and encouraged Jim Seeger-Newby to become involved with the Society. Since then, Newby-Vance has participated in a variety of
Jim Seeger-Newby (right) along with a client. ways with the Society by donating vehicles for event support, participation in Getaway Weekend and event sponsorship. With more than $20,000 contributed in sponsorship over 16 years, Newby-Vance is a valued corporate partner of the National MS Society. We are proud to recognize the amazing contributions and support from Newby-Vance Mobility Sales and Service!
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Lawton: Saturday, April 14: Lawton High School Tulsa: Saturday, April 21: Veterans Park Oklahoma City: Saturday, May 5: Oklahoma City Zoo Ardmore: Sat., May 19: Ardmore Regional Park
Register at walkMSok.org or call 800-344-4867, option 2. Visit our website for more information on starting a Walk team, fundraising and online tools. We come together to make a bold statement: We will achieve a world free of MS!
2012 Elite Teams Oklahoma City • DEBBIE’S 79’ERS • Jami’s Dashers • Jasmine • Josh’s Winning Team • Love for Laura • Mustard Seeds
Lawton • Team Trimpa • The BSers • Trace Your Steps
Oklahoma City (cont.) • Not MS’n Around • Squadra Felicia • Team Pardee • Ultrathin Ardmore • Noble Energy Inc • Quick Draw’s
Tulsa • Annette’s Amazing Angels • Heritage Hounds
Tulsa (cont.) • Michelle and Martha’s Motivators • Newfield Exploration • PACERS • Wildhearts
TOLL FREE NUMBER 1 800 344 4867
Out in the Community and on the Frontlines: MS Ambassadors & Community Health Representatives Online Training scheduled for Saturday, June 9
For the awareness-focused individual, there are two opportunities to get involved with the National MS Society: MS Ambassadors and Community Health Representatives. Both positions promote to the community the availability of programs and services, the strides being made in research, and the opportunities to be part of the MS movement. Ambassadors serve in a general awareness capacity, attending health fairs and making presentations to organizations and businesses. The Community Health Representative has a more targeted approach, building relationships with health care providers ranging from physician assistants to neurologists to social workers and all those in between.
The training session will be held online from 10 a.m. to 12 p.m. To participate, please RSVP so the Society can contact you with the call-in and web link information. Please note: This training is replacing the MS Ambassador Training originally scheduled for March 3 in Tulsa, Okla. If you want to help raise awareness, sign up today. For more information on becoming an MS Ambassador, contact Beth Snyder at firstname.lastname@example.org or (405)488-1300. For more information on becoming a Community Health Representative, contact Lee Kilborn at email@example.com or (469)619-4703.
Save the Date: 33rd Annual Close/MS Regatta By Rachel Klenda
available on multiple levels! Special thanks to Chairman Mark Lobo, members of the Windycrest Sailing Club and the terrific event committee members.
The 33rd Annual Close/MS Regatta is scheduled to set sails on Saturday, Sept. 8 at the Windycrest Sailing Club on Lake Keystone. This is the perfect opportunity for you, your family, your company For more information contact Rachel Klenda at and friends to join the crew in their efforts to 800-344-4867, option 2, ext. 35124, or visit the create a world free of MS. Sponsorship is website at nationalmssociety.org/ok.
4 I JOIN THE MOVEMENT: nationalMSsociety.org
Art Bike Returns for Another Year By Brandi Davidson Moore We are thrilled to announce that Art Bike Tulsa with presenting sponsor SCFM Compression Systems, Inc., will be held in conjunction with Mayfest International again this year. Art Bike Tulsa is a truly moving installation of colorful, uniquely-designed bicycles to raise awareness for multiple sclerosis
and the Society. In addition to being at Mayfest, the Art Bikes will be on display at the Tulsa International Airport beginning May 22. Oklahoma’s top artistic minds are transforming used, donated bikes into vibrant works of art to help visualize a world free of MS.
When and where: Art Bike Tulsa Rolling out the first of May Kennedy Building 321 S. Boston Ave., Tulsa, OK For any questions, please contact Brandi Davidson Moore at 918-488-0882, ext. 35113 or firstname.lastname@example.org.
What are You Saying on Facebook? By Brandi Davidson Moore On February 14, we asked You to share with us what you love about your loved ones. The responses were so sweet we had to share. We also randomly selected one lucky winner from the responses to receive a prize. Here are some of the responses (randomly selected): • Brenda Rumsey – “I have a husband that has loved me for 38 years, a son that is a joy to be around, and three grandsons that I adore and get to be around every day. I am so blessed.” • Dustin Smithson – “I love my wife who has
never stopped loving, and taking care of me despite all medical things she is facing. I am blessed to have three loving kids who love unconditionally.” • Karrie Rogers-Buck – “I love not only my husband who has stuck by my side through everything, but my family who is always there to listen, give support and lift my spirits. I also love that my 2 kids, ages 7 & 4, try so hard to understand what’s going on with mommy and try so hard to help me out and do things to try and make me feel better. I love each and every one of them for loving me.” Continued page 6 TOLL FREE NUMBER 1 800 344 4867
Welcome New Interns
Shandie Beckwith • Shandie Beckwith joined the Tulsa office as the Walk Logistics intern in January. • She is currently a senior at the University of Tulsa pursuing a degree in accounting and will graduate in May. • When not at the Society, she is working at the coffee shop on campus, hanging out with friends or reading. She is a member of Phi Eta Sigma Honor Society, Kappa Delta sorority, and the Orientation Leaders. • She is the proud owner of the cutest schnauzer puppy in the world, Baxter. • “I have always thought that a life given in service is a life well spent. Being an intern at the Society has allowed me a glimpse into the non-profit world. I am daily reaching out to our local community for support so that one day we will see lives free of MS! What could be better than that?!”
Jonnah Ogle • Jonnah Ogle joined the Tulsa office as the MS Expo intern on February 2. • She is also a cheerleader for the Tulsa Shock women’s basketball team. • She is currently a junior at Oral Roberts University pursuing a degree in public relations and minor in business. • “I have desired to work with a non-profit organization for some time now. I did not know much about multiple sclerosis before I applied for the internship, but I quickly became very intrigued by the Society’s goal and mission. I feel very honored to get this position and cannot wait to see what is in store for me.”
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• Sherri Kyle – “I love my family who is always there for me no matter what. I also love my boyfriend who makes me laugh every day. Everyone should laugh every day it feels so good.” • Connie Calaway – “I Love My Husband, my friend, my care taker who does virtually everything for me but most of all keeps me going 6 I JOIN THE MOVEMENT: nationalMSsociety.org
with his words and actions of constant support! He is the one who gives me strength to want to stay active and healthy!” Please become a fan of our Facebook page (National MS Society – Oklahoma Chapter), if you’re not already. We keep it current with updates and the latest information on Society events, activities, programs and research.
Registration is Open for the 2012 Bike MS: The Mother Road Ride By Cristy Racy What a difference a year makes! March 2011 we were still thawing from one of the coldest and snowiest winters on record. This winter the diehard cyclist could ride almost every day. Since spring is here, it is time to register for the best supported ride in Oklahoma. Bike MS: The Mother Road Ride with presenting sponsor Samâ€™s Club is set for Sept. 15-16.
as little as you want since there is plenty of onroute support to give you a lift. Please visit our new and improved website at bikeMSok.org for further details on the ride along with great information on fundraising, new cyclist information, training rides, overnight accommodations and much more. See you this September!
The scenic route will again cover most of the historic Route 66 between Tulsa and OKC. Cyclists begin the 140 mile trek to Oklahoma City from downtown Tulsa with rest stops every 10-12 miles. Day one ends in Chandler where the overnight will have new festivities all day long to help make great memories. After a fantastic pancake breakfast, the cyclists lineup Sunday morning for day two and finish the journey at the state capitol building in Oklahoma City. (The finish line location is still to be determined pending a decision by Governor Fallin on location of Septemberfest.) Bike MS is the largest fundraiser to assist Oklahomans living with MS and provide funding for research so that one day we may be able to live in a world free from MS. Participating in Bike MS is a fantastic way to meet new people that share common goals of raising funds for the great cause and participating in a sustainable, healthy activity. Please spread the word to family, friends and co-workers to join the fun and raise money for MS. For the new cyclist, the beauty of this ride is you donâ€™t have to finish the whole thing. Ride as much or
Bike MS Cyclist, Mike Paston TOLL FREE NUMBER 1 800 344 4867
Free From Falls: A Comprehensive Fall Prevention Program for People with MS
When: April 12, 19, 26 and May 3, 10, 17, 24, 31 From: 4:00 – 5:15 p.m. Location: OMRF Fitness Center (Oklahoma City) Registration Fee: $25 Studies indicate that falls are quite common among people with MS and are often associated with injuries and negative impact on quality of life. The National MS Society has developed a new fall prevention program: • An 8-week curriculum • Designed for people living with MS who are ambulatory but who may be at risk for falling. • Discussion, exercise, group and individual activities are elements of this engaging format where participants will learn about: fall risks, tips and strategies to reduce risk for falling and exercises to enhance balance and safety. • A supportive group atmosphere and expert instructors in the field of rehabilitation, health and wellness will help each participant develop a personal plan to maximize safety. For more information and to register for the program, contact Jennifer Philp at 918-488-0882, ext. 35112 or email@example.com.
MS Entrepreneurs Grant Deadline – April 15 Applications for the upcoming MS Entrepreneurs grant cycle are due by April 15, 2012. For more information, and to obtain an application, visit www.MSEntrepreneurs.org. The deadlines throughout the rest of the year for submission are: April 15, July 15 and October 15. The National Multiple Sclerosis Society’s MS Entrepreneurs program rewards creative, innovative individuals who are passionate about developing new ways to improve the lives of people affected by multiple sclerosis. The MS Entrepreneur project launched in 2008, with grants awarded for projects in five different categories, all with the purpose of meeting an unmet need in the MS community. 8 I JOIN THE MOVEMENT: nationalMSsociety.org
Anyone with the passion and time to identify a need and develop a solution can be an MS Entrepreneur. Applications for MS Entrepreneurs grants are accepted year-round and are reviewed quarterly (next review deadline is April 15, 2012) by the volunteer engagement team. Please fill out our on-line application at MSEntrepreneurs.org. Included in the application are the criteria for selection and instruction on the application process. For more information, visit MSEntrepreneurs.org. MS Entrepreneurs is managed from the National MS Society’s Houston office. Applications are accepted from those in Texas, Louisiana, Arkansas, Oklahoma and New Mexico. MS Entrepreneurs is made possible by Kanaly Trust.
Battle of the Bands to ROCK OUT at Walk MS: Tulsa By BJ McBride Each year, the National MS Society: Oklahoma’s YAMS (Youth Against MS) program hosts an event called the “YAMS Battle of the Bands.” This is an awareness event where five to seven teenage (unsigned) bands are selected to compete against each other as we raise awareness of MS to the youth community.
about their performance from a celebrity panel of judges. The deadline to register a band is Friday, March 30 at 4 p.m. However, if you are seeing this for the first time, and your band is interested in performing, contact us as it may not be too late to register.
Going into its fourth year, we are trying something new. As you may know, the Walk MS Tulsa is celebrating its 25th Anniversary! So, what better way to celebrate than to battle out MS. The 2012 YAMS Battle of the Bands will be held on Saturday, April 21 at Veteran’s Park in Tulsa, Okla., during Walk MS Tulsa, from 10 a.m. to 1:30 p.m. The bands will be competing for a “Judges Choice” and a “People’s Choice” award. In addition to prizes, bands will be playing for the more than 1,500 participants attending the Walk MS event and will receive constructive feedback
For more information, contact BJ McBride at 918-488-0882, ext. 35121 or firstname.lastname@example.org.
Join us at the MS Expo The National MS Society is proud to present the MS Expo at Walk MS – Lawton (Sat. April 14), Tulsa (Sat. April 21), and Ardmore (Sat. May 19)! The MS Expo is a fun and engaging way to learn more about local organizations that provide resources for individuals living with MS! Entrance into the MS Expo is free, but Walk MS registration is required. Participants are strongly encouraged to fund raise for Walk
MS. The MS Expo encourages participation from those who want to attend the Walk MS and remain at the site while others are completing the route. Doors to the MS Expo will open at 8:30 a.m. Dogs are allowed. If you are interested in being a vendor at the MS Expo, please contact Jonnah Ogle, MS Expo intern, at 918-488-0882, ext. 35125, or email@example.com.
TOLL FREE NUMBER 1 800 344 4867
Don’t Let Inadequate Insurance Deny You
Co-pays. Deductibles. Insurance Premiums. Call them what you will, they often stand between access to healthcare or life-giving medications and the patients who desperately need them. The Assistance Fund has recently added a Premium Assistance Program for patients living with Multiple Sclerosis. The Assistance Fund is a leading 501(c) 3 nonprofit organization that helps to make advanced therapies and diagnostics available to the underinsured. More than just a funding resource, The Assistance Fund provides a continuum of services for those with chronic and life threatening illnesses. Options exist for patients who suffer from chronic or life-threatening disease to access health insurance coverage. However, many
individuals still struggle with the cost of such coverage. In an effort to truly make such insurance accessible, The Assistance Fund has added premium assistance to their portfolio of patient services. Help is available for individuals with MS who qualify under program guidelines to the extent that funds are available. Thanks to the generosity of donors, they are able to offer another form of financial assistance to patients living with MS. Their premium assistance program complements the co-pay assistance program services already being offered. To apply for assistance, please contact The Assistance Fund at 855-263-1772 or apply online at www.assistfund.org.
On your tax return…
help create a world free of MS. This year, people in Oklahoma can make a mark to create a world free of MS. While doing your 2011 income taxes, please simply check a box on line 12 of Schedule 511 G to make a charitable contribution to the National Multiple Sclerosis Society. Each contribution will go directly toward MS research, programs and services that support the over 24,000 people in Oklahoma affected by MS. A small mark will make a big difference, in the movement toward a world free of MS. Contact the National MS Society — Oklahoma or your tax preparer for information. nationalMSsociety.org | 1.800.344.4867 10 I JOIN THE MOVEMENT: nationalMSsociety.org
Students & Teachers Coming Together for MS By BJ McBride Believe it or not, MS can have an impact on more than just a family, friends, etc. It can impact an entire school! Recently, a teacher from Ripley Public Schools contacted the Society about conducting different activities at their school during MS Awareness Week (MSAW). Being the Programs and Services Coordinator involved with Youth Programs, I was excited at their willingness to get involved and create MS awareness in their school and community! Their schedule of events started on Monday, March 5 and continued through Thursday, March 15. You might be wondering, “What are they doing to celebrate MSAW?” Well, their Elementary students held a “Penny Wars” fundraising contest, the winning class will have a sucker party. Their Middle and High School students also did “Penny Wars” for a pie eating contest.
And that’s not all! They had various activities like an “Orange out Day”, a “Rock & Roll dress up Day”, a bowling event, a staff vs. HS student’s basketball game; and the final activity they hosted was their own in-school Walk MS event! What fun and creative ways to create MS awareness! Even though “MS Awareness Week” comes once a year, there is an opportunity to create MS awareness year-round! If there are youth in your family or community looking for ways to get involved, reach out to us, we’d love to help you get started and hear about your plans! Like us on Facebook: www.facebook.com/ OKYAMS For the Tulsa area, contact BJ McBride at 918488-0882, ext. 35121 or firstname.lastname@example.org. For the Oklahoma City area, contact Beth Snyder at 405488-1300, ext. 35201 or email@example.com.
Impact the Community: Volunteer By Beth Snyder As the year progresses, many of us fall away from the goals or resolutions we set for ourselves at the onset of the New Year. We have big dreams, but unfortunately many of us also have unrealistic expectations, which end up discouraging us. What if we approach creating a resolution differently? Instead of focusing so much on our individual successes how about we focus on community success? Volunteering provides a unique opportunity to congregate with others around a cause that we all want to advocate for. After all, when we give back and support others we in turn feel uplifted and accomplished. New volunteer, Chris DeLaCruz of Norman, explains why he decided to get involved: “Volunteering and giving back to the community is not just an opportunity. The community
provides us with great amenities, giving back to it is really an obligation, but foremost a privilege.” So, let’s volunteer. Tailor your commitment to be attainable. Don’t set the bar too high. Volunteer as often as you can and you will be amazed by the lasting impact. Need an opportunity to get started? Join our team of outstanding volunteers for an upcoming Walk MS event, knit an afghan for patients at the MS Center, or sign up to spread awareness about multiple sclerosis as an MS Ambassador or Community Health Representative. Any contribution, big or small, drives our passion to create a world free of MS! If you want to volunteer and help serve Oklahomans with MS, contact Beth Snyder at firstname.lastname@example.org or (405)488-1300. For more information, visit www.volunteerms.org. TOLL FREE NUMBER 1 800 344 4867
Getting to Know Dr. Farhat Husain, MD
It is our honor to introduce to you Dr. Farhat Husain, MD. She is a neurologist with the OMRF (Oklahoma Medical Research Foundation) Multiple Sclerosis Center of Excellence in Oklahoma City. She joined the MS Center when it opened its doors in March 2011.
Electrodiagnosis, Clinical Research in MS, and Neuroimmunology.
Fun Facts: She is married to an attorney from Oklahoma and says that her passion is gaining all sorts of knowledge, reading literature in her spare time and travelling to other countries. Her Dr. Husain sees all new patients to the clinic and father worked for the United Nations so she is very excited and passionate about her work. travelled and saw a lot of East Africa while she When asked what has been the best part of was in college. “I enjoy meeting scientists and joining the clinic with Dr. Gabriel Pardo, she physicians from other nations. I also like to take stated “the intellectual environment is courses overseas—spent a summer at Oxford stimulating me to do research of my own. I have a few years ago studying known Dr. Pardo since he was a trainee in the Shakespeare,” neurology department—the best thing about my said Dr. Husain. relationship with him is mutual respect and the fact that I am seeing most of the new patients and building a great practice.” Prior to working at OMRF, she practiced at the Stillwater Neuroscience Clinic, Norman Clinic, Inc., and Southwest Neurological Associates in Oklahoma City. Her medical experience also includes military service as a neurologist at Walter Reed Medical Center in Washington, D.C. and Brooke Army Medical Center in San Antonio, Texas. Dr. Husain’s training has included Fellowships in Electromyography and
Opportunities for Giving, Sharing and Helping Are you a good listener and enjoy talking with people? Do you have a computer with internet access? Are you a seasoned writer interested in sharing your talents? If you answered “yes” to any of these questions, we have volunteer opportunities for you! Currently, the Society is interviewing for two volunteer positions across the region: Client Relations Specialist and MSConnection Contributing Writer. Client 12 I JOIN THE MOVEMENT: nationalMSsociety.org
Relations Specialists follow up with recently diagnosed people requesting support and information from the Society. The Contributing Writers will write articles for the MSConnection Magazine using information from event constituents, volunteers, and people living with MS. To learn more about these volunteer opportunities, contact Beth Snyder at beth. email@example.com.
MS Center of Excellence Volunteer Opportunity Do you live near Oklahoma City and wish you had an opportunity to volunteer regularly to create a world free of MS? Hereâ€™s your chance. The MS Center of Excellence at the Oklahoma Medical Research Foundation (OMRF) has launched a new Volunteer Program. They are looking for enthusiastic and dedicated volunteers to greet and assist visitors of the
MS Center, perform light administrative duties, and help with any other invaluable tasks. Fill out an online interest form at www.omrf.org/how-you-can-help/volunteer/ or e-mail them at firstname.lastname@example.org for more information.
National Multiple Sclerosis Society License Plate COST: $18.00 original or replacement $16.50 renewal But there are a few rules to be aware of: 1) This special plate registration is in addition to, not in lieu of, your regular registration (i.e. standard license plate). Your regular registration must be kept current at all times. Failure to renew the regular registration in a timely manner may result in a delinquent registration penalty and/or possible law enforcement citation. 2) Once a special license plate has been assigned to an applicant, the applicant shall have priority to such license plate for succeeding years, provided a timely paid application for renewal is submitted. To insure that you receive a renewal application each year, please notify the Oklahoma Tax Commission of any change in your address. 3) A special license plate is to be displayed on the rear of the vehicle for which it is issued. The regular license plate may be kept inside the vehicle and produced upon request by law enforcement.
4) A special license plate may be transferred to another vehicle upon the ownerâ€™s submission of a completed Request to Transfer Form (OTC Form 783-A) to the Motor Vehicle Division, Special License Plate Section. This form may be obtained from your local tag agency, through the Oklahoma Tax Commission website at www.tax.ok.gov, or from the Oklahoma Tax Commission. Oklahoma Tax Commission Motor Vehicle Division Special Plate Section 2501 North Lincoln Boulevard Oklahoma City, OK 73194-0013 Telephone (In State toll free): 1-800-522-8165, extension 1-2468; (Direct) (405) 521-2468 www.tax.ok.gov TOLL FREE NUMBER 1 800 344 4867
living with ms
THE DIRT ON ADAPTIVE GARDENING
ledge or tabletop you can roll up to.” Reiser points out that people need little more than a patch of ground to get started—and that patch of ground can even be in a container. Nowadays, there are few limits to what can be grown in pots. “Breeders have come up with plants that are compact—and containers need less weeding,” Reiser points out. A garden open to all Enabling Gardens in Angleton, Texas, south of Houston, focuses on containers and raised beds, according to Cynthia Leonard, one of two dozen active volunteers. “We welcome groups and individuals, anyone who wants to learn how to do accessible gardening,” she says.
Staci, diagnosed in 1985
Gardening is one of the most popular hobbies in the United States, one that can beneﬁt people both mentally and physically, as well as provide fresh and healthy food. “Gardening gives me control over something in a situation where I don’t always have control,” says Laurie Reiser, diagnosed with MS in 2003. “No matter where you live, or who you are, you can garden.” Reiser is a Colorado Master Gardener who teaches adaptive gardening in the western part of the state through the local extension ofﬁce of Colorado State University. “Adaptive gardening is simply about creating your own space,” she emphasizes. “There are lots of reasons to adapt. You can put a garden at your height—on a patio, balcony, railing, steps, cinder blocks, window
14 I JOIN THE MOVEMENT: nationalMSsociety.org
Participants learn how to use rain barrels and raised beds, and to garden most suitably for their climate. The garden has 18 planter boxes of different sizes, some of which “have a horizontal board across the top where people can sit and work on the bed.”
Lettuce at Enabling Gardens
living with ms
a stool or folding chair on a deck, or under a tree, umbrella or arbor. Wear a hat, gloves and a cooling vest, or carry a spray bottle ﬁlled with cool water. (Call 1-800-344-4867 for information about cooling resources or visit www.msassociation.org/programs/cooling.) Set a timer to remind you when to take a break. Ergonomic gardening tools, such as add-on handles for trowels or extendable hoes, can help make gardening tasks easier. Go to www. abledata.com and search for “garden tools” to get an idea of what’s available. Laurie Reiser (left) and volunteers transfer plants to a raised bed.
It also features an A-frame trellis called a “cattle panel” that vines, squash and cucumbers grow on. “Someone in a wheelchair can roll under it and reach right up and pick fruits and vegetables,” says Leonard, who was diagnosed with MS in 1997.
Reiser suggests enlisting a buddy, such as a friend or volunteer from a Scout troop or 4-H club, to help with tasks like hauling bags of potting soil. Local community gardens, botanical gardens or garden clubs may also offer communal space and resources. Search online for barrier-free, adaptive or accessible gardening or ask your public library if they have any books on the topic to get an idea of what’s possible. And then in a few months, enjoy the fruits—literally—of your labors!
Leonard’s been gardening for seven or eight years, starting with ﬂowers in pots, then moving on to tomatoes. She and her husband “picked beets and mustard greens in January, and we had fresh tomatoes for Christmas dinner,” she says. “It sure is nice to be able to step outside and get good fresh vegetables. I know how they’ve been grown and what’s been put on the soil. Gardening gives me a sense of peace and well-being.” Get prepared Gardening is a “hot” activity in more ways than one. To beat the sun, do outdoor work early or late in the day. Set up a shady rest area with
TOLL FREE NUMBER 1 800 344 4867
KEEPING UP WITH HEALTH REFORM BY KIMBERLY CALDER
With various provisions of the Affordable Care Act (ACA) kicking in and legislative challenges to the ACA, it can be hard to keep up—particularly on the state level. Here are some Society-vetted sources for reliable and up-to-date information about the impact of the ACA in our area. The National Conference of State Legislatures at www.ncsl.org has a whole section on Health Reform that includes a series of brief reports on a variety of ACA-related topics. The site also includes a searchable database, updated every Tuesday, of state legislation related to the ACA. Search 2012 legislation by state, topic, keyword, status or primary sponsor. The National Academy for State Health Policy at www.statereforum.org offers an online network called State Refor(u)m, which enables direct connection and informationsharing between policymakers, activists and others working on health reform implementation. The federal government’s ofﬁcial site on the ACA at www.healthcare.gov is the best source for hard numbers on the ACA. Click on “The Healthcare Law and You,” then “Implementation 16 I JOIN THE MOVEMENT: nationalMSsociety.org
Resources” to view an interactive map of the U.S. Here you can click to see, for example, how many young adults are now insured in each state, the number of residents who no longer face a lifetime limit on their insurance coverage, the amount of new funds for community health centers and more. To follow changes in ACA legislation and other public policy issues that speciﬁcally affect people with MS, check in with Society MS Activists at Twitter @MSActivist and visit www. MSactivist.blogspot.com. The Society also regularly updates Frequently Asked Questions on its website at www.nationalMSsociety.org/ ACAFAQ, as more is understood about how the law could impact people with MS. Kimberly Calder is the Society’s director of Federal Health Affairs and Insurance Policy.
MS ACTIVISTS HELP ADD MS TO COMPASSIONATE ALLOWANCES LIST Thanks to hard work by Society activists, an aggressive form of MS now qualiﬁes for the Compassionate Allowances Program, which expedites the review of Social Security Disability Insurance (SSDI) applications at the Social Security Administration. Thanks to passionate and articulate testimony by MS Activists Dr. John Booss and Yvonne Brown at a March 2011 Autoimmune Hearing held by the Social Security Administration, “malignant MS” was added to the Compassionate Allowances List, allowing people with more aggressive forms of the disease to qualify for SSDI more quickly.
SURVEY SAYS WALKING ISSUES IMPORTANT TO ADDRESS
Susan Cohn-Child, diagnosed in 1995, walks with son Zach
Seventy percent of people with MS who have difficulty walking see that as the most challenging aspect of managing their disease, according to a recent survey sponsored by the National MS Society and Acorda Therapeutics, maker of Ampyra, a drug intended to improve walking.
Respondents to the survey reported that problems with mobility restrict their daily activities and affect their emotional and financial well-being. Some 60% of adults with MS who experience difficulty walking have fallen; for a third of them, a fall resulted in an injury.
RESULTS IN FOR POTENTIAL MS THERAPIES • In a two-year Phase III trial, the oral MS therapy BG-12 significantly reduced—by up to 51%— the average number of annual MS relapses. More than 1,400 people with relapsingremitting MS participated in the study. BG-12 is thought to inhibit the immune cells and molecules that are involved in MS attacks on the brain and spinal cord. This study should help to define further the safety and promise of BG-12 as a potential therapy for relapsing MS. • The experimental intravenous MS therapy alemtuzumab significantly reduced relapse rates and the worsening of disability in a two-year Phase III study that compared alemtuzumab to Rebif. The study, called CAREMS II, involved 840 people with relapsingremitting MS. The FDA has fast-tracked alemtuzumab, which should speed up future review.
• A study of 324 patients comparing the MS oral therapy teriflunomide with Rebif found no significant difference in the numbers of While 65% of those surveyed reported walking participants in each group who experienced difficulties or trouble with balance, 40% events defined as treatment failure. “rarely or never” discussed the issues with their Teriflunomide is thought to prevent damage doctor. to the nervous system by immune cells. A previous phase III trial was more successful and “Clearly we need to encourage and empower three others are ongoing. The FDA is reviewing people with MS to discuss walking impairment an application for marketing approval of with their doctor, including newly diagnosed teriflunomide. patients who may be experiencing only mild problems with walking or balance difficulties,” To stay current on MS therapies in the pipeline said Nicholas LaRocca, PhD, vice president for for FDA approval, sign up for MS eNEWS at Health Care Delivery and Policy Research at www.nationalMSsociety.org/signup. the Society.
TOLL FREE NUMBER 1 800 344 4867
ways to give
DO IT YOURSELF FUNDRAISING GETS BOOST
DIY event, MS Cup Race, Minnesota Chapter
A family in Florida who says they like to “eat, drink and throw a good party” hosts a casino night on behalf of the National MS Society. A fellow in Minnesota sponsors an annual fourday event for four-wheeling enthusiasts to ride on trails in the middle of the woods. Other folks have hosted golf tournaments, sailing races, dinner parties, bake sales, hoops for hope basketball and even a strongman competition, a bike ride in high heels and a tabletop decorating contest. A Wall Street–based poker tournament raised over $850,000, but a $200 bake sale is equally appreciated. Diverse as they are, these events are all Do It Yourself (DIY) Fundraising, where people committed to raising awareness and money for the MS movement are limited only by their imagination. DIY fundraising has been going on a long time, but what’s new is an online tool at www.doityourselfms.org, “which gives the same resources as we give to Bike MS and Walk 18 I JOIN THE MOVEMENT: nationalMSsociety.org
MS participants,” according to Rachael Nuwash, DIY project manager for the Society. These resources include a comprehensive toolkit that covers everything someone who is organizing a DIY event needs to know: establishing a timeline, budgeting, how to make an event memorable, where to hold it, publicity, ﬁnding sponsors and volunteers, tips for the day of the event, FAQs and much, much more. People can ﬁnd out what lessons others have learned and how to create a committee—a core group that will support the effort and whose talents can be utilized. (For example, a friend who’s a graphic designer can design the invitation.) The toolkit also includes ﬂyers, badges and email signature images to download. “The online tools are very intuitive,” said Nuwash, so organizers can easily and quickly reach out to friends, family members and co-workers.
DIY event, Kids for a Cure, New Jersey Metro Chapter
“The people who like to organize do-it-yourself events are going to do it no matter what,” Nuwash noted. “Their commitment, creativity and intense connection to the Society are like no other. In turn, we’re committed to supporting people who want to do something now.”
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. Group Meeting Info: Ardmore: Linda, 580-223-2427 Claremore: Dottie, 918-625-1883 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
Coming this Fall: Getaway Weekend 2012 We know you are wondering…what will the theme be this year…where will we be headed and what FUN activities are in store for us? All of these things and much more are being worked on at this very moment! We will soon be able to reveal the date, location and theme for this year’s getaway, but what we can tell you is that it will happen this fall and it will be another FABULOUS Getaway!
Tulsa: PACE Don, 918-355-9809, Sandra, 918-481-9928 & Dave, 918-645-0880
Community Contacts: Atoka: Kim, 580-889-7307
Mustang: Tena, 405-306-7349
Bristow: Dusty, 918-367-5203
Norman: Rebecca, 405-632-2334
Enid: Janet, 580-233-7973
Okmulgee: Karena, 918-752-0048
Lawton: Cynthia, 580-595-7076 Mannford: Gail T., 918-865-8212 Gail S., 918-865-5001
Please call the noted group leader or community contact for further details or information.
For those who have never attended a Getaway Weekend in the past, you won’t want to miss this year’s event! It 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. Once you have attended we know you’ll be back….so make plans to join us this fall and we’ll soon be revealing all the details! TOLL FREE NUMBER 1 800 344 4867
NON-PROFIT ORGANIZATION U.S. POSTAGE PAID Tulsa, OK Permit # 157
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 April 3 21
MS Style Movement YAMS Battle of the Bands – held at Walk MS Tulsa
May TBD 30
Art Bike Launches World MS Day
June TBA TBA
MS Family Day MS Scholarship Luncheon
WALK MS Events: April 14 – Walk MS Lawton April 21 – Walk MS Tulsa May 5 – Walk MS Oklahoma City May 19 – Walk MS Ardmore REMINDER: Taxes Due on April 15 Don’t forget to give back to the National MS Society, Oklahoma, by checking Box 12 on Form 511-G.