OKLAHOMA
M OV I N G TO WA R D A W O R L D F R E E O F M S
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Volunteer Highlight: Jody Bukacek of Oklahoma City, OK Some volunteers dedicate time to one event or area that is dear to their hearts. Others find a multitude of ways to stay involved year-round. We’d like to highlight Jody Bukacek for her continuous and far-reaching volunteerism: Volunteer Areas • Programs & Services, Government Relations, Walk MS, and Scholarship Committees • MS Ambassadors and Health Fairs • Peer counseling and Self-Help Groups • Holiday Homebound Gift MS Volunteer, Jody Bag delivery Bukacek, and her show dogs – Trouper, Chances R, • Certified Information & and Howdy Raudi. Referral Specialist
Uncorking the Cure for MS PAGE 4
MS Supporters Making a Difference PAGE 5
Years Spent Volunteering for the Society 18 Reason for Volunteering Her partner, Linda Chance, was diagnosed with MS in late 1993. They started doing as much research as possible to see how they could learn more and get involved. The Best Part about Volunteering “Meeting all the wonderful people and hoping that I can make a difference in the fight against MS,” says Jody. Her Biggest Accomplishments • Induction into the National Volunteer Hall of Fame. • Being able to fund scholarships in honor of Linda. • Knowing that she can be here to help those in the fight against MS. Continued page 3
Walk MS Muskogee Coming Oct. 6 PAGE 6
Bike MS Highlight 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 name@nmss.org Website www.nationalmssociety.org/ok 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 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. 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
Vice President’s Impressions Dear Members, We have just finished up our great Bike MS ride from Tulsa to Oklahoma City. I want to thank every volunteer, participant, sponsor and everyone in Oklahoma helping to create a world free from MS. Oklahoma had a fantastic Walk MS spring season and a great Bike MS event and the success is due to everyone. We cannot achieve this task on our own. We all know that when you have MS you are not alone in living with the disease. You have an entire network of friends, family, co-workers, Society Staff, and a world of researchers working with you to help you live with your diagnosis. I am very excited about the funding we have been able to provide through our fundraising events toward research and to support those currently living with MS. The Society has been focusing on helping people do what they like to do. We have developed a DIY (Do it Yourself) section that allows you to put on your own event that benefits the Society. Recently, the Oklahoma City Roller Derby had a benefit that raised over $600 for the Society. Additional upcoming DIY events taking place throughout Oklahoma are: Cooking Up a Cure in Norman, 5k Run in Durant, and the Dust Bowl Fly In located in Holdenville. Nationwide there have been over 600 individual DIY events. Thank you all for your creativity, and please keep the ideas coming. The Society has developed a phenomenal network of experts to assist you from diagnosis to daily living with MS. I am honored to work side by side with each and every one of you. Sincerely,
Ray Mack 2 I JOIN THE MOVEMENT: nationalMSsociety.org
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news
Staff Says At every committee meeting we get excited because we know that Jody is going to bring photos of her pups. We love her dedication to volunteering, and she’s even a top fundraiser for Oklahoma. She is a great extension of the Society–delivering equipment or making special visits. We don’t know what we would do without her. To Jody and all the other volunteers who commit to helping in numerous ways, THANK YOU!
Jody Bukacek at the Capitol
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. 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: Mark Neagli National MS Society 8111 N. Stadium Drive, Ste. 100 Houston, TX 77054
Oklahoma City Roller Derby
Offices Closed for Upcoming Holidays National MS Society offices will be closed on the following days: • Thanksgiving: Wednesday, Nov. 21 (half-day closure); Thursday, Nov. 22; and Friday, Nov. 23 • Christmas: Friday, Dec. 21 (half-day closure); Monday, Dec. 24; and Tuesday, Dec. 25
Thank you, OKC Roller Derby teams – Lightning Broads and Tornado Alley Roller Girls – for joining the movement!
• New Year: Monday, Dec. 31; Tuesday, Jan. 1 TOLL FREE NUMBER 1 800 344 4867
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news
11th Annual Uncorking the Cure for MS
The 11th Annual Uncorking the Cure for MS was held Friday, Aug. 17 at the sensational new venue, The International Center. It was a beautiful summer evening full of Triumph Wines by Calistoga Cellars, delicious cuisine from Tulsa’s #1 Caterer, Lambrusco’z To-Go, all with an excellent downtown view. The Silent Auction and Live Auction were full of new exciting items! The Wall O’Wine and Restaurant Gift Card Pull were packed with more surprises than ever before and brought in a record of over $4,000. The 2012 Uncorking the Cure for MS event raised over $85, 000 for the National MS Society. Thank you to our Uncorking patrons, event donors and all who contributed to making this event a success! “Uncorking is a wonderful time for us to celebrate progress made for those living with MS while looking forward to finding a cure. The Society provides information and support to so many
people,” said Lucia Laughlin, patron chair. “Knowing that we gather for this purpose makes this event a great party!” Special thanks to the fabulous event volunteers, committee members, and Uncorking Chairs: Debbie and David Carder, Patron Chairs: Lucia & Brent Laughlin and Wine Masters: Leigh & John Reaves.
MS Style Movement at the Glass Slipper
The 6th Annual MS Style Movement was held this past spring to benefit Bike MS. The fashion show was held at Glass Slipper in Utica Square in Tulsa. The evening included food, drinks, shopping and featured a shoe fashion show emceed by Tulsa’s Channel 8’s Laura Moss. Shoe models who have a connection to MS wore the latest styles from Flirt, jewelry from J.Spencer Jewelry, and hair and makeup by Ihloff Salon and Day Spa. Special thanks to all who participated! Models in photo are: Allison Warning, Aimie Dwyer, Madalyn Wiseman, Terri Vajda, Danielle Hostutler & Cary Loepp. 4 I JOIN THE MOVEMENT: nationalMSsociety.org
Outstanding MS Supporters Recognized in Their Community for Making A Difference MS Ambassador, Patti Barker, was awarded the 2011 Paragon Award by Leadership Tulsa last October. The Paragon Awards is a yearly event where Leadership Tulsa celebrates and honors
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“It is very humbling to be recognized for something I love and can’t imagine not doing,” said Barker. One of the National MS Society’s most notable and distinguished ambassador, volunteer, donor and friend, Bryan Close, will be honored as one of five community leaders who will join the Tulsa Historical Society’s Hall of Fame later this year. What an outstanding honor and recognition. Thank you, Bryan, for all that you do to help the Society get closer to finding a cure for MS!
Patti Barker with her two daughters, Channing Barker & Madalyn Barker Wiseman the outstanding achievements of its members who have demonstrated extraordinary talents, commitment and vision in serving the community. As an advocate for those living with MS, Barker has presented on Capitol Hill along with her daughter, Channing Barker, who has MS. She passionately serves as a 5-state regional board member, is the state chairman of the government relations committee, and acts as an event volunteer and a resource for other parents of children living with MS.
The Tulsa Hall of Fame started in 1987 and includes more than 125 prominent names, ranging from pioneers to philanthropists. Please join us in congratulating both Patti Barker and Bryan Close!
Bryan Close
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TEAM Talk
Thank You for Your Support of The Mother Road Ride
A big thank you to all of the cyclists, sponsors, and volunteers who made Bike MS: The Mother Road Ride, presented by Sam’s Club, a huge success! To our Tulsa and Oklahoma City Bike Shops–we could not have done this without you. You all serve on the front lines. Thank you for spending your Presenting Sponsor
Presenting Media Sponsor
platinum Sponsors Gold Sponsors silver Sponsors
Walk MS: Muskogee Committee Preparing for October 6 Members of the Walk MS Muskogee planning committee gather to plan details for this year’s walk on October 6. The committee held a successful golf tournament this spring to help raise money for the National MS Society. 6 I JOIN THE MOVEMENT: nationalMSsociety.org
weekend with us and taking care of our cyclists. We truly appreciate everyone’s effort and support. It is because of those efforts that a difference is being made in the lives of thousands of Oklahomans living with MS. Official Vehicle Sponsor
Celebrate Your Caregiver! November is National Family Caregiver Month The National MS Society supports the National Family Caregivers Association (NFCA) in their efforts to recognize family caregivers through our endorsement and recognition of November as National Family Caregivers (NFC) Month. This is a nationally recognized time set aside every year to thank, support, educate and celebrate more than 50 million family caregivers across the country! Many families and individuals are caregivers to a loved one. These caregivers can be sons, daughters, parents, spouses, siblings, other relatives or even a friend of the person needing
programs
assistance. According to the NFCA, the service provided by Family Caregivers represents 80% of all home care services, which is conservatively valued at $375 billion a year. The National MS Society knows that being a caregiver is a huge responsibility that comes with joy, frustration as well as sacrifices and we want to give something back to caregivers who have given so much, and given up so much to support others. Stay tuned for more details on how we can help you recognize your caregiver during the month of November!
Register Today for One Hot Fiesta, Getaway Weekend November 9-11, 2012 Post Oak Lodge, Tulsa, OK
Getaway Weekend is designed for people with MS and their spouse and/or care partners.
Aaaaaahrrrrriiiibbbba! It’s FIESTA time! Please plan to join us for a three-day weekend retreat that will be filled with games, indoor and outdoor activities, prizes, opportunities to connect and socialize…and did we mention RELAXATION? Oh yes, that is one thing we are known for at the Getaway Weekend… an opportunity to unwind and relax in the breathtaking beauty of Oklahoma’s hill country. Tucked into northeast Oklahoma’s Persimmon Ridge, Post Oak Lodge encompasses 1,000 acres of tree-studded rolling hillside. It’s a perfect setting for a weekend getaway!
Registration is a two-step process. Please be sure to do both steps. 1. You must register for the program with the Society, by either calling us at 1-800-344-4867, option 1 or register online at nationalmssociety.org/ok. Registration is $5 per person. 2. You must call and make your room reservation at Post Oak Lodge, 918-425-2112. Room rates are $90.95 per night. For complete details and information on what is included in your registration, please contact us or view the information online.
Esperamos verte pronto! (Looking forward to seeing you soon!) TOLL FREE NUMBER 1 800 344 4867
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PROGRAMS
Family Fun Night and Scholarship Recognition Reception
By BJ McBride The Family Fun Night and Scholarship Recognition programs were held on Saturday, June 9 at the Chickasaw Bricktown Ballpark in Oklahoma City. We had approximately 100 people beat the heat, and join us in the Triple Level Suite. We kicked off the program at 4:30 p.m. with a variety of family fun activities. During the scholarship recognition reception, we had the opportunity to honor five of our 2012 Oklahoma scholarship recipients. Packy Evans, South Central Region Board of Trustee and Leadership Council member, was our Master of Ceremonies for the program. Jody Bukacek made the 2012 Linda Chance Memorial Scholarship presentation. Packy Evans made the 2012 Robert Long Memorial Scholarship presentation for the Harris Foundation. Following the reception, the Oklahoma City Redhawks and the New Orleans Zephyrs took to the field for the evening game. What a wonderful evening.
8 I JOIN THE MOVEMENT: nationalMSsociety.org
2013 Scholarship Applications Available Online The National MS Society offers a scholarship program for students living with multiple sclerosis or who have a parent living with MS. Applicants must be planning 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.
PROGRAMS
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 Each recipient is selected based on financial need, academic performance, compelling personal additional scholarship opportunities, including or family circumstances, and an applicant’s essay federal assistance and other financial aid resources. on the impact of MS on his or her life. In 2012, the National MS Society, South Central region awarded 48 new scholarships, Awards range from $1,000 to $3,000 for one year. A small number of four-year awards are also offered. 10 of which went to graduating students in Oklahoma. In addition to the new awards Starting Oct. 1, 2012, scholarship applications given, 75 scholarship renewals were also for 2013 are available on the Society’s website. awarded for a total of $185,500.
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progrAMS
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
10 I JOIN THE MOVEMENT: nationalMSsociety.org
phone call. Everyone was so nice, and the process 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
Society Launches $18.4 Million in New Research and Training Projects In 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.
RESEARCH
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.
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
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.
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RESEARCH
Clinical Trial Shows Promise for New Therapy for Relapsing MS
In a clinical trial involving 1,169 people with relapsing-remitting 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.
New MS Drug Application Filed for FDA Review 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 6 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.
Botox Research Moves to Reduce Arm Tremors Botox significantly reduced arm tremor, and a new strategy to address this common and improved arm and fine hand movements and disabling symptom of MS, which is often resistant function, in a small study of people with MS. If to treatment. confirmed in a larger study, this research may yield
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 diseasemodifying 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 12 I JOIN THE MOVEMENT: nationalMSsociety.org
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 – called KIR4.1, which is found on several types of brain cells – was observed in the serum of 47 percent of people with MS who were tested. Further research is
research
needed to confirm these findings, and to fully understand what the role of this protein may play in MS and its potential for developing new treatments. This international study was supported by grants from the German Ministry for Education and Research and the National MS Society, among others.
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.” They also suggested that the study shows that science needs to be more mindful of “a biopsychosocial model of disease.” This model acknowledges that biological and psychological factors contribute to diseases such as MS.
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, in particular, 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.
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volunteers
Bike MS Team Highlight
25 Years of Volunteering,Riding & Creating Awareness of MS: Thank You, Kevin O’Sullivan & Team Lawnchair By Brandi Davidson Moore We recently discovered that a certain volunteer who wears many hats in our organization celebrated a pretty monumental achievement at this year’s 27th Annual Bike MS Ride. Mr. Kevin O’Sullivan, current team captain of Team Lawnchair, is not only celebrating his 25th year for riding in Bike MS but he is also celebrating 20 years of fundraising with his team, Team Lawnchair. I’d like to share with you what inspired Kevin to become the outstanding MS Ambassador that he is today … When asked how he became a volunteer and cyclist for the Society, Kevin replied, “In 1985, Bud Sartain, a young co-worker of mine, was on the Board for the Society and at the time the Society was focusing on developing young professional groups. He called and asked if I’d help put on a party for MS and I said, ‘Sure, what’s MS?’”
day due to a wedding in the 1990’s. Over those 25 years, Kevin has raised nearly $400,000 for the Society with his fundraising efforts including not only Bike MS, but also Uncorking the Cure for MS and many other events and solicitation efforts. Team Lawnchair is celebrating their 20th anniversary this year. With past team captains leading the way – Larry Born, Bob Stewart, Tony Knowlton and Keith Franklin – and growing from the original eight team members to almost 40 members today, the team has remained the Top Fundraising team for at least 15 of the 20 years they have participated – raising almost $500,000 to-date. Team Lawnchair would not be complete without their Team Mom, Patti Barker. “This team would not be as great as it is without Patti,” said Kevin. “No team has a better Team Mom. No one.”
When asked why he’s passionate about the Society, Kevin said, “The Society provides exceptional programs and services for those affected by MS. Our research is world class, and a priority. Kevin credits his reasoning for volunteering for the I am respectful of the Society to helping create a world free of MS. “The work of the Society for more I understood about MS, the more I was those we serve - I’m captivated by its fangs. It’s so complicated and inspired and fulfilled by unpredictable,” said Kevin. In his past 25 years, those living with MS - how they live their lives Kevin has volunteered as the Board Chairman twice courageously and with so much dignity - even and as a National Board Member for seven years. with the challenges they’ve been dealt.” He continued to say, “As a volunteer, you always Kevin is celebrating 25 consecutive years of riding receive more than you can give. A world free of the Bike MS Oklahoma ride. He only missed one MS - it’s not a dream, it’s our mission.” 14 I JOIN THE MOVEMENT: nationalMSsociety.org
Special Recognition – National MS Society Volunteer Hall of Fame 2012 Inductees Congratulations to our South Central Volunteer Hall of Fame Inductees! These individuals will be recognized at the Society Leadership Conference in November. The inductees in each category are selected by a group of volunteers and staff members who review every application that is submitted. Each category has its own review group plus a staff partner who works in that area, in addition to support from the volunteer
VOLUNTEERS
engagement staff. This is a huge honor as volunteers are nominated from across the country. • Patti Barker (Oklahoma) - Advocacy • Gerald Merfish (Texas) - Funding the Mission • Amy Gutierrez (Louisiana) - Health Professionals • Jinjer LeVan (Texas) - Programs and Services
Save the Date! The Oklahoma Legislature will reconvene in January 2013. Plans are now underway for the 2013 Oklahoma Public Policy Conference! Sign up to become an Oklahoma MS Activist & get news about this and other ways to make a difference: http://tinyurl.com/OKAction
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 Tom, 405-209-5410 Emily, 405-607-2861 Jody, 405-755-5756
Tulsa: PACE Dave, 918-645-0880 Sandra, 918-481-9928 Don, 918-355-9809
Stillwater: Connie, 405-372-8617
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Save the Date October 6 Walk MS Muskogee 6 Walk MS Stillwater Walk MS Edmond - Anytime
November National Caregiver Month 9 - 11 Getaway Weekend