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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Dedicated Volunteer for 22+ Years By Stephanie Dudley, Marketing Intern Mike Keim has been volunteering with the National MS Society, Oklahoma since 1988, following his older sister’s diagnosis in 1987. His first volunteer experience was with the Tulsa Walk MS (then known as the Super Cities Walk for MS) as a greeter, holding balloons. Mike has continued volunteering over the years as a committee member on the Tulsa Walk MS and Bike MS committees. He also volunteers for Uncorking the Cure for MS and many other MS programs, because of the relationships he has gained through becoming friends with other volunteers.
Mike Keim with Brandi Davidson at Walk MS Tulsa 2009
Mike has accumulated many Walk MS and Bike MS shirts after his more than twenty years with the Society and he recently had an opportunity to put them to good use by donating them to a friend whom was sending much needed assistance to Haiti. When I asked Mike which event he assists with was closest to his heart he responded, “If I say one or the other (Bike MS or Walk MS) the opposite would get mad at me.” Continued page 3
Uncorking a Record PAGE 4
OK Corrals MS PAGE 5
Airplane Fly In & High Heels PAGE 6
Oklahoma Bike MS PAGE 12
THE 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@oke.nmss.org Website www.nationalmssociety.org/ok Chairman • Patrick Evans Vice President • Paula H. Cortner Director of Development • Lucy Fraser Director of Development • Kelly Dooley Communications Manager • Brandi Davidson Development Manager • Cristy Racy Dir. of Programs & Services • Sharleen Dupee Clinical Programs Manager • Lisa Rutledge, Jennifer Philp Health Resource Advocate • Candace Richerson Health Resource Assistant • Clayton Miller Direct Service Coordinator • Donna Bolain Youth Programs Coordinator • B.J. McBride Finance Manager • Denise Allen Data Mgmt Coordinator • Lisa Gray Newsletter Editor • Brandi Davidson 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. ©2010 National Multiple Sclerosis Society, Oklahoma
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Vice President’s Impressions Dear Members, We are Unstoppable – The Annual meeting of the new South Central region will be in Tulsa in January and will we have much to celebrate? OH YES; we are Unstoppable! In 2010 we had one of the most exciting times ever in MS research: the first Oral Disease Modifying therapy for MS was approved, a “walking pill” for increased mobility is now on the market, a new treatment for involuntary outburst of laughing or crying is available, exercise and lifestyle choices are now known to influence MS, and CCSVI may be a new effective treatment. A new Tax check off box will allow all Oklahomans to support MS, and we have reorganized as a chapter to become more efficient and productive. There is a movement going on! But is all of this enough? No. The National MS Society has committed $250 million in research funding for 2011 through 2015. We need to STOP the progression of MS, we need to RESTORE the damage caused by MS and we need to END the effects of MS NOW. Too many people suffer with primary progressive MS and that is not acceptable, and too many children (Our Children!) are being diagnosed with MS. MS is the enemy and we are unstoppable. Join us at the Annual meeting live or on the internet on January 29th to find out more about our new plans. We can do this together, I plan to count on you, count on me. Warm Regards,
Paula H. Cortner Vice President Oklahoma/Arkansas
What’s in a Name?
chapter news
By Paula H. Cortner
The Oklahoma Chapter has officially become part of the South Central Region; we are all now working together as one large entity to better serve the needs of people with MS. Our region consists of Oklahoma (yeah us!), Arkansas, Louisiana, New Mexico and Texas. We anticipate that regionalization will increase the breadth and scope of programs and services available to people with MS across the region. Regionalization is expected to increase the efficiency and effectiveness of the Society’s operations by fostering collaboration, communication and teamwork across the region. Our full staff has been retained and some of their scope of work has broadened to help and assist others across the region. Publications and communications will continue to be distributed throughout the region. Programs and services will still be managed and delivered on a local
level. We are still in our offices in Tulsa and in Oklahoma City, our current phone numbers and website remain in effect, we will still rely on volunteers and donors to fulfill our promises to people with MS, so we may operate a little differently but we will just keep getting better! I encourage you to find out all about our reasons to celebrate this change when we host the first South Central Region Annual meeting in Tulsa on January 29, 2011. We welcome you to join us in embracing change for A BRIGHT future. So what’s in a name? If we can keep people with MS at the center of all we do and have a greater impact on their lives and in funding our mission to end MS, then we don’t care what you call us, we are still in Oklahoma and we are proud to associate with all of our friends and partners across the South Central Region.
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His sister passed away four years ago, however Mike continues to volunteer with the mindset that any assistance is always helpful. Mike’s biggest hope for the future of the National MS Society is a cure, but until then he would simply love to see the interaction between the clients, staff and volunteers continue. Are you interested in becoming a volunteer for the National MS Society? Volunteers are needed representing a wide variety of talents and backgrounds, all with one mission: to create a world free of MS. If you would like more information on joining a committee or volunteering for the Society in another capacity, please contact Cristy Racy at 800-344-4867, option 2, extension 22.
Mike Keim with Juana & Clarence Driver at Walk MS Tulsa 2009 TOLL FREE NUMBER 1 800 344 4867
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chapter news
Uncorking Raises a Record $78,000 By Brandi Davidson
provided by local musician Steve Liddell. Many This year’s Uncorking the Cure for MS wine fabulous live and silent auction items were up for auction with presenting sponsor Asphalt & Fuel purchase featuring fine wines from around the Supply was held on Friday, Aug. 27 at the beautiful world, unique trips and items from local vendors. Tulsa Historical Society. With the leadership of The Wall O’ Wine filled with a variety of wines of Debbie Garner as Chairwoman along with the value up to $400, sold out within the first hour! dedication of our 2010 committee, the event raised a record $78,000 to benefit Oklahomans living Honorary Wine masters Tom & Melanie Tate, with MS. A fundraiser that began as a special board Patron Chairs David & Debbie Carder and project to raise additional funds for MS research presenting sponsor Asphalt & Fuel Supply several years ago has become so popular that it owners, John & Leigh Reaves had a wonderful had nearly 300 people in attendance this year. time celebrating with all those who attended and helped raise funds for those living with MS. Guests of the event enjoyed a casual evening filled Please check out photos from the event on our with wine from Calistoga Cellars, hors d’oeuvres Oklahoma Chapter MS Facebook page. from Lambrusco’z To Go and entertainment
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OK Corrals MS
chapter news
By Brandi Davidson
The 31st Annual Close/MS Regatta was held on September 11, 2010. This year, altogether, the Close/MS Regatta, the Moonlight Sail for MS and the Launch Party raised nearly $70,000 to help Oklahomans with multiple sclerosis. This was accomplished by 48 sponsors, 24 people giving in-kind donations, 100 participants at the Moonlight Sail, 50 people and companies donating auction items, 150 participants at the Launch party and 125 participants at the Regatta.
(first overall boat) was won by Roger Kerr in his Merit 25. Many “VIP” spectators rode on Captain Pat Devlin’s houseboat to watch the race from the sidelines. At the celebration and presentation of the awards, participants enjoyed food from Rib Crib Sand Springs and entertainment provided by long-time supporter Acoustic Freight Train who has volunteered to play for the Regatta for ten years.
Special Awards for the Regatta.... Honorary Chairman of the Close/MS Regatta was Spirit of the Launch Party – Ray Adams Ken Greenwood and the Committee Spirit of the Regatta – Mike Lang Chairwoman was Mary Snider. The “MS Cup” Best Boat – Rod Sherwin
MS Trial Recruiting The MS Center of Oklahoma is currently enrolling participants for a reduced frequency Copaxone trial. Instead of the daily injection, the study is using Copaxone 3 times a week. To qualify for the study individuals must not have been on Copaxone before and be fully ambulatory. If interested, contact Micki at (405) 936-5717.
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chapter news
A Successful Voyage was experienced on the Majesty Members and guests enjoyed a fun filled weekend retreat at Post Oak Lodge, in Tulsa, Oklahoma October 29-31st. The weekend was packed full of live entertainment with Zach Benge, local Bixby High School performer who kicked everything off for us Friday night with a performance on keyboard and guitar. Saturday was filled with massage therapy and paraffin hand wax treatments, caregivers enjoyed an “on-shore excursion”, and many guests enjoyed the wonderful October weather sitting in porch swings relaxing and visiting with new and old friends. There were cruise-themed activities throughout the day including Yoga led by
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Prakash Dave, a dedicated volunteer who leads Prana Yoga at The Center in Tulsa, bean bag toss, washers, horse shoes and catch and release fishing…some even took a dip in the heated pool…there was something for everyone. A cruise would not be complete without, a Captain’s Dinner. All guests enjoyed a lovely dinner with live music Saturday night, and 8 lucky guests were randomly chosen and invited to sit at the Captain’s table for a special VIP Dinner. Our very own, Captain John Rhue and his wife Brenda Rhue (2008 Getaway Weekend King
chapter news
of the Seas, Getaway Weekend 2010 Cruise!! and Queen) hosted guests while Mz. Entertainment, Valonda Pannell performed. The Cabaret Variety Show featured, a high energy light show, performed by Ben Black, Jiggle the Handle (an acoustic guitar duo, which included John O’Neill and Bryan Smith) and Mz Entertainment, Valonda Pannell came back on stage with two back-up singers for a dynamite show featuring music by Tina Turner and Diana Ross. The Majesty of the Seas Getaway Weekend was wrapped up with a hot breakfast buffet and the crowning of our new King & Queen of Getaway Weekend, Clarence and Juana Driver!!
Congratulations to our new royalty!! Bon Voyage to another exciting and fun Getaway Weekend! A special Merci Beau Coup to our sea worthy sponsors!! Closebend, Circle Cinema, Windycrest Sailing Club, Camp Loughridge and Meeks Group for their generous donations. And last but surely not least, THANK YOU to all the great volunteers and staff that made this weekend possible!! You are truly appreciated!!
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chapter news
Did You Know? Airplane Fly In & Riding in High Heels Have Something in Common? By Brandi Davidson What do airplanes and riding bicycles in high heels have in common? Two things‌Bringing people together to raise awareness of MS and raising money for people living with MS! We are so thrilled to let you know about two recent community events that were held in your area. In Holdenville, Oklahoma, Wes Arnett and a dozen volunteers put on the 2nd Annual Dustbowl Fly In for MS on Friday & Saturday, September 10 & 11. It was a beautiful weekend and several hundred people came out to participate and support the event. They raised $600, there were around 30 pilots flying model airplanes and over 300 model airplanes were on display. If you would like to volunteer to help at
next year’s event on Sept. 16 & 17, 2011 contact Wes Arnett at oklahomadustbowl@yahoo.com Then, in Tulsa, Oklahoma, Dana McBride and Mary Benes put on the first ever Mile High for MS one-mile bike ride. Those who participated wore costumes and rode the one-mile in high heels, boys and girls alike! With special guest, Mia Fleming, Fox 23 News anchor, the day was a huge success and raised $600 for MS. There were a little over 30 participants and volunteers. You too can make a difference in your community! If you have hosted or are hosting an event in your area, let the National MS Society, Oklahoma know about it. Contact Brandi Davidson at brandi.davidson@oke.nmss.org or 918-488-0882.
Volunteers at Mile High for MS Oklahoma Dustbowl Flyin in Holdenville
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Special Guest, Fox 23 News Anchor, Mia Fleming
4th Annual Smarty Pants Trivia Night
chapter news
By Lucy Fraser
The 4th Annual Smarty Pants Trivia Night was held on Thursday, August 26 at the Oklahoma Heritage Center. About 350 fans enjoyed an evening of brain-numbing trivia questions, emceed by Mark Rodgers. Sponsors of the evening included Chesapeake Energy, Cox Communications, Skyline Media, Northwestern Mutual, UniFirst and Linda and Don Wiens. Participants enjoyed a buffet provided by Johnny Carino’s and Fish City Grill. Thanks are also in order for chairman Packy Evans, the steering committee and all the volunteers who helped plan and work the event. Prizes and awards were made to the top two
teams. Back for a third year win, Sara and Jay Kyte’s table took the first place honors. A Chesapeake Energy table took the second place award. Best Costumes and Best Decorations went to Debbie Steen’s T-Town Mobsters and the “Jersey Shore” table. Watch the website and future newsletters for dates for the 2011 date; or contact Lucy.Fraser@ oke.nmss.org to be added to the mailing list.
The “Jersey Shore” table toast with their Best Table Decoration trophies.
Walk MS: Fall Walks Raise Nearly $40,000
Debbie Steen and the T-Town Mobsters display their winning Best Costumes. Enid Walk MS
Walk MS events were held in Stillwater, Enid, Muskogee and Edmond in September and October. Nearly 400 participants and volunteers gathered to show their support, raise money and awareness for multiple sclerosis in their community. They were joining the movement to create a world free of MS. So far this year, the Fall Walk MS events have raised nearly $40,000. Congratulations to each of the volunteer chairwomen who have worked tirelessly to put on such great events: Connie Walker – Stillwater; Linda Wiens and Janet Cordell – Enid; Melissa McLain – Muskogee; and Talesa Shores – Edmond. And thank you to the committee members and volunteers who helped make this year’s events so successful! Enid Walk MS photo courtesy of Phillip Whitaker
Muskogee Walk MS TOLL FREE NUMBER 1 800 344 4867
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chapter news
Welcome New Staff Kelly Dooley • Kelly joined the • Graduate of the University of Oklahoma, Oklahoma office as received a bachelor’s degree in Psychology. Development • Kelly is a member of the OU Club of Tulsa. Director in October 2010. He joined the • He has been married to his wife, Amy, for five National MS Society years and they have a two-year-old daughter, in January 2001 at the PK (Parker Kollin). Dallas, TX office. • “I love the state of Oklahoma. Even though I • Previously worked as was raised in Dallas, I have always thought of a Relocation Associate myself as an Okie trapped in a Texas body. The for Americorp Relocation Management. mission of the MS Society is something I believe in strongly, no matter where I am…” Stephanie Dudley • Stephanie joined the Oklahoma office as the Marketing/PR Intern in May 2010. • She is a student at the University of Tulsa, doublemajoring in Management and Marketing. • Stephanie is the current Vice President of
Administration of Delta Delta Delta at TU. • Her family resides in Independence, Missouri. • “I was initially interested in the internship because of my history with non-profit organizations. After spending time in the Tulsa office I realized the amazing atmosphere and culture that was provided by the NMSS and saw the internship as an opportunity to learn, grow and develop skills that I will be able to take with me and use in my future endeavors.”
BJ McBride • BJ joined the Oklahoma office as the Youth Programs Coordinator in October 2010. • Previously worked as a Part-time Manager with Comet Cleaners in Sand Springs. 10 I JOIN THE MOVEMENT: nationalMSsociety.org
• Graduate of Oklahoma State University, received a bachelor’s degree in Accounting & Finance. • “Various people within the office (as well as other volunteers/people living with MS) have inspired me to “do” more than simply volunteer.”
chapter news
Clayton Miller • Clayton joined the Oklahoma City office as the AmeriCorps Member -Volunteer Coordinator and Research Assistant in October 2010. • Previously worked as a summer intern at Turtle Rock Farm: Sustainability and Spirituality Retreat Center.
• Clayton is president of Delta Alpha Chi: Men’s Christian Service fraternity and the founder and current member of the Oklahoma City University - Community Garden. • His little sister is getting married next August and he couldn’t be happier. • “I’ve always felt the need to work for people and by joining the team at the NMSS I know my efforts will effectively and efficiently go towards serving thousands of Oklahomans.”
• He will graduate in December 2010 with a double major in World Religions & Philosophy. Jennifer Philp • Jennifer is a member of the Tulsa Global • Jennifer joined the Alliance, the Alliance Francaise of Tulsa and Oklahoma office as a the Oklahoma Public Health Association. Clinical Programs She is also a member of First Presbyterian Manager in September Church of Tulsa. 2010. • Previously worked as a • She and her husband, Tom, have two sons, Joshua (5 1/2 yrs) and Alex (2 1/2 yrs). Clinical Programs Manager for the • “I discovered that the Oklahoma office, and NMSS, Oklahoma the NMSS organization as a whole, is a office nearly 5 1/2 powerful team made-up of stellar individuals years ago. on all levels. It is easy to be inspired when you are surrounded by good people and enriched • Graduate of Duke University, received a bachelor’s with purposeful action.” degree. Received her master’s degree in Public Health from the University of Oklahoma Health Sciences Center.
NOTE
The Winter issue of the Oklahoma MS Connection will be available on the website at www.nationalmssociety.org/ok. You can access the newsletter at the end of January. We will email the newsletter to those for whom we have an email address. Questions? Email brandi.davidson@oke.nmss.org. TOLL FREE NUMBER 1 800 344 4867
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Team Talk
Oklahoma Bike MS: The 25th Anniversary! By Kelly Dooley
The Oklahoma Bike MS:The Mother Road Ride presented by Sam’s Club was a HUGE success! Approximately 700 riders made their way from Tulsa to Oklahoma City over the two-day journey. The weather was nice and sunny with some wind on their tails and occasionally in their face… but, no rain! YES! It was a great ride and it meant a lot to the riders as we celebrated its 25th years in existence. This is the second year for this route and we will continue to build its success. Now that we have the two biggest cities involved and a great overnight
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in Chandler, OK, there is no stopping the “Mother.” In Chandler this year, it was a “PARTY” atmosphere. Where else are you going to find 700 people in spandex, drinking beer, watching football, and walking around a little sore? It was quite a sight for all. There were seven team tents full of food, fun and fellowship. The top fundraising team continues to set the standard for fundraising - Team Lawnchair! Led by the top individual fundraiser, Kevin O’ Sullivan. Another person we would like to recognize is,
Team Talk
Ray Mack. Ray is co-chair on the steering committee and the official team captain for Marathon Oil. Ray was honored at the National Convention in Chicago as the National Team Captain of the Year for the whole country. Next year’s date has been set for September 17-18. Also, to let you know, there will be Victory/ Kick-off Parties in OKC and Tulsa in the spring. We are having ONE BIG party to serve as both a Victory and a Kick-Off. To go along with that, registration will open in the spring as well. We are
revamping the Website and want to make sure its ready when registration opens. In the end, Bike MS raised over $450,000 and that is something to be proud of as we start planning for next year. We will never lose sight of why this magnificent event is put on and that is to improve the lives of Oklahomans living with ms. On behalf of the over 3,200 people we serve in Oklahoma‌ THANK YOU!
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Chapter Programs
Planning Wise Program – Building Security, Independence and Life Balance Program Purpose: To provide one-to-one 90 day consultation (time frame varies) over the phone for people with MS that provides professional assistance with: • Career/job coaching • Financial planning and insurance benefit counseling • Direct financial assistance with COBRA health insurance payments if appropriate
• • • •
Set new goals to achieve focus and momentum Take effective and focused actions immediately Replace stress and effort with energy and flow Achieve balance between work, family and MS fatigue
Financial Planning: Client works with a Certified Financial Specialist for up to a 90 day period. The client will come to understand important health insurance, short-term and Eligibility: To qualify for the program an long-term disability benefits, and will work with individual must meet at least one of the following the client to set mutually agreed upon long-term criteria: financial goals. • Lost employment in the last 30 days • At risk for losing employment COBRA Assistance: The program provides 3 • Considering a career change because of MS months of assistance for COBRA or health insurance payments if appropriate. (This Career Coaching: Client works with a professional assistance is only provided to people who are career coach for a 90 day period (time frame varies) actively participating in the program.) to achieve mutually agreed upon employment/ career/personal goals. The coach is educated For more information or to enroll in the program, about the physical and cognitive challenges contact the Direct Service Coordinator in the people with MS face. Goals may include: Tulsa office at 918-488-0882
2011 College Scholarships, Application Now Available MS shouldn’t stand in the way of education. The National MS Society’s scholarship program exists to help highly qualified students who have been diagnosed with MS or who have a parent with MS achieve their dreams of going to college. 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. In 2010, the National MS Society, Oklahoma 14 I JOIN THE MOVEMENT: nationalMSsociety.org
provided 13 High School Seniors in Oklahoma and Arkansas with College Scholarships. Awards range from $1,000 to $3,000 and a small number of four-year awards are offered. Scholarship applications for 2011 awards will be accepted (online only) between October 1, 2010 and January 14, 2011. Scholars receive notice in May 2011. For detailed guidelines and application information on the program please visit the website at www.nationalmssociety.org/scholarship.
Be Our Guest at the South Central Annual Meeting
Chapter Programs
We would like you to join us at the South Central Annual Meeting that will be held at the Crowne Plaza Hotel in downtown Tulsa, OK on Saturday, January 29 from 2 – 4 p.m. This year, you can be with us in person or watch online as we stream the conference Live on the Internet. We will post the link to the meeting on our website at www.nationalmssociety.org/ok.
Channing Barker, emcee for South Central Annual Meeting
We are thrilled that Ms. Channing Barker (Tulsa native) will be emceeing the Annual Meeting. We will share Oklahoma achievements, successes of our South Central friends, and celebrate programs & services achievements from 2010. Research updates and information will be provided by Dr. George Hutton. A volunteer recognition will follow the Annual Meeting. We are Unstoppable! Join us virtually for your opportunity to vote and participate by asking questions at our Annual Meeting from the comfort of your home. If you would like to come to the Annual Meeting, please RSVP by calling Paula Cortner at 800-344-4867 option 2.
November Was National Family Caregiver Month November was National Caregiver Recognition Month and the Oklahoma office of the National MS Society helped others celebrate their Caregivers. We asked those living with MS to write a “thank you” letter and send it to the Oklahoma office so that we could include it with a special gift that was mailed to the Caregiver. Thank you to those who participated. Some of the “thank you” letters will be featured in the Winter 2011 newsletter issue. Over 50 million Americans are recognized during
November for National Caregivers Month, according to the National Family Caregivers Association. The National Family Caregiver Association reaches across the boundaries of diagnoses, relationships and life stages to address the common needs and concerns of all family caregivers. For more information on National Family Caregiver Month visit the National Family Caregivers Association at www.thefamilycaregiver.org or call 800-896-3650.
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Chapter Programs
Advocacy in 2011: Building New Relationships – Save the Dates By Candace Richerson With the elections over, the new legislative session is just around the corner! Opening Session of Oklahoma’s 53rd Legislature will be at noon on Tuesday, January 4th, 2011. Attending an opening session is a remarkable experience. This year will be an historic day as we will witness our first female Governor deliver her budget and address the members of the Senate, the House and the Judiciary. Join me for the beginning of our Advocacy efforts at the State Capitol!
over $7,500 each year for 3 years to stay on the form. I challenge you to tell at least 5 friends and relatives about this opportunity to donate $1.00, $2.00 – up to $25.00 using their refund or adding that amount to the tax they owe. This is an opportunity for people across the state, who may have never been to a walk or event, to contribute to the National MS Society, Oklahoma. All money collected stays right here in Oklahoma!
Our 2nd Annual Legislative Training will be Monday’s at the Capitol is a non-partisan group, Saturday February 12th – location and time to be open to anyone who would like to promote announced. We will discuss how a bill moves awareness to our legislators of the needs of people through the legislature: from how ideas for laws are living with MS. Last year this team was instrumental formed, to what steps it takes through committees in getting HR 2710, our Tax Donation Box, on its journey toward passage or defeat. We will passed and into law. Join us as we welcome new have guest speakers who will provide insights as to legislators, their staff, and introduce them to The how to get your message out to legislators and an National MS Society. This session, like last session, overview of the bill tracking system on the budget constraints will be an issue. Many of our Oklahoma Legislature website. Democracy members depend upon programs funded by the demands participation! Know what’s going on state. Your voice will be needed should any of from the comfort of your home via your computer! these programs be slated for the chopping block. Our big Advocacy Event of the year is our Our Monday’s at the Capitol team will meet at Annual MS Oklahoma Day at the Capitol, 10:00 at the 4th floor snack bar located in the Tuesday March 15th. This will be one of our MS north corridor of the State Capitol. We will meet Awareness Week events and a not-to-be-missed January 10th, & 24th; February 3rd & 15th; event!! We need a lot of volunteers to make this March 14th, 21st & 28th; April 4th, 11th, 18th, & event a success! Planning 25th; May 2nd, 9th, 16th, 23rd. Plan now to committees are in the attend one or all of our meetings! making. Be watching for more information about Speaking of our Tax Donation Box, look for it on this important day. your 2010 Oklahoma State Tax Form beginning in December! If you have an accountant who prepares your taxes, please advise him or her that this option is new to the form. We must raise 16 I JOIN THE MOVEMENT: nationalMSsociety.org
Advocacy
GILENYA IS APPROVED THE ERA OF ORAL DRUGS BEGINS On September 22, the U.S. Food and Drug Administration approved fingolimod capsules for reducing the frequency of MS attacks and delaying the accumulation of physical disabilities in people with relapsing forms of MS. This is a milestone in MS therapy. The new medication, under the brand name Gilenya (pronounced Jil-EN-ee-ah), will be available as a “first line” treatment, meaning there are no recommendations for people to try other MS therapies before trying Gilenya. Novartis, the manufacturer, says the drug will be available for prescription in coming weeks. Gilenya is a new approach to controlling MS. It blocks receptors on some of the same T and B immune cells that have been implicated in causing MS damage. The drug causes some of these cells to remain in lymph nodes, inhibiting them from migrating into the brain or spinal cord. A second oral MS med is under review Last July, the FDA agreed to give “priority review” status to EMD Serono’s cladribine tablets with the hope of an approval decision this December. Cladribine is a chemotherapy drug that is used to kill T and B cells in the immune system and thus slow down the attack on myelin. The arrival of therapies that do not require regular injections greatly increases options – especially for people who are not doing well on their current drug or who have deep aversion to needles.
Last June, the FDA advisory committee considered data on figolimod.
An informed choice While oral drugs have long been a goal for researchers, the choice will not be quite as simple as putting down a needle and popping a pill. Gilenya is a powerful drug with potential side effects and risks as well as possibilities. The label carries warnings about these, including decreased heart rate after the first dose. The drug also increases risks of certain infections. In the clinical trials, two deaths from herpes infections occurred in people who took Gilenya at a higher dose than the level that has been approved. A number of pretreatment tests will be required and people will be monitored for potential lowered heart rate for six hours following their first dose. On the up side, clinical trial data suggest that Gilenya has a stronger impact on reducing relapse rates than a standard drug, Avonex, and also delays accumulation of physical disability. For more details, including Frequently Asked Questions, and references to the clinical trials, please visit nationalMSsociety.org or call us for a printed copy of the September 22 News Bulletin.
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Money Matters
PRESCRIPTION PARITY (D-OH)
(R-TX)
A collaborative effort between the Society, legislators, clinicians and other health organizations paid off in July when the Part D Off-label Prescription Parity Act (H.R. 5732) was introduced into Congress. Sponsored by Representatives Mary Jo Kilroy (D-OH) and Mac Thornberry (R-TX), the bill is designed to allow coverage of medication prescribed for an off-label use when such use is supported by peer-reviewed medical literature—as is currently the standard in Medicare Part B and Part D for medications used to treat cancer. Other Medicare consumers, including those with MS, are currently unable to access safe and effective medications under Part D because the program won’t cover off-label uses of drugs— that is, for uses not specifically approved by the FDA. Nonetheless, many doctors—using their professional judgment and information from the medical literature—do prescribe medications off-label to treat symptoms of MS. These include Provigil (modafinil) and Nuvigil (armodafinil) for fatigue, and Zofran (ondansetron) for tremor.
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Without this change in policy, individuals will continue to be denied coverage for treatment that could vastly improve their quality of life. “Prohibition of medically necessary medicines reduces treatment options for patients and compromises the private doctor-patient relationship,” said Linda Buchwald, MD, chief of neurology and medical director of the MS Comprehensive Care Center in Cambridge, Mass. “I want to be able to prescribe treatments that will be beneficial to my patients, at no unnecessary economic burden to them.”
MS REGISTRY The Society has continued to work hard to help pass a bill in Congress that would establish an MS registry at the Centers for Disease Control and Prevention. A more accurate estimate of who has MS and how common it is could enhance areas of research, including genetic and environmental risk factors. The last national study of MS incidence and prevalence was conducted 35 years ago, and the lack of upto-date information inhibits MS research and makes it harder to target programs and services. Take Action If you are interested in either of these measures, check if your senators and representatives have co-sponsored the bills. Look up H.R. 5732 (Part D Off-label Prescription Parity Act) and H.R. 1362/S.1273 (National MS and Parkinson’s Disease Registries Act) on Thomas.gov. If they have not sponsored the bill, ask for their support by calling or writing their offices. Be sure to thank them if they have already become supporters.
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: Claremore: Dottie, 918-625-1883
ATOMS Joe, 405-478-7990
Duncan: J’Nell, 580-255-0886 Kassie, 580-475-0576 David, 580-252-2439
Stillwater: Connie, 405-372-8617
Mannford- MS-101: Gail T., 918-865-8212 Gail S., 918-865-5001 Oklahoma City: Quail Creek Group Jody, 405-755-5756
Tulsa: • PACE Gary, 918-455-4143, Don, 918-355-9809, & Sandra, 918-481-9928 • MS & The Working Professional Mary, 918-740-5916
Women’s Luncheon Group Janice, 405-943-1103
Check out Oklahoma Happenings on Facebook, Twitter & Website - DAILY!
Become a Fan of the Oklahoma, NMSS Facebook page! Almost 1,800 fans! Follow us on Twitter! See what we’re tweeting about! Find the most Up To Date information on our Website – also, find links to Facebook & Twitter – www.nationalMSsociety.org/ok
Community Contacts: Ardmore: Linda, 580-223-2427
Norman: Rebecca, 405-632-2334
Atoka: Kim, 580-889-7307
Okmulgee: Karena, 918-752-0048
Bristow: Dusty, 918-367-5203
Wagoner: Larry, 918-687-3783
Enid: Janet, 580-233-7973 Lawton: Cynthia, 580-588-3876 Mustang: Tena, 405-306-7349
Please call the noted group leader or community contact for further details or information. TOLL FREE NUMBER 1 800 344 4867
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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 & Dates to Remember January 29 – Annual Meeting (Tulsa) February TBD – Couples Retreat March 5 – MS Ambassadors Training (OKC) 14 – 20 – MS Awareness Week 15 – MS Day at the Capitol (OKC)
April TBD – MS Style Movement (Tulsa) 9 – Lawton Walk MS 16 – Tulsa Walk MS 30 – Oklahoma City Walk MS TBD – Women Against MS luncheon (OKC)
MS Awareness Week is March 14-20: Let’s Move It!