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971 C. Kenmore Drive Evansville, Indiana 47714 Phone: 812-423-5943 Toll-free: 1-866-514-4312 Webpage: www.tristate.ms July 2011 Newsletter Offering support, care, and hope…right here at home! Indiana Support Group Meeting Dates Evansville, IN support group will meet Saturday, July 9th, 10:00 a.m. at the Black Buggy Restaurant, 4920 Davis Lant Drive. Join us for breakfast for you and a guest. Contacts: Nita Ruxer /812-479-3544 or Sharon & Charlie Omer/270-333-4701 Princeton, IN support group will NOT meet in July. Happy 4th of July! Contact: Alice Burkhart/812-782-3735 Tell City, IN support group will meet July 20th at The Patio at 6PM for a Dinner Program, “Hospice 101”, sponsored by SouthernCare, Inc. The Speaker will be Mary Brooks with SouthernCare, Inc. RSVP to TSMSA 1-866-514-4312 or 812-423-5943. Contacts: Terri Hasty/812-649-4013 or Gayle Taylor/812-547-4941 Washington, IN support group will meet Saturday, July 16th, 10:00 a.m. at Daviess Community Hospital. Contacts: Cindy Kalberer/ 812-254-6735 or Fran Neal at 812-259-1565. Kentucky Support Group Meeting Dates Henderson, KY support group will NOT meet in July. Happy 4th of July! Contacts: Debbie Whittington/270-827-8298 or Lori Bumgardner/270-577-5510. Owensboro, KY support group will NOT meet in July. Happy 4th of July! Contacts: Susan Reynolds/812-228-6100 or Mary Patton/270-729-4935 Illinois Support Group Meeting Dates Carmi, IL support group will NOT meet in July. Please join us at the Holiday Inn in Evansville for the “Skin Wellness Program”. Call TSMSA to RSVP, 1-866-514-4312. Contacts: Dale or Carla Shuler/618-384-9964 or TSMSA office/1-866-514-4312. Fairfield, IL support group will NOT Meet in July. We will resume again in August. Contacts: Carol Openheimer/618-842-2839 or Linda Lee/618-842-6506 The Mission of the Tri-State MS Association is to enhance the quality of life for individuals living with multiple sclerosis and their families in Southern Indiana, Southern Illinois, and Western Kentucky. Calendar of Events & Special Messages July 4 – Monday, TSMSA Office Closed - Happy Fourth of July! July 7 – Thursday, Biogen Idec, “Women Love to Chat” Dinner Program, Biaggi’s, Evansville, 6PM, Mary Kay Fink, RN, MSCN, West County MS Ctr. and Alecia Harris, Avonex Patient Advocate. RSVP to TSMSA 423-5943/1-866-514-4312. Limited Seating! July 20 – Wednesday, SouthernCare Dinner Program, Hospice 101, The Patio, 6PM 5750 E. State Road 66, Cannelton, In. RSVP to TSMSA by 7/18, 1-866-514-4312 /423- 5943. July 21 – Thursday, Newsletter Stuffing at the TSMSA Office, 11:30 AM. July 23 – Saturday, The MS Center, MS Expo, Louisville, KY, www.msexpo.org July 28– Thursday, Pfizer/ EMD Serono - Skin Wellness Dinner Program, 6PM Speaker: Neurologist, Dr. Lori Guyton, Southern Illinois Neurology. Holiday Inn (formally Marriott Hotel), Call TSMSA to RSVP -812-423-5943 / 1-866-514-4312. July 30, Saturday, Frontier Tavern, Corn Hole Tournament for TSMSA Registration - 2PM, $10 a person, Tournament starts at 3PM. Enjoy the Band that Evening! Mark your Calendars for the following dates! August 3, Wednesday, Southern Care Dinner Program, Hospice 101, Black Buggy Restaurant, 4920 Davis lant Drive, Evansville, IN 6PM RSVP to TSMSA by 9/1, 423-5943 / 1-866-514-4312. August 16 – Tuesday, Acorda Dinner Program, Evansville, IN, 6PM Speaker: Neurologist, Dr. Cary Twyman, Associates in Neurology, Lexington, KY. Holiday Inn (formally Marriott Hotel) Call TSMSA to RSVP -812-423-5943 / 1-866-514-4312. August 25 – Thursday, 2nd Annual Girls Night Out Style Show Fundraiser, Evansville Country Club, 6PM. Save the date and watch for details in August newsletter. September 27 – Tuesday, Dr. Randy Schapiro, Pfizer / EMD Serono Program October 1 – Saturday, Autumn Walk, Moreland Park, Owensboro, KY October 15 – Saturday, Basketball Fundraiser, American Baptist East Church, 10am -4pm in the gym. For information call Jay at 774-3963 November 6 – Sunday, Autumn Walk, Romain Diamond Detailing Ctr. Two More Oral Therapies for MS announced in April of This Year: Susan M. Reynolds RN, MSCN I just read a summary of the American Academy of Neurology’s Annual Meeting in Honolulu in April of this year. There were more than 500 presentations related to MS at meeting. Several presentations were related to two new oral therapies for MS that will be coming out in the next year or two. One presentation on drugs in the pipeline for MS was on Laquinimod. They now have results from a large phase III clinical trial. Another large trial of this experimental therapy is still underway. Laquinimod trials were sponsored by Teva Marion. Here are the results of the Laquinimod Trial discussed at the AAN: After two years, Laquinimod reduced the annual relapse rate in those completing the trial by 23% compared with those on placebo. Secondary outcomes included reducing the risk of disease progression by 36% and brain atrophy by 33.8%, also reducing the accumulation of brain lesions detected with MRI. The most common adverse events were back pain, abdominal pain and elevations in live enzymes, but no serious liver damage was reported. There were no serious infections reported. Biogen recently released results from a clinical trial of another experimental Multiple Sclerosis drug called BG-12. BG-12, when given twice daily cut the annualized relapse rate by 53% at 2 years compared with placebo and cut the rate of disability progression by 38%. BG-12 is a pill that would compete with Gilenya, (a new MS pill from Novartis) and Laquinimod. Based on initial data BG-12 appears to be more effective that laquinimod. BG-12 cut the annualized relapse rate by 53% and laquinimod cut the annualized relapse rate by 23%. Laquinimod reduced disability progression by 36% and BG-12 reduced disability progression by 38%. No Direct comparison can actually be made since no head to head trials have been completed. Data from another large trial of BG-12 is due to be released this year. BG-12 appears to have efficacy similar to Gilenya, but somewhat better safety and tolerability. The most common side effects from BG-12 were flushing and GI problems, ie: nausea. No other problems were identified in the trial. Biogen intends to file for approval of the drug early in 2012. It could be on the market by the end of next year. When Teva announced the results of their 2 year Allegro trial for Laquinimod they also reported that Laqunimod is no longer on the fast track for FDA approval because Novartis is already marketing its multiple sclerosis oral treatment, Gilenya. Teva expects the drug to be on the market by late 2012 or early 2013 at the latest. I just returned from the Dinner at the Holiday Inn where Dr Samuel Hunter was the speaker sponsored by Bayer Healthcare. During the question and answer part of the presentation he was asked about new drugs on the market for MS. He talked about two drugs that will be coming out very soon. The first one is Campath. Campath-1H is a potentially new treatment for Multiple Sclerosis. The scientific name for Campath-1H is alemtuzumab. It is currently undergoing Phase III trials around the world to determine whether it can help people with MS. The drug is a monoclonal antibody (Tysabri is also a monoclonal antibody) designed to target that part of the immune system which is assumed to be harming people with MS. It has been in clinical trials for a number of years, and has already been used as a treatment for B-cell chronic lymphocytic leukemia. Campath is given by IV infusion at an infusion center. It is given once and then two weeks later and then again in one year. Dr. Hunter said it my cut the relapse rate by as much as 69%. Campath will be marketed by Genzyme. Dr. Hunter also spoke about the previously mentioned drug BG-12. The scientific name is dimethyl fumarate. He said that “BG-12 turns off inflammation and has a powerful antioxidant. It has done better in clinical trials than anyone thought it would and it will be a revolutionary MS drug.” As previously stated, BG-12 is an oral drug that is to be taken twice a day. It will be marketed by Biogen. Dr. Hunter spent two hours talking and answering questions from our group. It was one of the most informative presentations I can remember having in recent months. MY MS MANAGERTM App is now available as a free download! My MS ManagerTM is MSAA's new mobile phone application, provided free of charge to individuals with multiple sclerosis or their care partner to use on their iPhone, iPad or iPod touch. This first-of-its-kind app for MS offers individuals a convenient and effective tool to manage the ever-changing course of the disease. My MS ManagerTM allows you to input and store: Comprehensive medical records Contact information of your healthcare team Descriptions of MS flare-ups, tracking their duration, frequency and intensity Information about side effects and effective treatment strategies Important details essential to staying one step ahead of your MS My MS ManagerTM is now available in the Apple App Store* and can be accessed by visiting http://itunes.apple.com/us/app/msaa-multiple-sclerosis-self/id423081614?mt=8 BEAT THE HEAT TIP Connie Romain found a Cooling Seat on QVC, www.qvc.com that is helping with the summer heat! The product is by Cool Touch Comfort, product number #F0074, price $22.50 with $7.22 shipping. Connie says it stays cool for hours! (Note: QVC is out of stock at this time, but you may be able to find them on another Website.) This may be the same one Jackie in Henderson uses to help stay cool while delivering mail! How to Apply for a Brighter Tomorrow Grant from the MS Foundation Beginning June 1st, applications will be accepted for the MSF’s Brighter Tomorrow Grant. Each year the Multiple Sclerosis Foundation makes dreams come true for individuals with multiple sclerosis across the country through the grant, providing individuals with MS with goods or services (valued at up to $1000.00 per recipient) to improve their quality of life by enhancing safety, self-sufficiency, comfort, or well-being. Recipients of the Multiple Sclerosis Foundation's Brighter Tomorrow grant have received car repairs, ramps, wheelchairs, walkers, eyeglasses, computers, appliances, televisions, furniture, therapeutic equipment, hobby supplies, retreats, and various home modifications. To qualify, a person must be 18 years of age or older and diagnosed with MS, or the parent of a minor child diagnosed with MS, and be a permanent U.S. resident. They must not have any other means of fulfilling the need they express. Applicants are asked to provide basic personal and financial information, and to write a brief essay of 100 words or less to describe how the grant would help them have A Brighter Tomorrow. Here are a few tips to help you with your grant application: Since requests for cash, medications, or items covered by MSF's other programs are not accepted, be sure you know what items the MSF's programs offer. See www.msfocus.org/programs- activities.aspx to learn more. Keep your request brief, but be sure to explain specifically what you're asking for and how it will benefit your life. Do your homework. If you can include information about the cost of the item, brands available, and where it is available, do so. If you are requesting a service, enclose an estimate or bid if possible. If you would like to apply for the grant, simply fill out our online application at www.msforcus.org, print an application, or call 888-673-6287 to receive an application by mail. Applications will also be included in the summer 2010 issue of the MSFocus. By mail, completed applications can be sent to the MSF, BTG Committee at 6520 N. Andrews Ave., Ft. Lauderdale, FL 33309. For further information on the Foundation’s grant programs, call our Program Services Department at 1-888-MSFOCUS or you can contact us by email: email@example.com Brenda Floyd the new proud owner of Lucas Oil! You did it! Hirsch Family! Thank you for another very successful rummage sale and all that you do for the Tri-State MS Association! We appreciate it! In Memory of…… In Honor of…… This is a wonderful way to acknowledge those individuals in our lives that have made a difference. Please include a note of who the donation is In Memory of or In Honor of. In Honor of Tri-State MS Association Deryl Killian Mr. & Mrs. Steve Sanner Mr. & Mrs. Donald Mills Ms. Gwen Brewer Kennedy & Associates In Honor of Rex Scott Mr. & Mrs. Paul Daniels In Memory of Marion Garrett Mr. & Mrs. Glen Stover Mr. & Mrs.A.W. Gomoll Mr. & Mrs. Bob Naas Ms. Shelly Sides & Mike Wezet Mr. & Mrs. Dennis Fowler Industrial Contractors In Memory of Jack Kirwer Mr. & Mrs. Art Eberhard Mr. & Mrs. Robert Berry Mr. & Mrs. Richard Baehl Mr. & Mrs. Scott Berry Mr. & Mrs. Aaron Taylor Mr. Waller Clements JoNell & Dave Hawes Parkview Care Center 3-11 Shift If you would like to have your birthday included in our newsletter, please send a note that includes your name, your date of birth, and your signed permission for us to print it in our newsletter. Our mailing address is 971 C. S. Kenmore Drive in Evansville, IN 47714. HAPPY BIRTHDAY TO YOU!! Kris Holder Kathy McGlothlin Andrea Slack Becky Unfried Wendy Whitaker Ethel Schuster Susie Sims Karen Quiggins Kurt Tretter Paula Elpers Send Flowers for a birthday or a special occasion! Call Zeidler’s or order on line at www.zeidlers.com and select TSMS, and the Tri-State MS Association will receive a donation. Sign up with Schnucks eScrip and support the Tri-State MS Association! Stop in or call the office and we have the cards here and will help sign you up! Or you can pick up a Schnucks eScrip Customer Card at a Schnucks store and register on line at www.escrip.com/schnucks.jsp or by calling 1-800-931-6258. The Tri-State Association appreciates your continued support ! All donations to TSMSA stay right here at home!
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